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Applying the Lessons Learned From Katrina
Almost three years after Hurricane Katrina, as natural disasters occur around the world with seemingly greater frequency, is the United States better prepared to respond to a disaster in our own backyard? And what improvements are still needed if health care providers, including NPs and PAs, are going to be utilized to the full extent of their capabilities?
Paul Bollinger, MPH, Emergency Medical Services Senior Advisor for the Portland, Oregon–based Medical Teams International (MTI), quotes MTI’s director of disaster response as saying, “It’s easier to send a doctor to Liberia than it was to Louisiana.” Bollinger adds, “That’s a huge issue, portability, in times of disaster—and yes, governors can change those laws, but I think by the time the bureaucracy wheels turn, it’s too late.”
Uniform Emergency Volunteer Health Practitioners Act
Greasing those bureaucratic wheels is the aim of the Uniform Emergency Volunteer Health Practitioners Act (UEVHPA), a piece of model legislation drafted by the Uniform Law Commission (ULC). According to Eric Fish, Legislative Counsel for the ULC, the goal of the UEVHPA is “to facilitate a better response to large-scale disasters by getting rid of some of the red tape and paperwork and things that could slow down responders.”
The ULC decided to address this issue as a direct result of what happened during and after Hurricanes Katrina and Rita struck the US Gulf Coast, laying bare the many levels on which bureaucracy and disorganization stymied relief efforts. “A few of the commissioners had family members involved with the medical response [to Katrina],” Fish says, “and it was brought up that way. And then, working with groups such as the Red Cross, it became apparent that some quick action in this field of law would be beneficial.”
Usually, it takes three to four years for the ULC to produce model legislation, from the time an area of interest (such as emergency response) is proposed to the point at which the commissioners approve the final version. In the case of the UEVHPA, most of the act was approved the year after the Katrina disaster, with additional sections addressing liability and workers’ compensation approved last year.
Colorado, Kentucky, and Tennessee were the first states to enact the UEVHPA in 2006 and 2007. In 2008, the act has been introduced in 12 states; so far, Indiana and New Mexico have enacted it. (See map.)
So how does the UEVHPA address some of the problems experienced in the aftermath of Katrina? Two key points are outlined in the prefatory note to the act (available as a PDF at www.uevhpa.org):
• “To protect the public health and safety, the act requires that, prior to deployment, volunteers must be registered with public or private systems capable of determining that they have been properly licensed and are in good standing with their principal jurisdiction of practice” and
• “To alleviate confusion and uncertainty regarding the types of services that may be provided by volunteer health practitioners, the act requires volunteers to limit their practice to activities for which they are licensed, properly trained, and qualified to perform. Further, volunteer health practitioners must conform to scope-of-practice authorizations and restrictions imposed by the laws of host states, disaster response agencies and organizations, and host entities.”
“It doesn’t supersede any existing state law,” Fish explains. “What this does is just set up a registry that a state can call upon in times of disaster.” He employs a baseball analogy for clarification: “It’s like having people in your bullpen. You know who’s in the bullpen, you know what they can do, you’ll bring them up for whatever situation.”
But is it enough?
Beyond the UEVHPA
No single piece of model legislation will iron out every wrinkle the nation faces in disaster response. PAs and NPs have particular issues when it comes to practicing outside the state in which they are licensed—supervision by and collaboration with physicians, respectively.
Long before Katrina, the American Academy of Physician Assistants (AAPA) drafted model language saying that “any PA who is licensed in the state or licensed in another state or authorized to practice by a federal employer as a physician assistant should be able to provide whatever care they are able to in a disaster or emergency situation, with whatever supervision is available,” summarizes Ann Davis, PA-C, AAPA Director of State Government Affairs. Five states (soon to be six) have adopted AAPA’s model language; overall, 38 states have some sort of provision for recognizing PAs in disasters or emergencies.
AAPA doesn’t have an official position on the UEVHPA, but Davis says, “In my opinion, the bill is fine as drafted, because it defines ‘health care practitioner’ as anybody who is licensed to provide health care services in a state. It’s broad enough that I don’t think anybody would question if PAs were meant to be included.”
While the UEVHPA does not specifically address PAs’ supervision requirements, it has provided opportunities for PAs in individual states to resolve those issues separately. When Indiana was considering passage of the UEVHPA, Davis says, “we flagged the issue and said, ‘You know, this might be a good time—while the legislators are thinking about disaster response—to talk to somebody about putting the PA language someplace.’”
That place didn’t have to be within the UEVHPA: “If you’re looking for a uniform law, you don’t necessarily stick your own provisions on it—that seems a little invasive,” Davis observes. Instead, the PA disaster response language was introduced through an omnibus bill that was in the works.
Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for the American Academy of Nurse Practitioners, is a bit less sanguine about the UEVHPA. “They still haven’t fixed the issue,” she notes, which for NPs is “shedding the shackles of law that requires physician collaboration or delegation within some of the states that have obsolete laws.”
Section 8 of the UEVHPA, “Provision of Volunteer Health or Veterinary Services,” contains the following statements:
• “… a volunteer health practitioner shall adhere to the scope of practice for a similarly licensed practitioner established by the licensing provisions, practice acts, or other laws of this state” and
• “Except as otherwise provided in subsection (c) [which allows states the right to modify or restrict services provided by a volunteer], this [act] does not authorize the volunteer health practitioner to provide services that are outside the practitioner’s scope of practice, even if a similarly licensed practitioner in this state would be permitted to provide the services.”
What concerns Towers is that “we’re still going to the lowest common denominator. Bottom line is, NPs are prepared [educationally] the same way across the board, and being tied to a physician in some states, while in other states they are not, is really limiting.”
Towers says it would have been “very helpful” if the UEVHPA had included language that expressly gave states the right to lift supervision or collaboration requirements. “There are some states that have actually passed regulations and statutes that speak to this by saying, ‘If there is a disaster, then the need to be tied to a physician is lifted, for the period of time of the disaster,’” she points out.
But, as with the PAs’ supervision requirements, “that’s happening state by state, and it’s something we’re going to have to work on,” according to Towers.
Wanted: Team Players
One thing that everyone seems to agree on is that preregistration, precredentialing, and involvement in emergency or disaster response teams should be encouraged. To this end, the UEVHPA requires that volunteer health care providers be registered with a system that can confirm their licenses and credentials before they are deployed in response to a disaster.
“The use of registration systems is intended to (1) discourage the uncoordinated use of ‘spontaneous volunteers’ who may independently travel to the scene of a disaster without the support of public or private emergency response agencies,” the preface to the draft legislation reads, “and (2) promote the recruitment and training of volunteers in advance of emergency declarations, while also allowing and facilitating additional registrations at the time of an emergency.”
The increased emphasis on teams, from the community level on up, has been one of the biggest lessons acted on since Katrina. “The amount of planning that’s gone on post-Katrina is incredible,” MTI’s Bollinger says. “A lot of states are looking at creating medical volunteer corps, looking at PAs, NPs, physicians, and paramedical personnel, and gathering them into a database that they can tap into. You know, ‘OK, we need four PAs to go to this clinic, or this displaced persons site, and provide care.’ Boom, that’s in the database; we can launch those folks.”
So-called spontaneous volunteers, though well intentioned, “can put burdens on a fragile infrastructure,” observes Bollinger. “In some ways, you’re relocating the disaster.”
That’s why PAs and NPs are encouraged to join a medical response team—whether a Red Cross unit, a Disaster Medical Assistance Team, or a private agency like MTI. “The best help is not the person who grabs their medical bag and goes down alone,” Davis says. “It’s folks who are part of an organized system that are the most helpful. They show up with their own water and tools and people that they know how to work with.”
Organized units will often handle credentialing and registration, but clinicians can also register on their own so that their licensing information can be verified in advance, allowing them to be mobilized quickly in the event of an emergency. “Having to do any kind of registration once a disaster happens, of course, slows down the process,” Towers observes.
Keeping documentation up to date—including passports if you’ll be responding overseas—is important. And while Davis strongly advocates for advance registration and credential verification “so you don’t show up someplace with a handful of papers,” she also suggests that “there should be a place where you keep all of your core licensing documents, CPR certification, graduation records from school, those things, so that if you’re in a spot where you need to leave quickly, you can.”
National Issue
There is a touch of irony to the fact that the obstacles to international disaster response often relate to travel and access to remote sites, while within the US the obstacles have more to do with regulatory issues. “That’s the big hiccup, I think, of responding within the US,” says Bollinger, whose vast experience includes working on the MTI team that went to Indonesia in response to the tsunami in 2006. “We have all these laws in place: You must have medical direction, you must have signatures on this, this, and this. And that, I think, is going to become the albatross around our neck in domestic response, particularly for medical personnel.”
The difference? “National scope of practice,” Bollinger says. “The Ministry of Health in most of the countries we respond to, they’re the ones that call the shots.” Within the US, he adds, “We’re looking at significant health system change to make that a reality.”
It’s a reality (however unlikely) that not everyone would want anyway. After observing that most of the countries Bollinger refers to “are about the size of each of our states,” Towers notes that NPs “already have a national scope of practice. The states have set limits on that.” (This may or may not reinforce Bollinger’s point about bureaucracy.) Furthermore, Towers says, “I don’t think that we’re going to be able to create national practice acts. I don’t know that we even want to, for other reasons.”
When asked about national scope of practice, Davis responds, “My joke about that is, ‘I’m a young woman with good health habits, but I’m not going to live that long.’” She provides a brief history lesson for context, citing a 19th-century court case in which “we decided, at the Supreme Court level, that states would regulate health professionals as part of their duty to protect their citizens. People could make a very good case for this being something that the federal government should do, but that’s a big debate.”
On whatever level changes are made, the true test of how well the US has learned the lessons imparted by Hurricane Katrina will come only in the wake of another large-scale disaster—something no one wants to happen. Yet, with two international natural disasters (in Myanmar and China) occurring within a week, and tornadoes inflicting destruction on a smaller but still devastating scale in the US, it seems likely that the nation will eventually have extensive need of emergency responders again. In that case, it seems appropriate to fall back on the traditional Boy Scout maxim, Be prepared.
“If we can raise awareness of how to respond to disasters on the clinician level, I think it makes us a stronger country,” Bollinger says. “If we’re better prepared, we’re better able to respond, and I think a lot of these other issues will kind of go by the wayside. Hopefully.”
Almost three years after Hurricane Katrina, as natural disasters occur around the world with seemingly greater frequency, is the United States better prepared to respond to a disaster in our own backyard? And what improvements are still needed if health care providers, including NPs and PAs, are going to be utilized to the full extent of their capabilities?
Paul Bollinger, MPH, Emergency Medical Services Senior Advisor for the Portland, Oregon–based Medical Teams International (MTI), quotes MTI’s director of disaster response as saying, “It’s easier to send a doctor to Liberia than it was to Louisiana.” Bollinger adds, “That’s a huge issue, portability, in times of disaster—and yes, governors can change those laws, but I think by the time the bureaucracy wheels turn, it’s too late.”
Uniform Emergency Volunteer Health Practitioners Act
Greasing those bureaucratic wheels is the aim of the Uniform Emergency Volunteer Health Practitioners Act (UEVHPA), a piece of model legislation drafted by the Uniform Law Commission (ULC). According to Eric Fish, Legislative Counsel for the ULC, the goal of the UEVHPA is “to facilitate a better response to large-scale disasters by getting rid of some of the red tape and paperwork and things that could slow down responders.”
The ULC decided to address this issue as a direct result of what happened during and after Hurricanes Katrina and Rita struck the US Gulf Coast, laying bare the many levels on which bureaucracy and disorganization stymied relief efforts. “A few of the commissioners had family members involved with the medical response [to Katrina],” Fish says, “and it was brought up that way. And then, working with groups such as the Red Cross, it became apparent that some quick action in this field of law would be beneficial.”
Usually, it takes three to four years for the ULC to produce model legislation, from the time an area of interest (such as emergency response) is proposed to the point at which the commissioners approve the final version. In the case of the UEVHPA, most of the act was approved the year after the Katrina disaster, with additional sections addressing liability and workers’ compensation approved last year.
Colorado, Kentucky, and Tennessee were the first states to enact the UEVHPA in 2006 and 2007. In 2008, the act has been introduced in 12 states; so far, Indiana and New Mexico have enacted it. (See map.)
So how does the UEVHPA address some of the problems experienced in the aftermath of Katrina? Two key points are outlined in the prefatory note to the act (available as a PDF at www.uevhpa.org):
• “To protect the public health and safety, the act requires that, prior to deployment, volunteers must be registered with public or private systems capable of determining that they have been properly licensed and are in good standing with their principal jurisdiction of practice” and
• “To alleviate confusion and uncertainty regarding the types of services that may be provided by volunteer health practitioners, the act requires volunteers to limit their practice to activities for which they are licensed, properly trained, and qualified to perform. Further, volunteer health practitioners must conform to scope-of-practice authorizations and restrictions imposed by the laws of host states, disaster response agencies and organizations, and host entities.”
“It doesn’t supersede any existing state law,” Fish explains. “What this does is just set up a registry that a state can call upon in times of disaster.” He employs a baseball analogy for clarification: “It’s like having people in your bullpen. You know who’s in the bullpen, you know what they can do, you’ll bring them up for whatever situation.”
But is it enough?
Beyond the UEVHPA
No single piece of model legislation will iron out every wrinkle the nation faces in disaster response. PAs and NPs have particular issues when it comes to practicing outside the state in which they are licensed—supervision by and collaboration with physicians, respectively.
Long before Katrina, the American Academy of Physician Assistants (AAPA) drafted model language saying that “any PA who is licensed in the state or licensed in another state or authorized to practice by a federal employer as a physician assistant should be able to provide whatever care they are able to in a disaster or emergency situation, with whatever supervision is available,” summarizes Ann Davis, PA-C, AAPA Director of State Government Affairs. Five states (soon to be six) have adopted AAPA’s model language; overall, 38 states have some sort of provision for recognizing PAs in disasters or emergencies.
AAPA doesn’t have an official position on the UEVHPA, but Davis says, “In my opinion, the bill is fine as drafted, because it defines ‘health care practitioner’ as anybody who is licensed to provide health care services in a state. It’s broad enough that I don’t think anybody would question if PAs were meant to be included.”
