Hemophilia treatment isn’t cheap. Out-of-pocket costs for clotting factor therapies alone can be as much as $300,000 per year. The average person with hemophilia can expect to pay tens of thousands of dollars each month for the ongoing treatment of hemophilia.

In addition, costs can be higher depending on the severity of your condition and how you respond to treatment. If your body develops inhibitors, you’ll need to pay for more replacement clotting factor to ensure that it works. There are also several indirect costs associated with hemophilia care. Some studies say these can range from around $13,000 to $28,000 per year.

Hearing these numbers can be disheartening. However, the decision to treat hemophilia isn’t negotiable. There are strategies to help reduce medical expenses after you get a bill, but it’s not always feasible. Instead, it’s best to try to lower your treatment bills as much as possible before they arrive. Here are five steps you can take to put yourself in a better financial position.

1. Get the Best Possible Insurance Coverage

There are many different insurance plans available, and coverage details often change from year to year. As a result, searching for the best plan can be overwhelming. Fortunately, there are resources that can help people with hemophilia make smart insurance decisions and save money.

You can start by reviewing the National Bleeding Disorders Foundation’s personal health insurance toolkit. Here, you’ll find free worksheets and guides on comparing costs, understanding different plans, and dealing with insurance problems.

Whether you’re choosing a plan through an employer or from the marketplace, take your time to understand your coverage options. Your choice of insurance can make a huge difference in your medical costs throughout the year. If you need extra help to make sense of the plans, contact your nearest hemophilia treatment center (HTC) and ask to meet with a social worker who can offer guidance based on your situation.

Medicaid for Bleeding Disorders

Depending on your income and your age, you may be eligible for Medicaid. According to the National Bleeding Disorders Foundation, about 30 percent of people with bleeding disorders get their health care coverage through Medicaid. You can reach out to your local HTC for help navigating Medicaid. Rules for Medicaid vary by state.

2. Explore Patient Assistance Programs

Various patient assistance programs are available to help people with bleeding disorders cover treatment costs. For instance, Bayer offers a $0 copay program for antihemophilic factor products Kovaltry and Jivi. The program isn’t based on income and may offer up to $20,000 per year in assistance. If more than one person has hemophilia in your household, each person can apply. Bayer also has a program where you can get Kovaltry or Jivi for free for the first month.

CSL Behring offers an index of patient support programs for antihemophilic factor products Afstyla, Humate-P, and Idelvion, as well as the gene therapy etranacogene dezaparvovec-drlb (Hemgenix).

Similar programs are available for:

• Emicizumab-kxwh (Hemlibra)
• Antihemophilic factor/von Willebrand factor complex (Alphanate)
• Coagulation factor IX (Ixinity)

Many companies offer cost-saving programs for their treatments. Contact your drug manufacturer directly to find out if there are any patient assistance programs associated with your specific treatment.

There are also programs that cover things like health insurance premiums, travel costs, infusion expenses, nursing services, and protective gear. The National Bleeding Disorders Foundation has a comprehensive list of programs that could save you money.

If you don’t see a program that can help you now, be sure to check again after a few months or at least yearly. New programs may be introduced, and the rules of existing programs could change to improve your chances of getting assistance.

3. Compare Costs at Different Pharmacies

Not all pharmacies charge the same price for the same drug. Treatment costs can vary based on where you get your prescription filled. That’s why it’s important to research and find out the price of your treatment at different pharmacies. You can use online resources like GoodRx, WellRx, and SingleCare to look up this information from home. These free online tools also come with optional prescription discount cards that might be worth signing up for if your medication qualifies for reduced pricing.

Prices can also vary depending on how you order your medication. It may be more expensive for you to pick your medicine up in the store than to have it mailed in bulk to your home. Ask about different options, compare, and choose the best value.

In addition, many people with rare diseases like hemophilia use specialty pharmacies to fill their prescriptions. There are lots of potential benefits to using a specialty pharmacy, including more individualized care and possible cost savings. Be sure to include specialty pharmacies in your search for the lowest price. Your health care provider should be able to share some options.

4. Stick to Your Treatment Plan

With such high treatment costs, it’s not surprising that some people with hemophilia avoid filling their prescriptions. However, veering off your prescribed treatment plan can end up costing you more money and putting your safety and well-being at risk.

Spontaneous bleeding into the joints leads to progressive joint damage over time. When undertreated, people with hemophilia may develop chronic joint pain, limited mobility, and severe disability. As a result, they aren’t able to work and may need help to care for themselves.

In addition, emergency room visits for preventable bleeding episodes are expensive. A proactive approach to managing your condition can be more cost-effective by reducing these emergency visits. It’s also better for your quality of life. Ultimately, there are no real benefits to gain from shortchanging your hemophilia treatment.

5. Consider Your Long-Term Options

Hemophilia is considered a lifelong condition. It can be tough to think about investing in expensive treatments when you’re just trying to keep up with daily care, but sometimes buying preventive or potentially curative therapies upfront can save you money in the long run.

One study showed that kids with hemophilia A had lower treatment costs when using the preventive therapy Hemlibra. The study followed 92 children with hemophilia A (including 18 participants with an active inhibitor). Researchers tracked treatment costs for the group in the six months before and after starting treatment. The real-world data showed that those on preventive treatment had significantly lower costs ($128,099 after treatment versus $176,720 before treatment), mainly because they had fewer emergency costs.

People with hemophilia B may consider some of the newer gene therapies to help lower their overall treatment costs. Gene therapy is a one-time treatment that provides an opportunity to cure hemophilia. However, these treatments are currently out of reach for most people based on price (around $2 million).

Luckily, several new gene therapies are being developed in clinical trials. Clinical trials provide an opportunity to participate in research and receive free treatment. Ask your hematologist if they know about any clinical trials that could be a good fit for you. You can also search for clinical trials yourself on ClinicalTrials.gov.

Talk With Others Who Understand

MyHemophiliaTeam is the social network for people with hemophilia and their caregivers. On MyHemophiliaTeam, more than 6,600 members come together to ask questions, give advice, and share their stories with others who understand life with hemophilia.

How do you manage the high cost of factor replacement therapy and medical expenses for life-threatening bleeding events? Do you have any strategies to lower the annual cost of certain treatment options? Share your experience in the comments below, or start a conversation by posting on your Activities page.