Rheum for Action

I receive updates and stories every day from rheumatologists and their offices regarding the egregious behavior of various health care entities that profit off patients and harm them in the process. If you know me, you know I’m willing to tell and retell horror stories of pharmacy benefit managers (PBMs), especially of how they construct formularies for the most profit, again, harming patients in the process. It’s critical to serve as a voice to counter the PBM trade group, the Pharmaceutical Care Management Association, which continues to extol how PBMs are essentially saving our country billions ... one restrictive formulary at a time.

It does seem that we are constantly fighting against something:

• Patients arbitrarily being switched to completely different medications to “save” money. These “savings” are pocketed by the middlemen, not the patients or the employers paying for the coverage.
• Copay cards for medications that have no lower-cost alternative. These fill the coffers of the health plans without patients getting credit toward their deductible.
• Mandating that patients move from receiving their infusions under the watchful eye of their rheumatologist’s office to home infusion. This has been shown to be more dangerous for our patients.
• Wasting hours on prior authorization paperwork for needed medication. We know that these are nearly always approved, and thereby delay treatment unnecessarily.

By now you might wonder: “Where is the good news?” In spite of the daily barrage of battles that come our way, rheumatologists continue to do good and improve the lives of our patients. I would go as far as to say that we are prospering in spite of the challenges. Why? Because every day there are wins. Seeing that smile for the first time on the face of a patient who finally has answers and a treatment plan for their newly diagnosed RA. Walking out of the exam room and having patients and their parents give you a hug. Helping a dad be able to walk his daughter down the aisle with ease. On the clinical front, I don’t have to tell you: We score wins every single day.

There is good news on the advocacy side, too. In my own state of Louisiana, this legislative session, we passed a number of bills that are beneficial to our patients, including a bill to stop the aforementioned attacks on copay assistance by state regulated payers. We even blocked one that the Rheumatology Alliance of Louisiana felt would be harmful to our patients. The wins this session follow wins during the previous session, including passage of new and updated laws to put more prescribing power back in the hands of physicians when medication access is unnecessarily restricted by step therapy. While there has been some doubt as to whether these state laws actually work, I can attest that the new Louisiana step therapy law has allowed stable patients to remain on their medication in a number of specialties, including rheumatology and ophthalmology.

My own state of Louisiana is not the only one where the rheumatology community has seen legislative successes, and that speaks to the strength of the network that rheumatologists have built within their states and across the country, as well as our passion for our patients. Just 3 years after the emergence of accumulator programs, 11 states have already seen fit to curtail their use (Arizona, Arkansas, Connecticut, Georgia, Illinois, Kentucky, Louisiana, Oklahoma, Tennessee, Virginia, and West Virginia), and over 20 states considered adopting similar legislation this year. Reforms to the use of step therapy continue their drumbeat across the country, with three more states (Arkansas, Nebraska, and Oregon) having bills signed into law this year. West Virginia took a bold step to reduce patient out-of-pocket costs at the point of sale by an amount commensurate with 100% of rebates received by a PBM. These material policy wins demonstrate how we continue to successfully chip away at the opacity of PBMs and the rebate system, which is truly at the root of so many of the issues affecting our patients’ care.

At the federal level, rheumatologists engage both with Congress and the administration to ensure that our patients’ voices are represented against very well funded and organized forces like insurers and PBMs. Rheumatologists weighed in on issues ranging from Medicaid payment policy, to copay accumulators in the exchanges, to creating transparency and fixing misaligned incentives in the pharmaceutical supply chain. We drive coalition engagement on issues of shared interest with other specialty and provider groups, such as extending a moratorium on Medicare sequestration. We also engage on narrow issues as they arise: For example, I personally testified before Congress that any proposed limitations on pharmaceutical samples must consider the fact that these samples can provide a critical bridge for patients waiting for their insurers to approve their needed medication. And, perhaps most importantly, we have defeated misguided and potentially devastating Part B payment reform models from the Innovation Center three separate times.

There is more work to be done. And to make it easier to find “Rheum for Action” in your daily work, the Coalition of State Rheumatology Organizations has tools on our website that summarize legislation and facilitate engagement with policy makers, including thank you messages to those who supported our priorities to celebrate the good news this year.

So yes, there is good news now, and more to come! I am optimistic that we will continue to see these advocacy wins, which will help to ensure that those hugs we share with our patients will continue long into the future.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].

