Global Healthy Living Foundation


I was only 10 years old the first time I went to the hospital with severe head pain, uncontrollable vomiting, and visual disturbances with complete blindness in my left eye. Driving four hours to Dallas from my home in Abilene was my family’s only option if I wanted to see a pediatric neurologist after being diagnosed with chronic migraine. It was a sacrifice of time, but necessary for my health.

More than 35 years later, managing this illness, several co-morbid conditions, caring for my family, and working is a lot to juggle, physically, emotionally and financially. I pay what I owe, but I was livid when I realized that fine print in my insurance contract was causing me to pay my deductible twice.

For me a migraine attack is so much more than excruciating head pain; it’s also decreased motor skills, nausea and sensitivity to lights, sounds and odors. For two years, I wasn’t allowed to drive due to balance issues. When I finally found a specialty treatment that worked, I was hopeful, but nervous because it was expensive. Enrolling in a charitable patient assistance program offered by my drug’s manufacturer helped me afford the medication that finally helped me feel better.

Unfortunately, the migraine medicine that provided relief suddenly became more expensive because of a policy woven into my insurance contract – a co-pay accumulator program. Co-pay accumulator programs prevent the money provided by third parties from counting toward a patient’s deductible or out-of-pocket maximum. It shifts the payment burden away from insurers to patients’ wallets.

At the pharmacy, I paid for my medicine using my assistance program. I expected those funds to be applied to my deductible, but they weren’t. Instead, my monthly co-pay jumped from $40 to around $350, or as much as a car payment.

When my son was also diagnosed with migraine and needed expensive medications, I stopped taking my medicine for a while to put his health ahead of mine. Why? Because his prescription was slotted into an accumulator program, too. It was incredibly frustrating to be hit with this double payment dilemma twice. Neither of us should have to go without the medicine we need to function, but I couldn’t make the math work to pay for both of us.

People with chronic disease are frequently at risk for being victims of accumulator programs because we often rely on specialty, brand-name medications for which there are no generic or biosimilar options. To that end, patient assistance programs were created to benefit patients, not insurance companies. When a patient uses their copay assistance program to pay for their medication at the pharmacy, then it should be applied to their co-pays, co-insurance or deductibles, as expected. It’s not fair for insurance companies to accept these funds, use them up, and then still expect the patient to keep paying their deductible.

Sixteen states have passed laws mandating that all payments made by patients count toward the patient’s out-of-pocket maximum or deductible. Texas should too!

Insurers oppose these bills, speculating that state insurance premiums will rise at a higher rate for everyone. However, new research from my organization, the Global Healthy Living Foundation, demonstrates that claim isn’t true. Legislation banning accumulator programs has not resulted in increases to state health insurance premiums beyond what has been seen in states without this legislation.

In Texas and the United States, everyone should be able to access the medications that potentially will improve their health and their ability to positively contribute to their family and community. I hope all Texas will support HB 999 and call your local representative to say that people should come before profits.


J.P. Summers grew up in Abilene. She is a patient advocate, community outreach manager with the Global Healthy Living Foundation

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