Madelaine (Mattie) Feldman, MD

As 2021 winds down, I reflect on the achievements the rheumatology community has had in the realm of advocacy throughout the year. And there were many: Seven states signed accumulator program bans into law, five states reformed the use of step therapy protocols, Texas passed an innovative “gold carding” law to reduce the burden of prior authorization, and West Virginia passed a rebate pass-through law to directly assist patients with high out-of-pocket costs – the first of its kind in the nation.

Of course, the close of another year also means gearing up for the year ahead. The majority of state legislatures are getting ready to open legislative sessions in the New Year. This means a year of new opportunities and new challenges. As a community, there are some key areas rheumatology will need to focus on during the course of the upcoming year as policy makers return to the business of policy making.

Many in the rheumatology community are aware that the buy and bill acquisition system has come under threat in recent years, mainly from payer mandates to use the alternative white bagging model. In some cases, payers have gone as far as to mandate the practice of “brown bagging,” or home infusion. These practices can endanger patient safety and overall quality of care. A study led by Matthew Baker, MD, of Stanford (Calif.) University found that biologic infusions administered at home, compared with those administered at a facility, were associated with increased adverse events requiring escalation of care; specifically, home infusions were associated with 25% increased odds of ED or hospital admission on the same or next day after infusion, compared with facility infusions, and 28% increased odds of permanent discontinuation of the biologic after emergency department or hospital admission. Additionally, site-of-care research by Paul Fronstin, PhD, at Employee Benefit Research Institute clearly shows that in-office infusion with physician supervision is far more cost effective than hospital and, in some cases, home infusion as well.

Further, the metastasis of these payer mandates is likely to severely limit availability of and access to care. It is unclear whether outpatient infusion, especially in private rheumatology practices, will prove sustainable in a world of white bagging. The net result of an expansion of the white-bagging requirements may well be broad access challenges that inconvenience patients deeply and irresponsibly.

The expansion of these mandates has not come without pushback, and rheumatologists should be prepared to advocate for policy that prohibits payers from mandating the use of white bagging, brown bagging, and home infusion. It is abundantly clear that arguments of safety and cost effectiveness are sufficient grounds for policy makers to curtail the mandatory use of these practices.

Similar to white bagging, another key issue in the year ahead is formulary construction based on the rebate system and proposed policies to address its attendant problems. Propagated by pharmacy benefit managers (PBMs), the rebate-based, or kickback, system of formulary construction often rewards higher-priced drugs with preferred placement regardless of whether they are the best and most affordable medications for our patients. A few states are beginning to address the affordability issue by mandating that the rebate/kickback acquired by the PBM be passed back to the patient at the point of sale. West Virginia passed a first-of-its-kind law to ensure that patients who generate drug rebates benefit from them by requiring that their cost shares are reduced by an amount equivalent to the rebate received by a health plan. This policy does not get at the root of the formulary construction problem, but if it is adopted more broadly across the country, it will deliver direct relief to patients who are struggling with out-of-pocket costs associated with prescription drugs. I anticipate that this will be a prominent issue nationwide during the upcoming year with opportunity for rheumatologists to lend their voices.

Many of the rheumatology community’s longstanding issues persist, and while progress has been made, more work remains to be done. Whether it’s accumulator programs, prior authorization, nonmedical switching, or step therapy, there will be opportunities in almost every state to engage in improving our ability to provide excellent care to our patients.

We tend to be motivated into action when one of these individual issues appear in our own state’s legislature; however, consistency of engagement is also important. While it is important to talk to your legislators when you need them to vote a certain way on a certain bill, scheduling a meeting with them or sending them a message detailing some of the issues that the rheumatology community faces before legislatures return in full swing is equally important to establish the relationship.

By making “rheum for action” now, you’ll have more impact when legislation relevant to our daily work does appear in the state legislatures. You can find your state representatives at the Coalition for State Rheumatology Organization’s Action Center.

