Kaiser Health News

An announcement Jan. 30 by three of the nation’s corporate titans – Amazon, Berkshire Hathaway, and JPMorgan Chase & Co. – that they are joining forces to address the high costs of employee health care has stirred the health policy pot. It immediately sent shock waves through the health sector of the stock market and reinvigorated talk about health care technology, value, and quality.

Though details regarding the undertaking are thin, the companies said in a statement that their partnership’s intent is to improve employee satisfaction and hold down costs by bringing “their scale and complementary expertise to this long-term effort.”

They plan to create an independent company, “free from profit-making incentives and constraints,” to focus on “technology solutions.”

Berkshire Hathaway CEO Warren Buffett described health care costs as “a hungry tapeworm on the American economy,” and Amazon founder and CEO Jeff Bezos said the partnership was “open-eyed about the degree of difficulty” ahead. Jamie Dimon, chairman and CEO of JPMorgan, said the results could benefit the employees of these companies and possibly all Americans.

But what does all of this mean and how can it be successful when so many other initiatives have fallen short? Kaiser Health News asked a variety of health policy experts for their thoughts on this venture, and what advice they would offer these CEOs as they go forward. Some of the advice has been edited for clarity and length.
 

Tom Miller, resident fellow, American Enterprise Institute:

“It’s great that someone theoretically with resources would try to build a better mousetrap. But it’s been difficult to do, and part of it is regulatory and competitive barriers are well-constructed in the health care sphere, which tend to make it less receptive or subject to competitive pressures.

“I welcome any new capital trying to disrupt health care. … The incumbents are comfortable and could use disruption. If Amazon has an idea, and is willing to put some money behind it, that’s wonderful. What they are willing to do other than fly low-cost providers for home visits in drones – I don’t know. They’d probably have to miniaturize them, wouldn’t they?”
 

Stan Dorn, senior fellow, Families USA:

“Number one, look at prices. America doesn’t use more health care than European countries, but we pay a lot more and that’s because of prices more than anything else. Look at hospital prices and prescription drug prices. I would also say, look to eliminate middlemen operating in darkness. I’m thinking in particular of pharmacy benefit managers. Often, the supply chain is hidden and complex, and every step along the way the middlemen are taking their share, and it winds up costing a huge amount of money.”

Bob Kocher, MD, partner, Venrock:

“It has been said that health care is complicated. One thing that is not complicated is that the way to save money is to focus on the sickest patients. And that’s the only thing that has proven to work in great primary care. I hope Amazon realizes this early and does not think that [its smart digital assistant] Alexa and apps are going to make us healthier and save any money.

“It would sure be nice if they invest in a ‘post-CPT-ICD-10-and-many-bills-per-visit’ world where we know prices, can easily know what is known about quality and experience, and have same-day service.”
 

Tracy Watts, senior partner, Mercer:

“Everyone thinks millennials want to do everything on their phones. But that’s not necessarily the case.

“[There was a recent] survey about this – specifically, millennials are the most interested in new health care offerings, but it wasn’t as much high-tech as it is convenience they are interested in – same-day appointments with a family doctor, guaranteed appointments with specialists, home visits, a wider array of services available at retail clinics. That was kind of an ‘aha’ – this kind of convenience and high-touch experience is what they’re looking for. And when you think of ‘health care of the future,’ that’s not what comes to mind.”
 

John Rother, president and CEO, National Coalition on Health Care:

“Health care is complex and expensive, so the aim should always be simplicity and affordability. Three keys to success: Manage chronic conditions recognizing the life context of the patient, emphasize primary care-based medical homes, and aggressively negotiate prescription drug costs.”

Suzanne Delbanco, executive director, Catalyst for Payment Reform:

“The biggest driver of health care costs is prices. Those are being driven up by health care providers who have consolidated and will continue to consolidate and amass more market power.

“It sounds like they [the companies] are limiting the use of health plans, but if they’re going to get into that business, they’re going to come up with the same challenges health plans face. What would be really innovative would be to build some provider systems from the ground up where they can truly get a handle on the actual costs and eliminate the market power that drives the prices up, and they can have control over their prices.”
 

Brian Marcotte, president and CEO, National Business Group on Health:

“They recognize this is [a] long-term play to get involved in this. I’d have to say, this industry is ripe for disruption.

“I think we know technology will continue to play an increasing role in how consumers access and receive health care. We’ve also learned most consumers do not touch the health care delivery system with enough frequency to ever be a sophisticated consumer. What’s intriguing about this partnership is Amazon for many consumers has become part of their day-to-day world, part of their routine. It’s intriguing to consider the possibilities of integrating health care into consumer routine.

“And I think that therein lies the opportunity. Employers offer a lot of resources to their employees to help them maximize their experience, and their No. 1 challenge is engagement.”
 

Joseph Antos, health economist, American Enterprise Institute:

“My first suggestion is to look at what other employers have done (some unsuccessfully) and consider how to adapt those ideas for the three companies and more broadly. Change incentives for providers. Change incentives for consumers. Work on ways to reduce the effects of market consolidation. The bottom line: Don’t keep doing what we are doing now. I don’t see that these three companies have enough presence in health markets to pull this off anytime soon, but perhaps this should be viewed as the private-sector version of the Affordable Care Act’s Innovation Center – except, this time, there may be some new ideas to test.”

Ceci Connolly, president and CEO, Alliance of Community Health Plans:

“We know that 5% of any population consumes 50% of the health care dollar. I would encourage this group to focus on how to better serve those individuals who need help managing multiple chronic conditions.”

David Lansky, CEO, Pacific Business Group on Health:

“The incumbent providers of services to our members are not doing as much as we need done for affordability and quality. So, we are pleased to see them go down this path. We don’t know what piece of the puzzle they will tackle.

“We know well-intended efforts over the years haven’t added up to material impact on cost and quality. I would suspect they are looking at doing something broader, more disruptive than initiatives we have tried before.

“I think across the board they have the opportunity to set high standards for the health system in whatever platform they use. These companies have a history of raising the bar. Potentially, it could be a help to all of us.”
 

Staff writers Julie Appleby, Rachel Bluth, Jenny Gold, Jay Hancock, Shefali Luthra, Jordan Rau, Julie Rovner and Chad Terhune contributed to this report. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

An announcement Jan. 30 by three of the nation’s corporate titans – Amazon, Berkshire Hathaway, and JPMorgan Chase & Co. – that they are joining forces to address the high costs of employee health care has stirred the health policy pot. It immediately sent shock waves through the health sector of the stock market and reinvigorated talk about health care technology, value, and quality.

Though details regarding the undertaking are thin, the companies said in a statement that their partnership’s intent is to improve employee satisfaction and hold down costs by bringing “their scale and complementary expertise to this long-term effort.”

They plan to create an independent company, “free from profit-making incentives and constraints,” to focus on “technology solutions.”

Berkshire Hathaway CEO Warren Buffett described health care costs as “a hungry tapeworm on the American economy,” and Amazon founder and CEO Jeff Bezos said the partnership was “open-eyed about the degree of difficulty” ahead. Jamie Dimon, chairman and CEO of JPMorgan, said the results could benefit the employees of these companies and possibly all Americans.

But what does all of this mean and how can it be successful when so many other initiatives have fallen short? Kaiser Health News asked a variety of health policy experts for their thoughts on this venture, and what advice they would offer these CEOs as they go forward. Some of the advice has been edited for clarity and length.
 

Tom Miller, resident fellow, American Enterprise Institute:

“It’s great that someone theoretically with resources would try to build a better mousetrap. But it’s been difficult to do, and part of it is regulatory and competitive barriers are well-constructed in the health care sphere, which tend to make it less receptive or subject to competitive pressures.

“I welcome any new capital trying to disrupt health care. … The incumbents are comfortable and could use disruption. If Amazon has an idea, and is willing to put some money behind it, that’s wonderful. What they are willing to do other than fly low-cost providers for home visits in drones – I don’t know. They’d probably have to miniaturize them, wouldn’t they?”
 

Stan Dorn, senior fellow, Families USA:

“Number one, look at prices. America doesn’t use more health care than European countries, but we pay a lot more and that’s because of prices more than anything else. Look at hospital prices and prescription drug prices. I would also say, look to eliminate middlemen operating in darkness. I’m thinking in particular of pharmacy benefit managers. Often, the supply chain is hidden and complex, and every step along the way the middlemen are taking their share, and it winds up costing a huge amount of money.”

Bob Kocher, MD, partner, Venrock:

“It has been said that health care is complicated. One thing that is not complicated is that the way to save money is to focus on the sickest patients. And that’s the only thing that has proven to work in great primary care. I hope Amazon realizes this early and does not think that [its smart digital assistant] Alexa and apps are going to make us healthier and save any money.

“It would sure be nice if they invest in a ‘post-CPT-ICD-10-and-many-bills-per-visit’ world where we know prices, can easily know what is known about quality and experience, and have same-day service.”
 

Tracy Watts, senior partner, Mercer:

“Everyone thinks millennials want to do everything on their phones. But that’s not necessarily the case.

“[There was a recent] survey about this – specifically, millennials are the most interested in new health care offerings, but it wasn’t as much high-tech as it is convenience they are interested in – same-day appointments with a family doctor, guaranteed appointments with specialists, home visits, a wider array of services available at retail clinics. That was kind of an ‘aha’ – this kind of convenience and high-touch experience is what they’re looking for. And when you think of ‘health care of the future,’ that’s not what comes to mind.”
 

John Rother, president and CEO, National Coalition on Health Care:

“Health care is complex and expensive, so the aim should always be simplicity and affordability. Three keys to success: Manage chronic conditions recognizing the life context of the patient, emphasize primary care-based medical homes, and aggressively negotiate prescription drug costs.”

Suzanne Delbanco, executive director, Catalyst for Payment Reform:

“The biggest driver of health care costs is prices. Those are being driven up by health care providers who have consolidated and will continue to consolidate and amass more market power.

“It sounds like they [the companies] are limiting the use of health plans, but if they’re going to get into that business, they’re going to come up with the same challenges health plans face. What would be really innovative would be to build some provider systems from the ground up where they can truly get a handle on the actual costs and eliminate the market power that drives the prices up, and they can have control over their prices.”
 

Brian Marcotte, president and CEO, National Business Group on Health:

“They recognize this is [a] long-term play to get involved in this. I’d have to say, this industry is ripe for disruption.

“I think we know technology will continue to play an increasing role in how consumers access and receive health care. We’ve also learned most consumers do not touch the health care delivery system with enough frequency to ever be a sophisticated consumer. What’s intriguing about this partnership is Amazon for many consumers has become part of their day-to-day world, part of their routine. It’s intriguing to consider the possibilities of integrating health care into consumer routine.

“And I think that therein lies the opportunity. Employers offer a lot of resources to their employees to help them maximize their experience, and their No. 1 challenge is engagement.”
 

Joseph Antos, health economist, American Enterprise Institute:

“My first suggestion is to look at what other employers have done (some unsuccessfully) and consider how to adapt those ideas for the three companies and more broadly. Change incentives for providers. Change incentives for consumers. Work on ways to reduce the effects of market consolidation. The bottom line: Don’t keep doing what we are doing now. I don’t see that these three companies have enough presence in health markets to pull this off anytime soon, but perhaps this should be viewed as the private-sector version of the Affordable Care Act’s Innovation Center – except, this time, there may be some new ideas to test.”

Ceci Connolly, president and CEO, Alliance of Community Health Plans:

“We know that 5% of any population consumes 50% of the health care dollar. I would encourage this group to focus on how to better serve those individuals who need help managing multiple chronic conditions.”

David Lansky, CEO, Pacific Business Group on Health:

“The incumbent providers of services to our members are not doing as much as we need done for affordability and quality. So, we are pleased to see them go down this path. We don’t know what piece of the puzzle they will tackle.

“We know well-intended efforts over the years haven’t added up to material impact on cost and quality. I would suspect they are looking at doing something broader, more disruptive than initiatives we have tried before.

“I think across the board they have the opportunity to set high standards for the health system in whatever platform they use. These companies have a history of raising the bar. Potentially, it could be a help to all of us.”
 

Staff writers Julie Appleby, Rachel Bluth, Jenny Gold, Jay Hancock, Shefali Luthra, Jordan Rau, Julie Rovner and Chad Terhune contributed to this report. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

An announcement Jan. 30 by three of the nation’s corporate titans – Amazon, Berkshire Hathaway, and JPMorgan Chase & Co. – that they are joining forces to address the high costs of employee health care has stirred the health policy pot. It immediately sent shock waves through the health sector of the stock market and reinvigorated talk about health care technology, value, and quality.

Though details regarding the undertaking are thin, the companies said in a statement that their partnership’s intent is to improve employee satisfaction and hold down costs by bringing “their scale and complementary expertise to this long-term effort.”

They plan to create an independent company, “free from profit-making incentives and constraints,” to focus on “technology solutions.”

Berkshire Hathaway CEO Warren Buffett described health care costs as “a hungry tapeworm on the American economy,” and Amazon founder and CEO Jeff Bezos said the partnership was “open-eyed about the degree of difficulty” ahead. Jamie Dimon, chairman and CEO of JPMorgan, said the results could benefit the employees of these companies and possibly all Americans.

But what does all of this mean and how can it be successful when so many other initiatives have fallen short? Kaiser Health News asked a variety of health policy experts for their thoughts on this venture, and what advice they would offer these CEOs as they go forward. Some of the advice has been edited for clarity and length.
 

Tom Miller, resident fellow, American Enterprise Institute:

“It’s great that someone theoretically with resources would try to build a better mousetrap. But it’s been difficult to do, and part of it is regulatory and competitive barriers are well-constructed in the health care sphere, which tend to make it less receptive or subject to competitive pressures.

“I welcome any new capital trying to disrupt health care. … The incumbents are comfortable and could use disruption. If Amazon has an idea, and is willing to put some money behind it, that’s wonderful. What they are willing to do other than fly low-cost providers for home visits in drones – I don’t know. They’d probably have to miniaturize them, wouldn’t they?”
 

Stan Dorn, senior fellow, Families USA:

“Number one, look at prices. America doesn’t use more health care than European countries, but we pay a lot more and that’s because of prices more than anything else. Look at hospital prices and prescription drug prices. I would also say, look to eliminate middlemen operating in darkness. I’m thinking in particular of pharmacy benefit managers. Often, the supply chain is hidden and complex, and every step along the way the middlemen are taking their share, and it winds up costing a huge amount of money.”

Bob Kocher, MD, partner, Venrock:

“It has been said that health care is complicated. One thing that is not complicated is that the way to save money is to focus on the sickest patients. And that’s the only thing that has proven to work in great primary care. I hope Amazon realizes this early and does not think that [its smart digital assistant] Alexa and apps are going to make us healthier and save any money.

“It would sure be nice if they invest in a ‘post-CPT-ICD-10-and-many-bills-per-visit’ world where we know prices, can easily know what is known about quality and experience, and have same-day service.”
 

Tracy Watts, senior partner, Mercer:

“Everyone thinks millennials want to do everything on their phones. But that’s not necessarily the case.

“[There was a recent] survey about this – specifically, millennials are the most interested in new health care offerings, but it wasn’t as much high-tech as it is convenience they are interested in – same-day appointments with a family doctor, guaranteed appointments with specialists, home visits, a wider array of services available at retail clinics. That was kind of an ‘aha’ – this kind of convenience and high-touch experience is what they’re looking for. And when you think of ‘health care of the future,’ that’s not what comes to mind.”
 

John Rother, president and CEO, National Coalition on Health Care:

“Health care is complex and expensive, so the aim should always be simplicity and affordability. Three keys to success: Manage chronic conditions recognizing the life context of the patient, emphasize primary care-based medical homes, and aggressively negotiate prescription drug costs.”

Suzanne Delbanco, executive director, Catalyst for Payment Reform:

“The biggest driver of health care costs is prices. Those are being driven up by health care providers who have consolidated and will continue to consolidate and amass more market power.

“It sounds like they [the companies] are limiting the use of health plans, but if they’re going to get into that business, they’re going to come up with the same challenges health plans face. What would be really innovative would be to build some provider systems from the ground up where they can truly get a handle on the actual costs and eliminate the market power that drives the prices up, and they can have control over their prices.”
 

Brian Marcotte, president and CEO, National Business Group on Health:

“They recognize this is [a] long-term play to get involved in this. I’d have to say, this industry is ripe for disruption.