While the UEVHPA does not specifically address PAs’ supervision requirements, it has provided opportunities for PAs in individual states to resolve those issues separately. When Indiana was considering passage of the UEVHPA, Davis says, “we flagged the issue and said, ‘You know, this might be a good time—while the legislators are thinking about disaster response—to talk to somebody about putting the PA language someplace.’”
That place didn’t have to be within the UEVHPA: “If you’re looking for a uniform law, you don’t necessarily stick your own provisions on it—that seems a little invasive,” Davis observes. Instead, the PA disaster response language was introduced through an omnibus bill that was in the works.
Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for the American Academy of Nurse Practitioners, is a bit less sanguine about the UEVHPA. “They still haven’t fixed the issue,” she notes, which for NPs is “shedding the shackles of law that requires physician collaboration or delegation within some of the states that have obsolete laws.”
Section 8 of the UEVHPA, “Provision of Volunteer Health or Veterinary Services,” contains the following statements:
• “… a volunteer health practitioner shall adhere to the scope of practice for a similarly licensed practitioner established by the licensing provisions, practice acts, or other laws of this state” and
• “Except as otherwise provided in subsection (c) [which allows states the right to modify or restrict services provided by a volunteer], this [act] does not authorize the volunteer health practitioner to provide services that are outside the practitioner’s scope of practice, even if a similarly licensed practitioner in this state would be permitted to provide the services.”
What concerns Towers is that “we’re still going to the lowest common denominator. Bottom line is, NPs are prepared [educationally] the same way across the board, and being tied to a physician in some states, while in other states they are not, is really limiting.”
Towers says it would have been “very helpful” if the UEVHPA had included language that expressly gave states the right to lift supervision or collaboration requirements. “There are some states that have actually passed regulations and statutes that speak to this by saying, ‘If there is a disaster, then the need to be tied to a physician is lifted, for the period of time of the disaster,’” she points out.
But, as with the PAs’ supervision requirements, “that’s happening state by state, and it’s something we’re going to have to work on,” according to Towers.
Wanted: Team Players
One thing that everyone seems to agree on is that preregistration, precredentialing, and involvement in emergency or disaster response teams should be encouraged. To this end, the UEVHPA requires that volunteer health care providers be registered with a system that can confirm their licenses and credentials before they are deployed in response to a disaster.
“The use of registration systems is intended to (1) discourage the uncoordinated use of ‘spontaneous volunteers’ who may independently travel to the scene of a disaster without the support of public or private emergency response agencies,” the preface to the draft legislation reads, “and (2) promote the recruitment and training of volunteers in advance of emergency declarations, while also allowing and facilitating additional registrations at the time of an emergency.”
The increased emphasis on teams, from the community level on up, has been one of the biggest lessons acted on since Katrina. “The amount of planning that’s gone on post-Katrina is incredible,” MTI’s Bollinger says. “A lot of states are looking at creating medical volunteer corps, looking at PAs, NPs, physicians, and paramedical personnel, and gathering them into a database that they can tap into. You know, ‘OK, we need four PAs to go to this clinic, or this displaced persons site, and provide care.’ Boom, that’s in the database; we can launch those folks.”
So-called spontaneous volunteers, though well intentioned, “can put burdens on a fragile infrastructure,” observes Bollinger. “In some ways, you’re relocating the disaster.”
That’s why PAs and NPs are encouraged to join a medical response team—whether a Red Cross unit, a Disaster Medical Assistance Team, or a private agency like MTI. “The best help is not the person who grabs their medical bag and goes down alone,” Davis says. “It’s folks who are part of an organized system that are the most helpful. They show up with their own water and tools and people that they know how to work with.”
Organized units will often handle credentialing and registration, but clinicians can also register on their own so that their licensing information can be verified in advance, allowing them to be mobilized quickly in the event of an emergency. “Having to do any kind of registration once a disaster happens, of course, slows down the process,” Towers observes.
Keeping documentation up to date—including passports if you’ll be responding overseas—is important. And while Davis strongly advocates for advance registration and credential verification “so you don’t show up someplace with a handful of papers,” she also suggests that “there should be a place where you keep all of your core licensing documents, CPR certification, graduation records from school, those things, so that if you’re in a spot where you need to leave quickly, you can.”
National Issue
There is a touch of irony to the fact that the obstacles to international disaster response often relate to travel and access to remote sites, while within the US the obstacles have more to do with regulatory issues. “That’s the big hiccup, I think, of responding within the US,” says Bollinger, whose vast experience includes working on the MTI team that went to Indonesia in response to the tsunami in 2006. “We have all these laws in place: You must have medical direction, you must have signatures on this, this, and this. And that, I think, is going to become the albatross around our neck in domestic response, particularly for medical personnel.”
The difference? “National scope of practice,” Bollinger says. “The Ministry of Health in most of the countries we respond to, they’re the ones that call the shots.” Within the US, he adds, “We’re looking at significant health system change to make that a reality.”
It’s a reality (however unlikely) that not everyone would want anyway. After observing that most of the countries Bollinger refers to “are about the size of each of our states,” Towers notes that NPs “already have a national scope of practice. The states have set limits on that.” (This may or may not reinforce Bollinger’s point about bureaucracy.) Furthermore, Towers says, “I don’t think that we’re going to be able to create national practice acts. I don’t know that we even want to, for other reasons.”
When asked about national scope of practice, Davis responds, “My joke about that is, ‘I’m a young woman with good health habits, but I’m not going to live that long.’” She provides a brief history lesson for context, citing a 19th-century court case in which “we decided, at the Supreme Court level, that states would regulate health professionals as part of their duty to protect their citizens. People could make a very good case for this being something that the federal government should do, but that’s a big debate.”
On whatever level changes are made, the true test of how well the US has learned the lessons imparted by Hurricane Katrina will come only in the wake of another large-scale disaster—something no one wants to happen. Yet, with two international natural disasters (in Myanmar and China) occurring within a week, and tornadoes inflicting destruction on a smaller but still devastating scale in the US, it seems likely that the nation will eventually have extensive need of emergency responders again. In that case, it seems appropriate to fall back on the traditional Boy Scout maxim, Be prepared.
“If we can raise awareness of how to respond to disasters on the clinician level, I think it makes us a stronger country,” Bollinger says. “If we’re better prepared, we’re better able to respond, and I think a lot of these other issues will kind of go by the wayside. Hopefully.”
Almost three years after Hurricane Katrina, as natural disasters occur around the world with seemingly greater frequency, is the United States better prepared to respond to a disaster in our own backyard? And what improvements are still needed if health care providers, including NPs and PAs, are going to be utilized to the full extent of their capabilities?
Paul Bollinger, MPH, Emergency Medical Services Senior Advisor for the Portland, Oregon–based Medical Teams International (MTI), quotes MTI’s director of disaster response as saying, “It’s easier to send a doctor to Liberia than it was to Louisiana.” Bollinger adds, “That’s a huge issue, portability, in times of disaster—and yes, governors can change those laws, but I think by the time the bureaucracy wheels turn, it’s too late.”
Uniform Emergency Volunteer Health Practitioners Act
Greasing those bureaucratic wheels is the aim of the Uniform Emergency Volunteer Health Practitioners Act (UEVHPA), a piece of model legislation drafted by the Uniform Law Commission (ULC). According to Eric Fish, Legislative Counsel for the ULC, the goal of the UEVHPA is “to facilitate a better response to large-scale disasters by getting rid of some of the red tape and paperwork and things that could slow down responders.”
The ULC decided to address this issue as a direct result of what happened during and after Hurricanes Katrina and Rita struck the US Gulf Coast, laying bare the many levels on which bureaucracy and disorganization stymied relief efforts. “A few of the commissioners had family members involved with the medical response [to Katrina],” Fish says, “and it was brought up that way. And then, working with groups such as the Red Cross, it became apparent that some quick action in this field of law would be beneficial.”
Usually, it takes three to four years for the ULC to produce model legislation, from the time an area of interest (such as emergency response) is proposed to the point at which the commissioners approve the final version. In the case of the UEVHPA, most of the act was approved the year after the Katrina disaster, with additional sections addressing liability and workers’ compensation approved last year.
Colorado, Kentucky, and Tennessee were the first states to enact the UEVHPA in 2006 and 2007. In 2008, the act has been introduced in 12 states; so far, Indiana and New Mexico have enacted it. (See map.)
So how does the UEVHPA address some of the problems experienced in the aftermath of Katrina? Two key points are outlined in the prefatory note to the act (available as a PDF at www.uevhpa.org):
• “To protect the public health and safety, the act requires that, prior to deployment, volunteers must be registered with public or private systems capable of determining that they have been properly licensed and are in good standing with their principal jurisdiction of practice” and
• “To alleviate confusion and uncertainty regarding the types of services that may be provided by volunteer health practitioners, the act requires volunteers to limit their practice to activities for which they are licensed, properly trained, and qualified to perform. Further, volunteer health practitioners must conform to scope-of-practice authorizations and restrictions imposed by the laws of host states, disaster response agencies and organizations, and host entities.”
“It doesn’t supersede any existing state law,” Fish explains. “What this does is just set up a registry that a state can call upon in times of disaster.” He employs a baseball analogy for clarification: “It’s like having people in your bullpen. You know who’s in the bullpen, you know what they can do, you’ll bring them up for whatever situation.”
But is it enough?
Beyond the UEVHPA
No single piece of model legislation will iron out every wrinkle the nation faces in disaster response. PAs and NPs have particular issues when it comes to practicing outside the state in which they are licensed—supervision by and collaboration with physicians, respectively.
Long before Katrina, the American Academy of Physician Assistants (AAPA) drafted model language saying that “any PA who is licensed in the state or licensed in another state or authorized to practice by a federal employer as a physician assistant should be able to provide whatever care they are able to in a disaster or emergency situation, with whatever supervision is available,” summarizes Ann Davis, PA-C, AAPA Director of State Government Affairs. Five states (soon to be six) have adopted AAPA’s model language; overall, 38 states have some sort of provision for recognizing PAs in disasters or emergencies.
AAPA doesn’t have an official position on the UEVHPA, but Davis says, “In my opinion, the bill is fine as drafted, because it defines ‘health care practitioner’ as anybody who is licensed to provide health care services in a state. It’s broad enough that I don’t think anybody would question if PAs were meant to be included.”
While the UEVHPA does not specifically address PAs’ supervision requirements, it has provided opportunities for PAs in individual states to resolve those issues separately. When Indiana was considering passage of the UEVHPA, Davis says, “we flagged the issue and said, ‘You know, this might be a good time—while the legislators are thinking about disaster response—to talk to somebody about putting the PA language someplace.’”
That place didn’t have to be within the UEVHPA: “If you’re looking for a uniform law, you don’t necessarily stick your own provisions on it—that seems a little invasive,” Davis observes. Instead, the PA disaster response language was introduced through an omnibus bill that was in the works.
Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for the American Academy of Nurse Practitioners, is a bit less sanguine about the UEVHPA. “They still haven’t fixed the issue,” she notes, which for NPs is “shedding the shackles of law that requires physician collaboration or delegation within some of the states that have obsolete laws.”
Section 8 of the UEVHPA, “Provision of Volunteer Health or Veterinary Services,” contains the following statements:
• “… a volunteer health practitioner shall adhere to the scope of practice for a similarly licensed practitioner established by the licensing provisions, practice acts, or other laws of this state” and
• “Except as otherwise provided in subsection (c) [which allows states the right to modify or restrict services provided by a volunteer], this [act] does not authorize the volunteer health practitioner to provide services that are outside the practitioner’s scope of practice, even if a similarly licensed practitioner in this state would be permitted to provide the services.”
What concerns Towers is that “we’re still going to the lowest common denominator. Bottom line is, NPs are prepared [educationally] the same way across the board, and being tied to a physician in some states, while in other states they are not, is really limiting.”
Towers says it would have been “very helpful” if the UEVHPA had included language that expressly gave states the right to lift supervision or collaboration requirements. “There are some states that have actually passed regulations and statutes that speak to this by saying, ‘If there is a disaster, then the need to be tied to a physician is lifted, for the period of time of the disaster,’” she points out.
But, as with the PAs’ supervision requirements, “that’s happening state by state, and it’s something we’re going to have to work on,” according to Towers.
Wanted: Team Players
One thing that everyone seems to agree on is that preregistration, precredentialing, and involvement in emergency or disaster response teams should be encouraged. To this end, the UEVHPA requires that volunteer health care providers be registered with a system that can confirm their licenses and credentials before they are deployed in response to a disaster.
“The use of registration systems is intended to (1) discourage the uncoordinated use of ‘spontaneous volunteers’ who may independently travel to the scene of a disaster without the support of public or private emergency response agencies,” the preface to the draft legislation reads, “and (2) promote the recruitment and training of volunteers in advance of emergency declarations, while also allowing and facilitating additional registrations at the time of an emergency.”
The increased emphasis on teams, from the community level on up, has been one of the biggest lessons acted on since Katrina. “The amount of planning that’s gone on post-Katrina is incredible,” MTI’s Bollinger says. “A lot of states are looking at creating medical volunteer corps, looking at PAs, NPs, physicians, and paramedical personnel, and gathering them into a database that they can tap into. You know, ‘OK, we need four PAs to go to this clinic, or this displaced persons site, and provide care.’ Boom, that’s in the database; we can launch those folks.”
So-called spontaneous volunteers, though well intentioned, “can put burdens on a fragile infrastructure,” observes Bollinger. “In some ways, you’re relocating the disaster.”
That’s why PAs and NPs are encouraged to join a medical response team—whether a Red Cross unit, a Disaster Medical Assistance Team, or a private agency like MTI. “The best help is not the person who grabs their medical bag and goes down alone,” Davis says. “It’s folks who are part of an organized system that are the most helpful. They show up with their own water and tools and people that they know how to work with.”
Organized units will often handle credentialing and registration, but clinicians can also register on their own so that their licensing information can be verified in advance, allowing them to be mobilized quickly in the event of an emergency. “Having to do any kind of registration once a disaster happens, of course, slows down the process,” Towers observes.
Keeping documentation up to date—including passports if you’ll be responding overseas—is important. And while Davis strongly advocates for advance registration and credential verification “so you don’t show up someplace with a handful of papers,” she also suggests that “there should be a place where you keep all of your core licensing documents, CPR certification, graduation records from school, those things, so that if you’re in a spot where you need to leave quickly, you can.”
