Advocates Call on Lawmakers To Help Patients Afford Their Medication

Demand Passage of Legislation To Ensure That All Copays Count

May 3, 2022


Advocates Call on Lawmakers To Help Patients Afford Their Medication

 Demand Passage of Legislation To Ensure That All Copays Count

Albany, NY- May 3, 2022- More than 65 patient and provider advocacy groups were joined by State legislators at the Capitol today for a press conference calling for passage of bills to help patients afford their medication.

Many New Yorkers face hardship from medical bills, including prescription drug costs. Copay assistance programs can give New Yorkers, especially those suffering with chronic illnesses, access to the lifesaving medication they may otherwise not be able to afford. However, health insurance companies and pharmacy benefit managers (PBMs) are using a new benefit design called copay accumulator adjustments that makes it more challenging for patients to afford their medication.

Assembly and Senate Health Committee Chairs Richard Gottfried and Senator Gustavo Rivera are sponsoring legislation (A1741/S5299) requiring health insurers and PBMs to count all payments made by patients toward their deductibles and other out-of-pocket cost requirements.

The State Senate is poised to act on the bill that already passed the Senate last year and we urge the Assembly to do the same.

“Health insurance company rules are confusing, arbitrary, and abusive toward patients, especially those with the most medical need,” said Assembly Member Gottfried.  “Health plans and PBMs are using ‘copay accumulators’ to stick New Yorkers with more costs, even when patients should be protected by caps on out-of-pocket expenses.  I commend ACS CAN and all the advocates for their hard work on this issue, thank Senator Rivera for advancing the bill, and urge the Assembly to pass it as soon as possible.”

“The recently adopted copay accumulator model is allowing health plans and PBMs to further exploit patients by shifting the cost of medication onto them,” said State Senator Gustavo Rivera. “New Yorkers, especially the most vulnerable among us, are already struggling to afford their medication and it is unacceptable that health plans and PBMs are actively working to improve their bottom line at the expense of New Yorkers and their health. I am proud to join Assemblymember Gottfried in pushing for the passage of our bill to ensure New Yorker's copay assistance counts towards New Yorkers’ deductible, providing them necessary financial relief as they look to improve their health." 

Under the insurance practice of copay accumulator adjustments, when a patient receives and uses any form of 3rd party copay assistance, a health plan sweeps the payment from the copay assistance for their own purposes and does not allow it to be applied to a patient's deductible or out-of-pocket maximum.  This results in patients facing large out-of-pocket costs or “copay surprise”. Seventy percent of patients abandon their prescription medications at the counter when out-of-pocket costs reach $250 or more.  This also shifts the burden of healthcare costs back to the primary care provider or emergency room when a patient becomes unstable.

Many patients battling cancer, arthritis, blood disorders, multiple sclerosis, mental illness, HIV/AIDS, and other diseases or chronic illnesses struggle to pay for care and rely on copay assistance programs to afford their medication.

According to a 2022 ACS CAN study of cancer patients and survivors, most cancer patients and survivors say they were unprepared for the cost of care, and most reported making major changes to their lifestyle or finances as a result. Cost concerns weigh heavily: 73% are concerned about their ability to pay current or future costs of their care and 70% are worried about incurring medical debt due to their cancer care and treatment.

The cost burden associated with cancer care is not felt equally. Survey results showed that African Americans were more likely to have medical debt associated with their cancer care, and more likely to have been contacted by collections regarding their debt.

A 2020 National Psoriasis Foundation survey of people with psoriasis and psoriatic arthritis found that 80.3% taking biologics with commercial insurance rely on copay assistance and 71% with incomes between $50,000 and $99,999 would be unable to afford their treatment without copay assistance.

New data suggest that Black individuals have almost a 50% increased risk of MS when compared to white individuals in the U.S. Further, they are more likely to experience more relapses, are more likely to experience greater disability, and have a greater risk of progressing to require ambulatory assistance earlier, in addition to being more likely to develop involvement of the optic nerves and spinal cord (optic-spinal MS) and inflammation of the spinal cord (transverse myelitis).[i] Additionally, Black women have reported that their healthcare providers were reluctant to consider an MS diagnosis and felt their MS diagnosis was delayed[ii].