“I think we know technology will continue to play an increasing role in how consumers access and receive health care. We’ve also learned most consumers do not touch the health care delivery system with enough frequency to ever be a sophisticated consumer. What’s intriguing about this partnership is Amazon for many consumers has become part of their day-to-day world, part of their routine. It’s intriguing to consider the possibilities of integrating health care into consumer routine.

“And I think that therein lies the opportunity. Employers offer a lot of resources to their employees to help them maximize their experience, and their No. 1 challenge is engagement.”
 

Joseph Antos, health economist, American Enterprise Institute:

“My first suggestion is to look at what other employers have done (some unsuccessfully) and consider how to adapt those ideas for the three companies and more broadly. Change incentives for providers. Change incentives for consumers. Work on ways to reduce the effects of market consolidation. The bottom line: Don’t keep doing what we are doing now. I don’t see that these three companies have enough presence in health markets to pull this off anytime soon, but perhaps this should be viewed as the private-sector version of the Affordable Care Act’s Innovation Center – except, this time, there may be some new ideas to test.”

Ceci Connolly, president and CEO, Alliance of Community Health Plans:

“We know that 5% of any population consumes 50% of the health care dollar. I would encourage this group to focus on how to better serve those individuals who need help managing multiple chronic conditions.”

David Lansky, CEO, Pacific Business Group on Health:

“The incumbent providers of services to our members are not doing as much as we need done for affordability and quality. So, we are pleased to see them go down this path. We don’t know what piece of the puzzle they will tackle.

“We know well-intended efforts over the years haven’t added up to material impact on cost and quality. I would suspect they are looking at doing something broader, more disruptive than initiatives we have tried before.

“I think across the board they have the opportunity to set high standards for the health system in whatever platform they use. These companies have a history of raising the bar. Potentially, it could be a help to all of us.”
 

Staff writers Julie Appleby, Rachel Bluth, Jenny Gold, Jay Hancock, Shefali Luthra, Jordan Rau, Julie Rovner and Chad Terhune contributed to this report. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

A Twitter battle over the size of each “nuclear button” possessed by President Donald Trump and North Korea’s Kim Jong-un has spiked sales of a drug that protects against radiation poisoning.

Troy Jones, who runs the website www.nukepills.com, said demand for potassium iodide soared last week, after President Trump tweeted that he had a “much bigger & more powerful” button than Kim – a statement that raised new fears about an escalating threat of nuclear war.

“North Korean Leader Kim Jong Un just stated that the ‘Nuclear Button is on his desk at all times.’ Will someone from his depleted and food starved regime please inform him that I too have a Nuclear Button, but it is a much bigger & more powerful one than his, and my Button works!”

– Donald J. Trump (@realDonaldTrump) Jan. 3, 2018

“On Jan. 2, I basically got in a month’s supply of potassium iodide and I sold out in 48 hours,” said Mr. Jones, who is a top U.S. distributor of the drug. His Mooresville, N.C., firm sells all three types of the product approved by the Food and Drug Administration. No prescription is required.

In that 2-day period, Jones said, he shipped about 140,000 doses of potassium iodide (KI). Without the tweet, he typically would have sent out about 8,400 doses to private individuals, he said.

Mr. Jones also sells to government agencies, hospitals and universities, which aren’t included in that count.

Alan Morris, president of the Williamsburg, Va.–based pharmaceutical firm Anbex, which also distributes KI, said he’s seen a bump in demand, too.

“We are a wonderful barometer of the level of anxiety in the country,” he said.

A spokeswoman for a third firm, Recipharm, which sells low-dose KI tablets, declined to comment on recent sales.

Mr. Jones said this is not the first time in recent months that jitters over growing nuclear tensions have boosted sales of KI, which comes in tablet and liquid form and should be taken within hours of exposure to radiation.

It’s the same substance often added to table salt to provide trace amounts of iodine that ensure proper thyroid function. Mr. Jones sells his tablets for about 65 cents each, though they’re cheaper in bulk. Mr. Morris said he sells the pills to the federal government for about 1 cent apiece.

Yet, neither the FDA nor the Centers for Disease Control and Prevention recommends that families stockpile potassium iodide as an antidote against nuclear emergency.

“KI cannot protect the body from radioactive elements other than radioactive iodine – if radioactive iodine is not present, taking KI is not protective and could cause harm,” the CDC’s website states.

The drug, which has a shelf life of up to 7 years, protects against absorption of radioactive iodine into the thyroid. But that means that it protects only the thyroid, not other organs or body systems, said Anupam Kotwal, MBBS, an endocrinologist speaking for the Endocrine Society.

“This is kind of mostly to protect children, people ages less than 18 and pregnant women,” Dr. Kotwal said.

States with nuclear reactors and populations within a 10-mile radius of the reactors stockpile potassium iodide to distribute in case of an emergency, according to the Nuclear Regulatory Commission. An accident involving one of those reactors is far more likely than any nuclear threat from Kim Jong-un, Anbex’s Mr. Morris said.

Still, the escalating war of words between the United States and North Korea has unsettled many people, Mr. Jones said. Although some of his buyers may hold what could be regarded as fringe views, many others do not.

“It’s moms and dads,” he said. “They’re worried and they find that these products exist.”

Such concern was underscored last week, when the CDC announced a briefing on the “Public Health Response to a Nuclear Detonation.” One of the planned sessions is titled “Preparing for the Unthinkable.”

Hundreds of people shared the announcement on social media, with varying degrees of alarm that it could have been inspired by the presidential tweet.

A CDC spokeswoman, however, said the briefing had been “in the works” since last spring. The agency held a similar session on nuclear disaster preparedness in 2010.

“CDC has been active in this area for several years, including back in 2011, when the Fukushima nuclear power plant was damaged during a major earthquake,” the agency’s Kathy Harben said in an email.

Indeed, Jones saw big spikes in potassium iodide sales after the Fukushima Daichii disaster, after North Korea started launching missiles – and after President Trump was elected.

“I now follow his Twitter feed just to gauge the day’s sales and determine how much to stock and how many radiation emergency kits to prep for the coming week,” Mr. Jones said, adding later: “I don’t think he intended to have this kind of effect.”
 

KHN’s coverage of these topics is supported by Laura and John Arnold Foundation and Gordon and Betty Moore Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

A Twitter battle over the size of each “nuclear button” possessed by President Donald Trump and North Korea’s Kim Jong-un has spiked sales of a drug that protects against radiation poisoning.

Troy Jones, who runs the website www.nukepills.com, said demand for potassium iodide soared last week, after President Trump tweeted that he had a “much bigger & more powerful” button than Kim – a statement that raised new fears about an escalating threat of nuclear war.

“North Korean Leader Kim Jong Un just stated that the ‘Nuclear Button is on his desk at all times.’ Will someone from his depleted and food starved regime please inform him that I too have a Nuclear Button, but it is a much bigger & more powerful one than his, and my Button works!”

– Donald J. Trump (@realDonaldTrump) Jan. 3, 2018

“On Jan. 2, I basically got in a month’s supply of potassium iodide and I sold out in 48 hours,” said Mr. Jones, who is a top U.S. distributor of the drug. His Mooresville, N.C., firm sells all three types of the product approved by the Food and Drug Administration. No prescription is required.

In that 2-day period, Jones said, he shipped about 140,000 doses of potassium iodide (KI). Without the tweet, he typically would have sent out about 8,400 doses to private individuals, he said.

Mr. Jones also sells to government agencies, hospitals and universities, which aren’t included in that count.

Alan Morris, president of the Williamsburg, Va.–based pharmaceutical firm Anbex, which also distributes KI, said he’s seen a bump in demand, too.

“We are a wonderful barometer of the level of anxiety in the country,” he said.

A spokeswoman for a third firm, Recipharm, which sells low-dose KI tablets, declined to comment on recent sales.

Mr. Jones said this is not the first time in recent months that jitters over growing nuclear tensions have boosted sales of KI, which comes in tablet and liquid form and should be taken within hours of exposure to radiation.

It’s the same substance often added to table salt to provide trace amounts of iodine that ensure proper thyroid function. Mr. Jones sells his tablets for about 65 cents each, though they’re cheaper in bulk. Mr. Morris said he sells the pills to the federal government for about 1 cent apiece.

Yet, neither the FDA nor the Centers for Disease Control and Prevention recommends that families stockpile potassium iodide as an antidote against nuclear emergency.

“KI cannot protect the body from radioactive elements other than radioactive iodine – if radioactive iodine is not present, taking KI is not protective and could cause harm,” the CDC’s website states.

The drug, which has a shelf life of up to 7 years, protects against absorption of radioactive iodine into the thyroid. But that means that it protects only the thyroid, not other organs or body systems, said Anupam Kotwal, MBBS, an endocrinologist speaking for the Endocrine Society.

“This is kind of mostly to protect children, people ages less than 18 and pregnant women,” Dr. Kotwal said.

States with nuclear reactors and populations within a 10-mile radius of the reactors stockpile potassium iodide to distribute in case of an emergency, according to the Nuclear Regulatory Commission. An accident involving one of those reactors is far more likely than any nuclear threat from Kim Jong-un, Anbex’s Mr. Morris said.

Still, the escalating war of words between the United States and North Korea has unsettled many people, Mr. Jones said. Although some of his buyers may hold what could be regarded as fringe views, many others do not.

“It’s moms and dads,” he said. “They’re worried and they find that these products exist.”

Such concern was underscored last week, when the CDC announced a briefing on the “Public Health Response to a Nuclear Detonation.” One of the planned sessions is titled “Preparing for the Unthinkable.”

Hundreds of people shared the announcement on social media, with varying degrees of alarm that it could have been inspired by the presidential tweet.

A CDC spokeswoman, however, said the briefing had been “in the works” since last spring. The agency held a similar session on nuclear disaster preparedness in 2010.

“CDC has been active in this area for several years, including back in 2011, when the Fukushima nuclear power plant was damaged during a major earthquake,” the agency’s Kathy Harben said in an email.

Indeed, Jones saw big spikes in potassium iodide sales after the Fukushima Daichii disaster, after North Korea started launching missiles – and after President Trump was elected.

“I now follow his Twitter feed just to gauge the day’s sales and determine how much to stock and how many radiation emergency kits to prep for the coming week,” Mr. Jones said, adding later: “I don’t think he intended to have this kind of effect.”
 

KHN’s coverage of these topics is supported by Laura and John Arnold Foundation and Gordon and Betty Moore Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

A Twitter battle over the size of each “nuclear button” possessed by President Donald Trump and North Korea’s Kim Jong-un has spiked sales of a drug that protects against radiation poisoning.

Troy Jones, who runs the website www.nukepills.com, said demand for potassium iodide soared last week, after President Trump tweeted that he had a “much bigger & more powerful” button than Kim – a statement that raised new fears about an escalating threat of nuclear war.

“North Korean Leader Kim Jong Un just stated that the ‘Nuclear Button is on his desk at all times.’ Will someone from his depleted and food starved regime please inform him that I too have a Nuclear Button, but it is a much bigger & more powerful one than his, and my Button works!”

– Donald J. Trump (@realDonaldTrump) Jan. 3, 2018

“On Jan. 2, I basically got in a month’s supply of potassium iodide and I sold out in 48 hours,” said Mr. Jones, who is a top U.S. distributor of the drug. His Mooresville, N.C., firm sells all three types of the product approved by the Food and Drug Administration. No prescription is required.

In that 2-day period, Jones said, he shipped about 140,000 doses of potassium iodide (KI). Without the tweet, he typically would have sent out about 8,400 doses to private individuals, he said.

Mr. Jones also sells to government agencies, hospitals and universities, which aren’t included in that count.

Alan Morris, president of the Williamsburg, Va.–based pharmaceutical firm Anbex, which also distributes KI, said he’s seen a bump in demand, too.

“We are a wonderful barometer of the level of anxiety in the country,” he said.

A spokeswoman for a third firm, Recipharm, which sells low-dose KI tablets, declined to comment on recent sales.

Mr. Jones said this is not the first time in recent months that jitters over growing nuclear tensions have boosted sales of KI, which comes in tablet and liquid form and should be taken within hours of exposure to radiation.

It’s the same substance often added to table salt to provide trace amounts of iodine that ensure proper thyroid function. Mr. Jones sells his tablets for about 65 cents each, though they’re cheaper in bulk. Mr. Morris said he sells the pills to the federal government for about 1 cent apiece.

Yet, neither the FDA nor the Centers for Disease Control and Prevention recommends that families stockpile potassium iodide as an antidote against nuclear emergency.

“KI cannot protect the body from radioactive elements other than radioactive iodine – if radioactive iodine is not present, taking KI is not protective and could cause harm,” the CDC’s website states.

The drug, which has a shelf life of up to 7 years, protects against absorption of radioactive iodine into the thyroid. But that means that it protects only the thyroid, not other organs or body systems, said Anupam Kotwal, MBBS, an endocrinologist speaking for the Endocrine Society.

“This is kind of mostly to protect children, people ages less than 18 and pregnant women,” Dr. Kotwal said.

States with nuclear reactors and populations within a 10-mile radius of the reactors stockpile potassium iodide to distribute in case of an emergency, according to the Nuclear Regulatory Commission. An accident involving one of those reactors is far more likely than any nuclear threat from Kim Jong-un, Anbex’s Mr. Morris said.

Still, the escalating war of words between the United States and North Korea has unsettled many people, Mr. Jones said. Although some of his buyers may hold what could be regarded as fringe views, many others do not.

“It’s moms and dads,” he said. “They’re worried and they find that these products exist.”

Such concern was underscored last week, when the CDC announced a briefing on the “Public Health Response to a Nuclear Detonation.” One of the planned sessions is titled “Preparing for the Unthinkable.”

Hundreds of people shared the announcement on social media, with varying degrees of alarm that it could have been inspired by the presidential tweet.

A CDC spokeswoman, however, said the briefing had been “in the works” since last spring. The agency held a similar session on nuclear disaster preparedness in 2010.

“CDC has been active in this area for several years, including back in 2011, when the Fukushima nuclear power plant was damaged during a major earthquake,” the agency’s Kathy Harben said in an email.

Indeed, Jones saw big spikes in potassium iodide sales after the Fukushima Daichii disaster, after North Korea started launching missiles – and after President Trump was elected.

“I now follow his Twitter feed just to gauge the day’s sales and determine how much to stock and how many radiation emergency kits to prep for the coming week,” Mr. Jones said, adding later: “I don’t think he intended to have this kind of effect.”
 

KHN’s coverage of these topics is supported by Laura and John Arnold Foundation and Gordon and Betty Moore Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

The Trump administration early on Jan. 11 initiated a pivotal change in the Medicaid program, announcing that for the first time the federal government will allow states to test work requirements as a condition for coverage.

The announcement came in a 10-page memo with detailed directions about how states can reshape the federal-state health program for low-income people.

The document says who should be excluded from the new work requirements – including children and people being treated for opioid abuse – and offers suggestions as to what counts as “work.” Besides employment, it can include job training, volunteering, or caring for a close relative.

“Medicaid needs to be more flexible so that states can best address the needs of this population,” Seema Verma, administrator of the Centers for Medicare & Medicaid Services, said in a press release. “Our fundamental goal is to make a positive and lasting difference in the health and wellness of our beneficiaries.”

Adding a work requirement to Medicaid would mark one of the biggest changes to the program since its inception in 1966. It is likely to prompt a lawsuit from patient advocacy groups, which claim the requirement is inconsistent with Medicaid’s objectives and would require an act of Congress.

Republicans have been pushing for the change since the Affordable Care Act added millions of so called “able-bodied” adults to Medicaid. It allowed states to provide coverage to anyone earning up to 138% of the federal poverty level (about $16,600 for an individual).

The Obama administration turned down several state requests to add a work requirement.

Ten states have applied for a federal waiver to add a work requirement – Arizona, Arkansas, Indiana, Kansas, Kentucky, Maine, New Hampshire, North Carolina, Utah and Wisconsin. Officials in several other states have said they are interested in the idea.

An HHS official, who spoke on the condition of anonymity because the official had not been authorized to discuss the developments, said the agency may approve Kentucky’s request as early asJan. 12. Gov. Matt Bevin, a Republican, first sought to add such a provision in 2016. The current request would require able-bodied adults without dependents to work at least 20 hours a week.

