by Aine Stevens
Aine Stevens is a 20-year old engineering student at the University of Connecticut and is a patient with CF. She is perusing Civil & Environmental Engineering and loves advocating for the CF community in her spare time.
When I was in the middle of eighth grade, my health trajectory completely changed. I was prescribed Trikafta, a Cystic Fibrosis (CF) Modulator that targets the defect in 90% of CF patients. Before Trikafta, I was battling serious bacterial “superbugs” that decreased my lung function to 70%. I had been through numerous rounds of strong antibiotics to help fight against infections and to support my immune system. I was 12 years old and slowly accepted my fate of being a teenager with a progressive chronic illness. After my first dosage of Trikafta, my whole mindset flipped as I coughed out mucus that had been in my lungs for years. I realized that this was my miracle and a chance for me to be healthy for the rest of my life. Trikafta has dramatically improved my quality of life, taking away fears of my unknown lifespan and giving me hope for a long and healthy life. This hope, however, comes with a price. I take Trikafta along with eight other medications daily, which adds a significant financial burden on me and my family.
The standard annual rate of Trikafta is around $300,000. The pharmaceutical company that produces Trikafta, has created a copay assistance program that reduces this cost by providing a maximum of $20,000 for eligible patients but still requires the patient to be responsible for most of the cost. Many CF patients rely on insurance to cover the cost of Trikafta, in addition to their other medications. When I first started taking Trikafta, our insurance counted this copay assistance towards our deductible and out-of-pocket cost, and the rest of the year we paid $0 for my medications. Without our knowledge our insurance plan was switched to an accumulator plan, which means that our copay assistance program went directly to the insurance company but was not counted towards our deductible or out-of-pocket maximum. Basically, we were required to pay for our deductible twice– once with the copay assistance and the second with our out-of-pocket costs. We now had to pay in full for the rest of my medications, in addition to our coinsurance payment rate. These insurance programs have become increasingly common for patients that rely on high-cost medications. A similar insurance program is called a maximizer plan, which takes copay assistance and spreads it out throughout the year, while still leaving patients responsible for their full deductible and out-of-pocket maximum. Maximizer plans are designed to get the full “use” out of the copay assistance, yet in reality, patients are often hit with a massive insurance bill out of the blue.
Insurance lingo is quite confusing to understand; the best way I can break this down is to compare these programs to college tuition. Let’s say you have just received a $5,000 scholarship and you want to apply it to paying for college this year. Under an accumulator plan, the Bursar’s office would hold that $5,000 for future loans you may have to take out and make you still pay
for your full tuition. Under a maximizer plan, the Bursar’s office would take that $5,000 and pay portions of it off every month, even if you end up paying your full tuition before the end of the year. Often, insurance companies implement these policies because they have declared those medications are not Essential Health Benefits (EHBs), which means they see medications like Trikafta as short term. Even though it is a medication I will be taking for the rest of my life. It is almost as if the Bursar’s office has declared that your classes are not essential to your major, and therefore the scholarship you have been awarded should not count towards your college tuition. You have put effort into both the classes and the scholarship and can’t quite understand why the Bursar’s office declares that your work doesn’t matter. That frustration is a common feeling when it comes to these programs.
These programs are harmful to patients whether the assistance is frontloaded or spread throughout the year; they suffer financially while the insurance companies thrive. Through legislation, there are solutions to put an end to the loopholes that allow for these programs. At the state level, 26 states have banned copay accumulators. It is vital for these bans to be passed within the states so that, regardless of where the patient or the insurance company is, accumulator plans cannot harm the patient financially. The only caveat is that the state bans can only apply to state-regulated plans. At the federal level, the Help Ensure Lower Patient (HELP) Copays Act has been reintroduced to address these programs. The HELP Copays Act’s goal is to eliminate insurance loopholes by ensuring that all payments, whether from the patient or from a drug assistance program, count toward cost-sharing obligations. The act introduces that if an insurance plan covers a drug, it is an Essential Health Benefit. Currently, there are 23 cosponsors on the HELP Copays Act, and it has been in review with the Health, Education, Labor, and Pensions Committee. While progress has advanced with this bill, it is crucial that constituents contact their representatives in support of this bill.
The HELP Copays Act will remove the insurance loopholes, allowing patients to reduce their financial stress and focus on their health. Trikafta is a medication I will be taking for the rest of my life, in addition to eight other necessary medications, so it is crucial for my insurance plan to understand that my medications are essential. In order to maintain the standard of care for chronic illnesses in America, it is vital to reform these insurance practices and pass the HELP Copays Act, so insurance companies are not profiting on struggling communities.
No Comments