National Issue
There is a touch of irony to the fact that the obstacles to international disaster response often relate to travel and access to remote sites, while within the US the obstacles have more to do with regulatory issues. “That’s the big hiccup, I think, of responding within the US,” says Bollinger, whose vast experience includes working on the MTI team that went to Indonesia in response to the tsunami in 2006. “We have all these laws in place: You must have medical direction, you must have signatures on this, this, and this. And that, I think, is going to become the albatross around our neck in domestic response, particularly for medical personnel.”
The difference? “National scope of practice,” Bollinger says. “The Ministry of Health in most of the countries we respond to, they’re the ones that call the shots.” Within the US, he adds, “We’re looking at significant health system change to make that a reality.”
It’s a reality (however unlikely) that not everyone would want anyway. After observing that most of the countries Bollinger refers to “are about the size of each of our states,” Towers notes that NPs “already have a national scope of practice. The states have set limits on that.” (This may or may not reinforce Bollinger’s point about bureaucracy.) Furthermore, Towers says, “I don’t think that we’re going to be able to create national practice acts. I don’t know that we even want to, for other reasons.”
When asked about national scope of practice, Davis responds, “My joke about that is, ‘I’m a young woman with good health habits, but I’m not going to live that long.’” She provides a brief history lesson for context, citing a 19th-century court case in which “we decided, at the Supreme Court level, that states would regulate health professionals as part of their duty to protect their citizens. People could make a very good case for this being something that the federal government should do, but that’s a big debate.”
On whatever level changes are made, the true test of how well the US has learned the lessons imparted by Hurricane Katrina will come only in the wake of another large-scale disaster—something no one wants to happen. Yet, with two international natural disasters (in Myanmar and China) occurring within a week, and tornadoes inflicting destruction on a smaller but still devastating scale in the US, it seems likely that the nation will eventually have extensive need of emergency responders again. In that case, it seems appropriate to fall back on the traditional Boy Scout maxim, Be prepared.
“If we can raise awareness of how to respond to disasters on the clinician level, I think it makes us a stronger country,” Bollinger says. “If we’re better prepared, we’re better able to respond, and I think a lot of these other issues will kind of go by the wayside. Hopefully.”
The Lyme Wars: Debate Rages About Treatment
Who knew a little tick could cause so much trouble? When Lyme disease was first described in 1977, did anyone suspect that three decades later, a battle would be raging between two professional organizations about how to treat it? Today, the “war” between the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) leaves clinicians wondering whose guidelines they should follow.
Is it a case of David versus Goliath—the “upstart” ILADS challenging the established IDSA—or evidence-based medicine versus questionable practice? The more you listen to the parties involved, the more difficult it can be to determine the answer.
Chronic Problem
The crux of the Lyme disease treatment debate is whether the condition exists in a chronic form. ILADS practitioners insist that it does; how else to explain the lingering symptoms many patients experience, which they say resolve only with long-term, high-dose antibiotic therapy? IDSA, however, takes the viewpoint that these patients—whose symptoms of fatigue, cognitive dysfunction, and musculoskeletal pain are subjective and vague (belonging on the symptom list for chronic fatigue syndrome and fibromyalgia as well)—never had Lyme disease in the first place, and this is why standard therapy for the condition appears not to work for them.
“It’s true that those kinds of symptoms can occur in Lyme disease,” says Gary P. Wormser, MD, Chief of the Division of Infectious Diseases at New York Medical College in Valhalla, and lead author of IDSA’s guidelines. “But where the disconnect occurs is when people want to ascribe everybody with those symptoms as having Lyme disease, when they have no bona fide evidence [ie, validated laboratory results] of the disease.”
ILADS clinicians counter that the IDSA underestimates Borrelia burgdorferi (Bb), the spirochete that causes Lyme disease. “What we’re dealing with is way more sophisticated bacteria than any other bacteria we know,” says Ginger R. Savely, RN, FNP-C, a Lyme disease specialist at Union Square Medical Associates in San Francisco. “The more you really study the bacteria and how it works, the more you become incredibly impressed by how many mechanisms this bacteria has for survival and how difficult it is to get rid of it.”
Furthermore, Lyme disease specialists contend that the currently available diagnostic tools, the ELISA and the Western blot test, do not have sufficient sensitivity to reliably detect the presence of Bb (see Savely GR. Update on Lyme disease. Clinician Reviews. 2006;16[4]:44-51). This, they say, is why it can be difficult to validate the diagnosis.
Bottom line: If you can’t agree on what you’re treating, you certainly won’t agree on how to treat it.
Prolonged Antibiotic Therapy
IDSA’s guidelines on the treatment of Lyme disease recommend, in general, 14-day courses of oral antibiotics, with the option of a longer course (28 days) or retreatment where deemed appropriate. “We don’t treat bacterial infections with prolonged antibiotics,” Wormser points out, citing as examples cystitis, strep throat, and sinusitis. “So when you see 14 days recommended, that’s a long course relative to many bacterial infections.”
At issue in the Lyme “war” is the fact that ILADS, in the words of President Daniel Cameron, MD, MPH, “likes to offer options to patients who find themselves still sick after 30 days of treatment”—specifically, long-term (sometimes indefinite) high-dose antibiotic therapy.
Wormser is quick to point out that “our guidelines don’t really discuss how any individual patient is to be treated. They just tell you a general approach that we think is scientifically based and makes sense, based on all other infectious diseases.” In the IDSA’s estimation, the research does not support the efficacy of long-term antibiotic therapy for Lyme disease—and in the absence of that support, the risks involved are just too great.
Those risks include the growing problem of antibiotic-resistant bacteria, the possibility of coinfection with an organism such as Clostridium difficile, and the potential for sepsis and other complications associated with prolonged IV therapy. “Would you really dialyze somebody who didn’t need dialysis?” Wormser asks. “That’s an extreme example. But we say to ourselves every time we use them, ‘Do we really need antibiotics here, and what’s the shortest period of time we can give them, not the longest?’”
“The IDSA loves to say that what we’re doing is harmful or dangerous,” says Savely, who has treated more than 1,000 patients according to the ILADS recommendations. “The data have not shown that to be true. We have not had problems or complications—certainly not mortality—from the kind of treatment that we do.”
Furthermore, ILADS clinicians say they restore hope to patients whom “mainstream” medicine has failed. “People were coming to me with just terrible, terrible conditions, where they had been to so many specialists and every one had told them, ‘There’s no hope. We can’t do anything for you,’” Savely says. “And then I’d start treating them with high-dose long-term antibiotics, and they would get their lives back.”
Wormser understands that many patients feel let down by practitioners who can’t provide definitive answers about their condition. “And I know people will turn to whoever says they think they can help—I can’t blame them for that,” he says. Nonetheless, “it is remarkable the difference that patients with real Lyme have, in terms of their experience with antibiotics, compared to people who probably don’t have Lyme but feel they do.”
Risky Business?
So, how should clinicians handle patient inquiries about Lyme disease treatment? ILADS President Cameron believes that all options should be presented. “The patient should be involved in the decision, rather than just offered only one answer,” he says, although he respects every clinician’s right to say, “There are other options, but I choose this one.”
Clinician Reviews Editorial Board member Julia Pallentino, MSN, JD, ARNP, sees patients in her gastroenterology practice in Tallahassee, Florida, who are being treated by other clinicians with long-term antibiotic therapy for Lyme disease. “I respect their right to seek care from where they wish to seek it, and if they feel it has been helpful, I support that,” she says. Even so, if she were the one treating them for Lyme disease, “I certainly would not take on a different way of treatment because they want it. I would say, ‘I understand that you think this will help you, and I certainly respect your opinion. However, that’s not the method I use. If you want to use a different method, then I would recommend you find a practitioner who does that.’”
Of course, in this day and age, the specter of malpractice hangs over everyone. “As an attorney, I can tell you I’d much rather my client had been using IDSA guidelines than ILADS,” Pallentino says. “If you treat a patient according to CDC guidelines [which are the IDSA guidelines, in this case], then it would be very difficult to say that you weren’t doing what was accepted, appropriate treatment.”
Savely understands all too well how risky treating Lyme disease can be. In 2004, she was voted Texas NP of the Year. Two years later, she says, her supervising physician was more or less intimidated by the medical board into terminating their collaborative agreement. Finding another supervising physician proved so difficult that she accepted an offer from an ILADS doctor to work with him, requiring her to relocate her practice to San Francisco. The changes impacted every area of her life—and yet, she persists in caring for Lyme disease patients according to the ILADS guidelines.
Why? “Somebody’s got to take care of these people,” she says. “Every time I have a patient saying ‘I cannot even tell you how grateful I am to you for listening to me when no one else would, and for treating me when nobody else would, and for letting me live again,’ I just go, ‘Gosh, I have to do this. I have to.’”
Whether other clinicians will feel they have to treat Lyme disease using one of the competing regimens is for them alone to decide.
Who knew a little tick could cause so much trouble? When Lyme disease was first described in 1977, did anyone suspect that three decades later, a battle would be raging between two professional organizations about how to treat it? Today, the “war” between the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) leaves clinicians wondering whose guidelines they should follow.
Is it a case of David versus Goliath—the “upstart” ILADS challenging the established IDSA—or evidence-based medicine versus questionable practice? The more you listen to the parties involved, the more difficult it can be to determine the answer.
Chronic Problem
The crux of the Lyme disease treatment debate is whether the condition exists in a chronic form. ILADS practitioners insist that it does; how else to explain the lingering symptoms many patients experience, which they say resolve only with long-term, high-dose antibiotic therapy? IDSA, however, takes the viewpoint that these patients—whose symptoms of fatigue, cognitive dysfunction, and musculoskeletal pain are subjective and vague (belonging on the symptom list for chronic fatigue syndrome and fibromyalgia as well)—never had Lyme disease in the first place, and this is why standard therapy for the condition appears not to work for them.
“It’s true that those kinds of symptoms can occur in Lyme disease,” says Gary P. Wormser, MD, Chief of the Division of Infectious Diseases at New York Medical College in Valhalla, and lead author of IDSA’s guidelines. “But where the disconnect occurs is when people want to ascribe everybody with those symptoms as having Lyme disease, when they have no bona fide evidence [ie, validated laboratory results] of the disease.”
ILADS clinicians counter that the IDSA underestimates Borrelia burgdorferi (Bb), the spirochete that causes Lyme disease. “What we’re dealing with is way more sophisticated bacteria than any other bacteria we know,” says Ginger R. Savely, RN, FNP-C, a Lyme disease specialist at Union Square Medical Associates in San Francisco. “The more you really study the bacteria and how it works, the more you become incredibly impressed by how many mechanisms this bacteria has for survival and how difficult it is to get rid of it.”
Furthermore, Lyme disease specialists contend that the currently available diagnostic tools, the ELISA and the Western blot test, do not have sufficient sensitivity to reliably detect the presence of Bb (see Savely GR. Update on Lyme disease. Clinician Reviews. 2006;16[4]:44-51). This, they say, is why it can be difficult to validate the diagnosis.
Bottom line: If you can’t agree on what you’re treating, you certainly won’t agree on how to treat it.
Prolonged Antibiotic Therapy
IDSA’s guidelines on the treatment of Lyme disease recommend, in general, 14-day courses of oral antibiotics, with the option of a longer course (28 days) or retreatment where deemed appropriate. “We don’t treat bacterial infections with prolonged antibiotics,” Wormser points out, citing as examples cystitis, strep throat, and sinusitis. “So when you see 14 days recommended, that’s a long course relative to many bacterial infections.”
At issue in the Lyme “war” is the fact that ILADS, in the words of President Daniel Cameron, MD, MPH, “likes to offer options to patients who find themselves still sick after 30 days of treatment”—specifically, long-term (sometimes indefinite) high-dose antibiotic therapy.
Wormser is quick to point out that “our guidelines don’t really discuss how any individual patient is to be treated. They just tell you a general approach that we think is scientifically based and makes sense, based on all other infectious diseases.” In the IDSA’s estimation, the research does not support the efficacy of long-term antibiotic therapy for Lyme disease—and in the absence of that support, the risks involved are just too great.
Those risks include the growing problem of antibiotic-resistant bacteria, the possibility of coinfection with an organism such as Clostridium difficile, and the potential for sepsis and other complications associated with prolonged IV therapy. “Would you really dialyze somebody who didn’t need dialysis?” Wormser asks. “That’s an extreme example. But we say to ourselves every time we use them, ‘Do we really need antibiotics here, and what’s the shortest period of time we can give them, not the longest?’”
“The IDSA loves to say that what we’re doing is harmful or dangerous,” says Savely, who has treated more than 1,000 patients according to the ILADS recommendations. “The data have not shown that to be true. We have not had problems or complications—certainly not mortality—from the kind of treatment that we do.”
Furthermore, ILADS clinicians say they restore hope to patients whom “mainstream” medicine has failed. “People were coming to me with just terrible, terrible conditions, where they had been to so many specialists and every one had told them, ‘There’s no hope. We can’t do anything for you,’” Savely says. “And then I’d start treating them with high-dose long-term antibiotics, and they would get their lives back.”
Wormser understands that many patients feel let down by practitioners who can’t provide definitive answers about their condition. “And I know people will turn to whoever says they think they can help—I can’t blame them for that,” he says. Nonetheless, “it is remarkable the difference that patients with real Lyme have, in terms of their experience with antibiotics, compared to people who probably don’t have Lyme but feel they do.”
Risky Business?
So, how should clinicians handle patient inquiries about Lyme disease treatment? ILADS President Cameron believes that all options should be presented. “The patient should be involved in the decision, rather than just offered only one answer,” he says, although he respects every clinician’s right to say, “There are other options, but I choose this one.”
Clinician Reviews Editorial Board member Julia Pallentino, MSN, JD, ARNP, sees patients in her gastroenterology practice in Tallahassee, Florida, who are being treated by other clinicians with long-term antibiotic therapy for Lyme disease. “I respect their right to seek care from where they wish to seek it, and if they feel it has been helpful, I support that,” she says. Even so, if she were the one treating them for Lyme disease, “I certainly would not take on a different way of treatment because they want it. I would say, ‘I understand that you think this will help you, and I certainly respect your opinion. However, that’s not the method I use. If you want to use a different method, then I would recommend you find a practitioner who does that.’”
Of course, in this day and age, the specter of malpractice hangs over everyone. “As an attorney, I can tell you I’d much rather my client had been using IDSA guidelines than ILADS,” Pallentino says. “If you treat a patient according to CDC guidelines [which are the IDSA guidelines, in this case], then it would be very difficult to say that you weren’t doing what was accepted, appropriate treatment.”