Kentucky, which has some of the poorest counties in the country, has seen its Medicaid enrollment double in the past 3 years after the state expanded eligibility under the ACA.

While more than 74 million people are enrolled in Medicaid, only a small fraction would be affected by the work requirement. That’s because children – who make up nearly half of Medicaid enrollees – are excluded. So are the more than 10 million people on Medicaid because they have a disability.

More than 4 in 10 adults with Medicaid coverage already work full time, and most others either go to school, take care of a relative, or are too sick to work.

Still, critics fear a work requirement could have a chilling effect on people signing up for Medicaid or make it harder for people to get coverage.

But work requirements have strong public backing. About 70% of Americans say they support states imposing a work requirement on non-disabled adults, according to a Kaiser Family Foundation poll last year.

The Trump administration, along with many Republican leaders in Congress, has long supported such a move. The failed efforts in the House to replace Obamacare included a work requirement for Medicaid.

In its guidance to states, CMS said they should consider how some communities have high unemployment rates and whether enrollees need to care for young children and elderly families.

CMS also advised states to make work requirements for Medicaid similar than those used with food stamps to “reduce the burden on both states and beneficiaries.”

“This new guidance paves the way for states to demonstrate how their ideas will improve the health of Medicaid beneficiaries, as well as potentially improve their economic well-being,” Brian Neale, CMS deputy administrator and director for the Center for Medicaid and CHIP Services, said in the press release.

Ms. Verma, who has said she doesn’t think Medicaid should become a way of life for people who are not disabled, said the new guidance shows how the administration is trying to give states more flexibility in running Medicaid.

“Our policy guidance was in response to states that asked us for the flexibility they need to improve their programs and to help people in achieving greater well-being and self-sufficiency,” she said.

Ms. Verma, who worked with Kentucky and Indiana on their work requirement waivers as a health consultant before joining the Trump administration, recused herself from the decision on those states’ waiver requests.


Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

The Trump administration early on Jan. 11 initiated a pivotal change in the Medicaid program, announcing that for the first time the federal government will allow states to test work requirements as a condition for coverage.

The announcement came in a 10-page memo with detailed directions about how states can reshape the federal-state health program for low-income people.

The document says who should be excluded from the new work requirements – including children and people being treated for opioid abuse – and offers suggestions as to what counts as “work.” Besides employment, it can include job training, volunteering, or caring for a close relative.

“Medicaid needs to be more flexible so that states can best address the needs of this population,” Seema Verma, administrator of the Centers for Medicare & Medicaid Services, said in a press release. “Our fundamental goal is to make a positive and lasting difference in the health and wellness of our beneficiaries.”

Adding a work requirement to Medicaid would mark one of the biggest changes to the program since its inception in 1966. It is likely to prompt a lawsuit from patient advocacy groups, which claim the requirement is inconsistent with Medicaid’s objectives and would require an act of Congress.

Republicans have been pushing for the change since the Affordable Care Act added millions of so called “able-bodied” adults to Medicaid. It allowed states to provide coverage to anyone earning up to 138% of the federal poverty level (about $16,600 for an individual).

The Obama administration turned down several state requests to add a work requirement.

Ten states have applied for a federal waiver to add a work requirement – Arizona, Arkansas, Indiana, Kansas, Kentucky, Maine, New Hampshire, North Carolina, Utah and Wisconsin. Officials in several other states have said they are interested in the idea.

An HHS official, who spoke on the condition of anonymity because the official had not been authorized to discuss the developments, said the agency may approve Kentucky’s request as early asJan. 12. Gov. Matt Bevin, a Republican, first sought to add such a provision in 2016. The current request would require able-bodied adults without dependents to work at least 20 hours a week.

Kentucky, which has some of the poorest counties in the country, has seen its Medicaid enrollment double in the past 3 years after the state expanded eligibility under the ACA.

While more than 74 million people are enrolled in Medicaid, only a small fraction would be affected by the work requirement. That’s because children – who make up nearly half of Medicaid enrollees – are excluded. So are the more than 10 million people on Medicaid because they have a disability.

More than 4 in 10 adults with Medicaid coverage already work full time, and most others either go to school, take care of a relative, or are too sick to work.

Still, critics fear a work requirement could have a chilling effect on people signing up for Medicaid or make it harder for people to get coverage.

But work requirements have strong public backing. About 70% of Americans say they support states imposing a work requirement on non-disabled adults, according to a Kaiser Family Foundation poll last year.

The Trump administration, along with many Republican leaders in Congress, has long supported such a move. The failed efforts in the House to replace Obamacare included a work requirement for Medicaid.

In its guidance to states, CMS said they should consider how some communities have high unemployment rates and whether enrollees need to care for young children and elderly families.

CMS also advised states to make work requirements for Medicaid similar than those used with food stamps to “reduce the burden on both states and beneficiaries.”

“This new guidance paves the way for states to demonstrate how their ideas will improve the health of Medicaid beneficiaries, as well as potentially improve their economic well-being,” Brian Neale, CMS deputy administrator and director for the Center for Medicaid and CHIP Services, said in the press release.

Ms. Verma, who has said she doesn’t think Medicaid should become a way of life for people who are not disabled, said the new guidance shows how the administration is trying to give states more flexibility in running Medicaid.

“Our policy guidance was in response to states that asked us for the flexibility they need to improve their programs and to help people in achieving greater well-being and self-sufficiency,” she said.

Ms. Verma, who worked with Kentucky and Indiana on their work requirement waivers as a health consultant before joining the Trump administration, recused herself from the decision on those states’ waiver requests.


Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

The Trump administration early on Jan. 11 initiated a pivotal change in the Medicaid program, announcing that for the first time the federal government will allow states to test work requirements as a condition for coverage.

The announcement came in a 10-page memo with detailed directions about how states can reshape the federal-state health program for low-income people.

The document says who should be excluded from the new work requirements – including children and people being treated for opioid abuse – and offers suggestions as to what counts as “work.” Besides employment, it can include job training, volunteering, or caring for a close relative.

“Medicaid needs to be more flexible so that states can best address the needs of this population,” Seema Verma, administrator of the Centers for Medicare & Medicaid Services, said in a press release. “Our fundamental goal is to make a positive and lasting difference in the health and wellness of our beneficiaries.”

Adding a work requirement to Medicaid would mark one of the biggest changes to the program since its inception in 1966. It is likely to prompt a lawsuit from patient advocacy groups, which claim the requirement is inconsistent with Medicaid’s objectives and would require an act of Congress.

Republicans have been pushing for the change since the Affordable Care Act added millions of so called “able-bodied” adults to Medicaid. It allowed states to provide coverage to anyone earning up to 138% of the federal poverty level (about $16,600 for an individual).

The Obama administration turned down several state requests to add a work requirement.

Ten states have applied for a federal waiver to add a work requirement – Arizona, Arkansas, Indiana, Kansas, Kentucky, Maine, New Hampshire, North Carolina, Utah and Wisconsin. Officials in several other states have said they are interested in the idea.

An HHS official, who spoke on the condition of anonymity because the official had not been authorized to discuss the developments, said the agency may approve Kentucky’s request as early asJan. 12. Gov. Matt Bevin, a Republican, first sought to add such a provision in 2016. The current request would require able-bodied adults without dependents to work at least 20 hours a week.

Kentucky, which has some of the poorest counties in the country, has seen its Medicaid enrollment double in the past 3 years after the state expanded eligibility under the ACA.

While more than 74 million people are enrolled in Medicaid, only a small fraction would be affected by the work requirement. That’s because children – who make up nearly half of Medicaid enrollees – are excluded. So are the more than 10 million people on Medicaid because they have a disability.

More than 4 in 10 adults with Medicaid coverage already work full time, and most others either go to school, take care of a relative, or are too sick to work.

Still, critics fear a work requirement could have a chilling effect on people signing up for Medicaid or make it harder for people to get coverage.

But work requirements have strong public backing. About 70% of Americans say they support states imposing a work requirement on non-disabled adults, according to a Kaiser Family Foundation poll last year.

The Trump administration, along with many Republican leaders in Congress, has long supported such a move. The failed efforts in the House to replace Obamacare included a work requirement for Medicaid.

In its guidance to states, CMS said they should consider how some communities have high unemployment rates and whether enrollees need to care for young children and elderly families.

CMS also advised states to make work requirements for Medicaid similar than those used with food stamps to “reduce the burden on both states and beneficiaries.”

“This new guidance paves the way for states to demonstrate how their ideas will improve the health of Medicaid beneficiaries, as well as potentially improve their economic well-being,” Brian Neale, CMS deputy administrator and director for the Center for Medicaid and CHIP Services, said in the press release.

Ms. Verma, who has said she doesn’t think Medicaid should become a way of life for people who are not disabled, said the new guidance shows how the administration is trying to give states more flexibility in running Medicaid.

“Our policy guidance was in response to states that asked us for the flexibility they need to improve their programs and to help people in achieving greater well-being and self-sufficiency,” she said.

Ms. Verma, who worked with Kentucky and Indiana on their work requirement waivers as a health consultant before joining the Trump administration, recused herself from the decision on those states’ waiver requests.


Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Some states are facing a mid-January loss of funding for their Children’s Health Insurance Program (CHIP) despite spending approved by Congress in late December that was expected to keep the program running for 3 months, federal health officials said Jan. 5.

The $2.85 billion was supposed to fund states’ CHIP programs through March 31. But some states will start running out of money after Jan. 19, according to the Centers for Medicare & Medicaid Services. The CMS did not say which states are likely to be affected first.

The latest estimates for when federal funding runs out could cause states to soon freeze enrollment and alert parents that the program could soon shut down.

The CHIP program provides health coverage to 9 million children from lower-income households that make too much money to qualify for Medicaid. Its federal authorization ended Oct. 1, and states were then forced to use unspent funds to carry them over while the House and Senate try to agree on a way to continue funding.

Congress extended funding on Dec. 21 and touted that states would have money to last while Congress worked on a long-term funding solution. But the CMS said on Jan. 5 it could only guarantee that the appropriation will be enough to fund all states through Jan. 19.

The CMS said the agency is in discussions with states to help deal with the funding shortfall.

“The funding … should carry all the states through January 19th based upon best estimates of state expenditures to date,” said CMS spokesman Johnathan Monroe. “However, due to a number of variables relating to state expenditure rates and reporting, we are unable to say with certainty whether there is enough funding for every state to continue its CHIP program through March 31, 2018.”

“States need to know whether they will need to find additional funding for children covered under the Medicaid CHIP program at a much lower federal matching rate, send letters to families, and re-program their eligibility systems,” said Lisa Dubay, a senior fellow at the Urban Institute. “Of course, the implications for families with CHIP-eligible children cannot be understated: Parents are worried that their children will lose coverage. And they should be.”

Although the program enjoys bipartisan support on Capitol Hill, the Republican-controlled House and Senate have for months been unable to agree on how to continue funding CHIP, which began in 1997.

The House plan includes a controversial funding provision – opposed by Democrats -– that takes millions of dollars from the Affordable Care Act’s Prevention and Public Health Fund and increases Medicare premiums for some higher-earning beneficiaries.

The Senate Finance Committee reached an agreement to extend the program for 5 years but did not unite around a plan on funding.

Before the CHIP funding extension on Dec. 21, Alabama said it would freeze enrollment Jan. 1 and shut down the program Jan. 31. Colorado, Connecticut, and Virginia sent letters to CHIP families warning that the program could soon end.

After the funding extension, Alabama put a hold on shutting down CHIP.

“Some states will begin exhausting all available funding earlier than others,” a CMS official said Jan. 5. “But the exact timing of when states will exhaust their funding is a moving target.”

Bruce Lesley, president of First Focus, a child advocacy group, said Congress should have known its short-term funding plan was not enough.

“The math never worked on the patch, as it only bought a few weeks,” he said. “Congress must get this finalized before Jan. 19.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente. KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Some states are facing a mid-January loss of funding for their Children’s Health Insurance Program (CHIP) despite spending approved by Congress in late December that was expected to keep the program running for 3 months, federal health officials said Jan. 5.

The $2.85 billion was supposed to fund states’ CHIP programs through March 31. But some states will start running out of money after Jan. 19, according to the Centers for Medicare & Medicaid Services. The CMS did not say which states are likely to be affected first.

The latest estimates for when federal funding runs out could cause states to soon freeze enrollment and alert parents that the program could soon shut down.

The CHIP program provides health coverage to 9 million children from lower-income households that make too much money to qualify for Medicaid. Its federal authorization ended Oct. 1, and states were then forced to use unspent funds to carry them over while the House and Senate try to agree on a way to continue funding.

Congress extended funding on Dec. 21 and touted that states would have money to last while Congress worked on a long-term funding solution. But the CMS said on Jan. 5 it could only guarantee that the appropriation will be enough to fund all states through Jan. 19.

The CMS said the agency is in discussions with states to help deal with the funding shortfall.

“The funding … should carry all the states through January 19th based upon best estimates of state expenditures to date,” said CMS spokesman Johnathan Monroe. “However, due to a number of variables relating to state expenditure rates and reporting, we are unable to say with certainty whether there is enough funding for every state to continue its CHIP program through March 31, 2018.”

“States need to know whether they will need to find additional funding for children covered under the Medicaid CHIP program at a much lower federal matching rate, send letters to families, and re-program their eligibility systems,” said Lisa Dubay, a senior fellow at the Urban Institute. “Of course, the implications for families with CHIP-eligible children cannot be understated: Parents are worried that their children will lose coverage. And they should be.”

Although the program enjoys bipartisan support on Capitol Hill, the Republican-controlled House and Senate have for months been unable to agree on how to continue funding CHIP, which began in 1997.

The House plan includes a controversial funding provision – opposed by Democrats -– that takes millions of dollars from the Affordable Care Act’s Prevention and Public Health Fund and increases Medicare premiums for some higher-earning beneficiaries.

The Senate Finance Committee reached an agreement to extend the program for 5 years but did not unite around a plan on funding.

Before the CHIP funding extension on Dec. 21, Alabama said it would freeze enrollment Jan. 1 and shut down the program Jan. 31. Colorado, Connecticut, and Virginia sent letters to CHIP families warning that the program could soon end.

After the funding extension, Alabama put a hold on shutting down CHIP.

“Some states will begin exhausting all available funding earlier than others,” a CMS official said Jan. 5. “But the exact timing of when states will exhaust their funding is a moving target.”

Bruce Lesley, president of First Focus, a child advocacy group, said Congress should have known its short-term funding plan was not enough.

“The math never worked on the patch, as it only bought a few weeks,” he said. “Congress must get this finalized before Jan. 19.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente. KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Some states are facing a mid-January loss of funding for their Children’s Health Insurance Program (CHIP) despite spending approved by Congress in late December that was expected to keep the program running for 3 months, federal health officials said Jan. 5.

The $2.85 billion was supposed to fund states’ CHIP programs through March 31. But some states will start running out of money after Jan. 19, according to the Centers for Medicare & Medicaid Services. The CMS did not say which states are likely to be affected first.

The latest estimates for when federal funding runs out could cause states to soon freeze enrollment and alert parents that the program could soon shut down.

The CHIP program provides health coverage to 9 million children from lower-income households that make too much money to qualify for Medicaid. Its federal authorization ended Oct. 1, and states were then forced to use unspent funds to carry them over while the House and Senate try to agree on a way to continue funding.

Congress extended funding on Dec. 21 and touted that states would have money to last while Congress worked on a long-term funding solution. But the CMS said on Jan. 5 it could only guarantee that the appropriation will be enough to fund all states through Jan. 19.

The CMS said the agency is in discussions with states to help deal with the funding shortfall.

“The funding … should carry all the states through January 19th based upon best estimates of state expenditures to date,” said CMS spokesman Johnathan Monroe. “However, due to a number of variables relating to state expenditure rates and reporting, we are unable to say with certainty whether there is enough funding for every state to continue its CHIP program through March 31, 2018.”

“States need to know whether they will need to find additional funding for children covered under the Medicaid CHIP program at a much lower federal matching rate, send letters to families, and re-program their eligibility systems,” said Lisa Dubay, a senior fellow at the Urban Institute. “Of course, the implications for families with CHIP-eligible children cannot be understated: Parents are worried that their children will lose coverage. And they should be.”

Although the program enjoys bipartisan support on Capitol Hill, the Republican-controlled House and Senate have for months been unable to agree on how to continue funding CHIP, which began in 1997.