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

As 2021 winds down, I reflect on the achievements the rheumatology community has had in the realm of advocacy throughout the year. And there were many: Seven states signed accumulator program bans into law, five states reformed the use of step therapy protocols, Texas passed an innovative “gold carding” law to reduce the burden of prior authorization, and West Virginia passed a rebate pass-through law to directly assist patients with high out-of-pocket costs – the first of its kind in the nation.

Of course, the close of another year also means gearing up for the year ahead. The majority of state legislatures are getting ready to open legislative sessions in the New Year. This means a year of new opportunities and new challenges. As a community, there are some key areas rheumatology will need to focus on during the course of the upcoming year as policy makers return to the business of policy making.

Many in the rheumatology community are aware that the buy and bill acquisition system has come under threat in recent years, mainly from payer mandates to use the alternative white bagging model. In some cases, payers have gone as far as to mandate the practice of “brown bagging,” or home infusion. These practices can endanger patient safety and overall quality of care. A study led by Matthew Baker, MD, of Stanford (Calif.) University found that biologic infusions administered at home, compared with those administered at a facility, were associated with increased adverse events requiring escalation of care; specifically, home infusions were associated with 25% increased odds of ED or hospital admission on the same or next day after infusion, compared with facility infusions, and 28% increased odds of permanent discontinuation of the biologic after emergency department or hospital admission. Additionally, site-of-care research by Paul Fronstin, PhD, at Employee Benefit Research Institute clearly shows that in-office infusion with physician supervision is far more cost effective than hospital and, in some cases, home infusion as well.

Further, the metastasis of these payer mandates is likely to severely limit availability of and access to care. It is unclear whether outpatient infusion, especially in private rheumatology practices, will prove sustainable in a world of white bagging. The net result of an expansion of the white-bagging requirements may well be broad access challenges that inconvenience patients deeply and irresponsibly.

The expansion of these mandates has not come without pushback, and rheumatologists should be prepared to advocate for policy that prohibits payers from mandating the use of white bagging, brown bagging, and home infusion. It is abundantly clear that arguments of safety and cost effectiveness are sufficient grounds for policy makers to curtail the mandatory use of these practices.

Similar to white bagging, another key issue in the year ahead is formulary construction based on the rebate system and proposed policies to address its attendant problems. Propagated by pharmacy benefit managers (PBMs), the rebate-based, or kickback, system of formulary construction often rewards higher-priced drugs with preferred placement regardless of whether they are the best and most affordable medications for our patients. A few states are beginning to address the affordability issue by mandating that the rebate/kickback acquired by the PBM be passed back to the patient at the point of sale. West Virginia passed a first-of-its-kind law to ensure that patients who generate drug rebates benefit from them by requiring that their cost shares are reduced by an amount equivalent to the rebate received by a health plan. This policy does not get at the root of the formulary construction problem, but if it is adopted more broadly across the country, it will deliver direct relief to patients who are struggling with out-of-pocket costs associated with prescription drugs. I anticipate that this will be a prominent issue nationwide during the upcoming year with opportunity for rheumatologists to lend their voices.

Many of the rheumatology community’s longstanding issues persist, and while progress has been made, more work remains to be done. Whether it’s accumulator programs, prior authorization, nonmedical switching, or step therapy, there will be opportunities in almost every state to engage in improving our ability to provide excellent care to our patients.

We tend to be motivated into action when one of these individual issues appear in our own state’s legislature; however, consistency of engagement is also important. While it is important to talk to your legislators when you need them to vote a certain way on a certain bill, scheduling a meeting with them or sending them a message detailing some of the issues that the rheumatology community faces before legislatures return in full swing is equally important to establish the relationship.

By making “rheum for action” now, you’ll have more impact when legislation relevant to our daily work does appear in the state legislatures. You can find your state representatives at the Coalition for State Rheumatology Organization’s Action Center.