Savely understands all too well how risky treating Lyme disease can be. In 2004, she was voted Texas NP of the Year. Two years later, she says, her supervising physician was more or less intimidated by the medical board into terminating their collaborative agreement. Finding another supervising physician proved so difficult that she accepted an offer from an ILADS doctor to work with him, requiring her to relocate her practice to San Francisco. The changes impacted every area of her life—and yet, she persists in caring for Lyme disease patients according to the ILADS guidelines.
Why? “Somebody’s got to take care of these people,” she says. “Every time I have a patient saying ‘I cannot even tell you how grateful I am to you for listening to me when no one else would, and for treating me when nobody else would, and for letting me live again,’ I just go, ‘Gosh, I have to do this. I have to.’”
Whether other clinicians will feel they have to treat Lyme disease using one of the competing regimens is for them alone to decide.
Who knew a little tick could cause so much trouble? When Lyme disease was first described in 1977, did anyone suspect that three decades later, a battle would be raging between two professional organizations about how to treat it? Today, the “war” between the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) leaves clinicians wondering whose guidelines they should follow.
Is it a case of David versus Goliath—the “upstart” ILADS challenging the established IDSA—or evidence-based medicine versus questionable practice? The more you listen to the parties involved, the more difficult it can be to determine the answer.
Chronic Problem
The crux of the Lyme disease treatment debate is whether the condition exists in a chronic form. ILADS practitioners insist that it does; how else to explain the lingering symptoms many patients experience, which they say resolve only with long-term, high-dose antibiotic therapy? IDSA, however, takes the viewpoint that these patients—whose symptoms of fatigue, cognitive dysfunction, and musculoskeletal pain are subjective and vague (belonging on the symptom list for chronic fatigue syndrome and fibromyalgia as well)—never had Lyme disease in the first place, and this is why standard therapy for the condition appears not to work for them.
“It’s true that those kinds of symptoms can occur in Lyme disease,” says Gary P. Wormser, MD, Chief of the Division of Infectious Diseases at New York Medical College in Valhalla, and lead author of IDSA’s guidelines. “But where the disconnect occurs is when people want to ascribe everybody with those symptoms as having Lyme disease, when they have no bona fide evidence [ie, validated laboratory results] of the disease.”
ILADS clinicians counter that the IDSA underestimates Borrelia burgdorferi (Bb), the spirochete that causes Lyme disease. “What we’re dealing with is way more sophisticated bacteria than any other bacteria we know,” says Ginger R. Savely, RN, FNP-C, a Lyme disease specialist at Union Square Medical Associates in San Francisco. “The more you really study the bacteria and how it works, the more you become incredibly impressed by how many mechanisms this bacteria has for survival and how difficult it is to get rid of it.”
Furthermore, Lyme disease specialists contend that the currently available diagnostic tools, the ELISA and the Western blot test, do not have sufficient sensitivity to reliably detect the presence of Bb (see Savely GR. Update on Lyme disease. Clinician Reviews. 2006;16[4]:44-51). This, they say, is why it can be difficult to validate the diagnosis.
Bottom line: If you can’t agree on what you’re treating, you certainly won’t agree on how to treat it.
Prolonged Antibiotic Therapy
IDSA’s guidelines on the treatment of Lyme disease recommend, in general, 14-day courses of oral antibiotics, with the option of a longer course (28 days) or retreatment where deemed appropriate. “We don’t treat bacterial infections with prolonged antibiotics,” Wormser points out, citing as examples cystitis, strep throat, and sinusitis. “So when you see 14 days recommended, that’s a long course relative to many bacterial infections.”
At issue in the Lyme “war” is the fact that ILADS, in the words of President Daniel Cameron, MD, MPH, “likes to offer options to patients who find themselves still sick after 30 days of treatment”—specifically, long-term (sometimes indefinite) high-dose antibiotic therapy.
Wormser is quick to point out that “our guidelines don’t really discuss how any individual patient is to be treated. They just tell you a general approach that we think is scientifically based and makes sense, based on all other infectious diseases.” In the IDSA’s estimation, the research does not support the efficacy of long-term antibiotic therapy for Lyme disease—and in the absence of that support, the risks involved are just too great.
Those risks include the growing problem of antibiotic-resistant bacteria, the possibility of coinfection with an organism such as Clostridium difficile, and the potential for sepsis and other complications associated with prolonged IV therapy. “Would you really dialyze somebody who didn’t need dialysis?” Wormser asks. “That’s an extreme example. But we say to ourselves every time we use them, ‘Do we really need antibiotics here, and what’s the shortest period of time we can give them, not the longest?’”
“The IDSA loves to say that what we’re doing is harmful or dangerous,” says Savely, who has treated more than 1,000 patients according to the ILADS recommendations. “The data have not shown that to be true. We have not had problems or complications—certainly not mortality—from the kind of treatment that we do.”
Furthermore, ILADS clinicians say they restore hope to patients whom “mainstream” medicine has failed. “People were coming to me with just terrible, terrible conditions, where they had been to so many specialists and every one had told them, ‘There’s no hope. We can’t do anything for you,’” Savely says. “And then I’d start treating them with high-dose long-term antibiotics, and they would get their lives back.”
Wormser understands that many patients feel let down by practitioners who can’t provide definitive answers about their condition. “And I know people will turn to whoever says they think they can help—I can’t blame them for that,” he says. Nonetheless, “it is remarkable the difference that patients with real Lyme have, in terms of their experience with antibiotics, compared to people who probably don’t have Lyme but feel they do.”
Risky Business?
So, how should clinicians handle patient inquiries about Lyme disease treatment? ILADS President Cameron believes that all options should be presented. “The patient should be involved in the decision, rather than just offered only one answer,” he says, although he respects every clinician’s right to say, “There are other options, but I choose this one.”
Clinician Reviews Editorial Board member Julia Pallentino, MSN, JD, ARNP, sees patients in her gastroenterology practice in Tallahassee, Florida, who are being treated by other clinicians with long-term antibiotic therapy for Lyme disease. “I respect their right to seek care from where they wish to seek it, and if they feel it has been helpful, I support that,” she says. Even so, if she were the one treating them for Lyme disease, “I certainly would not take on a different way of treatment because they want it. I would say, ‘I understand that you think this will help you, and I certainly respect your opinion. However, that’s not the method I use. If you want to use a different method, then I would recommend you find a practitioner who does that.’”
Of course, in this day and age, the specter of malpractice hangs over everyone. “As an attorney, I can tell you I’d much rather my client had been using IDSA guidelines than ILADS,” Pallentino says. “If you treat a patient according to CDC guidelines [which are the IDSA guidelines, in this case], then it would be very difficult to say that you weren’t doing what was accepted, appropriate treatment.”
Savely understands all too well how risky treating Lyme disease can be. In 2004, she was voted Texas NP of the Year. Two years later, she says, her supervising physician was more or less intimidated by the medical board into terminating their collaborative agreement. Finding another supervising physician proved so difficult that she accepted an offer from an ILADS doctor to work with him, requiring her to relocate her practice to San Francisco. The changes impacted every area of her life—and yet, she persists in caring for Lyme disease patients according to the ILADS guidelines.
Why? “Somebody’s got to take care of these people,” she says. “Every time I have a patient saying ‘I cannot even tell you how grateful I am to you for listening to me when no one else would, and for treating me when nobody else would, and for letting me live again,’ I just go, ‘Gosh, I have to do this. I have to.’”
Whether other clinicians will feel they have to treat Lyme disease using one of the competing regimens is for them alone to decide.
Degrees of Latitude: Real Issues Behind Clinical Doctorates
It’s no secret that America is facing a shortage of physicians—or that the supply is expected to dwindle by another 85,000 to 200,000 by 2015. Nor is it a surprise that “physicians are leaving primary care in droves,” in the words of Mary O’Neil Mundinger, DrPH, RN, Centennial Professor in Health Policy and Dean of the Columbia University School of Nursing in New York City. Couple these factors with a growing patient population with special, long-term needs, and you have the potential for a crisis.
Who is going to provide care not only to the increasing elderly population in the United States but also to the patients—from neonates to young adults—who are living with chronic conditions that would have prematurely killed their parents or grandparents? And how can NPs and PAs be better equipped to fill the gaps in the health care system?
Proponents say the clinical doctorate—or, more accurately, the level of training commensurate with a doctorate—is the answer.
A Doctorate by Any Other Name
Mention “clinical doctorate” to PAs or NPs, and there’s a good chance you’ll ignite a debate. For PAs, the furor kicked into high gear in December, when the first group of Doctor of Science Physician Assistant recipients graduated from the US Army/Baylor University postgraduate program. Suddenly, online forums were abuzz with speculation about whether such a program could or should be introduced into the civilian world.
“The only thing that’s got people hung up is the doctorate degree,” says MAJ Leonard Q. Gruppo Jr, MPAS, PA-C, Director of the Emergency Medicine Fellowship Program at Brooke Army Medical Center, Fort Sam Houston, Texas. He adds that the degree designation “was almost an afterthought. The training was the most important thing.”
The Army, faced with the same physician shortage as the rest of the country—perhaps more so because the nation is at war—decided to introduce residency training for PAs in a number of specialty areas, such as emergency medicine, orthopedics, and surgery. “That residency training is going to be very closely based upon the training that physicians do, to the extent that it’s reasonable,” Gruppo says. “For instance, a PA doing orthopedic residency is not going to learn how to do orthopedic surgery. But he’ll learn how to do all the nonoperative management—the pre-op, post-op, first assist, the clinic, the ER call. So he can free up our shrinking number of surgeons so they can do more surgery.”
More intensive training will be necessary, advocates say, if NPs and PAs are going to alleviate some of the health care problems the country currently faces. For one thing, right now, 26% of the physicians working in the US are foreign medical graduates.
“Now, many of them are excellent physicians, and I’m very glad that they came here to be doctors in America,” Gruppo says. “But it indicates that there’s a problem with the management of our entry-level medical schools, that we need to import 26% of our physicians. We also need to have NPs and PAs filling a significant role in the workforce—again, but there aren’t enough doctors.”
This is why, Gruppo says, “we need PAs who are significantly more clinically capable to step up to the plate and fill that gap. Not to become physicians, but to become better physician extenders.”
Nursing/Medicine Hybrid
Mundinger also sees a widening gap between patients in need of care and practitioners to provide it. “The category of patients who need specialists is growing so much faster than our medical education system can provide physicians to care for them,” she says. “We need to address the physician shortage at the same time we need to address that whole category of medical providers that used to be called ‘primary care.’”
That’s one reason behind the decision for the Doctor of Nursing Practice (DNP) to become the standard in the preparation of advanced practice nurses, a goal that the American Association of Colleges of Nursing would like to see accomplished by 2015.
Nurses who earn a DNP can be seen as “a hybrid,” Mundinger says, of nursing and medicine. Combined with the traditional nursing model of care, which includes evaluating patients’ resources and teaching them to provide self-care, the clinical decision-making skills taught in the medical model of education would enhance NPs’ role in patient care.
Doctoral programs will provide “critical skills that go well beyond adequate care on an appointment basis in the office,” Mundinger says. In addition to more differential diagnosis and pathophysiology, these skills include handling hospital admissions and discharges, conducting emergency department evaluations, and taking call—things that master’s-trained NPs may be capable of learning ad hoc. “But what we’ve done is standardized and formalized what that training ought to look like,” she explains, “so that every nurse who gets a clinical doctorate will have that skill set and won’t depend on somebody helping them learn it in a certain site over time.”
These competencies “need to be learned and practiced if nurses are going to be recognized and paid on a par with physicians as primary care providers,” Mundinger says. As evidence, she notes that of the 400 NPs working at Columbia’s medical center, only the 50 DNPs are included in contracts with commercial insurers.
“So we can independently bill any commercial insurer with which Columbia physicians have a contract—there are 12—and we get the same reimbursement. It’s clear to me that if you catch [the insurers’] eye and show them that you have the training comparable to physicians to do this work, they’re going to pay you the same amount of money.”
Motivation Is Everything
That, unfortunately, is the point at which the clinical doctorate debate diverges. Despite the desire to fill a similar need within the country, the political issues surrounding doctoral training are distinct for PAs and NPs.
“There’s a deeper issue here, and it’s not even related to degrees,” says Clinician Reviews PA Editor-in-Chief Randy D. Danielsen, PhD, PA-C. “And that is the autonomy of nurse practitioners versus the requirement of PAs to be linked with physicians and the whole issue of third-party reimbursement and the whole issue of liability. Having a doctorate doesn’t make that go away for PAs.”
This does not mean that Danielsen doesn’t see value in postgraduate education for PAs. “More than 50% of PAs in this country are in specialty practice,” he notes, “and many of them would like to have additional training, because the PA programs, with the amount of education that’s required now, are just scratching the surface.”
But, he adds, education and improved patient care should be the motivation for advanced training. “I sort of wonder what the underlying reason for this [would be]. If it’s getting the doctorate so that you can have ‘doctor’ before your name, that just seems ludicrous to me,” he says. “I think the whole idea of why the PA did it is going to be important in the relationship between the doctor and the PA.”
Gruppo has also noticed the politicizing of the debate. “We get caught up in this doctorate degree,” he says. “Look, every other allied health profession in the country trains to the doctorate level—every single one, except PAs. Until now. And the world still rotates on its axis, the sun still rises and sets, and dogs and cats are not sleeping with each other. And you know what? It’s going to be the same way for PAs.”
Danielsen acknowledges an external pressure for PAs to stay on par with other allied health professions. At A. T. Still University in Mesa, where he is Dean of the Arizona School of Health Sciences, physical therapists and audiologists train to the doctorate level, occupational therapists are moving in that direction, and even athletic trainers are considering the idea.
But, as he points out, “The elephant in the room here is that there are some PAs who want to bridge that gap, bring that gap closer, between what a PA is and what a physician is. There may be some PAs out there who say we need to have more autonomy, we need to distance ourselves from the supervising physician, much like the nurse practitioners are doing.”
Perhaps, Danielsen says, “We ought to find a pathway between PA and physician—a way to have medical schools recognize the training and clinical experience of PAs and provide them a pathway into year 3 of medical school.” He adds that NPs who want to become physicians would also benefit from such a program.