The House plan includes a controversial funding provision – opposed by Democrats -– that takes millions of dollars from the Affordable Care Act’s Prevention and Public Health Fund and increases Medicare premiums for some higher-earning beneficiaries.

The Senate Finance Committee reached an agreement to extend the program for 5 years but did not unite around a plan on funding.

Before the CHIP funding extension on Dec. 21, Alabama said it would freeze enrollment Jan. 1 and shut down the program Jan. 31. Colorado, Connecticut, and Virginia sent letters to CHIP families warning that the program could soon end.

After the funding extension, Alabama put a hold on shutting down CHIP.

“Some states will begin exhausting all available funding earlier than others,” a CMS official said Jan. 5. “But the exact timing of when states will exhaust their funding is a moving target.”

Bruce Lesley, president of First Focus, a child advocacy group, said Congress should have known its short-term funding plan was not enough.

“The math never worked on the patch, as it only bought a few weeks,” he said. “Congress must get this finalized before Jan. 19.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente. KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

Two months past its deadline, Congress has yet to fund the Children’s Health Insurance Program, leaving several states scrambling for cash.

Lawmakers grappling with the failed repeal of the Affordable Care Act allowed authorization of the program to lapse on Sept. 30. Although CHIP has always had broad bipartisan support, the House and Senate cannot agree on how to continue federal funding. And the Trump administration has been mostly silent on the issue.

CHIP benefits 9 million children nationwide and 370,000 pregnant women a year. It helps lower- and middle-income families who otherwise earn too much to be eligible for Medicaid. Like Medicaid, CHIP is paid for with state and federal funds, but the federal government covers close to 90% of the cost.

To keep the program going, states with unspent federal CHIP money have seen their excess sent to a handful of states running low on funds. But that is a bureaucratic Band-Aid; some large states are warning families they may not be able to rely on CHIP for much longer.

All told, the CMS has given out $1.2 billion in redistribution dollars since October. To keep the program going would cost the federal government $8.5 billion over 5 years, the Congressional Budget Office estimates.

Dec. 2 marked the 25th anniversary of Pennsylvania approving the original CHIP program, which served as a model for the national law, established in 1997. Since then, CHIP has been left in the fiscal lurch only once before. In 2007, CHIP went several weeks without funding authorization from Congress.

Here’s a quick look at what the shortfall may mean to daily life.
 

1. Are any kids hurting because Congress has failed to fund CHIP?

No. But states such as California will run out of money within weeks. That state alone accounts for nearly 15% of all children benefiting from CHIP. Without federal money, state programs could freeze enrollment or suspend operation.

2. What are states doing since Congress missed the deadline?

Most states are doing little except looking for other unspent federal funds or asking the federal government to send some unspent funds from other states. But some, such as Colorado, are sending warning letters to beneficiaries to tell them that the program could soon end and to look for alternatives. This could mean exploring the ACA marketplace for coverage or researching if a child qualifies for Medicaid.

Colorado said it has only enough CHIP funding to last through January and then the program, without federal dollars, will end.

Arizona officials announced Nov. 30 that it will use Medicaid funding to fill in the shortage of CHIP dollars to extend the life of its CHIP program.

Virginia officials plan to send out a similar notice to parents of CHIP members by early December.

Minnesota is keeping CHIP alive by paying the federal share with state funds.

In Oregon, Democratic Gov. Kate Brown recently said that she is ready to spend $35 million in state funds to keep CHIP running through December.

Nevada announced on Nov. 30 it had been approved for extra funding from the Centers for Medicare & Medicaid Services – nearly $5.7 million – which could keep CHIP alive through December and possibly January.

California, which leads the nation in CHIP enrollment, has received the lion’s share of CMS redistribution funds since October: nearly $692 million.

“Approximately 98% of the 1.3 million population now covered using CHIP funding would continue to receive coverage under the Medicaid program because of a legal obligation to cover them through September 2019,” said California Medicaid/CHIP spokesman Tony Cava. “If CHIP is not reauthorized, the governor and Legislature would need to deliberate on how best to address the population no longer eligible for federal CHIP funding.”
 

3. When is Congress likely to act?

Not sure. CHIP reauthorization could be included in an appropriations bill that Congress must pass to fund the government into 2018. (Congress now has funded the government through Dec. 8.) A “continuing resolution” bill would have to be approved by then to avert a government shutdown.

4. If CHIP is so popular among Republicans and Democrats, what’s the problem?

There is little debate about its worth and value, but the momentum on CHIP was lost amid disagreements over the Affordable Care Act. The House did extend authorization with a vote – mostly along party lines – on Nov. 3. The Senate itself has yet to vote. The Senate Finance Committee on Oct. 3 approved a bipartisan bill to extend the program for 5 years.

The sticking point is not whether to keep CHIP running but how to raise the cash needed. The House agreed to charge higher premiums to wealthier Medicare beneficiaries, cut money from the ACA’s preventive health fund and shorten the grace period for ACA enrollees who fail to make monthly premium payments.

Like the House bill, the Senate committee bill eliminated an ACA provision to increase CHIP matching funds – to states – by 23%. The increased funding would continue through fiscal year 2019 and fall to 11.5 percent in fiscal year 2020. It would be cut entirely in the following fiscal year.
 

5. How does CHIP differ based on where you live?

CHIP income eligibility levels vary by state. About 90% of children who qualify are from families earning 200% of poverty or less ($40,840 for a family of three). CHIP covers children up to age 19. But states have the option to cover pregnant women, and 18 states plus the District of Columbia do so.

Some states call CHIP by different names. For example, it is known as Hoosier Healthwise in Indiana, PeachCare for Kids in Georgia and KidsCare in Arizona.
 

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Two months past its deadline, Congress has yet to fund the Children’s Health Insurance Program, leaving several states scrambling for cash.

Lawmakers grappling with the failed repeal of the Affordable Care Act allowed authorization of the program to lapse on Sept. 30. Although CHIP has always had broad bipartisan support, the House and Senate cannot agree on how to continue federal funding. And the Trump administration has been mostly silent on the issue.

CHIP benefits 9 million children nationwide and 370,000 pregnant women a year. It helps lower- and middle-income families who otherwise earn too much to be eligible for Medicaid. Like Medicaid, CHIP is paid for with state and federal funds, but the federal government covers close to 90% of the cost.

To keep the program going, states with unspent federal CHIP money have seen their excess sent to a handful of states running low on funds. But that is a bureaucratic Band-Aid; some large states are warning families they may not be able to rely on CHIP for much longer.

All told, the CMS has given out $1.2 billion in redistribution dollars since October. To keep the program going would cost the federal government $8.5 billion over 5 years, the Congressional Budget Office estimates.

Dec. 2 marked the 25th anniversary of Pennsylvania approving the original CHIP program, which served as a model for the national law, established in 1997. Since then, CHIP has been left in the fiscal lurch only once before. In 2007, CHIP went several weeks without funding authorization from Congress.

Here’s a quick look at what the shortfall may mean to daily life.
 

1. Are any kids hurting because Congress has failed to fund CHIP?

No. But states such as California will run out of money within weeks. That state alone accounts for nearly 15% of all children benefiting from CHIP. Without federal money, state programs could freeze enrollment or suspend operation.

2. What are states doing since Congress missed the deadline?

Most states are doing little except looking for other unspent federal funds or asking the federal government to send some unspent funds from other states. But some, such as Colorado, are sending warning letters to beneficiaries to tell them that the program could soon end and to look for alternatives. This could mean exploring the ACA marketplace for coverage or researching if a child qualifies for Medicaid.

Colorado said it has only enough CHIP funding to last through January and then the program, without federal dollars, will end.

Arizona officials announced Nov. 30 that it will use Medicaid funding to fill in the shortage of CHIP dollars to extend the life of its CHIP program.

Virginia officials plan to send out a similar notice to parents of CHIP members by early December.

Minnesota is keeping CHIP alive by paying the federal share with state funds.

In Oregon, Democratic Gov. Kate Brown recently said that she is ready to spend $35 million in state funds to keep CHIP running through December.

Nevada announced on Nov. 30 it had been approved for extra funding from the Centers for Medicare & Medicaid Services – nearly $5.7 million – which could keep CHIP alive through December and possibly January.

California, which leads the nation in CHIP enrollment, has received the lion’s share of CMS redistribution funds since October: nearly $692 million.

“Approximately 98% of the 1.3 million population now covered using CHIP funding would continue to receive coverage under the Medicaid program because of a legal obligation to cover them through September 2019,” said California Medicaid/CHIP spokesman Tony Cava. “If CHIP is not reauthorized, the governor and Legislature would need to deliberate on how best to address the population no longer eligible for federal CHIP funding.”
 

3. When is Congress likely to act?

Not sure. CHIP reauthorization could be included in an appropriations bill that Congress must pass to fund the government into 2018. (Congress now has funded the government through Dec. 8.) A “continuing resolution” bill would have to be approved by then to avert a government shutdown.

4. If CHIP is so popular among Republicans and Democrats, what’s the problem?

There is little debate about its worth and value, but the momentum on CHIP was lost amid disagreements over the Affordable Care Act. The House did extend authorization with a vote – mostly along party lines – on Nov. 3. The Senate itself has yet to vote. The Senate Finance Committee on Oct. 3 approved a bipartisan bill to extend the program for 5 years.

The sticking point is not whether to keep CHIP running but how to raise the cash needed. The House agreed to charge higher premiums to wealthier Medicare beneficiaries, cut money from the ACA’s preventive health fund and shorten the grace period for ACA enrollees who fail to make monthly premium payments.

Like the House bill, the Senate committee bill eliminated an ACA provision to increase CHIP matching funds – to states – by 23%. The increased funding would continue through fiscal year 2019 and fall to 11.5 percent in fiscal year 2020. It would be cut entirely in the following fiscal year.
 

5. How does CHIP differ based on where you live?

CHIP income eligibility levels vary by state. About 90% of children who qualify are from families earning 200% of poverty or less ($40,840 for a family of three). CHIP covers children up to age 19. But states have the option to cover pregnant women, and 18 states plus the District of Columbia do so.

Some states call CHIP by different names. For example, it is known as Hoosier Healthwise in Indiana, PeachCare for Kids in Georgia and KidsCare in Arizona.
 

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Two months past its deadline, Congress has yet to fund the Children’s Health Insurance Program, leaving several states scrambling for cash.

Lawmakers grappling with the failed repeal of the Affordable Care Act allowed authorization of the program to lapse on Sept. 30. Although CHIP has always had broad bipartisan support, the House and Senate cannot agree on how to continue federal funding. And the Trump administration has been mostly silent on the issue.

CHIP benefits 9 million children nationwide and 370,000 pregnant women a year. It helps lower- and middle-income families who otherwise earn too much to be eligible for Medicaid. Like Medicaid, CHIP is paid for with state and federal funds, but the federal government covers close to 90% of the cost.

To keep the program going, states with unspent federal CHIP money have seen their excess sent to a handful of states running low on funds. But that is a bureaucratic Band-Aid; some large states are warning families they may not be able to rely on CHIP for much longer.

All told, the CMS has given out $1.2 billion in redistribution dollars since October. To keep the program going would cost the federal government $8.5 billion over 5 years, the Congressional Budget Office estimates.

Dec. 2 marked the 25th anniversary of Pennsylvania approving the original CHIP program, which served as a model for the national law, established in 1997. Since then, CHIP has been left in the fiscal lurch only once before. In 2007, CHIP went several weeks without funding authorization from Congress.

Here’s a quick look at what the shortfall may mean to daily life.
 

1. Are any kids hurting because Congress has failed to fund CHIP?

No. But states such as California will run out of money within weeks. That state alone accounts for nearly 15% of all children benefiting from CHIP. Without federal money, state programs could freeze enrollment or suspend operation.

2. What are states doing since Congress missed the deadline?

Most states are doing little except looking for other unspent federal funds or asking the federal government to send some unspent funds from other states. But some, such as Colorado, are sending warning letters to beneficiaries to tell them that the program could soon end and to look for alternatives. This could mean exploring the ACA marketplace for coverage or researching if a child qualifies for Medicaid.

Colorado said it has only enough CHIP funding to last through January and then the program, without federal dollars, will end.

Arizona officials announced Nov. 30 that it will use Medicaid funding to fill in the shortage of CHIP dollars to extend the life of its CHIP program.

Virginia officials plan to send out a similar notice to parents of CHIP members by early December.

Minnesota is keeping CHIP alive by paying the federal share with state funds.

In Oregon, Democratic Gov. Kate Brown recently said that she is ready to spend $35 million in state funds to keep CHIP running through December.

Nevada announced on Nov. 30 it had been approved for extra funding from the Centers for Medicare & Medicaid Services – nearly $5.7 million – which could keep CHIP alive through December and possibly January.

California, which leads the nation in CHIP enrollment, has received the lion’s share of CMS redistribution funds since October: nearly $692 million.

“Approximately 98% of the 1.3 million population now covered using CHIP funding would continue to receive coverage under the Medicaid program because of a legal obligation to cover them through September 2019,” said California Medicaid/CHIP spokesman Tony Cava. “If CHIP is not reauthorized, the governor and Legislature would need to deliberate on how best to address the population no longer eligible for federal CHIP funding.”
 

3. When is Congress likely to act?

Not sure. CHIP reauthorization could be included in an appropriations bill that Congress must pass to fund the government into 2018. (Congress now has funded the government through Dec. 8.) A “continuing resolution” bill would have to be approved by then to avert a government shutdown.

4. If CHIP is so popular among Republicans and Democrats, what’s the problem?

There is little debate about its worth and value, but the momentum on CHIP was lost amid disagreements over the Affordable Care Act. The House did extend authorization with a vote – mostly along party lines – on Nov. 3. The Senate itself has yet to vote. The Senate Finance Committee on Oct. 3 approved a bipartisan bill to extend the program for 5 years.

The sticking point is not whether to keep CHIP running but how to raise the cash needed. The House agreed to charge higher premiums to wealthier Medicare beneficiaries, cut money from the ACA’s preventive health fund and shorten the grace period for ACA enrollees who fail to make monthly premium payments.

Like the House bill, the Senate committee bill eliminated an ACA provision to increase CHIP matching funds – to states – by 23%. The increased funding would continue through fiscal year 2019 and fall to 11.5 percent in fiscal year 2020. It would be cut entirely in the following fiscal year.
 

5. How does CHIP differ based on where you live?

CHIP income eligibility levels vary by state. About 90% of children who qualify are from families earning 200% of poverty or less ($40,840 for a family of three). CHIP covers children up to age 19. But states have the option to cover pregnant women, and 18 states plus the District of Columbia do so.

Some states call CHIP by different names. For example, it is known as Hoosier Healthwise in Indiana, PeachCare for Kids in Georgia and KidsCare in Arizona.
 

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation. Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Having failed to repeal and replace the Affordable Care Act, Congress is now working on a tax overhaul. But it turns out the tax bills in the House and Senate also aim to reshape health care.

Here are five big ways the tax bill could affect health policy:

1. Repeal the requirement for most people to have health insurance or pay a tax penalty

Republicans tried and failed to end the so-called individual mandate this year when they attempted to advance their health overhaul legislation. Now the idea is back, at least in the Senate’s version of the tax bill. The measure would not technically remove the requirement for people to have insurance, but it would eliminate the fine people would face if they choose to remain uninsured.

The Congressional Budget Office has estimated that dropping the requirement would result in 13 million fewer people having insurance over 10 years.

It also estimates that premiums would rise 10% more per year than they would without this change. That is because healthier people would be most likely to drop insurance in the absence of a fine, so insurers would have to raise premiums to compensate for a sicker group of customers. Those consumers, in turn, would be left with fewer affordable choices, according to the CBO.

State insurance officials are concerned that insurers will drop out of the individual market entirely if there is no requirement for healthy people to sign up, but they still have to sell to people who know they will need medical care.

Ironically, the states most likely to see this kind of insurance-market disruption are those that are reliably Republican. An analysis by the Los Angeles Times suggested that the states with the fewest insurers and the highest premiums – including Alaska, Iowa, Missouri, Nebraska, Nevada, and Wyoming – would be the ones left with either no coverage options or options too expensive for most consumers in the individual market.
 

2. Repeal the medical expense deduction

The House-passed tax bill, although not the Senate’s, would eliminate taxpayers’ ability to deduct medical expenses that exceed 10% of their adjusted gross income.

