By Stephanie Hrisca-Kennedy

I vividly remember the day our seven-week-old son, Grayson, was diagnosed with severe hemophilia. The news was both shocking and devastating. As a parent, my first thoughts went to how we would protect our son and keep him safe. Hemophilia is a disorder in which blood does not clot properly. For a person with hemophilia, the smallest bump or cut can be very serious and even life-threatening — and kids are always getting cuts and scrapes. The fear was overwhelming! 

A few years later, with the help of his medications and well-honed safety practices, Grayson is doing well. This doesn't mean that we stop worrying or stop watching every step he takes; we just have coping and safety mechanisms that allow us to move forward with our daily lives. However, this past summer we received another surprise in our fight with hemophilia — a copay accumulator adjustment program. Don't know what that is? Neither did we, but we quickly found out that we had yet another bombshell to face.

Grayson requires medication to help clot his blood and to prevent any spontaneous or injury induced bleeding episodes. His medications are administered both intravenously and by subcutaneous injection, which is a shot just below the skin. He is on a prophylaxis treatment plan meaning that every four weeks he receives his medication. 

These medications come at a very high cost. One month of his medication costs approximately $10,238. Our insurance covers $9,641, leaving us with a monthly copay of $597 each month. Our maximum out-of-pocket cost per Grayson's insurance plan is $6,850, so that’s the annual amount we must pay before our insurance covers 100 percent of his medications. At the time of the insurance notification, Grayson was enrolled in copay assistance programs that helped cover the copay costs.

In July, we received a notice stating that our insurance company was going to put a “copay accumulator adjustment program” in place, which meant that the copay assistance programs we had relied on would no longer be counted toward the maximum out-of-pocket cost. Therefore, we would need to pay the entire maximum out-of-pocket expense on our own. The thought of having to pay close to an extra $7,000 a year to continue Grayson's medications caused us a lot of stress and worry. 

Thankfully, we recently received notice that the two medications Grayson needs fall within a program provided by our insurance which will help cover the remaining costs. We lucked out, but I can't help but think of the many others who aren't so fortunate and don't have access to programs like the one our insurance offers. How are they going to afford their life-saving medications — especially during a time when many people are out of work or experiencing pay cuts?

Unfortunately, copay accumulator adjustment programs are on the rise. According to the Drug Channels Institute, in 2018 only 44 percent of commercial insurance plans contained them. Just three years later, 79 percent of insurance plans contain the language. Further, most of the drugs subject to accumulator adjustment programs do not have generic equivalents. This may lead patients with no other choice than to stop filling their prescriptions. 

Copay accumulator adjustment programs need to be eliminated. Insurance companies should not be allowed to pick and choose which out-of-pocket costs count toward an annual deductible and which ones don't. All copays should be attributed to the maximum out-of-pocket expense. When going through medical treatment of any kind, patients and their families should not have to endure further stressors — they should be able to focus solely on getting and staying healthy.

Stephanie Hrisca-Kennedy lives in Las Vegas and is the proud stay-at-home mom to two boys. Her oldest son has severe Hemophilia A.