bloody expensive

For links and more information on factor assistance programs click on the Bloody Good Helper Page.

Financial and Insurance Issues (Information taken from the NHF website)


For individuals with bleeding disorders, and especially those with hemophilia, treatment can be a tremendously heavy financial burden. In fact, the treatment of hemophilia ranks among the most expensive chronic diseases in the United States. New technology has led to remarkable advances in improving the safety of new blood products, but these technologies have come at ever-increasing costs.

It is difficult to separate these cost increases from the overall cost increase in health care nationwide; however, research and development for many of these specialized products come with a huge price tag. Current factor concentrates are among the most costly therapies in the world, with a total annual cost per person ranging from $60,000 to $150,000. Complications such as major surgery, undergoing immune tolerance for an inhibitor, HIV/AIDS and/or hepatitis treatments, can increase these costs exponentially.

The state of insurance reimbursement today is constantly changing to meet this competitive environment. Patients and medical professionals alike are finding the system difficult to manage, complex and often confusing. While organizations and treatment professionals can educate people to better understand insurance, it ultimately falls on individuals to manage their own health care reimbursement.

As a result, it has become vitally important for consumers to be well-informed about finance, reimbursement and healthcare issues. Consumers should understand their insurance policies and ask specific questions about drug coverage, drug costs, lifetime caps and exclusionary riders. People should not wait until a time of crisis before learning the rules of their health insurance policy. They can contact their state department of insurance to find out what programs are available in the event of job loss or in case they become uninsurable.

The social worker or financial reimbursement specialist at a local hemophilia treatment center may also be able to help. Call HANDI to request information about specific insurance issues or referral options for health insurance.

HANDI staff members are available Monday through Friday, 9am to 5:30pm EST, to answer your requests. Call us at 1-800-42HANDI or send us an email at handi@hemophilia.org. Requests can also be faxed to (212) 328-3799.