The medical expense deduction is not widely used – just under 9 million tax filers took it on their 2015 tax returns, according to the Internal Revenue Service. But those who do use it generally have very high medical expenses, often for a disabled child, a serious chronic illness, or expensive long-term care not covered by health insurance.

Among those most vehemently against getting rid of the deduction is the senior advocacy group AARP. Eliminating the deduction, the group said in a statement, “amounts to a health tax on millions of Americans with high medical costs – especially middle income seniors.”
 

3. Trigger major cuts to the Medicare program

The tax bill includes no specific Medicare changes, but budget analysts point out that passing it in its current form would trigger another law to kick in. That measure requires cuts to federal programs if the federal budget deficit is increased.

Because the tax bills in both the House and Senate would add an additional $1.5 trillion to the deficit over the next 10 years, both would result in automatic cuts under the Statutory Pay-As-You-Go Act of 2010 (PAYGO). According to the CBO, if Congress passes the tax bill and does not waive the PAYGO law, federal officials “would be required to issue a sequestration order within 15 days of the end of the session of Congress to reduce spending in fiscal year 2018 by the resultant total of $136 billion.”

Cuts to Medicare are limited under the PAYGO law, so the Medicare reduction would be limited to 4% of program spending, which is roughly $25 billion of that total. Cuts of a similar size would be required in future years. Most of that would likely come from payments to providers.
 

4. Change tax treatment for graduate students and those paying back student loans

The House bill, though not the Senate’s, would for the first time require graduate students to pay tax on the value of tuition that universities do not require them to pay.

Currently, graduate students in many fields, including science, often are paid a small stipend for teaching while they pursue advanced degrees. Many are technically charged tuition, but it is “waived” as long as they are working for the university.

The House tax bill would eliminate that waiver and require them to pay taxes on the full value of the tuition they don’t have to pay, which would result in many students with fairly low incomes seeing very large tax bills.

At the same time, the House tax bill would eliminate the deduction for interest paid on student loans. This would disproportionately affect young doctors.

According to the Association of American Medical Colleges, 75% of the medical school class of 2017 graduated with student loan debt, with nearly half owing $200,000 or more.
 

5. Change or eliminate the tax credit for rare disease drug development

Congress created the so-called Orphan Drug Credit in 1983, as part of a package of incentives intended to entice drugmakers to study and develop drugs to treat rare diseases, defined as those affecting fewer than 200,000 people. With such a small potential market, it does not otherwise make financial sense for the companies to spend the millions of dollars necessary to develop treatments for such ailments.

To date, about 500 drugs have come to market using the incentives, although in some cases drugmakers have manipulated the credit for extra financial gain.

The House tax bill would eliminate the tax credit; the Senate bill would scale it back. Sen. Orrin Hatch (R-Utah), chairman of the tax-writing Finance Committee, is one of the original sponsors of the orphan drug law.

The drug industry has been relatively quiet about the potential loss of the credit, but the National Organization for Rare Disorders called the change “wholly unacceptable” and said it “would directly result in 33% fewer orphan drugs coming to market.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Having failed to repeal and replace the Affordable Care Act, Congress is now working on a tax overhaul. But it turns out the tax bills in the House and Senate also aim to reshape health care.

Here are five big ways the tax bill could affect health policy:

1. Repeal the requirement for most people to have health insurance or pay a tax penalty

Republicans tried and failed to end the so-called individual mandate this year when they attempted to advance their health overhaul legislation. Now the idea is back, at least in the Senate’s version of the tax bill. The measure would not technically remove the requirement for people to have insurance, but it would eliminate the fine people would face if they choose to remain uninsured.

The Congressional Budget Office has estimated that dropping the requirement would result in 13 million fewer people having insurance over 10 years.

It also estimates that premiums would rise 10% more per year than they would without this change. That is because healthier people would be most likely to drop insurance in the absence of a fine, so insurers would have to raise premiums to compensate for a sicker group of customers. Those consumers, in turn, would be left with fewer affordable choices, according to the CBO.

State insurance officials are concerned that insurers will drop out of the individual market entirely if there is no requirement for healthy people to sign up, but they still have to sell to people who know they will need medical care.

Ironically, the states most likely to see this kind of insurance-market disruption are those that are reliably Republican. An analysis by the Los Angeles Times suggested that the states with the fewest insurers and the highest premiums – including Alaska, Iowa, Missouri, Nebraska, Nevada, and Wyoming – would be the ones left with either no coverage options or options too expensive for most consumers in the individual market.
 

2. Repeal the medical expense deduction

The House-passed tax bill, although not the Senate’s, would eliminate taxpayers’ ability to deduct medical expenses that exceed 10% of their adjusted gross income.

The medical expense deduction is not widely used – just under 9 million tax filers took it on their 2015 tax returns, according to the Internal Revenue Service. But those who do use it generally have very high medical expenses, often for a disabled child, a serious chronic illness, or expensive long-term care not covered by health insurance.

Among those most vehemently against getting rid of the deduction is the senior advocacy group AARP. Eliminating the deduction, the group said in a statement, “amounts to a health tax on millions of Americans with high medical costs – especially middle income seniors.”
 

3. Trigger major cuts to the Medicare program

The tax bill includes no specific Medicare changes, but budget analysts point out that passing it in its current form would trigger another law to kick in. That measure requires cuts to federal programs if the federal budget deficit is increased.

Because the tax bills in both the House and Senate would add an additional $1.5 trillion to the deficit over the next 10 years, both would result in automatic cuts under the Statutory Pay-As-You-Go Act of 2010 (PAYGO). According to the CBO, if Congress passes the tax bill and does not waive the PAYGO law, federal officials “would be required to issue a sequestration order within 15 days of the end of the session of Congress to reduce spending in fiscal year 2018 by the resultant total of $136 billion.”

Cuts to Medicare are limited under the PAYGO law, so the Medicare reduction would be limited to 4% of program spending, which is roughly $25 billion of that total. Cuts of a similar size would be required in future years. Most of that would likely come from payments to providers.
 

4. Change tax treatment for graduate students and those paying back student loans

The House bill, though not the Senate’s, would for the first time require graduate students to pay tax on the value of tuition that universities do not require them to pay.

Currently, graduate students in many fields, including science, often are paid a small stipend for teaching while they pursue advanced degrees. Many are technically charged tuition, but it is “waived” as long as they are working for the university.

The House tax bill would eliminate that waiver and require them to pay taxes on the full value of the tuition they don’t have to pay, which would result in many students with fairly low incomes seeing very large tax bills.

At the same time, the House tax bill would eliminate the deduction for interest paid on student loans. This would disproportionately affect young doctors.

According to the Association of American Medical Colleges, 75% of the medical school class of 2017 graduated with student loan debt, with nearly half owing $200,000 or more.
 

5. Change or eliminate the tax credit for rare disease drug development

Congress created the so-called Orphan Drug Credit in 1983, as part of a package of incentives intended to entice drugmakers to study and develop drugs to treat rare diseases, defined as those affecting fewer than 200,000 people. With such a small potential market, it does not otherwise make financial sense for the companies to spend the millions of dollars necessary to develop treatments for such ailments.

To date, about 500 drugs have come to market using the incentives, although in some cases drugmakers have manipulated the credit for extra financial gain.

The House tax bill would eliminate the tax credit; the Senate bill would scale it back. Sen. Orrin Hatch (R-Utah), chairman of the tax-writing Finance Committee, is one of the original sponsors of the orphan drug law.

The drug industry has been relatively quiet about the potential loss of the credit, but the National Organization for Rare Disorders called the change “wholly unacceptable” and said it “would directly result in 33% fewer orphan drugs coming to market.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Having failed to repeal and replace the Affordable Care Act, Congress is now working on a tax overhaul. But it turns out the tax bills in the House and Senate also aim to reshape health care.

Here are five big ways the tax bill could affect health policy:

1. Repeal the requirement for most people to have health insurance or pay a tax penalty

Republicans tried and failed to end the so-called individual mandate this year when they attempted to advance their health overhaul legislation. Now the idea is back, at least in the Senate’s version of the tax bill. The measure would not technically remove the requirement for people to have insurance, but it would eliminate the fine people would face if they choose to remain uninsured.

The Congressional Budget Office has estimated that dropping the requirement would result in 13 million fewer people having insurance over 10 years.

It also estimates that premiums would rise 10% more per year than they would without this change. That is because healthier people would be most likely to drop insurance in the absence of a fine, so insurers would have to raise premiums to compensate for a sicker group of customers. Those consumers, in turn, would be left with fewer affordable choices, according to the CBO.

State insurance officials are concerned that insurers will drop out of the individual market entirely if there is no requirement for healthy people to sign up, but they still have to sell to people who know they will need medical care.

Ironically, the states most likely to see this kind of insurance-market disruption are those that are reliably Republican. An analysis by the Los Angeles Times suggested that the states with the fewest insurers and the highest premiums – including Alaska, Iowa, Missouri, Nebraska, Nevada, and Wyoming – would be the ones left with either no coverage options or options too expensive for most consumers in the individual market.
 

2. Repeal the medical expense deduction

The House-passed tax bill, although not the Senate’s, would eliminate taxpayers’ ability to deduct medical expenses that exceed 10% of their adjusted gross income.

The medical expense deduction is not widely used – just under 9 million tax filers took it on their 2015 tax returns, according to the Internal Revenue Service. But those who do use it generally have very high medical expenses, often for a disabled child, a serious chronic illness, or expensive long-term care not covered by health insurance.

Among those most vehemently against getting rid of the deduction is the senior advocacy group AARP. Eliminating the deduction, the group said in a statement, “amounts to a health tax on millions of Americans with high medical costs – especially middle income seniors.”
 

3. Trigger major cuts to the Medicare program

The tax bill includes no specific Medicare changes, but budget analysts point out that passing it in its current form would trigger another law to kick in. That measure requires cuts to federal programs if the federal budget deficit is increased.

Because the tax bills in both the House and Senate would add an additional $1.5 trillion to the deficit over the next 10 years, both would result in automatic cuts under the Statutory Pay-As-You-Go Act of 2010 (PAYGO). According to the CBO, if Congress passes the tax bill and does not waive the PAYGO law, federal officials “would be required to issue a sequestration order within 15 days of the end of the session of Congress to reduce spending in fiscal year 2018 by the resultant total of $136 billion.”

Cuts to Medicare are limited under the PAYGO law, so the Medicare reduction would be limited to 4% of program spending, which is roughly $25 billion of that total. Cuts of a similar size would be required in future years. Most of that would likely come from payments to providers.
 

4. Change tax treatment for graduate students and those paying back student loans

The House bill, though not the Senate’s, would for the first time require graduate students to pay tax on the value of tuition that universities do not require them to pay.

Currently, graduate students in many fields, including science, often are paid a small stipend for teaching while they pursue advanced degrees. Many are technically charged tuition, but it is “waived” as long as they are working for the university.

The House tax bill would eliminate that waiver and require them to pay taxes on the full value of the tuition they don’t have to pay, which would result in many students with fairly low incomes seeing very large tax bills.

At the same time, the House tax bill would eliminate the deduction for interest paid on student loans. This would disproportionately affect young doctors.

According to the Association of American Medical Colleges, 75% of the medical school class of 2017 graduated with student loan debt, with nearly half owing $200,000 or more.
 

5. Change or eliminate the tax credit for rare disease drug development

Congress created the so-called Orphan Drug Credit in 1983, as part of a package of incentives intended to entice drugmakers to study and develop drugs to treat rare diseases, defined as those affecting fewer than 200,000 people. With such a small potential market, it does not otherwise make financial sense for the companies to spend the millions of dollars necessary to develop treatments for such ailments.

To date, about 500 drugs have come to market using the incentives, although in some cases drugmakers have manipulated the credit for extra financial gain.

The House tax bill would eliminate the tax credit; the Senate bill would scale it back. Sen. Orrin Hatch (R-Utah), chairman of the tax-writing Finance Committee, is one of the original sponsors of the orphan drug law.

The drug industry has been relatively quiet about the potential loss of the credit, but the National Organization for Rare Disorders called the change “wholly unacceptable” and said it “would directly result in 33% fewer orphan drugs coming to market.”
 

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

Every November, like clockwork, she gets the same letter, said Lindsay Irvin, MD, a pediatrician in San Antonio.

It’s from the drug company Pfizer, and it informs her that the price tag for the pneumococcal vaccine Prevnar 13 is going up. Again.

And it makes her angry.

“They’re the only ones who make it,” she said. “It’s like buying gas in a hurricane – or Coke in an airport. They charge what they want to.”

The Advisory Committee on Immunization Practices (ACIP) recommends Prevnar 13 for all children younger than 2 years – given at 2, 4, 6, and 15 months – as well as for adults aged 65 years and older.

The vaccine’s formulation has remained mostly unchanged since its 2010 federal approval, but its price continues creeping up, increasing by about 5%-6% most years. In just 8 years, its cost has climbed by more than 50%.

It is among the most expensive vaccines Dr. Irvin provides her young patients.

Doctors and clinics purchase the vaccine and then, once they inject patients, they typically recoup the cost through patients’ insurance coverage. In most cases there are no out-of-pocket costs.

But the steady rise in prices for branded drugs contributes indirectly to rises in premiums, deductibles, and government health spending, analysts say.

A full pediatric course of the vaccine typically involves four shots. In 2010, a single shot cost about $109, according to pricing archives kept by the CDC. It currently costs about $170, according to those archives. Next year, Pfizer says, a shot will cost almost $180.

“Pfizer and other drug companies are raising their prices because they can,” said Gerard Anderson, PhD, a health policy professor at Johns Hopkins University who studies drug pricing. “They have a patent, and they have a CDC recommendation, which is a double whammy – and a strong incentive for price increases.”

The company disagrees – arguing vaccine pricing supports research for new immunizations, along with ongoing efforts to keep products safe and to improve effectiveness. For instance, Prevnar 13’s shelf life was extended from 2 years to 3 years this year. Pricing also doesn’t affect access.

“Thanks to comprehensive health authority guidelines, Prevnar 13 is one of the most widely available public health interventions, supported by broad insurance coverage and innovative federal programs that guarantee access to vulnerable populations,” Pfizer spokeswoman Sally Beatty said in an interview.

But such arguments don’t justify the pattern of “consistent price increases,” suggested Ameet Sarpatwari, PhD, an epidemiologist and lawyer at Harvard Medical School, Boston, who studies drug policy.

“Does that explain what’s going on? Probably not,” he said. “The onus should be on them to show us why this is needed.”

Consumers are not likely to feel a pinch from these increases directly. The Affordable Care Act requires that ACIP-recommended vaccines are covered by insurance, with no cost sharing.

There are other implications, though.

Higher vaccine prices make it harder for physicians to stock up, noted Michael Munger, MD, a family physician in Overland Park, Kan., and president of the American Academy of Family Physicians.

They have to buy immunizations in advance to provide them for patients. Insurance will eventually reimburse them – typically at cost – but it can take months for that to come through, which is an especially tough proposition for small practices on tight budgets.

“You’ve got to keep track of your inventory, and make sure you don’t have any waste, and are going to get adequate reimbursement,” he said. “The cost of vaccines is definitely something in primary care we worry about, because we’re on thin margins. ... You don’t want to provide a service you lose money on, even if it’s as important as immunization.”

Gardasil, a human papillomavirus vaccine, has also seen its price climbing. And, in a similar response, ob.gyns. are providing it in smaller numbers.

A vaccine like Prevnar 13 is harder to make than older vaccines that are much cheaper, said William Moss, MD, a professor at Johns Hopkins Bloomberg School of Public Health, Baltimore, who specializes in vaccines and global children’s health. It provides immunization for 13 different variations of pneumococcal infection. That makes it a more effective vaccine, but also one that requires greater investment.

Critics, however, note that those investments were made by another company, Wyeth Pharmaceuticals. Pfizer bought Wyeth in 2009, along with the rights to the vaccine.
 

KHN’s coverage of prescription drug development, costs, and pricing is supported by the Laura and John Arnold Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Every November, like clockwork, she gets the same letter, said Lindsay Irvin, MD, a pediatrician in San Antonio.

It’s from the drug company Pfizer, and it informs her that the price tag for the pneumococcal vaccine Prevnar 13 is going up. Again.

And it makes her angry.

