Hearing a diagnosis of a bleeding disorder or any other chronic condition can be very difficult. It’s important to know that bleeding disorders are manageable and people can lead a full life by taking a few precautions.
Many people experience shock and fear when learning about their own bleeding disorder or finding out that a family member was diagnosed with a bleeding disorder. These feeling are normal and will lessen as you learn, gain experience and feel some control over the situation.
Where do I start?
Find a hematologist in your area – Bleeding disorders are treated by hematologists. In the United States, there are federally funded Hemophilia Treatment Centers (HTC) in almost every state. A list of centers can be found on the Centers for Disease Control website .
Learn about bleeding disorders – There is a wealth of information available online and your physician will teach you about the disorder, the symptoms, how to detect a bleed early, and what to do when you suspect a bleed or when an injury occurs.
Get connected – You are not alone! Even though bleeding disorders are rare, there are other people living with the disorder. THBDF has several events throughout the year that gets together with others with bleeding disorders.
Treatment of a bleeding disorder is very expensive. Factor concentrates are one of the most expensive drugs in the market and even people with good health insurance can be impacted by the financial aspects of managing a bleeding disorder. It is critical for patients and caregivers to have health insurance and understand their financial responsibility.
It is extremely important that people with hemophilia have health insurance. The costs associated with treating a bleeding disorder are very high, so parents of children with hemophilia and people living with the disorder must know their insurance coverage well. The Patient Protection and Affordable Care Act (ACA) has changed many of the rules of health insurance and it hopes to make insurance more affordable and accessible to all individuals. Some parts of the law have already been instituted, including the removal of lifetime caps on insurance policies, and it has made it illegal for insurance companies to deny insurance based on pre-existing conditions. Visit for details on ACA. Patients currently have the following options for health insurance coverage:
Group Health Insurance: Many people have access to group health insurance through their employer. It is important to understand the insurance plans available and to sign up for one of the options as soon as enrollment is possible. People living with hemophilia must become familiar with all aspects of their benefits, out-of-pocket expenses, deductibles, co-insurance amounts, and drug coverage–especially how factor is covered under the policy.
Purchase a policy on the individual market: Currently, only Maine, Massachusetts, New Jersey, New York and Vermont have required insurance companies to sell insurance policies to individuals. All the other states have mandates to require insurers to sell policies to individuals starting in January of 2014. On that date, everyone, regardless of health status or where they live, will be able to purchase an individual health insurance policy.
Enroll in a high risk pool: The new law has set up a Federal Pre-Existing Condition Insurance Plan that is available to people with a pre-existing condition who have been without health insurance for at least 6 months. These high risk insurance pools are expensive, and you need a letter from your doctor indicating you have a bleeding disorder. These types of pools are also available at the state level in some states, but not all. These high risk pools are temporary and designed to help people without health insurance until insurance exchanges are available per the ACA law in 2014. For enrollment information, contact the social worker at your HTC .
Medicaid: Medicaid is available to people with low income and people with disabilities. Visit to learn about the options available to you.
Even a person with “good insurance” may see their finances affected because of the high costs of the treatment of a bleeding disorder. Anyone involved in the care of a person with a bleeding disorder must understand their health insurance policy well and be familiar with the portions that are the patient’s financial responsibility. Insurance policies usually change one time per year. It is the patient’s or caregiver’s responsibility to review how the policy has changed and ensure they budget accordingly to cover co-pays, co-insurance amounts, deductibles and other out-of-pocket expenses.