Our Struggle for Prescription Drug Coverage – 2019 Survey Results

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Did you know? Coverage and cost barriers prevent 40% of people with IH from taking the medication prescribed by the doctor. And almost 72% of people with IH have had their prescribed medications initially denied by their insurance company. Your responses to our 2019 IH Prescription Drug Insurance Challenges survey reveal this, and much more!

On the cost side, one third of people with IH find affording their medications somewhat difficult or very difficult.

Discount programs (coupons, co-pay cards, manufacturer programs) are helping 24% of people with IH afford their medications. Of those using discount programs, over half (58.7%) say they would not have been able to fill the prescription if they didn’t have the discount.

Unfortunately, discount programs do not help everyone. Even when an insurance company covers a drug, 30% of people with IH have chosen not to fill a prescription because the out of pocket costs were too high. Over half of the people making this difficult decision (57.6%) were facing monthly out of pocket costs of over $250.

Insurance company denials are affecting even more people with IH than cost issues. In the past two years, 71.8% of people with IH have been told that their insurance would not cover a drug prescribed by their doctor. Those who chose to appeal were successful only about half the time. One third never started the appeals process.

Another common insurance tactic is to require you to take a cheaper drug before granting coverage for a more expensive drug. In the past two years 36.9% of people with IH have experienced this practice, called step therapy or fail first. Even after complying with the insurance company’s practice and failing to find relief from the cheaper drug, 38.1% never obtain coverage for the drug prescribed by their doctor.

In addition to answering the survey questions, 146 people shared their personal stories. While some had positive stories to tell about winning appeals or finding their medications for a lower cost, many stories were about bureaucratic delays or outright denials causing temporary or permanent breaks in treatment. Although very few people taking the survey reported that they had lost their insurance coverage altogether, several people expressed their fear that in the next few years, life changes may put them in this exact situation.

So what’s next? Using the ideas and information gathered in this survey, the Hypersomnia Foundation is designing a web page with information on the appeals process, programs for prescription access and affordability, and filing for disability. We are currently gathering example appeal letters written by both doctors and patients. If you have successfully appealed and are willing to share the letters from your case, please scan and email them to . (If we use your letter, all personal and identifying information will be removed.) We are also building a list of peer-reviewed journal articles that can be used in an appeal to demonstrate the safety and efficacy of using particular medications to treat IH. If you have journal articles that worked for you, please email them to .

Unfortunately, there is only so much that appeals and programs can do. Significant improvement in healthcare will only happen when we change the systems and policies that determine who gets which treatments, and at what price. Across the U.S., both the federal and state levels of government are currently debating these very issues. As our IH community is particularly hard hit by the problems in the healthcare industry today, our stories are the ones that our elected representatives need to hear before they cast their votes. At the end of the survey, 76 people signed up to join the Hypersomnia Foundation’s legislative advocacy team. Many of these people are the very same ones who shared their personal stories of struggle. If you missed the survey and want to sign up to advocate for IH with your elected representatives, please email .

The lack of FDA-approved medications for IH is the single most important factor contributing to prescription drug access issues. This problem can only be solved by research, and research requires funding. The Hypersomnia Foundation presented its first research award in June, but we know that it will take many more awards and research studies to discover effective treatments for our disease. To the 60% of the IH community currently able to access and afford medications, we ask for your help. Please consider setting up a monthly donation today, so that we can work towards a day when people with IH do not have to choose between buying food and taking their medicine.

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