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

As 2021 winds down, I reflect on the achievements the rheumatology community has had in the realm of advocacy throughout the year. And there were many: Seven states signed accumulator program bans into law, five states reformed the use of step therapy protocols, Texas passed an innovative “gold carding” law to reduce the burden of prior authorization, and West Virginia passed a rebate pass-through law to directly assist patients with high out-of-pocket costs – the first of its kind in the nation.

Of course, the close of another year also means gearing up for the year ahead. The majority of state legislatures are getting ready to open legislative sessions in the New Year. This means a year of new opportunities and new challenges. As a community, there are some key areas rheumatology will need to focus on during the course of the upcoming year as policy makers return to the business of policy making.

Many in the rheumatology community are aware that the buy and bill acquisition system has come under threat in recent years, mainly from payer mandates to use the alternative white bagging model. In some cases, payers have gone as far as to mandate the practice of “brown bagging,” or home infusion. These practices can endanger patient safety and overall quality of care. A study led by Matthew Baker, MD, of Stanford (Calif.) University found that biologic infusions administered at home, compared with those administered at a facility, were associated with increased adverse events requiring escalation of care; specifically, home infusions were associated with 25% increased odds of ED or hospital admission on the same or next day after infusion, compared with facility infusions, and 28% increased odds of permanent discontinuation of the biologic after emergency department or hospital admission. Additionally, site-of-care research by Paul Fronstin, PhD, at Employee Benefit Research Institute clearly shows that in-office infusion with physician supervision is far more cost effective than hospital and, in some cases, home infusion as well.

Further, the metastasis of these payer mandates is likely to severely limit availability of and access to care. It is unclear whether outpatient infusion, especially in private rheumatology practices, will prove sustainable in a world of white bagging. The net result of an expansion of the white-bagging requirements may well be broad access challenges that inconvenience patients deeply and irresponsibly.

The expansion of these mandates has not come without pushback, and rheumatologists should be prepared to advocate for policy that prohibits payers from mandating the use of white bagging, brown bagging, and home infusion. It is abundantly clear that arguments of safety and cost effectiveness are sufficient grounds for policy makers to curtail the mandatory use of these practices.

Similar to white bagging, another key issue in the year ahead is formulary construction based on the rebate system and proposed policies to address its attendant problems. Propagated by pharmacy benefit managers (PBMs), the rebate-based, or kickback, system of formulary construction often rewards higher-priced drugs with preferred placement regardless of whether they are the best and most affordable medications for our patients. A few states are beginning to address the affordability issue by mandating that the rebate/kickback acquired by the PBM be passed back to the patient at the point of sale. West Virginia passed a first-of-its-kind law to ensure that patients who generate drug rebates benefit from them by requiring that their cost shares are reduced by an amount equivalent to the rebate received by a health plan. This policy does not get at the root of the formulary construction problem, but if it is adopted more broadly across the country, it will deliver direct relief to patients who are struggling with out-of-pocket costs associated with prescription drugs. I anticipate that this will be a prominent issue nationwide during the upcoming year with opportunity for rheumatologists to lend their voices.

Many of the rheumatology community’s longstanding issues persist, and while progress has been made, more work remains to be done. Whether it’s accumulator programs, prior authorization, nonmedical switching, or step therapy, there will be opportunities in almost every state to engage in improving our ability to provide excellent care to our patients.

We tend to be motivated into action when one of these individual issues appear in our own state’s legislature; however, consistency of engagement is also important. While it is important to talk to your legislators when you need them to vote a certain way on a certain bill, scheduling a meeting with them or sending them a message detailing some of the issues that the rheumatology community faces before legislatures return in full swing is equally important to establish the relationship.

By making “rheum for action” now, you’ll have more impact when legislation relevant to our daily work does appear in the state legislatures. You can find your state representatives at the Coalition for State Rheumatology Organization’s Action Center.