Gruppo adamantly believes that PAs can handle having a doctorate without impinging on the traditional physician-PA relationship. But he encourages leaders from the American Medical Association, the American Academy of Physician Assistants, and various specialty organizations to examine what the Army is doing with its postgraduate program. “See if maybe it’s something that could be transferable in some fashion to the civilian side,” he says. “And maybe the answer will be, ‘No, it’s a bad idea—but we’ve got this other idea that’s even better.’ Well, great! But we’d better do something. To do nothing is irresponsible and does a disservice to patients in this country.”
As the discussion continues, Danielsen too hopes the focus will remain where it belongs. “Sometimes we lose sight of the bottom line, which is patient care,” he says. “If we lose sight of that, what does it matter?”
It’s no secret that America is facing a shortage of physicians—or that the supply is expected to dwindle by another 85,000 to 200,000 by 2015. Nor is it a surprise that “physicians are leaving primary care in droves,” in the words of Mary O’Neil Mundinger, DrPH, RN, Centennial Professor in Health Policy and Dean of the Columbia University School of Nursing in New York City. Couple these factors with a growing patient population with special, long-term needs, and you have the potential for a crisis.
Who is going to provide care not only to the increasing elderly population in the United States but also to the patients—from neonates to young adults—who are living with chronic conditions that would have prematurely killed their parents or grandparents? And how can NPs and PAs be better equipped to fill the gaps in the health care system?
Proponents say the clinical doctorate—or, more accurately, the level of training commensurate with a doctorate—is the answer.
A Doctorate by Any Other Name
Mention “clinical doctorate” to PAs or NPs, and there’s a good chance you’ll ignite a debate. For PAs, the furor kicked into high gear in December, when the first group of Doctor of Science Physician Assistant recipients graduated from the US Army/Baylor University postgraduate program. Suddenly, online forums were abuzz with speculation about whether such a program could or should be introduced into the civilian world.
“The only thing that’s got people hung up is the doctorate degree,” says MAJ Leonard Q. Gruppo Jr, MPAS, PA-C, Director of the Emergency Medicine Fellowship Program at Brooke Army Medical Center, Fort Sam Houston, Texas. He adds that the degree designation “was almost an afterthought. The training was the most important thing.”
The Army, faced with the same physician shortage as the rest of the country—perhaps more so because the nation is at war—decided to introduce residency training for PAs in a number of specialty areas, such as emergency medicine, orthopedics, and surgery. “That residency training is going to be very closely based upon the training that physicians do, to the extent that it’s reasonable,” Gruppo says. “For instance, a PA doing orthopedic residency is not going to learn how to do orthopedic surgery. But he’ll learn how to do all the nonoperative management—the pre-op, post-op, first assist, the clinic, the ER call. So he can free up our shrinking number of surgeons so they can do more surgery.”
More intensive training will be necessary, advocates say, if NPs and PAs are going to alleviate some of the health care problems the country currently faces. For one thing, right now, 26% of the physicians working in the US are foreign medical graduates.
“Now, many of them are excellent physicians, and I’m very glad that they came here to be doctors in America,” Gruppo says. “But it indicates that there’s a problem with the management of our entry-level medical schools, that we need to import 26% of our physicians. We also need to have NPs and PAs filling a significant role in the workforce—again, but there aren’t enough doctors.”
This is why, Gruppo says, “we need PAs who are significantly more clinically capable to step up to the plate and fill that gap. Not to become physicians, but to become better physician extenders.”
Nursing/Medicine Hybrid
Mundinger also sees a widening gap between patients in need of care and practitioners to provide it. “The category of patients who need specialists is growing so much faster than our medical education system can provide physicians to care for them,” she says. “We need to address the physician shortage at the same time we need to address that whole category of medical providers that used to be called ‘primary care.’”
That’s one reason behind the decision for the Doctor of Nursing Practice (DNP) to become the standard in the preparation of advanced practice nurses, a goal that the American Association of Colleges of Nursing would like to see accomplished by 2015.
Nurses who earn a DNP can be seen as “a hybrid,” Mundinger says, of nursing and medicine. Combined with the traditional nursing model of care, which includes evaluating patients’ resources and teaching them to provide self-care, the clinical decision-making skills taught in the medical model of education would enhance NPs’ role in patient care.
Doctoral programs will provide “critical skills that go well beyond adequate care on an appointment basis in the office,” Mundinger says. In addition to more differential diagnosis and pathophysiology, these skills include handling hospital admissions and discharges, conducting emergency department evaluations, and taking call—things that master’s-trained NPs may be capable of learning ad hoc. “But what we’ve done is standardized and formalized what that training ought to look like,” she explains, “so that every nurse who gets a clinical doctorate will have that skill set and won’t depend on somebody helping them learn it in a certain site over time.”
These competencies “need to be learned and practiced if nurses are going to be recognized and paid on a par with physicians as primary care providers,” Mundinger says. As evidence, she notes that of the 400 NPs working at Columbia’s medical center, only the 50 DNPs are included in contracts with commercial insurers.
“So we can independently bill any commercial insurer with which Columbia physicians have a contract—there are 12—and we get the same reimbursement. It’s clear to me that if you catch [the insurers’] eye and show them that you have the training comparable to physicians to do this work, they’re going to pay you the same amount of money.”
Motivation Is Everything
That, unfortunately, is the point at which the clinical doctorate debate diverges. Despite the desire to fill a similar need within the country, the political issues surrounding doctoral training are distinct for PAs and NPs.
“There’s a deeper issue here, and it’s not even related to degrees,” says Clinician Reviews PA Editor-in-Chief Randy D. Danielsen, PhD, PA-C. “And that is the autonomy of nurse practitioners versus the requirement of PAs to be linked with physicians and the whole issue of third-party reimbursement and the whole issue of liability. Having a doctorate doesn’t make that go away for PAs.”
This does not mean that Danielsen doesn’t see value in postgraduate education for PAs. “More than 50% of PAs in this country are in specialty practice,” he notes, “and many of them would like to have additional training, because the PA programs, with the amount of education that’s required now, are just scratching the surface.”
But, he adds, education and improved patient care should be the motivation for advanced training. “I sort of wonder what the underlying reason for this [would be]. If it’s getting the doctorate so that you can have ‘doctor’ before your name, that just seems ludicrous to me,” he says. “I think the whole idea of why the PA did it is going to be important in the relationship between the doctor and the PA.”
Gruppo has also noticed the politicizing of the debate. “We get caught up in this doctorate degree,” he says. “Look, every other allied health profession in the country trains to the doctorate level—every single one, except PAs. Until now. And the world still rotates on its axis, the sun still rises and sets, and dogs and cats are not sleeping with each other. And you know what? It’s going to be the same way for PAs.”
Danielsen acknowledges an external pressure for PAs to stay on par with other allied health professions. At A. T. Still University in Mesa, where he is Dean of the Arizona School of Health Sciences, physical therapists and audiologists train to the doctorate level, occupational therapists are moving in that direction, and even athletic trainers are considering the idea.
But, as he points out, “The elephant in the room here is that there are some PAs who want to bridge that gap, bring that gap closer, between what a PA is and what a physician is. There may be some PAs out there who say we need to have more autonomy, we need to distance ourselves from the supervising physician, much like the nurse practitioners are doing.”
Perhaps, Danielsen says, “We ought to find a pathway between PA and physician—a way to have medical schools recognize the training and clinical experience of PAs and provide them a pathway into year 3 of medical school.” He adds that NPs who want to become physicians would also benefit from such a program.
Gruppo adamantly believes that PAs can handle having a doctorate without impinging on the traditional physician-PA relationship. But he encourages leaders from the American Medical Association, the American Academy of Physician Assistants, and various specialty organizations to examine what the Army is doing with its postgraduate program. “See if maybe it’s something that could be transferable in some fashion to the civilian side,” he says. “And maybe the answer will be, ‘No, it’s a bad idea—but we’ve got this other idea that’s even better.’ Well, great! But we’d better do something. To do nothing is irresponsible and does a disservice to patients in this country.”
As the discussion continues, Danielsen too hopes the focus will remain where it belongs. “Sometimes we lose sight of the bottom line, which is patient care,” he says. “If we lose sight of that, what does it matter?”
It’s no secret that America is facing a shortage of physicians—or that the supply is expected to dwindle by another 85,000 to 200,000 by 2015. Nor is it a surprise that “physicians are leaving primary care in droves,” in the words of Mary O’Neil Mundinger, DrPH, RN, Centennial Professor in Health Policy and Dean of the Columbia University School of Nursing in New York City. Couple these factors with a growing patient population with special, long-term needs, and you have the potential for a crisis.
Who is going to provide care not only to the increasing elderly population in the United States but also to the patients—from neonates to young adults—who are living with chronic conditions that would have prematurely killed their parents or grandparents? And how can NPs and PAs be better equipped to fill the gaps in the health care system?
Proponents say the clinical doctorate—or, more accurately, the level of training commensurate with a doctorate—is the answer.
A Doctorate by Any Other Name
Mention “clinical doctorate” to PAs or NPs, and there’s a good chance you’ll ignite a debate. For PAs, the furor kicked into high gear in December, when the first group of Doctor of Science Physician Assistant recipients graduated from the US Army/Baylor University postgraduate program. Suddenly, online forums were abuzz with speculation about whether such a program could or should be introduced into the civilian world.
“The only thing that’s got people hung up is the doctorate degree,” says MAJ Leonard Q. Gruppo Jr, MPAS, PA-C, Director of the Emergency Medicine Fellowship Program at Brooke Army Medical Center, Fort Sam Houston, Texas. He adds that the degree designation “was almost an afterthought. The training was the most important thing.”
The Army, faced with the same physician shortage as the rest of the country—perhaps more so because the nation is at war—decided to introduce residency training for PAs in a number of specialty areas, such as emergency medicine, orthopedics, and surgery. “That residency training is going to be very closely based upon the training that physicians do, to the extent that it’s reasonable,” Gruppo says. “For instance, a PA doing orthopedic residency is not going to learn how to do orthopedic surgery. But he’ll learn how to do all the nonoperative management—the pre-op, post-op, first assist, the clinic, the ER call. So he can free up our shrinking number of surgeons so they can do more surgery.”
More intensive training will be necessary, advocates say, if NPs and PAs are going to alleviate some of the health care problems the country currently faces. For one thing, right now, 26% of the physicians working in the US are foreign medical graduates.
“Now, many of them are excellent physicians, and I’m very glad that they came here to be doctors in America,” Gruppo says. “But it indicates that there’s a problem with the management of our entry-level medical schools, that we need to import 26% of our physicians. We also need to have NPs and PAs filling a significant role in the workforce—again, but there aren’t enough doctors.”
This is why, Gruppo says, “we need PAs who are significantly more clinically capable to step up to the plate and fill that gap. Not to become physicians, but to become better physician extenders.”
Nursing/Medicine Hybrid
Mundinger also sees a widening gap between patients in need of care and practitioners to provide it. “The category of patients who need specialists is growing so much faster than our medical education system can provide physicians to care for them,” she says. “We need to address the physician shortage at the same time we need to address that whole category of medical providers that used to be called ‘primary care.’”
That’s one reason behind the decision for the Doctor of Nursing Practice (DNP) to become the standard in the preparation of advanced practice nurses, a goal that the American Association of Colleges of Nursing would like to see accomplished by 2015.
Nurses who earn a DNP can be seen as “a hybrid,” Mundinger says, of nursing and medicine. Combined with the traditional nursing model of care, which includes evaluating patients’ resources and teaching them to provide self-care, the clinical decision-making skills taught in the medical model of education would enhance NPs’ role in patient care.
Doctoral programs will provide “critical skills that go well beyond adequate care on an appointment basis in the office,” Mundinger says. In addition to more differential diagnosis and pathophysiology, these skills include handling hospital admissions and discharges, conducting emergency department evaluations, and taking call—things that master’s-trained NPs may be capable of learning ad hoc. “But what we’ve done is standardized and formalized what that training ought to look like,” she explains, “so that every nurse who gets a clinical doctorate will have that skill set and won’t depend on somebody helping them learn it in a certain site over time.”
These competencies “need to be learned and practiced if nurses are going to be recognized and paid on a par with physicians as primary care providers,” Mundinger says. As evidence, she notes that of the 400 NPs working at Columbia’s medical center, only the 50 DNPs are included in contracts with commercial insurers.
“So we can independently bill any commercial insurer with which Columbia physicians have a contract—there are 12—and we get the same reimbursement. It’s clear to me that if you catch [the insurers’] eye and show them that you have the training comparable to physicians to do this work, they’re going to pay you the same amount of money.”
Motivation Is Everything
That, unfortunately, is the point at which the clinical doctorate debate diverges. Despite the desire to fill a similar need within the country, the political issues surrounding doctoral training are distinct for PAs and NPs.
“There’s a deeper issue here, and it’s not even related to degrees,” says Clinician Reviews PA Editor-in-Chief Randy D. Danielsen, PhD, PA-C. “And that is the autonomy of nurse practitioners versus the requirement of PAs to be linked with physicians and the whole issue of third-party reimbursement and the whole issue of liability. Having a doctorate doesn’t make that go away for PAs.”
This does not mean that Danielsen doesn’t see value in postgraduate education for PAs. “More than 50% of PAs in this country are in specialty practice,” he notes, “and many of them would like to have additional training, because the PA programs, with the amount of education that’s required now, are just scratching the surface.”
But, he adds, education and improved patient care should be the motivation for advanced training. “I sort of wonder what the underlying reason for this [would be]. If it’s getting the doctorate so that you can have ‘doctor’ before your name, that just seems ludicrous to me,” he says. “I think the whole idea of why the PA did it is going to be important in the relationship between the doctor and the PA.”
Gruppo has also noticed the politicizing of the debate. “We get caught up in this doctorate degree,” he says. “Look, every other allied health profession in the country trains to the doctorate level—every single one, except PAs. Until now. And the world still rotates on its axis, the sun still rises and sets, and dogs and cats are not sleeping with each other. And you know what? It’s going to be the same way for PAs.”
Danielsen acknowledges an external pressure for PAs to stay on par with other allied health professions. At A. T. Still University in Mesa, where he is Dean of the Arizona School of Health Sciences, physical therapists and audiologists train to the doctorate level, occupational therapists are moving in that direction, and even athletic trainers are considering the idea.
