Patient Groups Voice Support of Help Ensure Lower Patient Copays Act

Bipartisan Legislation Eliminates Misleading Insurer Practices and Protects Financially
Vulnerable Patients

WASHINGTON, D.C. December 2, 2021 More than 140 groups representing patients with serious and chronic conditions this week sent a
letter to House Representatives Donald McEachin (DVA) and Rodney Davis (RIL) voicing support of their recent introduction of H.R. 5801, the Help Ensure Lower Patient Copays Act (HELP Copays Act). The legislation, which included seven additional cosponsors from both sides of the aisle, is a twopart solution that helps ensure patients can cover their outofpocket costs and access needed medications.

The letter, which was spearheaded by the All Copays Count Coalition, points out that peopleliving with serious, chronic health conditions often face multiple administrative barriers to the therapies they need and, once approved, they face skyrocketing deductibles and steep costsharing. With no other options, many patients turn to charitable or manufacturer copay assistance to afford their medication outofpocket costs. But now, insurers are implementing programs that undermine copay assistance and many patients are faced with unexpected bills of thousands of dollars.

Health plan policies called copay accumulator adjustments no longer count financial assistance toward the patient’s annual deductibles or their outofpocket maximum. In addition, a loophole in the Affordable Care Act (ACA) allows many employersponsored health plans to deem certain critical and lifesaving prescription drugs as “nonessential,” which significantly increases outofpocket costs for patients. The HELP Copays Act eliminates barriers to care by:

Requiring health plans to count the value of copay assistance toward patient costsharing requirements
Closing an ACA loophole that allows insurers to classify certain medications as “nonessential” to avoid outofpocket maximums

These practices target the most financially vulnerable patients and erode coverage for preexisting conditions,” said National Hemophilia Foundation Senior Director of Payer Relations Kollet Koulianos. If enacted, this legislation would bring muchneeded relief by ensuring that all paymentswhether they come directly from the patient or with the help of copay assistancecounts towards patient outofpocket responsibility.

“We cannot allow health plans to unfairly shift costs onto the most vulnerable patients those with serious and chronic conditions and those who can least afford it,” said The AIDS Institute Deputy Executive Director Rachel Klein. We look forward to further partnering with Congress and other stakeholder groups to ensure this bipartisan, commonsense legislation becomes law.

Policies that protect patient access to medications continue to hold bipartisan support and 12 states and Puerto Rico have already taken legislative action to limit copay accumulator adjustment policies.

Additionally, patient advocacy groups are calling for the Centers for Medicare & Medicaid Services (CMS) to fully reverse previous rulemaking in its Notice of Benefit and Payment Parameters for 2022 (NBPP) that resulted in more patients being impacted by these harmful practices. Likewise, Representatives McEachin, Davis, and more than 50 otherlawmakers encouraged President Biden this past March to reverse the previous administration’s policy in the forthcoming NBPP.

The full text of the letter is available here.

About the All Copays Count Coalition
The All Copays Count Coalition (ACCC) includes the AIDS Institute, the Arthritis Foundation, the Cancer Policy Institute/Cancer Support Community, the National Hemophilia Foundation, the National Multiple Sclerosis Society and more than 60 other groups serving the interests of patients with chronic and serious health conditions that rely on copay assistance in various forms to make medically necessary drug treatments affordable. The coalition provides information about the harmful effects of pricing schemes, known as “copay accumulators and maximizers,” on access to prescription drugs for people with chronic and serious health conditions.

Additional statements from Coalition members:

“Data shows that when patients can’t afford their outofpocket costs they often abandon their therapy, which can lead to severe health consequences. It is critically important that patients know exactly what to expect when they reach the pharmacy counter and have the ability to remain on their medication. This legislation will give patients peace of mind that their copay assistance will count towards their costsharing obligations.”
Anna Hyde, Vice President of Advocacy and Access, Arthritis Foundation

“We applaud Representatives McEachin and Davis for leading a bipartisan effort to protect vulnerable patients with complex, chronic conditions from high, unaffordable copays that prevent timely access to necessary, and often lifesaving, medications. The HELP Copays Act is the right solution to ensure patients’ coverage is meaningful and enables them to obtain the medicines they need.”
Kim Czubaruk, Senior Director of Policy and Advocacy, Cancer Support Community

“Seventy percent of people with multiple sclerosis have relied on financial assistance to support the outofpocket costs associated with the medications they need. We can’t allow barriers like copay accumulator programs to prevent people with MS and other health conditions from getting the medicines they need.”
Kim Calder, Senior Health Policy Director, National Multiple Sclerosis Society

“Copay accumulators reverse the longterm benefits of copay assistance programs. They are unfair to the most financially vulnerable patients, who rely on these programs to afford their lifesaving medications and treatments. IDF and the primary immunodeficiency community call on Congress to enact the HELP Copays Act and ban a practice that needlessly targets chronically ill individuals.”
Kathryn Stephens, Interim CEO, Immune Deficiency Foundation

“Copay accumulator programs from insurance companies disproportionately affect those who are the sickest among us. Ensuring that copay assistance is counted toward the deductible and outofpocket maximum will ensure that patients receive financial relief immediately and protecting essential health benefits ensures that individuals living with autoimmune disease and other chronic diseases aren’t treated differently just because they live with a chronic disease. On behalf of the millions of patients living with autoimmune disease, we applaud this bipartisan bill that addresses out-of-pocket costs and protects essential health benefits for patients during a time that financial security and health is paramount.”
– Molly Murray, President & CEO, Autoimmune Association

“Patients with HIV, hepatitis, and so many other health conditions rely on copay assistance to afford their drugs. Health care is already expensive and when insurers add additional barriers and costs, such as not counting copay assistance towards a patient’s deductible, patients’ costs significantly increase, jeopardizing medication adherence and their health. We are pleased that Congress, in a bipartisan fashion, is addressing these cruel policies, often buried deep in plan documents, and urge swift adoption of the McEachin-Davis “HELP Copays Act.’’
– Carl Schmid, Executive Director, HIV+Hepatitis Policy Institute

“Co-pay accumulator programs require people who are seriously ill and economically vulnerable to make devastating trade-offs to afford their medications. We commend this bipartisan effort and encourage Congress to end these harmful insurance policies swiftly.”
– Kevin L. Hagan, President and CEO, PAN Foundation

“As an organization led by individuals dealing with lupus and other complex medical conditions who know firsthand the challenges faced by patients when trying to afford their essential disease-modifying therapies, we are thrilled that Representative McEachin and Representative David have introduced the bipartisan HELP Copays Act and commend them for standing with patients by ensuring access to vital life-improving and lifesaving treatments.”
– Kathleen A. Arntsen, President & CEO, Lupus and Allied Diseases Association

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