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

There is a dangerous trend in our country in which employers, seeking to reduce health plan costs they pay, enter into agreements with small third-party administrators that “carve out” specialty drug benefits from their self-funded health insurance plan. What employers are not told is that these spending reductions are accomplished by risking the health of their employees. It is the self-funded businesses that are being preyed upon by these administrators because there is a lot of money to be made by carving out the specialty drugs in their self-funded health plan.

Let’s start with a little primer on “fully insured” versus “self-funded” health plans. As a small business owner, I understand the need to make sure that expenses don’t outpace revenue if I want to keep my doors open. One of the largest expenses for any business is health insurance. My private rheumatology practice uses a fully insured health plan. In a fully insured plan, the insurer is the party taking the financial risk. We pay the premiums, and the insurance company pays the bills after the deductible is met. It may cost more in premiums than a self-funded plan, but if an employee has an accident or severe illness, our practice is not responsible for the cost of care.

On the other hand, large and small businesses that are self-funded cover the health costs of their employees themselves. These businesses will hire a third-party administrator to pay the bills out of an account that is supplied with money from the business owner. Looking at the insurance card of your patient is one way to tell if they are covered by a fully insured or self-funded plan. If the insurance card says the plan is “administered by” the insurer or “administrative services only,” it is most likely a self-funded plan. If their insurance card states “underwritten by” the insurer on the card then it is likely a fully insured plan. This becomes important because self-funded plans are not subject to the jurisdiction of state laws such as utilization management reform. These state laws are preempted from applying to self-funded plans by the Employee Retirement Income Security Act of 1974. The Rutledge v. Pharmaceutical Care Management Association Supreme Court case took up the question of whether certain state laws impermissibly applied or were connected to self-funded plans. The ruling in favor of Rutledge opens the door that certain state legislation may one day apply to self-funded plans.
 

Specialty drug benefit carve outs are not in best interests of employees, employers

This piece is not about Rutledge but about the small third-party administrators that are convincing self-funded businesses to let them “carve out” specialty drug benefits from the larger administrator of the plan by promising huge savings in the employer’s specialty drug spending. Two such companies that have come to the attention of the Coalition of State Rheumatology Organizations are Vivio Health and Archimedes. CSRO has received numerous complaints from rheumatologists regarding interference from these two entities with their clinical decision making and disregard for standard of care.

Vivio’s website reveals a disturbing approach to cost reduction. The website states that Vivio profiles physicians through ProPublica and Open Payments to determine if they are prescribing for the right reason and not for self-interest. This serves as an attempt to set up mistrust of the physician by the employer. Vivio’s website also states that the Food and Drug Administration has declining standards for approval of drugs, and consequently many approved drugs should be considered “experimental.” They say that business owners should not have to pay for “experimental” treatments. Through conversation with Vivio, it appears they believe that oncologists could be replaced by a primary care physician with the right algorithm.

Many of Vivio’s egregious behaviors are enumerated in our letter to Vivio: outrageous nonmedical switches, mandatory biologic tapering, and site of care changes. In all of the complaints that we received, Vivio attempted to switch patients to the same infusible medication, Renflexis, and also mandated white bagging, which means the payer has a specialty pharmacy ship a patient’s medication directly to the physician’s office for administration. This switch was made regardless of the mechanism of action or route of administration of the drug that had stabilized the patient. Peer-to-peer reviews with a retired radiologist led to routinely denied appeals and would even force the patient to a different site of care if the rheumatologist refused the new treatment or the mandated white bagging.

Our letter resulted in two conversations with Vivio. Vivio insisted that it was using American College of Rheumatology guidelines and comparisons between drug studies to make these decisions. The company stated that patients can be switched to any drug that has the same ACR 20, 50, and 70 response criteria outcomes as the drug that they are presently taking, even though these sorts of comparisons of results across completely different studies are invalid for a number of reasons, including because they do not have the same patient populations, protocols, and inclusion/exclusion criteria. These are dangerous policies and thus far we have not been able to find any rheumatologists who have gone along with these demands.

