Living with any chronic illness comes with a financial burden. Hemophilia, in particular, is extremely rare and extremely expensive. What follows is a summary of the expenses, insurance, and savings that I’ve encountered in my journey with bleeding disorders.

Expenses

Most years, I’m sure to hit the $7,000+ deductible on my health insurance plan and have expenses that go well beyond that amount. According to the National Hemophilia Association, “The average annual cost of clotting factor therapies for a person with severe hemophilia is roughly $300,000. A person with an inhibitor (an immune response to replacement clotting factor) usually has expenses over a million dollars a year.”

I once had over $100,000 worth of medicines in my closet in preparation for major surgery. I have hemophilia type B and von Willebrand disease (VWD). Both are mild, but having more than one bleeding disorder means I bleed more than someone with one mild disorder. In 2022, one dose of my two medications will put me over my $7,800 deductible.

A 2021 study estimated the total adult lifetime costs per patient with severe and moderate hemophilia B were over $20,000,000. It’s easy to understand how most people need help to afford the burdens associated with most bleeding disorders.

Insurance

I’m self-employed. It allows me a flexible schedule, which I need to deal with medical issues. I can also choose a health insurance plan that best suits my needs instead of one determined by an employer.

Selecting the proper plan includes several variables. Not all plans cover my hemophilia treatment center (HTC) and my medications. Choosing the wrong plan can be a costly mistake.

I have a health savings account (HSA) plan purchased through healthcare.gov. Mathematically, a plan with a high deductible (bronze) is less expensive than a platinum, gold, or silver plan if I know I’ll hit my deductible. An HSA allows me to put pre-tax money away and withdraw it tax-free, as long as I use the money for qualified medical expenses.

Many years ago, I accidentally chose a plan that didn’t cover my hematologist. My new hematologist didn’t specialize in bleeding disorders and inadvertently prescribed intranasal DDAVP (desmopressin acetate) instead of the more potent form of the drug, Stimate (desmopressin acetate nasal spray), typically used for VWD.

Luckily, an article on the topic of Stimate versus DDAVP was in one of the newsletters sent from my HTC. I showed my new hematologist the article, and he switched the prescription. I always made sure my insurance covered my hematologist and medications from that point forward.

Social workers save the day

Several programs have helped me keep my health expenses under control. Federally funded HTCs provide valuable resources, including access to a social worker. Mine has helped me apply for savings cards from the manufacturers of my expensive medications.

My social worker also helped me get grants from the Pan Foundation. The grants help to cover my health insurance premiums, medication costs, and travel expenses. According to its website, the mission of the Pan Foundation is to “help underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.”

This year the Pan Foundation added support for people with von Willebrand disease. I greatly appreciate the extra financial support.