Copay accumulator adjustment programs leave many patients with potentially thousands of dollars in unexpected medical costs in the middle of the plan year and unable to afford their care. Patients not able to afford their medications face worsening health, disease progression, and the potential for significantly increased health care costs.

A1741/S5299 will provide immediate relief and assistance to New York’s most vulnerable patients by ensuring that all copay assistance counts toward deductibles and by creating more predictability as patients face high out-of-pocket costs for their prescription medicines. The legislation currently has 39 cosponsors in the Assembly and 11 in the Senate.

To date, 14 states have already stopped this practice by passing legislation that requires copay assistance to count toward patients’ out-of-pocket cost requirements — Arkansas, Arizona, Connecticut, Georgia, Illinois, Kentucky, Louisiana, North Carolina, Oklahoma, Tennessee, Virginia, Washington, West Virginia, Maine and Puerto Rico.

“Cancer patients and survivors are increasingly going into cancer-related medical debt,” said Michael Davoli, Senior Government Relations Director, New York at the American Cancer Society Cancer Action Network. “Battling cancer is hard enough and cancer patients should not be punished for accessing financial assistance programs to pay for lifesaving medication.”

"As family physicians, we care for patients young and old throughout their lives," said NYS Academy of Family Physicians Past-President Jun David, MD.  "It is heartbreaking to see patients not only learn they have been diagnosed with a serious, even life-threatening illness, but then to be unable to afford the recommended medications to treat it.  Copay assistance programs provide a lifeline for patients, and we strongly support S5299/A1741 to ensure that health plans and PBMs cannot prevent patients from benefiting from such assistance programs to count toward their out-of-pocket costs."

“With the implementation of copay accumulator programs, people with multiple sclerosis (MS) are experiencing higher cost burdens as they struggle to meet expenses during their deductible period,” said Jennifer Muthig, Senior Director, Advocacy & Policy for the National Multiple Sclerosis Society. “The median cost of MS disease modifying therapies is nearly $94,000, with nine now priced at over $100,000 a year. Access to affordable, high-quality health care is essential for New Yorkers with MS to live their best lives.”

“This important legislation would provide our patients on chronic medication therapies with significant financial relief from the often enormous out of pocket deductibles health insurers require patients to meet,” said Dr. Joseph Sellers, MD, FAAP, FACP, President of the Medical Society of the State of New York (MSSNY).  “MSSNY is grateful to Senator Gustavo Rivera and Assemblymember Richard N. Gottfried for their leadership and for championing this important bill and urges the Legislature to help enact this bill into law."

"As is the case with most chronic illness, managing a mental illness often requires medication and, in many cases, people living with a psychiatric disorder need to take multiple medications. Frequently, the high-cost of medication presents a barrier to access even for those with insurance coverage. Price reduction instruments have helped increase access by reducing the financial burden for many who require these life-saving medications. I am one of the many people living with a mental illness who have benefitted from receiving copay assistance to help pay for a new medication. This support was essential to my recovery. NAMI-NYS is extremely disturbed that some insurance providers accept these price-reduction instruments, yet still charge consumers the full out-of-pocket co-pay cost. NAMI-NYS stands firm in our opposition to this harmful practice. We are grateful to Senator Rivera and Assemblyman Gottfried for their leadership in addressing this issue, so others like me can get the help they need to live a full and healthy life."- Matthew Shapiro, Director of Public Affairs, NAMI-NYS 

“When proper treatment becomes unaffordable for people with bleeding disorders, they may be forced to skip or ration their medication, which can result in serious complications like internal bleeding, joint damage, or worse,” said Jessica Graham, Coalition Coordinator, New York State Bleeding Disorders Coalition. “We must ensure that third-party assistance can actually assist those who are eligible for it - otherwise we could be putting their health and their future in jeopardy.”

“Many of those living with ALS and their families already face a crushing financial burden trying to afford their care which can be more than $200,000 a year. Accumulator policies have made this problem even worse,” said Kristen Cocoman, President & CEO of The ALS Association Greater New York Chapter and Elizabeth Krisanda, Executive Director, The ALS Association Upstate New York Chapter. “They are an unconscionable, thinly veiled effort by insurance companies to reap higher profits at the expense of some of the most vulnerable patients. We think legislation, like Assembly Bill 1741 and Senate Bill 5299 are important public policies measures and we are grateful to New York state lawmakers for introducing these bills.”