Companies such as Vivio are spreading, and employers are unaware that their policies are only paying lip service to “individualized care” while maintaining an approach to patient care that is focused only on cost cutting. Indeed, Archimedes represents one such metastasis. Their practices are similar to those of Vivio and of which CSRO has received complaints. Archimedes has similarly attempted to mandate white-bagging for the enrollees it manages and switch stable patients for nonmedical reasons to an entirely different molecule and mechanism of action.

Business owners do not understand the harm that these policies can cause their employees. This harm increases downstream medical spending as a result of loss of control of disease activity.

This is a call to action for all advocates and advocacy groups to get in the room with employer/business groups and explain how these third-party administrators, carving out specialty drug benefits, can ultimately cause physical harm to employees and increase monetary cost to the employer in the long run. Rheumatology as a specialty needs to educate employers and work out ways to save money for them and, at the same time, maintain excellence in care for their employees. CSRO has a letter it used successfully with the human resources department of Edward Jones to effect a change in its policies on this matter, which you are welcome to use to craft your own to businesses.

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

There is a dangerous trend in our country in which employers, seeking to reduce health plan costs they pay, enter into agreements with small third-party administrators that “carve out” specialty drug benefits from their self-funded health insurance plan. What employers are not told is that these spending reductions are accomplished by risking the health of their employees. It is the self-funded businesses that are being preyed upon by these administrators because there is a lot of money to be made by carving out the specialty drugs in their self-funded health plan.

Let’s start with a little primer on “fully insured” versus “self-funded” health plans. As a small business owner, I understand the need to make sure that expenses don’t outpace revenue if I want to keep my doors open. One of the largest expenses for any business is health insurance. My private rheumatology practice uses a fully insured health plan. In a fully insured plan, the insurer is the party taking the financial risk. We pay the premiums, and the insurance company pays the bills after the deductible is met. It may cost more in premiums than a self-funded plan, but if an employee has an accident or severe illness, our practice is not responsible for the cost of care.

On the other hand, large and small businesses that are self-funded cover the health costs of their employees themselves. These businesses will hire a third-party administrator to pay the bills out of an account that is supplied with money from the business owner. Looking at the insurance card of your patient is one way to tell if they are covered by a fully insured or self-funded plan. If the insurance card says the plan is “administered by” the insurer or “administrative services only,” it is most likely a self-funded plan. If their insurance card states “underwritten by” the insurer on the card then it is likely a fully insured plan. This becomes important because self-funded plans are not subject to the jurisdiction of state laws such as utilization management reform. These state laws are preempted from applying to self-funded plans by the Employee Retirement Income Security Act of 1974. The Rutledge v. Pharmaceutical Care Management Association Supreme Court case took up the question of whether certain state laws impermissibly applied or were connected to self-funded plans. The ruling in favor of Rutledge opens the door that certain state legislation may one day apply to self-funded plans.
 

Specialty drug benefit carve outs are not in best interests of employees, employers

This piece is not about Rutledge but about the small third-party administrators that are convincing self-funded businesses to let them “carve out” specialty drug benefits from the larger administrator of the plan by promising huge savings in the employer’s specialty drug spending. Two such companies that have come to the attention of the Coalition of State Rheumatology Organizations are Vivio Health and Archimedes. CSRO has received numerous complaints from rheumatologists regarding interference from these two entities with their clinical decision making and disregard for standard of care.

Vivio’s website reveals a disturbing approach to cost reduction. The website states that Vivio profiles physicians through ProPublica and Open Payments to determine if they are prescribing for the right reason and not for self-interest. This serves as an attempt to set up mistrust of the physician by the employer. Vivio’s website also states that the Food and Drug Administration has declining standards for approval of drugs, and consequently many approved drugs should be considered “experimental.” They say that business owners should not have to pay for “experimental” treatments. Through conversation with Vivio, it appears they believe that oncologists could be replaced by a primary care physician with the right algorithm.

