“Speaking out is empowering.”

However, biologic treatments can be very expensive even if you have medical insurance. Copay assistance, also called manufacturer copay cards, can be used to lower the cost of a biologic treatment. A 2020 NPF survey of people with psoriatic disease found that 80% of people on commercial insurance rely on copay assistance to afford their biologic treatment.

Bahr used copay assistance to afford his biologic treatment for over a decade, his skin remaining clear through all that time. But five years ago, he got a notification from his insurance company that they would no longer count his copay assistance as part of what he owed the insurance company. “They would still accept the payments from the [copay] assistance program, but they wouldn't apply them in a way that would reduce my deductible or copay,” says Bahr.

Bahr didn’t know it at the time, but he had just encountered something known as a “Copay Accumulator Adjustment Program.” Insurers use these copay accumulators to collect copay assistance without counting it towards the patient’s cost-sharing, essentially rendering copay assistance useless for patients who rely on it to help afford their medication.

When his insurance company first initiated the copay accumulator, Bahr recalls that “Suddenly I went from paying a nominal amount, $5 or $10 a month, to being responsible for the whole deductible and copay.” It did not take long for the change to hit his pocketbook.  “Come January, I got hit with a $1,600 bill for the medication, which represented the entirety of my deductible, plus then I was on the line for monthly payment for the drug, which under the insurance company’s terms was 50% of the medication’s cost up to $600 a month,” says Bahr. “So needless to say, that's a big financial shock.”

While he was dealing with a copay accumulator, Bahr had to pull money from his savings each month and cut back on expenses like travel to pay for the prescribed treatment that changed his life. Fortunately, he has since found an insurance plan that has a lower out-of-pocket maximum and no deductible.

While Bahr is currently able to afford his biologic treatment despite the insurance hurdles, he is aware that he is one of the lucky ones. “I [advocate] not just for myself, because I'm fortunate to have had good could health care coverage through most of my career and my retirement,” says Bahr, “But a lot of people don't have that luxury, so I want to be a voice for them in their journey in dealing with psoriatic disease.”

This will not be the first time Bahr travels to Washington, D.C. for Capitol Hill Day, he has participated in more than ten Capitol Hill Days since 2005. “I care about this issue because people should be able to receive the treatment that they and their doctors agree is best for their condition and not have to worry about the financial impact,” says Bahr. “It shouldn't be a choice between good health and money.”

Bahr and the other volunteers joining him in Washington, D.C. are doing incredible work to advocate for patient protections, but convincing Congress to implement these reforms will require all hands on deck. Please join Bahr in advocating for an end to copay accumulators by emailing your legislators about cosponsoring the HELP Copays Act, which would ensure that copay assistance is counted towards a patient’s cost-sharing obligations. Bahr will also be asking legislators to support psoriatic disease public health funding and cosponsor the Safe Step Act.

“You have to be an advocate for yourself when it comes to your health, you can't just let circumstances dictate everything that is going to happen to you,” says Bahr. “Speaking out is empowering.”