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Bleeding Disorders

 

Bleeding disorders are a group of disorders that share the inability to form a proper blood clot. They are characterized by extended bleeding after injury, surgery, trauma or menstruation. Sometimes the bleeding is spontaneous, without a known or identifiable cause. Improper clotting can be caused by defects in blood components such as platelets and/or clotting proteins, also called clotting factors.

 

Hemophilia occurs predominantly in males, but can occur in women. In about one-third of cases the disorder results from a spontaneous genetic mutation rather than by a family history of hemophilia. Hemophilia treatment may require life-long infusion of clotting factor based on the severity of the disorder. Average hemophilia treatment costs between $60,000 and $260,000 per year. Early recognition and prompt treatment of bleeds can help keep these costs down as well as reduce disability.

 

von Willebrand Disease is a bleeding disorder caused by a defect or deficiency of a blood clotting protein, called von Willebrand Factor. The disease is estimated to occur in 1% of the population; many are undiagnosed. vWD is a genetic disease that can be inherited from either parent. It affects males and females equally. A man or woman with VWD has a 50% chance of passing the gene on to his or her child. There are no racial or ethnic associations with the disorder. A family history of a bleeding disorder is the primary risk factor.

 

Other Factor Deficiencies: There are ten clotting factors that are necessary in forming a blood clot. Deficiencies in factors VIII and IX are well known to most people, but what of the other factor deficiencies? Not everyone is as familiar with these conditions because they are diagnosed so rarely. To date, deficiencies in eight of the lesser known coagulation factors have been documented in the medical literature. Many of these disorders were only discovered or described within the last 40 years.

News from HFA

  • Leading Advocacy Organizations Celebrate Federal Rule Strengthening Protections Against Disability Discrimination 

    The Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), National Bleeding Disorder Foundation (NBDF) and Hemophilia Federation of America (HFA) are pleased to share that after advocacy from the bleeding disorders community, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a new rule The post Leading Advocacy Organizations Celebrate Federal Rule Strengthening Protections Against Disability Discrimination  appeared first on Hemophilia Federation of America.

  • Advocacy News: April 2024

    Word from Washington After one year, Medicaid coverage losses during “unwinding” continue to surpass worst fears According to the latest KFF Medicaid Unwinding Enrollment Tracker, more than 21 millionAmericans have lost Medicaid coverage during the first year after states were allowed to resume eligibility verifications following the COVID-19 public health emergency. There remains wide variation The post Advocacy News: April 2024 appeared first on Hemophilia Federation of America.

  • May is Hepatitis Awareness Month

    In 2001, the Centers for Disease Control and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and ’90s, thousands of people with hemophilia contracted HIV and hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factor products. The post May is Hepatitis Awareness Month appeared first on Hemophilia Federation of America.

  • FDA Approves One-Time Gene Therapy for Adults with Hemophilia B

    From Pfizer: Pfizer Inc. announced that the US Food and Drug Administration has approved BEQVEZ™ (fidanacogene elaparvovec-dzkt) for the treatment of adults with moderate to severe hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes, and do not have neutralizing The post FDA Approves One-Time Gene Therapy for Adults with Hemophilia B appeared first on Hemophilia Federation of America.

  • Advocacy News: March 2024

    Word From Washington Federal Agencies Supreme Court Congress State of the States Oregon becomes first state in 2024 to pass protections against copay accumulator adjusters. Oregon Governor Tina Kotek (D) signed legislation unanimously passed by the House and Senate that protects consumers in state-regulated health plans from harmful and discriminatory copay accumulator adjuster programs (CAAPs). The post Advocacy News: March 2024 appeared first on Hemophilia Federation of America.