“They’re the only ones who make it,” she said. “It’s like buying gas in a hurricane – or Coke in an airport. They charge what they want to.”

The Advisory Committee on Immunization Practices (ACIP) recommends Prevnar 13 for all children younger than 2 years – given at 2, 4, 6, and 15 months – as well as for adults aged 65 years and older.

The vaccine’s formulation has remained mostly unchanged since its 2010 federal approval, but its price continues creeping up, increasing by about 5%-6% most years. In just 8 years, its cost has climbed by more than 50%.

It is among the most expensive vaccines Dr. Irvin provides her young patients.

Doctors and clinics purchase the vaccine and then, once they inject patients, they typically recoup the cost through patients’ insurance coverage. In most cases there are no out-of-pocket costs.

But the steady rise in prices for branded drugs contributes indirectly to rises in premiums, deductibles, and government health spending, analysts say.

A full pediatric course of the vaccine typically involves four shots. In 2010, a single shot cost about $109, according to pricing archives kept by the CDC. It currently costs about $170, according to those archives. Next year, Pfizer says, a shot will cost almost $180.

“Pfizer and other drug companies are raising their prices because they can,” said Gerard Anderson, PhD, a health policy professor at Johns Hopkins University who studies drug pricing. “They have a patent, and they have a CDC recommendation, which is a double whammy – and a strong incentive for price increases.”

The company disagrees – arguing vaccine pricing supports research for new immunizations, along with ongoing efforts to keep products safe and to improve effectiveness. For instance, Prevnar 13’s shelf life was extended from 2 years to 3 years this year. Pricing also doesn’t affect access.

“Thanks to comprehensive health authority guidelines, Prevnar 13 is one of the most widely available public health interventions, supported by broad insurance coverage and innovative federal programs that guarantee access to vulnerable populations,” Pfizer spokeswoman Sally Beatty said in an interview.

But such arguments don’t justify the pattern of “consistent price increases,” suggested Ameet Sarpatwari, PhD, an epidemiologist and lawyer at Harvard Medical School, Boston, who studies drug policy.

“Does that explain what’s going on? Probably not,” he said. “The onus should be on them to show us why this is needed.”

Consumers are not likely to feel a pinch from these increases directly. The Affordable Care Act requires that ACIP-recommended vaccines are covered by insurance, with no cost sharing.

There are other implications, though.

Higher vaccine prices make it harder for physicians to stock up, noted Michael Munger, MD, a family physician in Overland Park, Kan., and president of the American Academy of Family Physicians.

They have to buy immunizations in advance to provide them for patients. Insurance will eventually reimburse them – typically at cost – but it can take months for that to come through, which is an especially tough proposition for small practices on tight budgets.

“You’ve got to keep track of your inventory, and make sure you don’t have any waste, and are going to get adequate reimbursement,” he said. “The cost of vaccines is definitely something in primary care we worry about, because we’re on thin margins. ... You don’t want to provide a service you lose money on, even if it’s as important as immunization.”

Gardasil, a human papillomavirus vaccine, has also seen its price climbing. And, in a similar response, ob.gyns. are providing it in smaller numbers.

A vaccine like Prevnar 13 is harder to make than older vaccines that are much cheaper, said William Moss, MD, a professor at Johns Hopkins Bloomberg School of Public Health, Baltimore, who specializes in vaccines and global children’s health. It provides immunization for 13 different variations of pneumococcal infection. That makes it a more effective vaccine, but also one that requires greater investment.

Critics, however, note that those investments were made by another company, Wyeth Pharmaceuticals. Pfizer bought Wyeth in 2009, along with the rights to the vaccine.
 

KHN’s coverage of prescription drug development, costs, and pricing is supported by the Laura and John Arnold Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Every November, like clockwork, she gets the same letter, said Lindsay Irvin, MD, a pediatrician in San Antonio.

It’s from the drug company Pfizer, and it informs her that the price tag for the pneumococcal vaccine Prevnar 13 is going up. Again.

And it makes her angry.

“They’re the only ones who make it,” she said. “It’s like buying gas in a hurricane – or Coke in an airport. They charge what they want to.”

The Advisory Committee on Immunization Practices (ACIP) recommends Prevnar 13 for all children younger than 2 years – given at 2, 4, 6, and 15 months – as well as for adults aged 65 years and older.

The vaccine’s formulation has remained mostly unchanged since its 2010 federal approval, but its price continues creeping up, increasing by about 5%-6% most years. In just 8 years, its cost has climbed by more than 50%.

It is among the most expensive vaccines Dr. Irvin provides her young patients.

Doctors and clinics purchase the vaccine and then, once they inject patients, they typically recoup the cost through patients’ insurance coverage. In most cases there are no out-of-pocket costs.

But the steady rise in prices for branded drugs contributes indirectly to rises in premiums, deductibles, and government health spending, analysts say.

A full pediatric course of the vaccine typically involves four shots. In 2010, a single shot cost about $109, according to pricing archives kept by the CDC. It currently costs about $170, according to those archives. Next year, Pfizer says, a shot will cost almost $180.

“Pfizer and other drug companies are raising their prices because they can,” said Gerard Anderson, PhD, a health policy professor at Johns Hopkins University who studies drug pricing. “They have a patent, and they have a CDC recommendation, which is a double whammy – and a strong incentive for price increases.”

The company disagrees – arguing vaccine pricing supports research for new immunizations, along with ongoing efforts to keep products safe and to improve effectiveness. For instance, Prevnar 13’s shelf life was extended from 2 years to 3 years this year. Pricing also doesn’t affect access.

“Thanks to comprehensive health authority guidelines, Prevnar 13 is one of the most widely available public health interventions, supported by broad insurance coverage and innovative federal programs that guarantee access to vulnerable populations,” Pfizer spokeswoman Sally Beatty said in an interview.

But such arguments don’t justify the pattern of “consistent price increases,” suggested Ameet Sarpatwari, PhD, an epidemiologist and lawyer at Harvard Medical School, Boston, who studies drug policy.

“Does that explain what’s going on? Probably not,” he said. “The onus should be on them to show us why this is needed.”

Consumers are not likely to feel a pinch from these increases directly. The Affordable Care Act requires that ACIP-recommended vaccines are covered by insurance, with no cost sharing.

There are other implications, though.

Higher vaccine prices make it harder for physicians to stock up, noted Michael Munger, MD, a family physician in Overland Park, Kan., and president of the American Academy of Family Physicians.

They have to buy immunizations in advance to provide them for patients. Insurance will eventually reimburse them – typically at cost – but it can take months for that to come through, which is an especially tough proposition for small practices on tight budgets.

“You’ve got to keep track of your inventory, and make sure you don’t have any waste, and are going to get adequate reimbursement,” he said. “The cost of vaccines is definitely something in primary care we worry about, because we’re on thin margins. ... You don’t want to provide a service you lose money on, even if it’s as important as immunization.”

Gardasil, a human papillomavirus vaccine, has also seen its price climbing. And, in a similar response, ob.gyns. are providing it in smaller numbers.

A vaccine like Prevnar 13 is harder to make than older vaccines that are much cheaper, said William Moss, MD, a professor at Johns Hopkins Bloomberg School of Public Health, Baltimore, who specializes in vaccines and global children’s health. It provides immunization for 13 different variations of pneumococcal infection. That makes it a more effective vaccine, but also one that requires greater investment.

Critics, however, note that those investments were made by another company, Wyeth Pharmaceuticals. Pfizer bought Wyeth in 2009, along with the rights to the vaccine.
 

KHN’s coverage of prescription drug development, costs, and pricing is supported by the Laura and John Arnold Foundation. Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Consumers coping with the high cost of health insurance are the target market for new plans claiming to be lower-cost alternatives to the Affordable Care Act that fulfill the law’s requirement for health coverage.

But experts and regulators warn consumers to be cautious – and are raising red flags about one set of limited benefit plans marketed to individuals for as little as $93 a month. Offered through brokers and online ads, the plans promise to be an “ACA compliant, affordable, integrated solution that help ... individuals avoid the penalties under [the health care law].”

Such skinny plans – sold for the first time to individuals – come amid uncertainty over the fate of the ACA and whether the Trump administration will ease rules on plans for individuals. Dozens of brokers are offering the plans.

“The Trump administration is injecting a significant amount of confusion into the implementation of the ACA,” said Kevin Lucia, project director at Georgetown University’s Health Policy Institute. “So it doesn’t surprise me that we would have arrangements popping up that might be trying to take advantage of that confusion.”

Apex Management Group of the Chicago area and Pennsylvania-based Xpress Healthcare have teamed up to offer the plans, and executives from both companies say they don’t need approval from state regulators to sell them. They are selling the policies across the country, although their websites note one state – Massachusetts – where the plans are not offered.

David Shull, Apex’s director of business development, said “this is not insurance” and the plans are designed to meet the “bulk of someone’s day-to-day needs.”

Legal and policy experts have raised concerns that the new plans could leave buyers incorrectly thinking they are exempt from paying a penalty for not having coverage. Additionally, they say, plans sold to individuals must be state-licensed – and one regulator has already asked for an investigation.

“Generally speaking, any entity selling health insurance in the state of California has to have a license,” Dave Jones, the Golden State’s insurance commissioner, said earlier this month. “I have asked the Department of Insurance staff to open an investigation with regard to this company to ascertain whether it is in violation of California law if they are selling it in California.”

Asked about a possible investigation, Apex owner Jeffrey Bemoras emailed a statement last week saying the firm is not offering plans to individuals in California. He also noted that the individual market accounts for only 2% of the company’s business.

“To be clear, Apex Management group adheres closely to all state and federal rules and regulations surrounding offering a self-insured MEC [minimal essential coverage] program,” he wrote. “We are test marketing our product in the individual environment. If at some point it doesn’t make sense to continue that investment we will not invest or focus in on that market.”

Price-tag appeal, but what about coverage?

The new plans promise to be a solution for individuals who say that conventional health insurance is too expensive. Those looking for alternatives to the ACA often earn too much to qualify for tax subsidies under the federal law.

Donna Harper, an insurance agent who runs a two-person brokerage in Crystal Lake, Ill., found herself in that situation. She sells the Xpress plans – and decided to buy one herself.

Ms. Harper says she canceled her BlueCross BlueShield plan, which did meet the ACA’s requirements, after it rose to nearly $11,000 in premiums this year, with a $6,000 annual deductible.

“Self-employed people are being priced out of the market,” she said, noting the new Xpress plan will save her more than $500 a month.

The Xpress Minimum Essential Coverage plans come in three levels, costing as little as $93 a month for individuals to as much as $516 for a family. They cover preventive care – including certain cancer screenings and vaccinations – while providing limited benefits for doctor visits, lab tests, and lower-cost prescription drugs.

There is little or no coverage for hospital, emergency room care, and expensive prescription drugs, such as chemotherapy.

Ms. Harper said she generally recommends that her clients who sign up for an Xpress plan also buy a hospital-only policy offered by other insurers. That extra policy would pay a set amount toward inpatient care – often ranging from $1,500 to $5,000 or so a day.

Still, experts caution that hospital bills are generally much higher than those amounts. A three-day stay averages $30,000, according to the federal government’s insurance website. And hospital plans can have tougher requirements. Unlike the Xpress programs, which don’t reject applicants who have preexisting medical conditions, hospital-only plans often do. Ms. Harper says she personally was rejected for one.

“I haven’t been in the hospital for 40 years, so I’m going to roll the dice,” she said. And if she winds up in the hospital? “I’ll just pay the bill.”

About 100 brokers nationwide are selling the plans, and interest “is picking up quick,” said Edward Pettola, co-owner and founder of Xpress, which for years has sold programs that offer discounts on dental, vision, and prescription services.

Caveat emptor

Experts question whether the plans exempt policyholders from the ACA’s tax penalty for not having “qualified” coverage, defined as a policy from an employer, a government program or a licensed product purchased on the individual market.

The penalty for tax year 2017 is the greater of a flat fee or a percentage of income. The annual total could range from as little as $695 for an individual to as much as $3,264 for a family.

President Trump issued an executive order in October designed to loosen insurance restrictions on lower-cost, alternative forms of coverage, but the administration has not signaled its view on what would be deemed qualified coverage.

Responding to questions from KHN, officials from Apex and Xpress said their plans are designed to be affordable, not to mimic ACA health plans.

“If that is what we are expected to do, just deliver what every Marketplace plan or carriers do, provide a Bronze, Silver Plan, etc., it would not solve the problem in addressing a benefit plan that is affordable,” the companies said in a joint email on Nov. 14. “Individuals are not required to have an insurance plan, but a plan that meets minimum essential coverage, the required preventive care services.”

Mr. Bemoras, in a separate interview, said his company has been selling a version of the plan to employers since 2015.

“As we see the political environment moving and wavering and not understanding what needs to be done, the individual market became extremely attractive to us,” Mr. Bemoras said.

Still, experts who reviewed the plans for KHN said policies sold to individuals must cover 10 broad categories of health care to qualify as ACA-compliant, including hospitalization and emergency room care, and cannot set annual or lifetime limits.

The Xpress/Apex programs do set limits, paying zero to $2,500 annually toward hospital care. Doctor visits are covered for a $20 copayment, but coverage is limited to three per year. Lab tests are limited to 5 services annually. To get those prices, patients have to use a physician or facility in the PHCS network, which says it has 900,000 providers nationwide. Low-cost generics are covered for as little as a $1 copay, but the amount patients pay rises sharply for more expensive drugs.

“I’m very skeptical,” said attorney Alden J. Bianchi of Mintz Levin, who advises firms on employee benefits. “That would be hard [to do] because in the individual market, you have to cover all the essential health benefits.”

The details can be confusing, partly because federal law allows group health plans – generally those offered by large employers – to provide workers with self-funded, minimal coverage plans like those offered by Apex, Mr. Bianchi said.

Apex’s Mr. Shull recently said in an email that the firm simply wants to offer coverage to people who otherwise could not afford an ACA plan.

“There will be states that want to halt this. Why, I do not understand,” he wrote. “Would an individual be better off going without anything? If they need prescriptions, lab or imaging services subject to a small copay, would you want to be the one to deny them?”

Some consumers might find the price attractive, but also find themselves vulnerable to unexpected costs, including the tax liability.

Ms. Harper, the broker who signed up for one of the plans, remains confident: “As long as Xpress satisfies the [mandate], which I’m told it does, my clients are in good hands. Even if it doesn’t, I don’t think it’s a big deal. You are saving that [the tax penalty amount] a month.”

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Consumers coping with the high cost of health insurance are the target market for new plans claiming to be lower-cost alternatives to the Affordable Care Act that fulfill the law’s requirement for health coverage.

But experts and regulators warn consumers to be cautious – and are raising red flags about one set of limited benefit plans marketed to individuals for as little as $93 a month. Offered through brokers and online ads, the plans promise to be an “ACA compliant, affordable, integrated solution that help ... individuals avoid the penalties under [the health care law].”

Such skinny plans – sold for the first time to individuals – come amid uncertainty over the fate of the ACA and whether the Trump administration will ease rules on plans for individuals. Dozens of brokers are offering the plans.

“The Trump administration is injecting a significant amount of confusion into the implementation of the ACA,” said Kevin Lucia, project director at Georgetown University’s Health Policy Institute. “So it doesn’t surprise me that we would have arrangements popping up that might be trying to take advantage of that confusion.”

Apex Management Group of the Chicago area and Pennsylvania-based Xpress Healthcare have teamed up to offer the plans, and executives from both companies say they don’t need approval from state regulators to sell them. They are selling the policies across the country, although their websites note one state – Massachusetts – where the plans are not offered.

David Shull, Apex’s director of business development, said “this is not insurance” and the plans are designed to meet the “bulk of someone’s day-to-day needs.”

Legal and policy experts have raised concerns that the new plans could leave buyers incorrectly thinking they are exempt from paying a penalty for not having coverage. Additionally, they say, plans sold to individuals must be state-licensed – and one regulator has already asked for an investigation.

“Generally speaking, any entity selling health insurance in the state of California has to have a license,” Dave Jones, the Golden State’s insurance commissioner, said earlier this month. “I have asked the Department of Insurance staff to open an investigation with regard to this company to ascertain whether it is in violation of California law if they are selling it in California.”

Asked about a possible investigation, Apex owner Jeffrey Bemoras emailed a statement last week saying the firm is not offering plans to individuals in California. He also noted that the individual market accounts for only 2% of the company’s business.

