Navigating the financial challenges of bleeding disorders

As a nonprofit pauses its assistance, 5 programs still help those with hemophilia.

by: Jennifer Lynne

A person like me, with bleeding disorders like hemophilia and von Willebrand disease, can incur staggering expenses. The cost of medications alone can soar into the thousands of dollars per dose, and multiple doses are frequently required to manage bleeding episodes effectively. In 2019, I faced the daunting reality of having more than $200,000 worth of medication stored in my refrigerator as I anticipated surgery.

Recently, the Hemophilia Federation of America (HFA), one of the most patient-centric of the nonprofit organizations devoted to hemophilia, announced some financial difficulties. Consequently, they’ve had to temporarily pause programs that provided direct aid to those with hemophilia and other bleeding disorders.

Many in the community relied on HFA’s programs, so following are five alternate avenues for finding aid.

Patient assistance programs

Many pharmaceutical companies offer patient assistance programs to provide financial help to people who cannot afford or need help with their medication costs. These programs may offer free or discounted medications, copay assistance, or reimbursement for out-of-pocket expenses related to hemophilia treatment.

Hope for Hemophilia

I met Jonathan James, president and chief executive, and other folks at Hope for Hemophilia at Genentech’s recent Rare Blood Disease Summit in San Francisco.

Founded by James, who has the disease, Hope for Hemophilia assists families in crisis because of bleeding disorders. According to its website, the nonprofit offers financial aid for housing, transportation, utilities, medical costs, and more, providing more than $1.2 million in assistance.

PAN Foundation

The PAN Foundation dedicates itself to helping the underinsured and uninsured access necessary medications. It provides financial assistance covering copays, deductibles, and coinsurance costs associated with prescription medications to support those with hemophilia and von Willebrand disease.

The PAN Foundation has been a lifesaver for me. It’s provided me with financial assistance to help cover the costs of my medications for hemophilia B and von Willebrand disease. PAN has also helped me with premium assistance for my health insurance and even a grant for travel expenses related to my bleeding disorders.

Hemophilia treatment centers

Federally funded hemophilia treatment centers (HTCs) often have social workers or financial counselors who can guide and assist in navigating financial resources and support programs. They may assist with insurance enrollment, accessing patient assistance programs, and identifying other sources of financial help.

A social worker at my HTC helped me enroll in patient assistant programs and apply for my PAN foundation grants.

Local hemophilia chapters

Many local hemophilia chapters affiliated with national organizations like the National Bleeding Disorders Foundation may offer financial assistance programs to individuals and families in need. These programs may provide emergency financial assistance, grants for medical expenses, or other financial support. The Florida chapter, for instance, covers the cost of my Medic Alert bracelet.

By leveraging these resources, people with hemophilia can access assistance to help alleviate the financial burden associated with managing their condition, ensuring that they can access the care and support they need to live healthy and fulfilling lives.

Source: Hemophilia News Today, Hemophilia and Me, February 2024

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.