Many of Vivio’s egregious behaviors are enumerated in our letter to Vivio: outrageous nonmedical switches, mandatory biologic tapering, and site of care changes. In all of the complaints that we received, Vivio attempted to switch patients to the same infusible medication, Renflexis, and also mandated white bagging, which means the payer has a specialty pharmacy ship a patient’s medication directly to the physician’s office for administration. This switch was made regardless of the mechanism of action or route of administration of the drug that had stabilized the patient. Peer-to-peer reviews with a retired radiologist led to routinely denied appeals and would even force the patient to a different site of care if the rheumatologist refused the new treatment or the mandated white bagging.

Our letter resulted in two conversations with Vivio. Vivio insisted that it was using American College of Rheumatology guidelines and comparisons between drug studies to make these decisions. The company stated that patients can be switched to any drug that has the same ACR 20, 50, and 70 response criteria outcomes as the drug that they are presently taking, even though these sorts of comparisons of results across completely different studies are invalid for a number of reasons, including because they do not have the same patient populations, protocols, and inclusion/exclusion criteria. These are dangerous policies and thus far we have not been able to find any rheumatologists who have gone along with these demands.

Companies such as Vivio are spreading, and employers are unaware that their policies are only paying lip service to “individualized care” while maintaining an approach to patient care that is focused only on cost cutting. Indeed, Archimedes represents one such metastasis. Their practices are similar to those of Vivio and of which CSRO has received complaints. Archimedes has similarly attempted to mandate white-bagging for the enrollees it manages and switch stable patients for nonmedical reasons to an entirely different molecule and mechanism of action.

Business owners do not understand the harm that these policies can cause their employees. This harm increases downstream medical spending as a result of loss of control of disease activity.

This is a call to action for all advocates and advocacy groups to get in the room with employer/business groups and explain how these third-party administrators, carving out specialty drug benefits, can ultimately cause physical harm to employees and increase monetary cost to the employer in the long run. Rheumatology as a specialty needs to educate employers and work out ways to save money for them and, at the same time, maintain excellence in care for their employees. CSRO has a letter it used successfully with the human resources department of Edward Jones to effect a change in its policies on this matter, which you are welcome to use to craft your own to businesses.

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

There is a dangerous trend in our country in which employers, seeking to reduce health plan costs they pay, enter into agreements with small third-party administrators that “carve out” specialty drug benefits from their self-funded health insurance plan. What employers are not told is that these spending reductions are accomplished by risking the health of their employees. It is the self-funded businesses that are being preyed upon by these administrators because there is a lot of money to be made by carving out the specialty drugs in their self-funded health plan.

Let’s start with a little primer on “fully insured” versus “self-funded” health plans. As a small business owner, I understand the need to make sure that expenses don’t outpace revenue if I want to keep my doors open. One of the largest expenses for any business is health insurance. My private rheumatology practice uses a fully insured health plan. In a fully insured plan, the insurer is the party taking the financial risk. We pay the premiums, and the insurance company pays the bills after the deductible is met. It may cost more in premiums than a self-funded plan, but if an employee has an accident or severe illness, our practice is not responsible for the cost of care.

On the other hand, large and small businesses that are self-funded cover the health costs of their employees themselves. These businesses will hire a third-party administrator to pay the bills out of an account that is supplied with money from the business owner. Looking at the insurance card of your patient is one way to tell if they are covered by a fully insured or self-funded plan. If the insurance card says the plan is “administered by” the insurer or “administrative services only,” it is most likely a self-funded plan. If their insurance card states “underwritten by” the insurer on the card then it is likely a fully insured plan. This becomes important because self-funded plans are not subject to the jurisdiction of state laws such as utilization management reform. These state laws are preempted from applying to self-funded plans by the Employee Retirement Income Security Act of 1974. The Rutledge v. Pharmaceutical Care Management Association Supreme Court case took up the question of whether certain state laws impermissibly applied or were connected to self-funded plans. The ruling in favor of Rutledge opens the door that certain state legislation may one day apply to self-funded plans.
 