I receive updates and stories every day from rheumatologists and their offices regarding the egregious behavior of various health care entities that profit off patients and harm them in the process. If you know me, you know I’m willing to tell and retell horror stories of pharmacy benefit managers (PBMs), especially of how they construct formularies for the most profit, again, harming patients in the process. It’s critical to serve as a voice to counter the PBM trade group, the Pharmaceutical Care Management Association, which continues to extol how PBMs are essentially saving our country billions ... one restrictive formulary at a time.

It does seem that we are constantly fighting against something:

• Patients arbitrarily being switched to completely different medications to “save” money. These “savings” are pocketed by the middlemen, not the patients or the employers paying for the coverage.
• Copay cards for medications that have no lower-cost alternative. These fill the coffers of the health plans without patients getting credit toward their deductible.
• Mandating that patients move from receiving their infusions under the watchful eye of their rheumatologist’s office to home infusion. This has been shown to be more dangerous for our patients.
• Wasting hours on prior authorization paperwork for needed medication. We know that these are nearly always approved, and thereby delay treatment unnecessarily.

By now you might wonder: “Where is the good news?” In spite of the daily barrage of battles that come our way, rheumatologists continue to do good and improve the lives of our patients. I would go as far as to say that we are prospering in spite of the challenges. Why? Because every day there are wins. Seeing that smile for the first time on the face of a patient who finally has answers and a treatment plan for their newly diagnosed RA. Walking out of the exam room and having patients and their parents give you a hug. Helping a dad be able to walk his daughter down the aisle with ease. On the clinical front, I don’t have to tell you: We score wins every single day.

There is good news on the advocacy side, too. In my own state of Louisiana, this legislative session, we passed a number of bills that are beneficial to our patients, including a bill to stop the aforementioned attacks on copay assistance by state regulated payers. We even blocked one that the Rheumatology Alliance of Louisiana felt would be harmful to our patients. The wins this session follow wins during the previous session, including passage of new and updated laws to put more prescribing power back in the hands of physicians when medication access is unnecessarily restricted by step therapy. While there has been some doubt as to whether these state laws actually work, I can attest that the new Louisiana step therapy law has allowed stable patients to remain on their medication in a number of specialties, including rheumatology and ophthalmology.

My own state of Louisiana is not the only one where the rheumatology community has seen legislative successes, and that speaks to the strength of the network that rheumatologists have built within their states and across the country, as well as our passion for our patients. Just 3 years after the emergence of accumulator programs, 11 states have already seen fit to curtail their use (Arizona, Arkansas, Connecticut, Georgia, Illinois, Kentucky, Louisiana, Oklahoma, Tennessee, Virginia, and West Virginia), and over 20 states considered adopting similar legislation this year. Reforms to the use of step therapy continue their drumbeat across the country, with three more states (Arkansas, Nebraska, and Oregon) having bills signed into law this year. West Virginia took a bold step to reduce patient out-of-pocket costs at the point of sale by an amount commensurate with 100% of rebates received by a PBM. These material policy wins demonstrate how we continue to successfully chip away at the opacity of PBMs and the rebate system, which is truly at the root of so many of the issues affecting our patients’ care.

At the federal level, rheumatologists engage both with Congress and the administration to ensure that our patients’ voices are represented against very well funded and organized forces like insurers and PBMs. Rheumatologists weighed in on issues ranging from Medicaid payment policy, to copay accumulators in the exchanges, to creating transparency and fixing misaligned incentives in the pharmaceutical supply chain. We drive coalition engagement on issues of shared interest with other specialty and provider groups, such as extending a moratorium on Medicare sequestration. We also engage on narrow issues as they arise: For example, I personally testified before Congress that any proposed limitations on pharmaceutical samples must consider the fact that these samples can provide a critical bridge for patients waiting for their insurers to approve their needed medication. And, perhaps most importantly, we have defeated misguided and potentially devastating Part B payment reform models from the Innovation Center three separate times.

There is more work to be done. And to make it easier to find “Rheum for Action” in your daily work, the Coalition of State Rheumatology Organizations has tools on our website that summarize legislation and facilitate engagement with policy makers, including thank you messages to those who supported our priorities to celebrate the good news this year.

So yes, there is good news now, and more to come! I am optimistic that we will continue to see these advocacy wins, which will help to ensure that those hugs we share with our patients will continue long into the future.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].

I receive updates and stories every day from rheumatologists and their offices regarding the egregious behavior of various health care entities that profit off patients and harm them in the process. If you know me, you know I’m willing to tell and retell horror stories of pharmacy benefit managers (PBMs), especially of how they construct formularies for the most profit, again, harming patients in the process. It’s critical to serve as a voice to counter the PBM trade group, the Pharmaceutical Care Management Association, which continues to extol how PBMs are essentially saving our country billions ... one restrictive formulary at a time.

