Hemophilia is a rare disorder that makes it hard for blood to clot, causing unusually easy and prolonged bleeding. Its treatments can be expensive, leading to unwanted financial stress.
How much your hemophilia treatment costswill depend on how severe your condition is, your insurance coverage, and more.
Understanding which resources are available to you can help you manage your finances and potentially lessen the financial impact of living with the condition.
The cost of hemophilia treatment
Hemophilia treatmentcan be very expensive, especially for more severe cases.
The main treatment, factor replacement therapy, or FRT, replaces missing blood-clotting proteins to prevent excessive bleeding. On average, this therapy costs about $300,000 per year, though it can reach more than a million dollars for people who develop an immune response to the treatment.
Novel therapies can cost even more. A certain single-dose gene therapy for hemophilia B has a price tag of $3.5 million, while a special antibody treatment for hemophilia A costs about $482,000 for the first year and $448,000 thereafter for maintenance.
Not all treatments are this expensive. Some mild to moderate cases of hemophilia A can be treated with medications costing between $60 and $117 per dose, depending on the type of health insurancecoverage you have. However, while some therapies are more affordable, only your doctor can determine which will work best for you and your specific condition.
Other supportive treatments, such as physical therapy, may also be needed. The costs of these therapies depend on where you live, the medical facility you use, the therapist you see, and your insurance.
Planning your finances
Planning your finances carefully can help you manage your medical costsand reduce financial concerns.
First, try to understand which costs you will have to cover. Your doctor can help you figure out how much your treatments will be. Remember to also account for doctor’s visits, possible hospitalizations, and any other expenses specific to your diagnosis.
Next, think about your insurance and hemophilia drug coverage. If you already have health insurance, look up its terms and check what it covers. If it doesn’t cover enough or you don’t have insurance, research your options.
Ask whether your doctor can connect you to an insurance case manager or financial counselor who can help you choose a health insurance plan with coverage for hemophilia. Many hospitals and medical centers also offer financial advice services.
You may also want to look into other forms of financial aid for hemophilia, such as programs from nonprofits, pharmaceutical companies, and other organizations.
Health insurance
Navigating health insurance policies can feel overwhelming because there are so many rules and steps to understand. Learning key terms and strategies can help you get the care you need, and determine what is covered under your plan.
In the U.S., there are two main types of health insurance: private and public. Private insurance is either through an employer-sponsored plan if you are employed, or through a plan you buy on your own.
Public insurance is provided by the government through programs like Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP). Benefits through Veterans Affairs (VA) are also available to certain individuals.
Medicare is primarily for people ages 65 and older, as well as those under 65 with certain health conditions or disabilities.
Medicaid is a program for people with low incomes, and each state has its own rules on who qualifies.
CHIP provides low-cost coverage for children whose families make too much money to qualify for Medicaid but still require assistance.
The VA offers healthcare benefits to eligible veterans.
It’s also important to understand some key terms when looking into insurance for hemophilia.
Insurance premiums are the regular fees you pay for insurance, usually each month.
Copays are the set amount you pay for services such as doctor visits. These are typically paid at the time of service, and can vary depending on the provider.
Deductibles are the amounts you must pay for covered services in a given year before your insurance starts paying.
Prior authorizations require your doctor to submit a request for the insurance company to approve a treatment before the insurer may pay for it.
Formularies are lists of drugs covered by your insurance plan.
Handling appeals
At some point, your insurance company may deny a claim, but you have the right to appeal that decision. Make sure to follow the appeals process and meet the deadlines established by the insurance company.
If your appeal is denied, you may be eligible for an external review done by an independent organization. In some cases, you can file an appeal and a request for the review at the same time, especially if you need a treatment quickly.
Be sure to check with your insurer and your state’s health department to learn about the rules and deadlines for external reviews, as these can vary.
You might also want to talk to a health insurance attorney for advice before starting the appeals process. Having a professional help you with an appeal can make a difference in the outcome.
As difficult as it can be, try to not get discouraged by denials, appeals, or external reviews. Persistence matters when you are fighting for your rights.
Assistance programs
Managing hemophilia treatment costscan affect your mental health. It can be stressful to try to cover the high cost of hemophilia medicationwhile you are dealing with symptoms like chronic pain and bleeding from minor cuts and scrapes.
Fortunately, there are patient assistance programs provided by charities and advocacy organizations, as well as other hemophilia resources, which can lessen the financial impact of the disease.
Nonprofit and advocacy organizations
Some organizations and patient advocacy groups have programs that can help you cover costs related to living with hemophilia.
Hope Charities offers several assistance programs, including one that provides as much as $1,500 for families in financial crisis and another that pays for insurance premiums.
The Colburn-Keenan Foundation offers awards of up to $3,000 annually for urgent needs, such as unexpected medical expenses.
The Coalition for Hemophilia B can help cover the living expenses of people with hemophilia B who are currently unemployed because they or their child with the disease has been hospitalized for a long time.
The PAN Foundation and The Assistance Fund can also help pay for hemophilia medications, though there may be waitlists for both programs.
Other sources of financial assistance
Pharmaceutical companies and state programs provide other means of financial assistance for hemophilia treatment.
Some pharmaceutical companies offer copay assistance or free medication for approved treatments. For more information, ask your doctor or contact the companies directly. If you are a U.S. resident, you also can visit the National Bleeding Disorders Foundation website.
Many states across the U.S. also have State Pharmacy Assistance Programs to help with prescription costs. Some states, like Texas, even offer programs specifically for people with hemophilia to help cover RFT costs or insurance premiums.
Crowdfunding platforms like GoFundMe and Kickstarter are other options for generating treatment funding.
You can also ask your doctor about clinical trials, where you may be able to try new treatments while saving money. Websites like the Hemophilia Federation of America and ClinicalTrials.gov are good places to explore such opportunities.
Finally, connecting with others who understand what you’re going through can help you manage financial stress. Joining a hemophilia supportgroup, like the Facebook group for Hemophilia News Today, can connect you with others who can share words of advice, comfort, and wisdom.
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 other 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.