Specialty drug benefit carve outs are not in best interests of employees, employers

This piece is not about Rutledge but about the small third-party administrators that are convincing self-funded businesses to let them “carve out” specialty drug benefits from the larger administrator of the plan by promising huge savings in the employer’s specialty drug spending. Two such companies that have come to the attention of the Coalition of State Rheumatology Organizations are Vivio Health and Archimedes. CSRO has received numerous complaints from rheumatologists regarding interference from these two entities with their clinical decision making and disregard for standard of care.

Vivio’s website reveals a disturbing approach to cost reduction. The website states that Vivio profiles physicians through ProPublica and Open Payments to determine if they are prescribing for the right reason and not for self-interest. This serves as an attempt to set up mistrust of the physician by the employer. Vivio’s website also states that the Food and Drug Administration has declining standards for approval of drugs, and consequently many approved drugs should be considered “experimental.” They say that business owners should not have to pay for “experimental” treatments. Through conversation with Vivio, it appears they believe that oncologists could be replaced by a primary care physician with the right algorithm.

Many of Vivio’s egregious behaviors are enumerated in our letter to Vivio: outrageous nonmedical switches, mandatory biologic tapering, and site of care changes. In all of the complaints that we received, Vivio attempted to switch patients to the same infusible medication, Renflexis, and also mandated white bagging, which means the payer has a specialty pharmacy ship a patient’s medication directly to the physician’s office for administration. This switch was made regardless of the mechanism of action or route of administration of the drug that had stabilized the patient. Peer-to-peer reviews with a retired radiologist led to routinely denied appeals and would even force the patient to a different site of care if the rheumatologist refused the new treatment or the mandated white bagging.

Our letter resulted in two conversations with Vivio. Vivio insisted that it was using American College of Rheumatology guidelines and comparisons between drug studies to make these decisions. The company stated that patients can be switched to any drug that has the same ACR 20, 50, and 70 response criteria outcomes as the drug that they are presently taking, even though these sorts of comparisons of results across completely different studies are invalid for a number of reasons, including because they do not have the same patient populations, protocols, and inclusion/exclusion criteria. These are dangerous policies and thus far we have not been able to find any rheumatologists who have gone along with these demands.

Companies such as Vivio are spreading, and employers are unaware that their policies are only paying lip service to “individualized care” while maintaining an approach to patient care that is focused only on cost cutting. Indeed, Archimedes represents one such metastasis. Their practices are similar to those of Vivio and of which CSRO has received complaints. Archimedes has similarly attempted to mandate white-bagging for the enrollees it manages and switch stable patients for nonmedical reasons to an entirely different molecule and mechanism of action.

Business owners do not understand the harm that these policies can cause their employees. This harm increases downstream medical spending as a result of loss of control of disease activity.

This is a call to action for all advocates and advocacy groups to get in the room with employer/business groups and explain how these third-party administrators, carving out specialty drug benefits, can ultimately cause physical harm to employees and increase monetary cost to the employer in the long run. Rheumatology as a specialty needs to educate employers and work out ways to save money for them and, at the same time, maintain excellence in care for their employees. CSRO has a letter it used successfully with the human resources department of Edward Jones to effect a change in its policies on this matter, which you are welcome to use to craft your own to businesses.

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

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

It does seem that we are constantly fighting against something:

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

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

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

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

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

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

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

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

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

It does seem that we are constantly fighting against something:

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

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

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

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

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

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

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

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

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

It does seem that we are constantly fighting against something:

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

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

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

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

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

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

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

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

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

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

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

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

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

The four Ps of advocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

The four Ps of advocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

The four Ps of advocacy

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

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

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

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

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

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

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

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