“As an organization led by individuals dealing with lupus and other complex medical conditions who know firsthand the challenges faced when trying to afford our essential disease-modifying treatments,” said Kathleen A. Arntsen, President & CEO of Lupus and Allied Diseases Association, “we urge the New York State Senate to stand with patients by supporting S5299 to ensure all copays count.”

“Millions of patients across the country rely on cost-sharing assistance to afford their medications,” said Ashira Vantrees, Staff Attorney for Aimed Alliance. “However, accumulator programs deprive patients of the full benefits of this assistance as accumulators prohibit this assistance from counting towards a patient’s deductibles and maximum out-of-pocket limits. Copay accumulator reform is needed to ensure patients receive the full benefits of cost-sharing assistance.”

“We are grateful to Assemblymember Richard Gottfried and Senator Gustavo Rivera for their leadership in sponsoring A1741/S5299 and their dedication to making sure patients in New York continue to receive full benefit from this vital patient assistance program,” said Angelica Katz, Regional Manager, State Policy & Advocacy for Susan G. Komen. “Our coalition of dedicated patient advocates knows firsthand the difference copay assistance can make and, for Komen, it is critical that breast cancer patients be able to access their lifesaving treatments.”

"As we continue to navigate the uncertainties of the ongoing pandemic, it is critical for patients to have affordable access to the medications they need," says Brian Nyquist, Executive Director of the Infusion Access Foundation and CEO of the National Infusion Center Association. "If patients are barred from using third party copay assistance of any kind, we can only expect a large number of patients will forgo their treatments - leading to disease complications and hospitalizations." 


S5299/A1741 is supported by the following organizations:

  • Aimed Alliance
  • Allergy & Asthma Network
  • Alliance for Patient Access
  • American Association of Clinical Urologists
  • American Cancer Society Cancer Action Network
  • American College of Rheumatology
  • American Diabetes Association
  • American Kidney Fund
  • American Liver Foundation
  • American Urological Association
  • Arthritis Foundation
  • Arthur Ashe Institute for Urban Health
  • Bleeding Disorders Advocacy Network
  • Bleeding Disorders Association of Northeastern New York
  • Bleeding Disorders Association of the Southern Tier
  • Cancer Support Community
  • Center for Independence of the Disabled, New York
  • Coalition for Hemophilia B
  • Coalition of State Rheumatology Organizations
  • Color of Crohn's and Chronic Illness
  • Empire State Hematology & Oncology Society
  • Epilepsy Foundation of Northeastern NY
  • Global Healthy Living Foundation
  • GMHC
  • Hemophilia Association of New York
  • Hemophilia Federation of America
  • HIV+Hepatitis Policy Institute
  • Immune Deficiency Foundation
  • Infusion Access Foundation
  • GMHC
  • Lupus and Allied Diseases Association, Inc.
  • Mary Gooley Treatment Center
  • Medical Society of the State of New York
  • Mended Hearts
  • Mental Health Association in New York State
  • Multiple Sclerosis Association of America
  • NAACP New York State Conference
  • National Alliance on Mental Illness - NYS
  • National Hemophilia Foundation
  • National Hispanic Medical Association
  • National Infusion Center Association
  • National Multiple Sclerosis Society
  • National Organization for Rare Disorders
  • National Psoriasis Foundation
  • New York Blood Center
  • New York Chapter American College of Physicians Services, Inc.
  • New York City Hemophilia Chapter
  • New York Oncology Hematology
  • New York State Academy of Family Physicians
  • New York State American Academy of Pediatrics, Chapters 1, 2 & 3
  • New York State Association for Rural Health
  • New York State Bleeding Disorders Coalition
  • New York State Osteopathic Medical Society
  • New York State Rheumatology Society
  • New York State Society of Anesthesiologists
  • New York State Society of Orthopaedic Surgeons
  • New York State Urological Society
  • Northeast Kidney Foundation
  • Patients Rising Now
  • Pharmacists Society State of New York
  • Rheumatology Nurses Society
  • Roswell Park Comprehensive Cancer Center
  • Sickle Cell Thalassemia Patients Network
  • Sobre a Vivir – A Will To Live
  • Susan G. Komen
  • The AIDS Institute
  • The ALS Association
  • Western New York Blood Care
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