Copay accumulators can hurt quality of life
I never imagined my son would be the topic of a speech by our former Congressman Pete Olson on the floor of the U.S. House of Representatives or that he would be leading a conversation with Texas lawmakers via Zoom. You see, Hank is just 9 years old. But he has a rare condition — Hemophilia A — and his blood doesn’t clot at all. Hank’s health has put him and our entire family in a position to be a voice for Texas patients.
Hank takes a specialty medicine three times a week, which enables him to live a mostly normal life. While contact sports like football are out of the question, he is on a swim team and loves P.E. like any other fourth-grader.
But because of his disorder, he has had to grow up quicker than I would have liked. He’s incredibly knowledgeable about his condition and is not shy talking about hemophilia. This year he’s been able to educate classmates about the disease, while also serving as an advocate for patient-centered legislation that will help people like him better navigate the system and have improved health outcomes.
While I couldn’t foresee my 9-year-old having to explain to Texas lawmakers what it’s like to live with a bleeding disorder, I’m so proud that he’s built the confidence to share his story clearly and eloquently.
Lately, he’s had to learn more health care jargon. It’s a new term called “copay accumulator,” which sounds innocuous until you learn what it really is.
Since Hank was diagnosed at 9 months, we’ve had to become excellent students of the health care system, especially understanding the ins and outs of our insurance plan. We regularly make appointments timed to when we’d met our deductible, leveraging any support we could to keep our out-of-pocket costs low.
One such support is a copay card that helps contribute to the cost of Hank’s medicine. That copay has always counted toward our deductible. That is, until our insurer implemented a “copay accumulator,” which means they kept taking our copay assistance while also asking us to pay the full deductible, essentially double dipping. We know the system well, and this came as a total surprise to us. It was also a surprise to customer service at our insurer — they also thought it was an error at first.
We were very confused and scared. Suddenly, we had a huge bill due that we had not planned on. Fortunately, we were able to pay those out-of-pocket costs. And good thing — Hank can’t go three months without his medicine. He can’t even go three days.
Because of innovations in medicine, kids like Hank can lead happy, productive lives. But without his medication, he’d be in and out of the hospital. He’d have regular bleeds and ultimately need expensive surgeries like joint replacements. He’d go from leading a normal life to being on permanent disability.
We are lucky. But what about those who can’t meet those unexpected costs? We know there are people who must make tough decisions about whether to get the lifechanging medicine their child might need.
That’s why we are telling Hank’s story.
The good news is there are bills in the Texas Legislature this session — Senate Bill 523 by Sen. Dawn Buckingham and House Bill 2668 by Rep. Four Price — that would curb the insurance practice of copay accumulators. Eight other states have passed similar legislation: Arizona, Virginia, West Virginia, Illinois, Georgia, Kentucky Oklahoma and Arkansas.
We urge lawmakers to pass these bills so kids like Hank can focus on growing up — not fighting insurance practices that threaten their quality of life.
Hank’s hemophilia has made him grow up faster. It’s made him more patient. But because of advances in modern medicine, it hasn’t stopped him from living a full life. Copay accumulators are more than just health insurance jargon; they are a damaging practice that could impact my son’s quality of life — and the lives of thousands of Texans like him.