National Hemophilia Foundation
WASHINGTON, DC—November 2, 2021—The All Copays Count Coalition, which comprises more than 60 groups representing patients with serious and chronic diseases including the Chronic Care Policy Alliance, applauds the introduction of the Help Ensure Lower Patient Copays Act (HELP Copays Act), sponsored by Representatives Donald McEachin (D-VA), Rodney Davis (R-IL), Bonnie Watson Coleman (D-NJ), Bobby Rush (D-IL), Brian Fitzpatrick (R-PA), Yvette Clarke (D-NY), Marc Veasey (D-TX), Buddy Carter (R-GA), and Barbara Lee (D-CA).
The legislation is a two-part solution that eliminates barriers to treatment for some of the most vulnerable patients—those who live with serious, complex chronic illness—ensuring that they can afford the necessary and life-saving medications prescribed by their doctors. The bipartisan HELP Copays Act requires health plans to count the value of copay assistance toward patient cost-sharing requirements. This would bring much-needed relief to financially vulnerable patients by ensuring that all payments—whether they come directly out of a patient’s pocket or with the help of copay assistance—count towards their out-of-pocket costs.
“Health plans have changed the rules on how they count copay assistance programs and have found ways to limit protections for coverage of medicines. This legislation recognizes the bipartisan consensus that people with pre-existing conditions must be protected from insurance practices that target and discriminate against them,” said National Hemophilia Foundation Senior Director of Payer Relations Kollet Koulianos. “The HELP Copays Act is a bipartisan solution that will help already vulnerable patients afford medically necessary prescription drugs.”
“High out-of-pocket costs for health care are always challenging for patients to pay, but the economic devastation caused by the pandemic has stretched too many families to the breaking point. And it has shown how important it is for people with underlying conditions to be able to get the treatment they need to stay healthy,” said The AIDS Institute Deputy Executive Director Rachel Klein. “This bipartisan legislation is needed to stop insurers from charging vulnerable patients twice for the same medication and forcing people to forego needed medication or other necessities to pay for the medicine they or their family members need.”
People living with serious, chronic health conditions often face multiple barriers to the therapies they need to treat their conditions, such as administrative hurdles like prior authorization and step therapy that limit access to specialty medications. And once approved, patients face skyrocketing deductibles and steep cost-sharing. With no other options to afford the medicine they need, many patients turn to charitable or manufacturer copay assistance to afford their drugs.
But now, many are faced with unexpected bills of thousands of dollars because their insurance plan will not count the copay assistance they get toward their annual deductible or out-of-pocket maximum. A recent survey conducted by the National Hemophilia Foundation, in conjunction with the Arthritis Foundation, Autoimmune Association and the American Kidney Fund, found that 69% of those who depend on such assistance make less than $40,000 a year, leaving the most financially vulnerable patients at risk of losing access to necessary health care.
In addition, a loophole under the Affordable Care Act allows many employer health plans to deem certain categories of prescription drugs as “non-essential,” even when they are life-saving or necessary for people with serious pre-existing and chronic conditions. When a covered drug is deemed “non-essential,” the insurer will not count any cost-sharing toward the patient’s deductible and out-of-pocket maximum—allowing big companies to avoid paying for critical care for patients who need it most.
Together, these practices undermine coverage for pre-existing conditions, hurt patient access to medicines, decrease drug adherence, and even cost our health care system more money.
Representatives McEachin, Davis, and more than 50 other lawmakers encouraged President Biden this past March to protect individuals from copay accumulator policies that hit both brand and generic treatments by asking the Centers for Medicare & Medicaid Services to reverse the previous administration’s Notice of Benefit and Payment Parameters.
The All Copays Count Coalition remains grateful for bipartisan support of policies that protect patient access to affordable medications and for the 12 states and Puerto Rico for taking legislative action to protect vulnerable people from these misleading insurance policies.
About the All Copays Count Coalition
The All Copays Count Coalition (ACCC) is comprised of members serving the interests of beneficiaries 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.
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Additional statements from Coalition members:
“Data shows that when patients can’t afford their out-of-pocket 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 co-pay assistance will count towards their cost-sharing 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 life-saving, 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 out-of-pocket 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 accumulator programs from insurance companies disproportionately affect those who are the sickest among us. Ensuring that copay assistance is counted toward the deductible and out-of-pocket 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. Healthcare 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