But, as he points out, “The elephant in the room here is that there are some PAs who want to bridge that gap, bring that gap closer, between what a PA is and what a physician is. There may be some PAs out there who say we need to have more autonomy, we need to distance ourselves from the supervising physician, much like the nurse practitioners are doing.”
Perhaps, Danielsen says, “We ought to find a pathway between PA and physician—a way to have medical schools recognize the training and clinical experience of PAs and provide them a pathway into year 3 of medical school.” He adds that NPs who want to become physicians would also benefit from such a program.
Gruppo adamantly believes that PAs can handle having a doctorate without impinging on the traditional physician-PA relationship. But he encourages leaders from the American Medical Association, the American Academy of Physician Assistants, and various specialty organizations to examine what the Army is doing with its postgraduate program. “See if maybe it’s something that could be transferable in some fashion to the civilian side,” he says. “And maybe the answer will be, ‘No, it’s a bad idea—but we’ve got this other idea that’s even better.’ Well, great! But we’d better do something. To do nothing is irresponsible and does a disservice to patients in this country.”
As the discussion continues, Danielsen too hopes the focus will remain where it belongs. “Sometimes we lose sight of the bottom line, which is patient care,” he says. “If we lose sight of that, what does it matter?”
Rays of Hope in Autism Research
Researchers have discovered a new genetic cause of autism—a finding that provides additional knowledge about a complex condition but also highlights how far the scientific community is from fully explaining the disorder. The chromosome 16 abnormality identified by Weiss and colleagues and reported in the New England Journal of Medicine appears to account for about 1% of autism cases.
“This is going to help a small percentage of parents, and it’s going to frustrate the other 99%,” says Chantelle Wolpert, MBA, PA-C, CGC, Research Assistant, Department of Human Development and Family Studies, University of North Carolina (UNC) at Greensboro. “We’re in this area where none of these findings is going to be simple. We’re just not at the point where it’s one gene, one disease anymore.”
The “16p Form” of Autism
This particular finding eventually will enable clinicians to test children diagnosed as having autism spectrum disorder to determine whether their condition is caused by the chromosomal change. As with all genetic testing, the results will not provide definitive answers for every parent of a child with autism: The patient might not have the abnormality tested for, but that does not preclude the possibility that the child’s autism is caused by another, as-yet-unidentified, genetic change—or by something else entirely.
For parents whose children do receive a positive test result for “the 16p form of autism,” as it will likely be called in the literature, the greatest benefit may be an ounce of certainty about what is otherwise an uncertain and not-fully-understood disorder. Because autism spectrum disorder actually encompasses many different, behaviorally defined conditions, diagnosis is based on clinical judgment. The standardized method of evaluation enables clinicians to make the diagnosis, but until recently, Wolpert notes, “there wasn’t something black and white that a parent could grasp. Now there will be—at least for this 1% of people.”
Approximately 10% to 15% of children with autism have a condition that is identifiable; for example, clinicians can test for fragile X syndrome or the previously reported chromosome 15 anomaly associated with autism. Offering answers to another 1% of patients and parents “sounds small,” Wolpert observes. “Big deal, you can [provide results] in all specialties. But you can’t in autism, and that’s why” these findings are significant.
What Weiss and colleagues actually identified is a section at the top of chromosome 16 that is either duplicated or deleted in some autistic patients. The strength of the research lies in the fact that this chromosomal anomaly was found in patients from three distinct populations. There are many genes within that section of chromosome 16, so geneticists will have to map them to determine what those particular genes do or don’t do and how their multiplication or deletion can impact human development. Someday, these genes might provide a therapeutic target for patients with this type of autism—but such a day remains far in the future.
A Genetic Risk Factor
Meanwhile, an article and two reports recently published in the American Journal of Human Genetics describe a different type of genetic association with autism. In the study led by Alarcón, a variant on chromosome 7 was identified as a risk factor for autism. Chromosome 7 and the specific gene (contactin associated protein-like 2, or CNTNAP2) have been associated with language development. Now, based on these new findings, CNTNAP2 may be considered an autism susceptibility gene.
“This is a risk for autism,” Wolpert stresses. “It’s not enough to have this genetic variant. If you have a copy of this particular gene, it doesn’t mean you’re going to develop autism.”
Reports by Arking et al and Bakkaloglu et al provide an additional line of evidence for CNTNAP2 as an autism susceptibility candidate. Furthermore, one of the reports also identified a genetic heritability component: Autistic children were significantly more likely to inherit the gene variation from their mothers than from their fathers.
“Again, we’re one step closer,” Wolpert says. But “there is no genetic testing for this right now”—whereas, for the 16p form of autism, “there will be genetic testing for that sooner rather than later.”
Still, clinicians should not expect a flurry of test ordering. Parents who have heard about these findings, and who have long wished for answers about their children’s condition, may approach the topic at an office visit (or even demand that their child be tested). Clinicians will have to explain to parents the likelihood of finding a definitive explanation.
“If they know that ahead of time, they’re usually fine,” says Wolpert, who spent 12 years at Duke University’s Center for Human Genetics before entering the PhD program at UNC–Greensboro. “It’s when you send off a genetic test and you don’t explain what it means” that parents can feel a deeper sense of frustration at receiving a negative test result. “They may leave the office thinking, ‘OK, it wasn’t this thing that the researchers discovered, so it’s not genetic!’” Or they might have their own personal theories about what caused their children’s autism, including blaming themselves in some way.
Recommendations will have to be developed so clinicians have a guideline of who should be tested for genetic causes of autism. With the average test costing $2,000 to $5,000, insurers may question the validity of testing for a chromosomal anomaly that occurs in a mere 1% of autistic persons.
Looking Beyond Thimerosal
One of the most persistent theories about autism is that it is caused, at least in some cases, by exposure to thimerosal, which was used as a preservative in many vaccines until about 10 years ago, when manufacturers started removing it from their products. Numerous studies have failed to identify such a link, but many parents remain unconvinced.
A study by Schechter and Grether in the Archives of General Psychiatry is among the most recent to dispel the autism-thimerosal link. The researchers discovered that rates of autism continued to rise in California even after thimerosal had been removed from vaccines. “[T]ime trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California,” the authors write. However, “we support the continued quest for the timely discovery of modifiable risk factors for autism and related conditions.”
Eric Fombonne, MD, from the Department of Psychiatry at Montreal Children’s Hospital, expressed frustration in his accompanying editorial: “How many more negative study results are required for the belief to go away, and how much more spending of public funds on this issue could even be justified?”
While remaining neutral about thimerosal, Wolpert acknowledges the “need [for] more research funding—for all aspects, not just genetics.”
Since pharmacologic therapy for autism, let alone a cure, is little more than a dream at this stage, it might be beneficial to explore ways to address the issues experienced by patients and parents living with autism. “How are we going to help the parents and patients who already have this [diagnosis]?” Wolpert asks. “What factors in a family or educational system help a child to achieve his or her highest level of ability?”
Identification of additional genetic factors will also open the doorway to exploring the role of environmental factors in autism. “If you can control for one variable in a study, then you can examine the others,” Wolpert points out.
Progress may be slow, but clinicians, parents, and patients have reason to hope. “The bad news is 85% to 90% of autism is still unexplained,” Wolpert says. “Then again, what great progress! Ten years ago, we knew autism had a genetic basis, but that’s all we knew. Now, we have causative genes and genes that increase risk. We’re making headway.”
Researchers have discovered a new genetic cause of autism—a finding that provides additional knowledge about a complex condition but also highlights how far the scientific community is from fully explaining the disorder. The chromosome 16 abnormality identified by Weiss and colleagues and reported in the New England Journal of Medicine appears to account for about 1% of autism cases.
“This is going to help a small percentage of parents, and it’s going to frustrate the other 99%,” says Chantelle Wolpert, MBA, PA-C, CGC, Research Assistant, Department of Human Development and Family Studies, University of North Carolina (UNC) at Greensboro. “We’re in this area where none of these findings is going to be simple. We’re just not at the point where it’s one gene, one disease anymore.”
The “16p Form” of Autism
This particular finding eventually will enable clinicians to test children diagnosed as having autism spectrum disorder to determine whether their condition is caused by the chromosomal change. As with all genetic testing, the results will not provide definitive answers for every parent of a child with autism: The patient might not have the abnormality tested for, but that does not preclude the possibility that the child’s autism is caused by another, as-yet-unidentified, genetic change—or by something else entirely.
For parents whose children do receive a positive test result for “the 16p form of autism,” as it will likely be called in the literature, the greatest benefit may be an ounce of certainty about what is otherwise an uncertain and not-fully-understood disorder. Because autism spectrum disorder actually encompasses many different, behaviorally defined conditions, diagnosis is based on clinical judgment. The standardized method of evaluation enables clinicians to make the diagnosis, but until recently, Wolpert notes, “there wasn’t something black and white that a parent could grasp. Now there will be—at least for this 1% of people.”
Approximately 10% to 15% of children with autism have a condition that is identifiable; for example, clinicians can test for fragile X syndrome or the previously reported chromosome 15 anomaly associated with autism. Offering answers to another 1% of patients and parents “sounds small,” Wolpert observes. “Big deal, you can [provide results] in all specialties. But you can’t in autism, and that’s why” these findings are significant.
What Weiss and colleagues actually identified is a section at the top of chromosome 16 that is either duplicated or deleted in some autistic patients. The strength of the research lies in the fact that this chromosomal anomaly was found in patients from three distinct populations. There are many genes within that section of chromosome 16, so geneticists will have to map them to determine what those particular genes do or don’t do and how their multiplication or deletion can impact human development. Someday, these genes might provide a therapeutic target for patients with this type of autism—but such a day remains far in the future.
A Genetic Risk Factor
Meanwhile, an article and two reports recently published in the American Journal of Human Genetics describe a different type of genetic association with autism. In the study led by Alarcón, a variant on chromosome 7 was identified as a risk factor for autism. Chromosome 7 and the specific gene (contactin associated protein-like 2, or CNTNAP2) have been associated with language development. Now, based on these new findings, CNTNAP2 may be considered an autism susceptibility gene.
“This is a risk for autism,” Wolpert stresses. “It’s not enough to have this genetic variant. If you have a copy of this particular gene, it doesn’t mean you’re going to develop autism.”
Reports by Arking et al and Bakkaloglu et al provide an additional line of evidence for CNTNAP2 as an autism susceptibility candidate. Furthermore, one of the reports also identified a genetic heritability component: Autistic children were significantly more likely to inherit the gene variation from their mothers than from their fathers.
“Again, we’re one step closer,” Wolpert says. But “there is no genetic testing for this right now”—whereas, for the 16p form of autism, “there will be genetic testing for that sooner rather than later.”
Still, clinicians should not expect a flurry of test ordering. Parents who have heard about these findings, and who have long wished for answers about their children’s condition, may approach the topic at an office visit (or even demand that their child be tested). Clinicians will have to explain to parents the likelihood of finding a definitive explanation.
“If they know that ahead of time, they’re usually fine,” says Wolpert, who spent 12 years at Duke University’s Center for Human Genetics before entering the PhD program at UNC–Greensboro. “It’s when you send off a genetic test and you don’t explain what it means” that parents can feel a deeper sense of frustration at receiving a negative test result. “They may leave the office thinking, ‘OK, it wasn’t this thing that the researchers discovered, so it’s not genetic!’” Or they might have their own personal theories about what caused their children’s autism, including blaming themselves in some way.
Recommendations will have to be developed so clinicians have a guideline of who should be tested for genetic causes of autism. With the average test costing $2,000 to $5,000, insurers may question the validity of testing for a chromosomal anomaly that occurs in a mere 1% of autistic persons.
Looking Beyond Thimerosal
One of the most persistent theories about autism is that it is caused, at least in some cases, by exposure to thimerosal, which was used as a preservative in many vaccines until about 10 years ago, when manufacturers started removing it from their products. Numerous studies have failed to identify such a link, but many parents remain unconvinced.
A study by Schechter and Grether in the Archives of General Psychiatry is among the most recent to dispel the autism-thimerosal link. The researchers discovered that rates of autism continued to rise in California even after thimerosal had been removed from vaccines. “[T]ime trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California,” the authors write. However, “we support the continued quest for the timely discovery of modifiable risk factors for autism and related conditions.”
Eric Fombonne, MD, from the Department of Psychiatry at Montreal Children’s Hospital, expressed frustration in his accompanying editorial: “How many more negative study results are required for the belief to go away, and how much more spending of public funds on this issue could even be justified?”
While remaining neutral about thimerosal, Wolpert acknowledges the “need [for] more research funding—for all aspects, not just genetics.”
Since pharmacologic therapy for autism, let alone a cure, is little more than a dream at this stage, it might be beneficial to explore ways to address the issues experienced by patients and parents living with autism. “How are we going to help the parents and patients who already have this [diagnosis]?” Wolpert asks. “What factors in a family or educational system help a child to achieve his or her highest level of ability?”
Identification of additional genetic factors will also open the doorway to exploring the role of environmental factors in autism. “If you can control for one variable in a study, then you can examine the others,” Wolpert points out.
Progress may be slow, but clinicians, parents, and patients have reason to hope. “The bad news is 85% to 90% of autism is still unexplained,” Wolpert says. “Then again, what great progress! Ten years ago, we knew autism had a genetic basis, but that’s all we knew. Now, we have causative genes and genes that increase risk. We’re making headway.”
Researchers have discovered a new genetic cause of autism—a finding that provides additional knowledge about a complex condition but also highlights how far the scientific community is from fully explaining the disorder. The chromosome 16 abnormality identified by Weiss and colleagues and reported in the New England Journal of Medicine appears to account for about 1% of autism cases.
“This is going to help a small percentage of parents, and it’s going to frustrate the other 99%,” says Chantelle Wolpert, MBA, PA-C, CGC, Research Assistant, Department of Human Development and Family Studies, University of North Carolina (UNC) at Greensboro. “We’re in this area where none of these findings is going to be simple. We’re just not at the point where it’s one gene, one disease anymore.”
The “16p Form” of Autism
This particular finding eventually will enable clinicians to test children diagnosed as having autism spectrum disorder to determine whether their condition is caused by the chromosomal change. As with all genetic testing, the results will not provide definitive answers for every parent of a child with autism: The patient might not have the abnormality tested for, but that does not preclude the possibility that the child’s autism is caused by another, as-yet-unidentified, genetic change—or by something else entirely.
