Voices Across America

My Patient Story

Darla S. Bell

State: Texas
Congressional District: TX03

Diseases

Rare Disease

Issues and Challenges

Darla S. Bell has encountered: Rare / Underserved Disease, Copay Accumulator

My Story

Copay Accumulator Programs Are A Major Threat to Patients

My name is Darla S. Bell from Texas, I have a chronic medical condition and am one of the 133 million Americans with a rare or chronic disease. I can speak from personal experience about a major challenge facing patients like me that isn't on the radar of most politicians, pundits and everyday Americans: Health insurers are increasingly forbidding patients from fully accessing copay assistance.

Called "Copay Accumulator Adjustment Programs" (CAAPs), these insurance plans don't allow patients to count the coupons or financial assistance they receive from drug manufacturers toward their deductibles.

Consider my story. I take a specialty medication, which helps prevent disease progression. Needless to say, it's expensive. But it dramatically improves my quality of life. Even with my health insurance (a "bronze" plan from Blue Cross Blue Shield of Texas), my costs are high. My deductible is $9,150 and my monthly premium is $800. That exceeds $18,000 a year, a significant percentage of my annual income.

My situation is not unique. According to the Kaiser Family Foundation, the average health-insurance deductible for individuals with employer-provided coverage has risen by 400 percent since 2006. About half of privately insured Americans now have high deductible plans -- twice as many as at the beginning of the decade.

To help offset this cost, many patients like me receive what's known as copay assistance in the form of coupons or financial assistance from drug manufacturers. This makes each copay less expensive. But more importantly, it helps patients reach their annual deductible more quickly at which point health insurance covers the remaining healthcare costs for the year.

According to research from Stanford University, over one-quarter of the prescriptions filled for my chronic medical condition and more than half of rheumatoid arthritis prescriptions are purchased with the help of copay coupons. The healthcare consultancy IMSQuintiles estimates that their use has roughly doubled since 2013 as deductibles have skyrocketed.

In 2019, though, things changed. At the beginning of the year, my online insurance patient portal originally showed my copay financial assistance counting towards my deductible. Yet when I logged back into the portal one month later, the information had changed to show the copay assistance had been reversed. After countless and exhaustive efforts to get an explanation, a representative from the specialty pharmacy Alliance RX confirmed that Blue Cross Blue Shield of Texas had indeed adopted a copay accumulator adjustment program, leaving me responsible for the full deductible.

Virtually unheard of a couple of years ago, the National Business Group on Health estimates that copay accumulator plans will be adopted by about half of employer-based plans this year and next.

It's easy to understand why insurers are adopting copay accumulator programs. They allow insurers to get paid twice, once by the drug manufacturers' coupons or financial assistance and then again by the patients, effectively doubling their deductible revenues. Of course, that's not their stated reason for this shift. They claim that forcing patients to bear their full deductible burden will make them more cost-conscious, so they'll seek out cheaper medications. Vivian Ho, a healthcare economist at Rice University, claims coupons "encourage overutilization of high-priced drugs."

But this argument ignores that for many drugs, including specialty medications, no cheaper alternatives exist. According to research out of USC, of the top 200 drugs, 90 use coupons. Among these, 71 have no generic equivalent.

The only cheaper option for patients like me is not taking medication at all. According to a recent study, patients subject to copay accumulator programs filled autoimmune prescriptions at a 25 percent lower rate and discontinued their treatments altogether at a four times higher rate than their non-copay accumulator counterparts.

While a handful of states have outlawed copay accumulator programs, this major healthcare issue has yet to gain widespread traction in policy circles. I encourage other affected patients, policymakers and everyday Americans to educate themselves on this practice and speak-up however they can about this and other major healthcare issues they're facing. It's our voices that should be the ones driving the healthcare debate.

My Motivation and Inspiration

To ban the practice of Copay Accumulator Adjustment Programs and all anti-patient practices by the payers.

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