“To be clear, Apex Management group adheres closely to all state and federal rules and regulations surrounding offering a self-insured MEC [minimal essential coverage] program,” he wrote. “We are test marketing our product in the individual environment. If at some point it doesn’t make sense to continue that investment we will not invest or focus in on that market.”

Price-tag appeal, but what about coverage?

The new plans promise to be a solution for individuals who say that conventional health insurance is too expensive. Those looking for alternatives to the ACA often earn too much to qualify for tax subsidies under the federal law.

Donna Harper, an insurance agent who runs a two-person brokerage in Crystal Lake, Ill., found herself in that situation. She sells the Xpress plans – and decided to buy one herself.

Ms. Harper says she canceled her BlueCross BlueShield plan, which did meet the ACA’s requirements, after it rose to nearly $11,000 in premiums this year, with a $6,000 annual deductible.

“Self-employed people are being priced out of the market,” she said, noting the new Xpress plan will save her more than $500 a month.

The Xpress Minimum Essential Coverage plans come in three levels, costing as little as $93 a month for individuals to as much as $516 for a family. They cover preventive care – including certain cancer screenings and vaccinations – while providing limited benefits for doctor visits, lab tests, and lower-cost prescription drugs.

There is little or no coverage for hospital, emergency room care, and expensive prescription drugs, such as chemotherapy.

Ms. Harper said she generally recommends that her clients who sign up for an Xpress plan also buy a hospital-only policy offered by other insurers. That extra policy would pay a set amount toward inpatient care – often ranging from $1,500 to $5,000 or so a day.

Still, experts caution that hospital bills are generally much higher than those amounts. A three-day stay averages $30,000, according to the federal government’s insurance website. And hospital plans can have tougher requirements. Unlike the Xpress programs, which don’t reject applicants who have preexisting medical conditions, hospital-only plans often do. Ms. Harper says she personally was rejected for one.

“I haven’t been in the hospital for 40 years, so I’m going to roll the dice,” she said. And if she winds up in the hospital? “I’ll just pay the bill.”

About 100 brokers nationwide are selling the plans, and interest “is picking up quick,” said Edward Pettola, co-owner and founder of Xpress, which for years has sold programs that offer discounts on dental, vision, and prescription services.

Caveat emptor

Experts question whether the plans exempt policyholders from the ACA’s tax penalty for not having “qualified” coverage, defined as a policy from an employer, a government program or a licensed product purchased on the individual market.

The penalty for tax year 2017 is the greater of a flat fee or a percentage of income. The annual total could range from as little as $695 for an individual to as much as $3,264 for a family.

President Trump issued an executive order in October designed to loosen insurance restrictions on lower-cost, alternative forms of coverage, but the administration has not signaled its view on what would be deemed qualified coverage.

Responding to questions from KHN, officials from Apex and Xpress said their plans are designed to be affordable, not to mimic ACA health plans.

“If that is what we are expected to do, just deliver what every Marketplace plan or carriers do, provide a Bronze, Silver Plan, etc., it would not solve the problem in addressing a benefit plan that is affordable,” the companies said in a joint email on Nov. 14. “Individuals are not required to have an insurance plan, but a plan that meets minimum essential coverage, the required preventive care services.”

Mr. Bemoras, in a separate interview, said his company has been selling a version of the plan to employers since 2015.

“As we see the political environment moving and wavering and not understanding what needs to be done, the individual market became extremely attractive to us,” Mr. Bemoras said.

Still, experts who reviewed the plans for KHN said policies sold to individuals must cover 10 broad categories of health care to qualify as ACA-compliant, including hospitalization and emergency room care, and cannot set annual or lifetime limits.

The Xpress/Apex programs do set limits, paying zero to $2,500 annually toward hospital care. Doctor visits are covered for a $20 copayment, but coverage is limited to three per year. Lab tests are limited to 5 services annually. To get those prices, patients have to use a physician or facility in the PHCS network, which says it has 900,000 providers nationwide. Low-cost generics are covered for as little as a $1 copay, but the amount patients pay rises sharply for more expensive drugs.

“I’m very skeptical,” said attorney Alden J. Bianchi of Mintz Levin, who advises firms on employee benefits. “That would be hard [to do] because in the individual market, you have to cover all the essential health benefits.”

The details can be confusing, partly because federal law allows group health plans – generally those offered by large employers – to provide workers with self-funded, minimal coverage plans like those offered by Apex, Mr. Bianchi said.

Apex’s Mr. Shull recently said in an email that the firm simply wants to offer coverage to people who otherwise could not afford an ACA plan.

“There will be states that want to halt this. Why, I do not understand,” he wrote. “Would an individual be better off going without anything? If they need prescriptions, lab or imaging services subject to a small copay, would you want to be the one to deny them?”

Some consumers might find the price attractive, but also find themselves vulnerable to unexpected costs, including the tax liability.

Ms. Harper, the broker who signed up for one of the plans, remains confident: “As long as Xpress satisfies the [mandate], which I’m told it does, my clients are in good hands. Even if it doesn’t, I don’t think it’s a big deal. You are saving that [the tax penalty amount] a month.”

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Consumers coping with the high cost of health insurance are the target market for new plans claiming to be lower-cost alternatives to the Affordable Care Act that fulfill the law’s requirement for health coverage.

But experts and regulators warn consumers to be cautious – and are raising red flags about one set of limited benefit plans marketed to individuals for as little as $93 a month. Offered through brokers and online ads, the plans promise to be an “ACA compliant, affordable, integrated solution that help ... individuals avoid the penalties under [the health care law].”

Such skinny plans – sold for the first time to individuals – come amid uncertainty over the fate of the ACA and whether the Trump administration will ease rules on plans for individuals. Dozens of brokers are offering the plans.

“The Trump administration is injecting a significant amount of confusion into the implementation of the ACA,” said Kevin Lucia, project director at Georgetown University’s Health Policy Institute. “So it doesn’t surprise me that we would have arrangements popping up that might be trying to take advantage of that confusion.”

Apex Management Group of the Chicago area and Pennsylvania-based Xpress Healthcare have teamed up to offer the plans, and executives from both companies say they don’t need approval from state regulators to sell them. They are selling the policies across the country, although their websites note one state – Massachusetts – where the plans are not offered.

David Shull, Apex’s director of business development, said “this is not insurance” and the plans are designed to meet the “bulk of someone’s day-to-day needs.”

Legal and policy experts have raised concerns that the new plans could leave buyers incorrectly thinking they are exempt from paying a penalty for not having coverage. Additionally, they say, plans sold to individuals must be state-licensed – and one regulator has already asked for an investigation.

“Generally speaking, any entity selling health insurance in the state of California has to have a license,” Dave Jones, the Golden State’s insurance commissioner, said earlier this month. “I have asked the Department of Insurance staff to open an investigation with regard to this company to ascertain whether it is in violation of California law if they are selling it in California.”

Asked about a possible investigation, Apex owner Jeffrey Bemoras emailed a statement last week saying the firm is not offering plans to individuals in California. He also noted that the individual market accounts for only 2% of the company’s business.

“To be clear, Apex Management group adheres closely to all state and federal rules and regulations surrounding offering a self-insured MEC [minimal essential coverage] program,” he wrote. “We are test marketing our product in the individual environment. If at some point it doesn’t make sense to continue that investment we will not invest or focus in on that market.”

Price-tag appeal, but what about coverage?

The new plans promise to be a solution for individuals who say that conventional health insurance is too expensive. Those looking for alternatives to the ACA often earn too much to qualify for tax subsidies under the federal law.

Donna Harper, an insurance agent who runs a two-person brokerage in Crystal Lake, Ill., found herself in that situation. She sells the Xpress plans – and decided to buy one herself.

Ms. Harper says she canceled her BlueCross BlueShield plan, which did meet the ACA’s requirements, after it rose to nearly $11,000 in premiums this year, with a $6,000 annual deductible.

“Self-employed people are being priced out of the market,” she said, noting the new Xpress plan will save her more than $500 a month.

The Xpress Minimum Essential Coverage plans come in three levels, costing as little as $93 a month for individuals to as much as $516 for a family. They cover preventive care – including certain cancer screenings and vaccinations – while providing limited benefits for doctor visits, lab tests, and lower-cost prescription drugs.

There is little or no coverage for hospital, emergency room care, and expensive prescription drugs, such as chemotherapy.

Ms. Harper said she generally recommends that her clients who sign up for an Xpress plan also buy a hospital-only policy offered by other insurers. That extra policy would pay a set amount toward inpatient care – often ranging from $1,500 to $5,000 or so a day.

Still, experts caution that hospital bills are generally much higher than those amounts. A three-day stay averages $30,000, according to the federal government’s insurance website. And hospital plans can have tougher requirements. Unlike the Xpress programs, which don’t reject applicants who have preexisting medical conditions, hospital-only plans often do. Ms. Harper says she personally was rejected for one.

“I haven’t been in the hospital for 40 years, so I’m going to roll the dice,” she said. And if she winds up in the hospital? “I’ll just pay the bill.”

About 100 brokers nationwide are selling the plans, and interest “is picking up quick,” said Edward Pettola, co-owner and founder of Xpress, which for years has sold programs that offer discounts on dental, vision, and prescription services.

Caveat emptor

Experts question whether the plans exempt policyholders from the ACA’s tax penalty for not having “qualified” coverage, defined as a policy from an employer, a government program or a licensed product purchased on the individual market.

The penalty for tax year 2017 is the greater of a flat fee or a percentage of income. The annual total could range from as little as $695 for an individual to as much as $3,264 for a family.

President Trump issued an executive order in October designed to loosen insurance restrictions on lower-cost, alternative forms of coverage, but the administration has not signaled its view on what would be deemed qualified coverage.

Responding to questions from KHN, officials from Apex and Xpress said their plans are designed to be affordable, not to mimic ACA health plans.

“If that is what we are expected to do, just deliver what every Marketplace plan or carriers do, provide a Bronze, Silver Plan, etc., it would not solve the problem in addressing a benefit plan that is affordable,” the companies said in a joint email on Nov. 14. “Individuals are not required to have an insurance plan, but a plan that meets minimum essential coverage, the required preventive care services.”

Mr. Bemoras, in a separate interview, said his company has been selling a version of the plan to employers since 2015.

“As we see the political environment moving and wavering and not understanding what needs to be done, the individual market became extremely attractive to us,” Mr. Bemoras said.

Still, experts who reviewed the plans for KHN said policies sold to individuals must cover 10 broad categories of health care to qualify as ACA-compliant, including hospitalization and emergency room care, and cannot set annual or lifetime limits.

The Xpress/Apex programs do set limits, paying zero to $2,500 annually toward hospital care. Doctor visits are covered for a $20 copayment, but coverage is limited to three per year. Lab tests are limited to 5 services annually. To get those prices, patients have to use a physician or facility in the PHCS network, which says it has 900,000 providers nationwide. Low-cost generics are covered for as little as a $1 copay, but the amount patients pay rises sharply for more expensive drugs.

“I’m very skeptical,” said attorney Alden J. Bianchi of Mintz Levin, who advises firms on employee benefits. “That would be hard [to do] because in the individual market, you have to cover all the essential health benefits.”

The details can be confusing, partly because federal law allows group health plans – generally those offered by large employers – to provide workers with self-funded, minimal coverage plans like those offered by Apex, Mr. Bianchi said.

Apex’s Mr. Shull recently said in an email that the firm simply wants to offer coverage to people who otherwise could not afford an ACA plan.

“There will be states that want to halt this. Why, I do not understand,” he wrote. “Would an individual be better off going without anything? If they need prescriptions, lab or imaging services subject to a small copay, would you want to be the one to deny them?”

Some consumers might find the price attractive, but also find themselves vulnerable to unexpected costs, including the tax liability.

Ms. Harper, the broker who signed up for one of the plans, remains confident: “As long as Xpress satisfies the [mandate], which I’m told it does, my clients are in good hands. Even if it doesn’t, I don’t think it’s a big deal. You are saving that [the tax penalty amount] a month.”

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house – the bathroom on the second floor.

“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Ms. Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.

It’s not just the loss of her son that upsets Ms. Brocks-Capla; she believes that if Mr. Jones had gotten the proper medical care, he might still be alive today.

Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multiorgan failure, and stroke. About 100,000 people in the United States have sickle cell disease, and most of them are African American.

Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.

Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, PhD, a professor at Princeton University who writes about the history of the disease.

It is also an example of the broader discrimination experienced by African Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation, and Harvard T.H. Chan School of Public Health.

“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Elliott Vichinsky, MD, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”

Indeed, with the proper care, Dr. Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.

Dr. Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Dr. Vichinsky’s patient since childhood.

“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Mr. Perkins said.

When Mr. Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.

“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours – all I needed was an emergency blood transfusion and I was awake,” Mr. Perkins recalled.

Kareem Jones lived just across the bay from Mr. Perkins, but he had a profoundly different experience.

Mr. Jones’ mother, Ms. Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Mr. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care – that’s not consistent care for a disease of this type,” said Ms. Brocks-Capla.

Ms. Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Mr. Jones had frequent pain crises. Usually he ended up in the emergency department where, Ms. Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.

When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’ ”

Studies have found that sickle cell patients have to wait up to 50% longer for help in the emergency department than do other pain patients. The opioid crisis has made things even worse, Dr. Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.

Despite his illness, Mr. Jones fought to have a normal life. He lived with his girlfriend, had a daughter, and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.

For years, he took hydroxyurea, but it had side effects, and after a while Mr. Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” said Ms. Brocks-Capla.

Indeed, hydroxyurea, which the Food and Drug Administration first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Mr. Jones’ lifetime. In July, the FDA approved a second drug, Endari (L-glutamine oral powder), specifically to treat patients with sickle cell disease.

Funding by the federal government and private foundations for the disease pales in comparison to other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care and most often occurs in Caucasians. Cystic fibrosis gets 7-11 times more funding per patient than does sickle cell disease, according to a 2013 study in the journal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.

“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Dr. Vichinsky said of sickle cell patients. “The death rate is increasing. The quality of care is going down.”

Without a new medication, Mr. Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital, with the worst pain of his life. The doctors stabilized him and gave him pain meds but did not diagnose the underlying cause of the crisis. He was released to his mother’s care, still in incredible pain.

At home, Ms. Brocks-Capla ran him a warm bath to try to soothe his pain and went downstairs to get him a change of clothes. As she came back up the stairs, she heard loud banging against the bathroom walls.

“So I run into the bathroom and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’ ”

She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she said.

It turned out Mr. Jones had a series of small strokes. His organs were in failure, something Ms. Brocks-Capla said the hospital missed. She believes his death could have been prevented with consistent care – the kind he got as a child. Dr. Vichinsky thinks she is probably right.

“I would say 40% or more of the deaths I’ve had recently have been preventable – I mean totally preventable,” he said, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this – this isn’t a knowledge issue. It’s an access issue.”

Dr. Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent premature death. Patients at these clinics live 2 decades longer than the average sickle cell patient.

Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well, because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle even to access treatments that have been around for decades, Dr. Vichinsky said.

The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Dr. Vichinsky said.

In the 1960s and 1970s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at its “survival conferences” across the country.

“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night – and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.

The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle cell disease.”

For a while, funding did increase, newborn screening took hold, and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed, and life expectancy started dropping again.

Dr. Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips, and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.

“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” said Mr. Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. KHN’s coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation.

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house – the bathroom on the second floor.

“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Ms. Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.

It’s not just the loss of her son that upsets Ms. Brocks-Capla; she believes that if Mr. Jones had gotten the proper medical care, he might still be alive today.

Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multiorgan failure, and stroke. About 100,000 people in the United States have sickle cell disease, and most of them are African American.

Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.

Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, PhD, a professor at Princeton University who writes about the history of the disease.

It is also an example of the broader discrimination experienced by African Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation, and Harvard T.H. Chan School of Public Health.

“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Elliott Vichinsky, MD, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”

Indeed, with the proper care, Dr. Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.

Dr. Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Dr. Vichinsky’s patient since childhood.

“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Mr. Perkins said.

When Mr. Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.

“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours – all I needed was an emergency blood transfusion and I was awake,” Mr. Perkins recalled.

Kareem Jones lived just across the bay from Mr. Perkins, but he had a profoundly different experience.