For parents whose children do receive a positive test result for “the 16p form of autism,” as it will likely be called in the literature, the greatest benefit may be an ounce of certainty about what is otherwise an uncertain and not-fully-understood disorder. Because autism spectrum disorder actually encompasses many different, behaviorally defined conditions, diagnosis is based on clinical judgment. The standardized method of evaluation enables clinicians to make the diagnosis, but until recently, Wolpert notes, “there wasn’t something black and white that a parent could grasp. Now there will be—at least for this 1% of people.”
Approximately 10% to 15% of children with autism have a condition that is identifiable; for example, clinicians can test for fragile X syndrome or the previously reported chromosome 15 anomaly associated with autism. Offering answers to another 1% of patients and parents “sounds small,” Wolpert observes. “Big deal, you can [provide results] in all specialties. But you can’t in autism, and that’s why” these findings are significant.
What Weiss and colleagues actually identified is a section at the top of chromosome 16 that is either duplicated or deleted in some autistic patients. The strength of the research lies in the fact that this chromosomal anomaly was found in patients from three distinct populations. There are many genes within that section of chromosome 16, so geneticists will have to map them to determine what those particular genes do or don’t do and how their multiplication or deletion can impact human development. Someday, these genes might provide a therapeutic target for patients with this type of autism—but such a day remains far in the future.
A Genetic Risk Factor
Meanwhile, an article and two reports recently published in the American Journal of Human Genetics describe a different type of genetic association with autism. In the study led by Alarcón, a variant on chromosome 7 was identified as a risk factor for autism. Chromosome 7 and the specific gene (contactin associated protein-like 2, or CNTNAP2) have been associated with language development. Now, based on these new findings, CNTNAP2 may be considered an autism susceptibility gene.
“This is a risk for autism,” Wolpert stresses. “It’s not enough to have this genetic variant. If you have a copy of this particular gene, it doesn’t mean you’re going to develop autism.”
Reports by Arking et al and Bakkaloglu et al provide an additional line of evidence for CNTNAP2 as an autism susceptibility candidate. Furthermore, one of the reports also identified a genetic heritability component: Autistic children were significantly more likely to inherit the gene variation from their mothers than from their fathers.
“Again, we’re one step closer,” Wolpert says. But “there is no genetic testing for this right now”—whereas, for the 16p form of autism, “there will be genetic testing for that sooner rather than later.”
Still, clinicians should not expect a flurry of test ordering. Parents who have heard about these findings, and who have long wished for answers about their children’s condition, may approach the topic at an office visit (or even demand that their child be tested). Clinicians will have to explain to parents the likelihood of finding a definitive explanation.
“If they know that ahead of time, they’re usually fine,” says Wolpert, who spent 12 years at Duke University’s Center for Human Genetics before entering the PhD program at UNC–Greensboro. “It’s when you send off a genetic test and you don’t explain what it means” that parents can feel a deeper sense of frustration at receiving a negative test result. “They may leave the office thinking, ‘OK, it wasn’t this thing that the researchers discovered, so it’s not genetic!’” Or they might have their own personal theories about what caused their children’s autism, including blaming themselves in some way.
Recommendations will have to be developed so clinicians have a guideline of who should be tested for genetic causes of autism. With the average test costing $2,000 to $5,000, insurers may question the validity of testing for a chromosomal anomaly that occurs in a mere 1% of autistic persons.
Looking Beyond Thimerosal
One of the most persistent theories about autism is that it is caused, at least in some cases, by exposure to thimerosal, which was used as a preservative in many vaccines until about 10 years ago, when manufacturers started removing it from their products. Numerous studies have failed to identify such a link, but many parents remain unconvinced.
A study by Schechter and Grether in the Archives of General Psychiatry is among the most recent to dispel the autism-thimerosal link. The researchers discovered that rates of autism continued to rise in California even after thimerosal had been removed from vaccines. “[T]ime trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California,” the authors write. However, “we support the continued quest for the timely discovery of modifiable risk factors for autism and related conditions.”
Eric Fombonne, MD, from the Department of Psychiatry at Montreal Children’s Hospital, expressed frustration in his accompanying editorial: “How many more negative study results are required for the belief to go away, and how much more spending of public funds on this issue could even be justified?”
While remaining neutral about thimerosal, Wolpert acknowledges the “need [for] more research funding—for all aspects, not just genetics.”
Since pharmacologic therapy for autism, let alone a cure, is little more than a dream at this stage, it might be beneficial to explore ways to address the issues experienced by patients and parents living with autism. “How are we going to help the parents and patients who already have this [diagnosis]?” Wolpert asks. “What factors in a family or educational system help a child to achieve his or her highest level of ability?”
Identification of additional genetic factors will also open the doorway to exploring the role of environmental factors in autism. “If you can control for one variable in a study, then you can examine the others,” Wolpert points out.
Progress may be slow, but clinicians, parents, and patients have reason to hope. “The bad news is 85% to 90% of autism is still unexplained,” Wolpert says. “Then again, what great progress! Ten years ago, we knew autism had a genetic basis, but that’s all we knew. Now, we have causative genes and genes that increase risk. We’re making headway.”
Silence Gives Consent: Practice, Politics, and Patient Care
Forty years after the establishment of their professions, PAs and NPs can look back with pride at the advances they have made. Yet each year, on both state and national levels, new legislation is proposed that will impact—for better or worse—their ability to provide high-quality patient care.
Staying on top of the issues can be a full-time job, and the one thing practicing clinicians never seem to have is enough time. It leaves many to wonder, “Can’t someone else take care of those details?”
Therein lies folly, say leaders from both the American Academy of Nurse Practitioners (AANP) and the American Academy of Physician Assistants (AAPA). “If you don’t participate, then you are at the mercy of those who choose to,” says Ann Davis, PA-C, Director of State Government Affairs for AAPA. “And they may not make decisions that you like.”
Furthermore, clinicians’ livelihoods depend on the policy decisions of local, state, and federal governments. The bottom line, according to Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for AANP, is “you’re not going to keep your ‘real’ job if you don’t have laws and regulations and policies that allow us to function.”
A Matter of Priorities
Lest anyone suspect Towers is exaggerating, a case in point: Last year, the PA Practice Act in Illinois—which, in a nutshell, gives PAs the right to practice in the state—was due for renewal. The Illinois Academy of Physician Assistants (IAPA) set to work at the start of 2007, contacting other organizations and state departments to iron out any potential areas of conflict in advance; the organization purposely avoided any controversial requests in SB149. In March, the bill made it through the Senate without difficulty and moved to the House.
However, in a crowded legislative session, the bill languished there—and the addition of five separate amendments further delayed its progress. (Each time an amendment is proposed, a bill must go back to committee for review and approval.) Salvation came only when a senator added the renewal of the PA Practice Act (along with those of many other professions) to HB1284, which had passed in the House and was under consideration by the Senate. Thanks to the persistent efforts of IAPA and many individual PAs, the bill zipped through three committees in one day, was placed on the agenda, and passed on November 2.
“Could it have happened without everybody calling? Maybe,” says IAPA President Sherie Turner, PA-C. “But we’ve never seen anything happen that rapidly before.”
Turner was informed by her local representative that “there was so much pending legislation in Illinois at the end of the year that our bill could certainly have gotten lost.” [After another nail-biting wait, Gov. Rod Blagojevich signed the bill into law on December 31—just in time.]
While opposition to a bill is perhaps a more obvious cause for concern, matters of priority are increasingly common. “Our issues, on the scale of things like a trillion-dollar budget, are relatively small, so it’s hard to get them to rise to the surface unless there’s a lot of push from the constituencies,” Towers observes.
This emphasizes the importance of PAs and NPs—collectively and individually—to the success of a legislative initiative.
If You Don’t, Who Will?
Turner understands the complacency that many feel when it comes to politics. “I can tell you I didn’t do anything much legislatively, or actively contact my representatives, before I was in this position and felt it was my responsibility,” she admits.
There are things that every clinician can do, “even when you have newborn twins with colic and your hair is on fire,” as AAPA’s Davis says. She adds that everyone should “become involved personally in the political process, to whatever extent you are able.”
Political activism can range from putting up a yard sign in support of a candidate at election time or occasionally attending a forum at which candidates discuss issues, to hosting a fundraiser or contributing to a political action committee “that is aligned with your interests or the interests of patients,” Davis says. Staying on top of issues related to clinical practice or other aspects of patient care is as easy as reading the newspaper, surfing the Internet, or staying in contact with your state professional organization.
“Every state is its own little country,” Davis says. “That’s the really great thing about having state chapters—those folks know what works here, who you can talk to.”
Yet, state professional organizations struggle with membership. The financial support from membership dues can enable a group to establish an office and have a full-time director who can monitor legislative and regulatory issues. More fiscally solvent professional groups can afford to have full-time lobbyists.
This is not to suggest that only full-time staff can make a difference. When resources are limited, Towers says, “Volunteers have done an excellent job of monitoring state board meetings, advocating for legislation in the state.”
Strong membership numbers can also impact legislators’ perceptions. If, for example, an organization professes to represent PAs in New York, a legislator may want to know what percentage of the state’s PAs belong to the group. “And you don’t want to have to say it’s five,” Davis says. “You want to be able to say it’s the majority.”
Did We Mention Networking?
Active involvement is the best way to make a difference. While letter-writing and cold-calling campaigns can help when legislation is on the table, everyone agrees that establishing long-term relationships is most beneficial.
“The more you have a rapport with a legislator or regulator, so they understand the issues when you really need them, then they’re going to be there for you,” Towers says. She adds that frequent staff turnover in legislators’ offices often necessitates repeat visits or calls to ensure that the legislator stays on top of health care issues.
It may be an arduous process, but connections can pay off in the long run—as NPs in Oregon learned last year when legislation to establish a “scope-of-practice review board” was proposed. The original bill was intended to evaluate new scope-of-practice requests from a variety of health care providers, and was not viewed by the sponsoring senator—herself an RN—as a threat to established practitioners, according to Bunny Lewis, NM, NP, Chair, Nurse Practitioners of Oregon (NPO; a special interest group affiliated with the Oregon Nurses Association [ONA]).
“What became a problem was when they were trying to fund it, the Board of Medical Examiners stepped up and said, ‘Hey, we’ll be glad to do this,’” Lewis explains. At that point, concern among NPs escalated. “We would not be comfortable with that,” Lewis says—especially if future amendments to the bill allowed reconsideration of already-approved practice parameters.
The NPO and ONA capitalized on their long-standing relationship with the sponsoring senator to find ways to water down and eventually stifle the bill. What made the difference, Lewis says, was “meeting one-on-one with the senator, going to her and saying, ‘You’ve got to stop this. This is threatening every NP in the state.’”
It didn’t hurt that NPO and ONA “have a reputation for being honest and trustworthy and supporting those issues that are truly important,” Lewis adds. “We’ve worked for a lot of years; this is not something that just happened overnight.”
Of course, legislators are not the only people PAs and NPs need to connect with if they want to continue to advance their practice. “You really need to be in tune with what’s going on with the department of insurance in your state, with the state boards of nursing [or medicine]—the people who make the rules, not just the statutes,” Towers points out.
And never underestimate the power of forming coalitions with like-minded groups. “The more you can reach out to groups that are interested in the same issues, whether it be other health care professional groups or other citizen groups, such as AARP, and create coalitions there, the better it is,” Towers says.
Davis agrees. If the state legislature is considering legislation to allow parents to administer insulin on school grounds, for example, PAs alone may have a modest influence. However, she says, “if we show up with the pediatricians and the certified diabetes educators and the nurses association and the emergency room physicians and the American Diabetes Association local chapter to talk about the same issue, that’s pretty good—we’ll get their attention.”
At the Heart of It
Perhaps the most important thing to remember, when legislative initiatives seem too difficult or time-consuming to tackle, is that patients are at the heart of them all. “It’s very important to look at it from the perspective of patient care and not just ‘me, me, me,’” Towers says. “This has to do with our ability to provide care to our patients and has to do with access and quality of care.”
Clinicians cannot practice at all without laws and regulations that allow them to do so, and each additional privilege they receive enhances their ability to help someone else. Asking the state legislature to open the formulary isn’t about résumé enhancement for clinicians; it’s about providing patients with the medications they need. But even local issues that may not directly relate to PAs and NPs—such as the closure of an adult day care facility in the area—can impact patients’ well-being, and these may provide a small but vital opportunity to speak up. “If something is good for patients, then of course we must endorse it,” Davis says.
“We truly are in the trenches,” NPO’s Lewis says. “And we have a responsibility to make sure that our patients get safe health care and that it’s also the best health care they can get. So it’s more than just us.”
Towers says advocating for patients “needs to go beyond the walls of where you’re providing your care. Everyone should see themselves as someone who does advocate for their patients in this way.”
This is why, even when the odds seem to be against you and you have to make repeated attempts to get legislation passed, “you don’t give up,” Lewis says. “You just keep building relationships with those in power, and then those relationships will hold in the long run for you.”
Forty years after the establishment of their professions, PAs and NPs can look back with pride at the advances they have made. Yet each year, on both state and national levels, new legislation is proposed that will impact—for better or worse—their ability to provide high-quality patient care.
Staying on top of the issues can be a full-time job, and the one thing practicing clinicians never seem to have is enough time. It leaves many to wonder, “Can’t someone else take care of those details?”
Therein lies folly, say leaders from both the American Academy of Nurse Practitioners (AANP) and the American Academy of Physician Assistants (AAPA). “If you don’t participate, then you are at the mercy of those who choose to,” says Ann Davis, PA-C, Director of State Government Affairs for AAPA. “And they may not make decisions that you like.”
Furthermore, clinicians’ livelihoods depend on the policy decisions of local, state, and federal governments. The bottom line, according to Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for AANP, is “you’re not going to keep your ‘real’ job if you don’t have laws and regulations and policies that allow us to function.”
A Matter of Priorities
Lest anyone suspect Towers is exaggerating, a case in point: Last year, the PA Practice Act in Illinois—which, in a nutshell, gives PAs the right to practice in the state—was due for renewal. The Illinois Academy of Physician Assistants (IAPA) set to work at the start of 2007, contacting other organizations and state departments to iron out any potential areas of conflict in advance; the organization purposely avoided any controversial requests in SB149. In March, the bill made it through the Senate without difficulty and moved to the House.