It does seem that we are constantly fighting against something:

• Patients arbitrarily being switched to completely different medications to “save” money. These “savings” are pocketed by the middlemen, not the patients or the employers paying for the coverage.
• Copay cards for medications that have no lower-cost alternative. These fill the coffers of the health plans without patients getting credit toward their deductible.
• Mandating that patients move from receiving their infusions under the watchful eye of their rheumatologist’s office to home infusion. This has been shown to be more dangerous for our patients.
• Wasting hours on prior authorization paperwork for needed medication. We know that these are nearly always approved, and thereby delay treatment unnecessarily.

By now you might wonder: “Where is the good news?” In spite of the daily barrage of battles that come our way, rheumatologists continue to do good and improve the lives of our patients. I would go as far as to say that we are prospering in spite of the challenges. Why? Because every day there are wins. Seeing that smile for the first time on the face of a patient who finally has answers and a treatment plan for their newly diagnosed RA. Walking out of the exam room and having patients and their parents give you a hug. Helping a dad be able to walk his daughter down the aisle with ease. On the clinical front, I don’t have to tell you: We score wins every single day.

There is good news on the advocacy side, too. In my own state of Louisiana, this legislative session, we passed a number of bills that are beneficial to our patients, including a bill to stop the aforementioned attacks on copay assistance by state regulated payers. We even blocked one that the Rheumatology Alliance of Louisiana felt would be harmful to our patients. The wins this session follow wins during the previous session, including passage of new and updated laws to put more prescribing power back in the hands of physicians when medication access is unnecessarily restricted by step therapy. While there has been some doubt as to whether these state laws actually work, I can attest that the new Louisiana step therapy law has allowed stable patients to remain on their medication in a number of specialties, including rheumatology and ophthalmology.

My own state of Louisiana is not the only one where the rheumatology community has seen legislative successes, and that speaks to the strength of the network that rheumatologists have built within their states and across the country, as well as our passion for our patients. Just 3 years after the emergence of accumulator programs, 11 states have already seen fit to curtail their use (Arizona, Arkansas, Connecticut, Georgia, Illinois, Kentucky, Louisiana, Oklahoma, Tennessee, Virginia, and West Virginia), and over 20 states considered adopting similar legislation this year. Reforms to the use of step therapy continue their drumbeat across the country, with three more states (Arkansas, Nebraska, and Oregon) having bills signed into law this year. West Virginia took a bold step to reduce patient out-of-pocket costs at the point of sale by an amount commensurate with 100% of rebates received by a PBM. These material policy wins demonstrate how we continue to successfully chip away at the opacity of PBMs and the rebate system, which is truly at the root of so many of the issues affecting our patients’ care.

At the federal level, rheumatologists engage both with Congress and the administration to ensure that our patients’ voices are represented against very well funded and organized forces like insurers and PBMs. Rheumatologists weighed in on issues ranging from Medicaid payment policy, to copay accumulators in the exchanges, to creating transparency and fixing misaligned incentives in the pharmaceutical supply chain. We drive coalition engagement on issues of shared interest with other specialty and provider groups, such as extending a moratorium on Medicare sequestration. We also engage on narrow issues as they arise: For example, I personally testified before Congress that any proposed limitations on pharmaceutical samples must consider the fact that these samples can provide a critical bridge for patients waiting for their insurers to approve their needed medication. And, perhaps most importantly, we have defeated misguided and potentially devastating Part B payment reform models from the Innovation Center three separate times.

There is more work to be done. And to make it easier to find “Rheum for Action” in your daily work, the Coalition of State Rheumatology Organizations has tools on our website that summarize legislation and facilitate engagement with policy makers, including thank you messages to those who supported our priorities to celebrate the good news this year.

So yes, there is good news now, and more to come! I am optimistic that we will continue to see these advocacy wins, which will help to ensure that those hugs we share with our patients will continue long into the future.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].

Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.

As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?

For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.

Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”

The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
 

The four Ps of advocacy

Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.

You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.

Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.

Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.

Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.

Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.

Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].

Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.

As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?

For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.

Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”

The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
 

The four Ps of advocacy

Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.

You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.

Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.

Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.

Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.

Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.

Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].

Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.

As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?

For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.

Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”

The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
 

The four Ps of advocacy

Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.

You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.

Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.

Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.

Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.

Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.

Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.

Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at [email protected].