Mr. Jones’ mother, Ms. Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Mr. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care – that’s not consistent care for a disease of this type,” said Ms. Brocks-Capla.

Ms. Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Mr. Jones had frequent pain crises. Usually he ended up in the emergency department where, Ms. Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.

When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’ ”

Studies have found that sickle cell patients have to wait up to 50% longer for help in the emergency department than do other pain patients. The opioid crisis has made things even worse, Dr. Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.

Despite his illness, Mr. Jones fought to have a normal life. He lived with his girlfriend, had a daughter, and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.

For years, he took hydroxyurea, but it had side effects, and after a while Mr. Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” said Ms. Brocks-Capla.

Indeed, hydroxyurea, which the Food and Drug Administration first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Mr. Jones’ lifetime. In July, the FDA approved a second drug, Endari (L-glutamine oral powder), specifically to treat patients with sickle cell disease.

Funding by the federal government and private foundations for the disease pales in comparison to other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care and most often occurs in Caucasians. Cystic fibrosis gets 7-11 times more funding per patient than does sickle cell disease, according to a 2013 study in the journal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.

“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Dr. Vichinsky said of sickle cell patients. “The death rate is increasing. The quality of care is going down.”

Without a new medication, Mr. Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital, with the worst pain of his life. The doctors stabilized him and gave him pain meds but did not diagnose the underlying cause of the crisis. He was released to his mother’s care, still in incredible pain.

At home, Ms. Brocks-Capla ran him a warm bath to try to soothe his pain and went downstairs to get him a change of clothes. As she came back up the stairs, she heard loud banging against the bathroom walls.

“So I run into the bathroom and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’ ”

She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she said.

It turned out Mr. Jones had a series of small strokes. His organs were in failure, something Ms. Brocks-Capla said the hospital missed. She believes his death could have been prevented with consistent care – the kind he got as a child. Dr. Vichinsky thinks she is probably right.

“I would say 40% or more of the deaths I’ve had recently have been preventable – I mean totally preventable,” he said, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this – this isn’t a knowledge issue. It’s an access issue.”

Dr. Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent premature death. Patients at these clinics live 2 decades longer than the average sickle cell patient.

Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well, because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle even to access treatments that have been around for decades, Dr. Vichinsky said.

The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Dr. Vichinsky said.

In the 1960s and 1970s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at its “survival conferences” across the country.

“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night – and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.

The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle cell disease.”

For a while, funding did increase, newborn screening took hold, and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed, and life expectancy started dropping again.

Dr. Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips, and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.

“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” said Mr. Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. KHN’s coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation.

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house – the bathroom on the second floor.

“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Ms. Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.

It’s not just the loss of her son that upsets Ms. Brocks-Capla; she believes that if Mr. Jones had gotten the proper medical care, he might still be alive today.

Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multiorgan failure, and stroke. About 100,000 people in the United States have sickle cell disease, and most of them are African American.

Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.

Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, PhD, a professor at Princeton University who writes about the history of the disease.

It is also an example of the broader discrimination experienced by African Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation, and Harvard T.H. Chan School of Public Health.

“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Elliott Vichinsky, MD, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”

Indeed, with the proper care, Dr. Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.

Dr. Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Dr. Vichinsky’s patient since childhood.

“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Mr. Perkins said.

When Mr. Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.

“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours – all I needed was an emergency blood transfusion and I was awake,” Mr. Perkins recalled.

Kareem Jones lived just across the bay from Mr. Perkins, but he had a profoundly different experience.

Mr. Jones’ mother, Ms. Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Mr. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care – that’s not consistent care for a disease of this type,” said Ms. Brocks-Capla.

Ms. Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Mr. Jones had frequent pain crises. Usually he ended up in the emergency department where, Ms. Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.

When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’ ”

Studies have found that sickle cell patients have to wait up to 50% longer for help in the emergency department than do other pain patients. The opioid crisis has made things even worse, Dr. Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.

Despite his illness, Mr. Jones fought to have a normal life. He lived with his girlfriend, had a daughter, and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.

For years, he took hydroxyurea, but it had side effects, and after a while Mr. Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” said Ms. Brocks-Capla.

Indeed, hydroxyurea, which the Food and Drug Administration first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Mr. Jones’ lifetime. In July, the FDA approved a second drug, Endari (L-glutamine oral powder), specifically to treat patients with sickle cell disease.

Funding by the federal government and private foundations for the disease pales in comparison to other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care and most often occurs in Caucasians. Cystic fibrosis gets 7-11 times more funding per patient than does sickle cell disease, according to a 2013 study in the journal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.

“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Dr. Vichinsky said of sickle cell patients. “The death rate is increasing. The quality of care is going down.”

Without a new medication, Mr. Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital, with the worst pain of his life. The doctors stabilized him and gave him pain meds but did not diagnose the underlying cause of the crisis. He was released to his mother’s care, still in incredible pain.

At home, Ms. Brocks-Capla ran him a warm bath to try to soothe his pain and went downstairs to get him a change of clothes. As she came back up the stairs, she heard loud banging against the bathroom walls.

“So I run into the bathroom and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’ ”

She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she said.

It turned out Mr. Jones had a series of small strokes. His organs were in failure, something Ms. Brocks-Capla said the hospital missed. She believes his death could have been prevented with consistent care – the kind he got as a child. Dr. Vichinsky thinks she is probably right.

“I would say 40% or more of the deaths I’ve had recently have been preventable – I mean totally preventable,” he said, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this – this isn’t a knowledge issue. It’s an access issue.”

Dr. Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent premature death. Patients at these clinics live 2 decades longer than the average sickle cell patient.

Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well, because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle even to access treatments that have been around for decades, Dr. Vichinsky said.

The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Dr. Vichinsky said.

In the 1960s and 1970s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at its “survival conferences” across the country.

“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night – and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.

The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle cell disease.”

For a while, funding did increase, newborn screening took hold, and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed, and life expectancy started dropping again.

Dr. Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips, and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.

“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” said Mr. Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. KHN’s coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation.

After nearly 2 months of negotiations, key senators said on Oct. 17 that they have reached a bipartisan deal on a proposal intended to stabilize the Affordable Care Act’s insurance market, which has been rocked by recent actions by President Donald Trump.

Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), respectively the chairman and the top Democrat of the Senate Health, Education, Labor, and Pensions Committee, negotiated the emerging deal. The milestone agreement, they said, would guarantee payment of cost-sharing reduction subsidies that help some policyholders with low incomes afford their deductibles and other out-of-pocket costs for 2 years, 2018 and 2019.

President Trump announced on Oct. 12 that he would stop funding the subsidies, which also have been the subject of a long-running lawsuit.

Even if it fails to become law, the deal marks a singular achievement that has been almost completely missing in Congress for the past 8 years – a bipartisan compromise on how to make the nation’s health insurance system work.

“This is an agreement I am proud to support,” Sen. Murray said on the Senate floor, “because of the message it sends about how to get things done.”

The proposal – which will require 60 votes to pass the Senate and agreement from a still-dubious House of Representatives – also would restore $110 million in ACA outreach funding cut by the Trump administration. That funding would help guide eligible individuals to sign up for coverage on the health insurance exchanges during the open enrollment period that runs from Nov. 1 to Dec. 15.

In exchange for those provisions, urged by Democrats and state officials, Republicans would win some changes to make it easier for states to apply for waivers that would let them experiment with alternative ways to provide and subsidize health insurance. The deal also would allow the sale of less comprehensive catastrophic plans in the health exchanges. Currently, such plans can be sold only to those under age 30 years.

On the Senate floor, Sen. Alexander said, “This agreement avoids chaos. I don’t know a Democrat or a Republican who benefits from chaos.”

Senate Majority Leader Mitch McConnell (R-Ky.) reserved judgment about the deal.

Both parties still have some major disagreements when it comes to health care, Senate Minority Leader Chuck Schumer (D-N.Y.) told reporters on Oct. 17, but “I think there’s a growing consensus that in the short term we need stability in the markets. So we’ve achieved stability if this agreement becomes law.”

More than 60 senators have already participated in the meetings that led to the deal, Sen. Alexander said on the Senate floor. But the path to passage in the House is uncertain – with many conservatives vehemently opposed to anything that could be construed as helping the ACA succeed.

Rep. Mark Walker (R-N.C.), chairman of the conservative Republican Study Committee, tweeted on Oct. 17: “The GOP should focus on repealing & replacing Obamacare, not trying to save it. This bailout is unacceptable.”

Both Sen. Murray and Sen. Alexander said that they were still struggling over language to make sure that if the cost-sharing payments are resumed, insurers would not receive a windfall by keeping both those payments and the higher premiums that many states are allowing in anticipation of the payments being ended.

“We want to make sure that the cost-sharing payments go to the benefit of consumers, not the insurance companies,” Sen. Alexander said.

President Trump, who as recently as Oct. 16 called the cost-sharing subsidies “a payoff” to insurance companies, took credit for the negotiations. “If I didn’t cut the CSRs, they wouldn’t be meeting,” he said. That was not, in fact, the case. The negotiations had picked up some weeks ago after being called off earlier in September while the Senate tried for one last-ditch repeal vote.

On Oct. 13, White House Budget Director Mick Mulvaney told Politico that the president would not allow a short-term fix, calling a restoration of the cost-sharing reduction funds “corporate welfare and bailouts for the insurance companies.”

But on Oct. 17 the president hailed the deal. “We think it’s going to not only save money, but give people much better health care with a very, very much smaller premium spike,” he told reporters.
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

After nearly 2 months of negotiations, key senators said on Oct. 17 that they have reached a bipartisan deal on a proposal intended to stabilize the Affordable Care Act’s insurance market, which has been rocked by recent actions by President Donald Trump.

Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), respectively the chairman and the top Democrat of the Senate Health, Education, Labor, and Pensions Committee, negotiated the emerging deal. The milestone agreement, they said, would guarantee payment of cost-sharing reduction subsidies that help some policyholders with low incomes afford their deductibles and other out-of-pocket costs for 2 years, 2018 and 2019.

President Trump announced on Oct. 12 that he would stop funding the subsidies, which also have been the subject of a long-running lawsuit.

Even if it fails to become law, the deal marks a singular achievement that has been almost completely missing in Congress for the past 8 years – a bipartisan compromise on how to make the nation’s health insurance system work.

“This is an agreement I am proud to support,” Sen. Murray said on the Senate floor, “because of the message it sends about how to get things done.”

The proposal – which will require 60 votes to pass the Senate and agreement from a still-dubious House of Representatives – also would restore $110 million in ACA outreach funding cut by the Trump administration. That funding would help guide eligible individuals to sign up for coverage on the health insurance exchanges during the open enrollment period that runs from Nov. 1 to Dec. 15.

In exchange for those provisions, urged by Democrats and state officials, Republicans would win some changes to make it easier for states to apply for waivers that would let them experiment with alternative ways to provide and subsidize health insurance. The deal also would allow the sale of less comprehensive catastrophic plans in the health exchanges. Currently, such plans can be sold only to those under age 30 years.

On the Senate floor, Sen. Alexander said, “This agreement avoids chaos. I don’t know a Democrat or a Republican who benefits from chaos.”

Senate Majority Leader Mitch McConnell (R-Ky.) reserved judgment about the deal.

Both parties still have some major disagreements when it comes to health care, Senate Minority Leader Chuck Schumer (D-N.Y.) told reporters on Oct. 17, but “I think there’s a growing consensus that in the short term we need stability in the markets. So we’ve achieved stability if this agreement becomes law.”

More than 60 senators have already participated in the meetings that led to the deal, Sen. Alexander said on the Senate floor. But the path to passage in the House is uncertain – with many conservatives vehemently opposed to anything that could be construed as helping the ACA succeed.

Rep. Mark Walker (R-N.C.), chairman of the conservative Republican Study Committee, tweeted on Oct. 17: “The GOP should focus on repealing & replacing Obamacare, not trying to save it. This bailout is unacceptable.”

Both Sen. Murray and Sen. Alexander said that they were still struggling over language to make sure that if the cost-sharing payments are resumed, insurers would not receive a windfall by keeping both those payments and the higher premiums that many states are allowing in anticipation of the payments being ended.

“We want to make sure that the cost-sharing payments go to the benefit of consumers, not the insurance companies,” Sen. Alexander said.

President Trump, who as recently as Oct. 16 called the cost-sharing subsidies “a payoff” to insurance companies, took credit for the negotiations. “If I didn’t cut the CSRs, they wouldn’t be meeting,” he said. That was not, in fact, the case. The negotiations had picked up some weeks ago after being called off earlier in September while the Senate tried for one last-ditch repeal vote.

On Oct. 13, White House Budget Director Mick Mulvaney told Politico that the president would not allow a short-term fix, calling a restoration of the cost-sharing reduction funds “corporate welfare and bailouts for the insurance companies.”

But on Oct. 17 the president hailed the deal. “We think it’s going to not only save money, but give people much better health care with a very, very much smaller premium spike,” he told reporters.
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

After nearly 2 months of negotiations, key senators said on Oct. 17 that they have reached a bipartisan deal on a proposal intended to stabilize the Affordable Care Act’s insurance market, which has been rocked by recent actions by President Donald Trump.

Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), respectively the chairman and the top Democrat of the Senate Health, Education, Labor, and Pensions Committee, negotiated the emerging deal. The milestone agreement, they said, would guarantee payment of cost-sharing reduction subsidies that help some policyholders with low incomes afford their deductibles and other out-of-pocket costs for 2 years, 2018 and 2019.

President Trump announced on Oct. 12 that he would stop funding the subsidies, which also have been the subject of a long-running lawsuit.

Even if it fails to become law, the deal marks a singular achievement that has been almost completely missing in Congress for the past 8 years – a bipartisan compromise on how to make the nation’s health insurance system work.

“This is an agreement I am proud to support,” Sen. Murray said on the Senate floor, “because of the message it sends about how to get things done.”

The proposal – which will require 60 votes to pass the Senate and agreement from a still-dubious House of Representatives – also would restore $110 million in ACA outreach funding cut by the Trump administration. That funding would help guide eligible individuals to sign up for coverage on the health insurance exchanges during the open enrollment period that runs from Nov. 1 to Dec. 15.

In exchange for those provisions, urged by Democrats and state officials, Republicans would win some changes to make it easier for states to apply for waivers that would let them experiment with alternative ways to provide and subsidize health insurance. The deal also would allow the sale of less comprehensive catastrophic plans in the health exchanges. Currently, such plans can be sold only to those under age 30 years.

On the Senate floor, Sen. Alexander said, “This agreement avoids chaos. I don’t know a Democrat or a Republican who benefits from chaos.”

Senate Majority Leader Mitch McConnell (R-Ky.) reserved judgment about the deal.

Both parties still have some major disagreements when it comes to health care, Senate Minority Leader Chuck Schumer (D-N.Y.) told reporters on Oct. 17, but “I think there’s a growing consensus that in the short term we need stability in the markets. So we’ve achieved stability if this agreement becomes law.”

More than 60 senators have already participated in the meetings that led to the deal, Sen. Alexander said on the Senate floor. But the path to passage in the House is uncertain – with many conservatives vehemently opposed to anything that could be construed as helping the ACA succeed.

Rep. Mark Walker (R-N.C.), chairman of the conservative Republican Study Committee, tweeted on Oct. 17: “The GOP should focus on repealing & replacing Obamacare, not trying to save it. This bailout is unacceptable.”

Both Sen. Murray and Sen. Alexander said that they were still struggling over language to make sure that if the cost-sharing payments are resumed, insurers would not receive a windfall by keeping both those payments and the higher premiums that many states are allowing in anticipation of the payments being ended.

“We want to make sure that the cost-sharing payments go to the benefit of consumers, not the insurance companies,” Sen. Alexander said.

President Trump, who as recently as Oct. 16 called the cost-sharing subsidies “a payoff” to insurance companies, took credit for the negotiations. “If I didn’t cut the CSRs, they wouldn’t be meeting,” he said. That was not, in fact, the case. The negotiations had picked up some weeks ago after being called off earlier in September while the Senate tried for one last-ditch repeal vote.

On Oct. 13, White House Budget Director Mick Mulvaney told Politico that the president would not allow a short-term fix, calling a restoration of the cost-sharing reduction funds “corporate welfare and bailouts for the insurance companies.”

But on Oct. 17 the president hailed the deal. “We think it’s going to not only save money, but give people much better health care with a very, very much smaller premium spike,” he told reporters.
 

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.