However, in a crowded legislative session, the bill languished there—and the addition of five separate amendments further delayed its progress. (Each time an amendment is proposed, a bill must go back to committee for review and approval.) Salvation came only when a senator added the renewal of the PA Practice Act (along with those of many other professions) to HB1284, which had passed in the House and was under consideration by the Senate. Thanks to the persistent efforts of IAPA and many individual PAs, the bill zipped through three committees in one day, was placed on the agenda, and passed on November 2.
“Could it have happened without everybody calling? Maybe,” says IAPA President Sherie Turner, PA-C. “But we’ve never seen anything happen that rapidly before.”
Turner was informed by her local representative that “there was so much pending legislation in Illinois at the end of the year that our bill could certainly have gotten lost.” [After another nail-biting wait, Gov. Rod Blagojevich signed the bill into law on December 31—just in time.]
While opposition to a bill is perhaps a more obvious cause for concern, matters of priority are increasingly common. “Our issues, on the scale of things like a trillion-dollar budget, are relatively small, so it’s hard to get them to rise to the surface unless there’s a lot of push from the constituencies,” Towers observes.
This emphasizes the importance of PAs and NPs—collectively and individually—to the success of a legislative initiative.
If You Don’t, Who Will?
Turner understands the complacency that many feel when it comes to politics. “I can tell you I didn’t do anything much legislatively, or actively contact my representatives, before I was in this position and felt it was my responsibility,” she admits.
There are things that every clinician can do, “even when you have newborn twins with colic and your hair is on fire,” as AAPA’s Davis says. She adds that everyone should “become involved personally in the political process, to whatever extent you are able.”
Political activism can range from putting up a yard sign in support of a candidate at election time or occasionally attending a forum at which candidates discuss issues, to hosting a fundraiser or contributing to a political action committee “that is aligned with your interests or the interests of patients,” Davis says. Staying on top of issues related to clinical practice or other aspects of patient care is as easy as reading the newspaper, surfing the Internet, or staying in contact with your state professional organization.
“Every state is its own little country,” Davis says. “That’s the really great thing about having state chapters—those folks know what works here, who you can talk to.”
Yet, state professional organizations struggle with membership. The financial support from membership dues can enable a group to establish an office and have a full-time director who can monitor legislative and regulatory issues. More fiscally solvent professional groups can afford to have full-time lobbyists.
This is not to suggest that only full-time staff can make a difference. When resources are limited, Towers says, “Volunteers have done an excellent job of monitoring state board meetings, advocating for legislation in the state.”
Strong membership numbers can also impact legislators’ perceptions. If, for example, an organization professes to represent PAs in New York, a legislator may want to know what percentage of the state’s PAs belong to the group. “And you don’t want to have to say it’s five,” Davis says. “You want to be able to say it’s the majority.”
Did We Mention Networking?
Active involvement is the best way to make a difference. While letter-writing and cold-calling campaigns can help when legislation is on the table, everyone agrees that establishing long-term relationships is most beneficial.
“The more you have a rapport with a legislator or regulator, so they understand the issues when you really need them, then they’re going to be there for you,” Towers says. She adds that frequent staff turnover in legislators’ offices often necessitates repeat visits or calls to ensure that the legislator stays on top of health care issues.
It may be an arduous process, but connections can pay off in the long run—as NPs in Oregon learned last year when legislation to establish a “scope-of-practice review board” was proposed. The original bill was intended to evaluate new scope-of-practice requests from a variety of health care providers, and was not viewed by the sponsoring senator—herself an RN—as a threat to established practitioners, according to Bunny Lewis, NM, NP, Chair, Nurse Practitioners of Oregon (NPO; a special interest group affiliated with the Oregon Nurses Association [ONA]).
“What became a problem was when they were trying to fund it, the Board of Medical Examiners stepped up and said, ‘Hey, we’ll be glad to do this,’” Lewis explains. At that point, concern among NPs escalated. “We would not be comfortable with that,” Lewis says—especially if future amendments to the bill allowed reconsideration of already-approved practice parameters.
The NPO and ONA capitalized on their long-standing relationship with the sponsoring senator to find ways to water down and eventually stifle the bill. What made the difference, Lewis says, was “meeting one-on-one with the senator, going to her and saying, ‘You’ve got to stop this. This is threatening every NP in the state.’”
It didn’t hurt that NPO and ONA “have a reputation for being honest and trustworthy and supporting those issues that are truly important,” Lewis adds. “We’ve worked for a lot of years; this is not something that just happened overnight.”
Of course, legislators are not the only people PAs and NPs need to connect with if they want to continue to advance their practice. “You really need to be in tune with what’s going on with the department of insurance in your state, with the state boards of nursing [or medicine]—the people who make the rules, not just the statutes,” Towers points out.
And never underestimate the power of forming coalitions with like-minded groups. “The more you can reach out to groups that are interested in the same issues, whether it be other health care professional groups or other citizen groups, such as AARP, and create coalitions there, the better it is,” Towers says.
Davis agrees. If the state legislature is considering legislation to allow parents to administer insulin on school grounds, for example, PAs alone may have a modest influence. However, she says, “if we show up with the pediatricians and the certified diabetes educators and the nurses association and the emergency room physicians and the American Diabetes Association local chapter to talk about the same issue, that’s pretty good—we’ll get their attention.”
At the Heart of It
Perhaps the most important thing to remember, when legislative initiatives seem too difficult or time-consuming to tackle, is that patients are at the heart of them all. “It’s very important to look at it from the perspective of patient care and not just ‘me, me, me,’” Towers says. “This has to do with our ability to provide care to our patients and has to do with access and quality of care.”
Clinicians cannot practice at all without laws and regulations that allow them to do so, and each additional privilege they receive enhances their ability to help someone else. Asking the state legislature to open the formulary isn’t about résumé enhancement for clinicians; it’s about providing patients with the medications they need. But even local issues that may not directly relate to PAs and NPs—such as the closure of an adult day care facility in the area—can impact patients’ well-being, and these may provide a small but vital opportunity to speak up. “If something is good for patients, then of course we must endorse it,” Davis says.
“We truly are in the trenches,” NPO’s Lewis says. “And we have a responsibility to make sure that our patients get safe health care and that it’s also the best health care they can get. So it’s more than just us.”
Towers says advocating for patients “needs to go beyond the walls of where you’re providing your care. Everyone should see themselves as someone who does advocate for their patients in this way.”
This is why, even when the odds seem to be against you and you have to make repeated attempts to get legislation passed, “you don’t give up,” Lewis says. “You just keep building relationships with those in power, and then those relationships will hold in the long run for you.”
Forty years after the establishment of their professions, PAs and NPs can look back with pride at the advances they have made. Yet each year, on both state and national levels, new legislation is proposed that will impact—for better or worse—their ability to provide high-quality patient care.
Staying on top of the issues can be a full-time job, and the one thing practicing clinicians never seem to have is enough time. It leaves many to wonder, “Can’t someone else take care of those details?”
Therein lies folly, say leaders from both the American Academy of Nurse Practitioners (AANP) and the American Academy of Physician Assistants (AAPA). “If you don’t participate, then you are at the mercy of those who choose to,” says Ann Davis, PA-C, Director of State Government Affairs for AAPA. “And they may not make decisions that you like.”
Furthermore, clinicians’ livelihoods depend on the policy decisions of local, state, and federal governments. The bottom line, according to Jan Towers, PhD, NP-C, CRNP, FAANP, Director of Health Policy for AANP, is “you’re not going to keep your ‘real’ job if you don’t have laws and regulations and policies that allow us to function.”
A Matter of Priorities
Lest anyone suspect Towers is exaggerating, a case in point: Last year, the PA Practice Act in Illinois—which, in a nutshell, gives PAs the right to practice in the state—was due for renewal. The Illinois Academy of Physician Assistants (IAPA) set to work at the start of 2007, contacting other organizations and state departments to iron out any potential areas of conflict in advance; the organization purposely avoided any controversial requests in SB149. In March, the bill made it through the Senate without difficulty and moved to the House.
However, in a crowded legislative session, the bill languished there—and the addition of five separate amendments further delayed its progress. (Each time an amendment is proposed, a bill must go back to committee for review and approval.) Salvation came only when a senator added the renewal of the PA Practice Act (along with those of many other professions) to HB1284, which had passed in the House and was under consideration by the Senate. Thanks to the persistent efforts of IAPA and many individual PAs, the bill zipped through three committees in one day, was placed on the agenda, and passed on November 2.
“Could it have happened without everybody calling? Maybe,” says IAPA President Sherie Turner, PA-C. “But we’ve never seen anything happen that rapidly before.”
Turner was informed by her local representative that “there was so much pending legislation in Illinois at the end of the year that our bill could certainly have gotten lost.” [After another nail-biting wait, Gov. Rod Blagojevich signed the bill into law on December 31—just in time.]
While opposition to a bill is perhaps a more obvious cause for concern, matters of priority are increasingly common. “Our issues, on the scale of things like a trillion-dollar budget, are relatively small, so it’s hard to get them to rise to the surface unless there’s a lot of push from the constituencies,” Towers observes.
This emphasizes the importance of PAs and NPs—collectively and individually—to the success of a legislative initiative.
If You Don’t, Who Will?
Turner understands the complacency that many feel when it comes to politics. “I can tell you I didn’t do anything much legislatively, or actively contact my representatives, before I was in this position and felt it was my responsibility,” she admits.
There are things that every clinician can do, “even when you have newborn twins with colic and your hair is on fire,” as AAPA’s Davis says. She adds that everyone should “become involved personally in the political process, to whatever extent you are able.”
Political activism can range from putting up a yard sign in support of a candidate at election time or occasionally attending a forum at which candidates discuss issues, to hosting a fundraiser or contributing to a political action committee “that is aligned with your interests or the interests of patients,” Davis says. Staying on top of issues related to clinical practice or other aspects of patient care is as easy as reading the newspaper, surfing the Internet, or staying in contact with your state professional organization.
“Every state is its own little country,” Davis says. “That’s the really great thing about having state chapters—those folks know what works here, who you can talk to.”
Yet, state professional organizations struggle with membership. The financial support from membership dues can enable a group to establish an office and have a full-time director who can monitor legislative and regulatory issues. More fiscally solvent professional groups can afford to have full-time lobbyists.
This is not to suggest that only full-time staff can make a difference. When resources are limited, Towers says, “Volunteers have done an excellent job of monitoring state board meetings, advocating for legislation in the state.”
Strong membership numbers can also impact legislators’ perceptions. If, for example, an organization professes to represent PAs in New York, a legislator may want to know what percentage of the state’s PAs belong to the group. “And you don’t want to have to say it’s five,” Davis says. “You want to be able to say it’s the majority.”
Did We Mention Networking?
Active involvement is the best way to make a difference. While letter-writing and cold-calling campaigns can help when legislation is on the table, everyone agrees that establishing long-term relationships is most beneficial.
“The more you have a rapport with a legislator or regulator, so they understand the issues when you really need them, then they’re going to be there for you,” Towers says. She adds that frequent staff turnover in legislators’ offices often necessitates repeat visits or calls to ensure that the legislator stays on top of health care issues.
It may be an arduous process, but connections can pay off in the long run—as NPs in Oregon learned last year when legislation to establish a “scope-of-practice review board” was proposed. The original bill was intended to evaluate new scope-of-practice requests from a variety of health care providers, and was not viewed by the sponsoring senator—herself an RN—as a threat to established practitioners, according to Bunny Lewis, NM, NP, Chair, Nurse Practitioners of Oregon (NPO; a special interest group affiliated with the Oregon Nurses Association [ONA]).
“What became a problem was when they were trying to fund it, the Board of Medical Examiners stepped up and said, ‘Hey, we’ll be glad to do this,’” Lewis explains. At that point, concern among NPs escalated. “We would not be comfortable with that,” Lewis says—especially if future amendments to the bill allowed reconsideration of already-approved practice parameters.
The NPO and ONA capitalized on their long-standing relationship with the sponsoring senator to find ways to water down and eventually stifle the bill. What made the difference, Lewis says, was “meeting one-on-one with the senator, going to her and saying, ‘You’ve got to stop this. This is threatening every NP in the state.’”
It didn’t hurt that NPO and ONA “have a reputation for being honest and trustworthy and supporting those issues that are truly important,” Lewis adds. “We’ve worked for a lot of years; this is not something that just happened overnight.”
Of course, legislators are not the only people PAs and NPs need to connect with if they want to continue to advance their practice. “You really need to be in tune with what’s going on with the department of insurance in your state, with the state boards of nursing [or medicine]—the people who make the rules, not just the statutes,” Towers points out.
And never underestimate the power of forming coalitions with like-minded groups. “The more you can reach out to groups that are interested in the same issues, whether it be other health care professional groups or other citizen groups, such as AARP, and create coalitions there, the better it is,” Towers says.
Davis agrees. If the state legislature is considering legislation to allow parents to administer insulin on school grounds, for example, PAs alone may have a modest influence. However, she says, “if we show up with the pediatricians and the certified diabetes educators and the nurses association and the emergency room physicians and the American Diabetes Association local chapter to talk about the same issue, that’s pretty good—we’ll get their attention.”
At the Heart of It
Perhaps the most important thing to remember, when legislative initiatives seem too difficult or time-consuming to tackle, is that patients are at the heart of them all. “It’s very important to look at it from the perspective of patient care and not just ‘me, me, me,’” Towers says. “This has to do with our ability to provide care to our patients and has to do with access and quality of care.”
Clinicians cannot practice at all without laws and regulations that allow them to do so, and each additional privilege they receive enhances their ability to help someone else. Asking the state legislature to open the formulary isn’t about résumé enhancement for clinicians; it’s about providing patients with the medications they need. But even local issues that may not directly relate to PAs and NPs—such as the closure of an adult day care facility in the area—can impact patients’ well-being, and these may provide a small but vital opportunity to speak up. “If something is good for patients, then of course we must endorse it,” Davis says.
“We truly are in the trenches,” NPO’s Lewis says. “And we have a responsibility to make sure that our patients get safe health care and that it’s also the best health care they can get. So it’s more than just us.”
Towers says advocating for patients “needs to go beyond the walls of where you’re providing your care. Everyone should see themselves as someone who does advocate for their patients in this way.”
This is why, even when the odds seem to be against you and you have to make repeated attempts to get legislation passed, “you don’t give up,” Lewis says. “You just keep building relationships with those in power, and then those relationships will hold in the long run for you.”