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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

  • WFH Gene Therapy Registry: now live!

    The World Federation of Hemophilia (WFH) has developed a registry to monitor the long-term safety and efficacy of gene therapy for people with hemophilia: the WFH Gene Therapy Registry (GTR). The launch of the WFH GTR coincides with the first approvals of gene therapy for hemophilia by both the United States Food and Drug Administration (FDA) and the European Medicines Agency (EMA). The post WFH Gene Therapy Registry: now live! appeared first on Hemophilia Federation of America.

  • HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies

    On January 1st, Blue Cross Blue Shield of Tennessee (BCBST) implemented formularies for their health plans (individual, small group, and large group) that remove 17+ bleeding disorders treatments from coverage. These exclusions threaten the health of potentially hundreds of Tennesseans who live with inherited blood or bleeding disorders. Patients who have been stable on their The post HFA & NHF Respond to New Blue Cross Blue Shield of Tennessee Formularies appeared first on Hemophilia Federation of America.

  • Dear Addy: Pharmacy Choice

    A community member writes in about their struggles with a friend who is pressuring them to switch to the specialty pharmacy that they work for. Addy share tips with writer as how to try to both keep their friendship and their pharmacy. The post Dear Addy: Pharmacy Choice appeared first on Hemophilia Federation of America.

  • State of the States: Q4 2022

    States win authority to restart Medicaid eligibility determinations in April The omnibus spending legislation passed late in the year by Congress will let states resume Medicaid eligibility determinations in April 2023, even if the Administration decides to continue the COVID-19 public health emergency (PHE) past that time. The National Association of Medicaid Directors (NAMD) had The post State of the States: Q4 2022 appeared first on Hemophilia Federation of America.

  • Word from Washington: December 2022

    On December 23rd, Congress passed a $1.7 trillion year-end spending package that averts a government shutdown and funds the government through September 2023. The 4,000+ page omnibus bill contains numerous important health provisions affecting Medicaid, telehealth, the accelerated approval pathway for new drugs, and more. The legislation sets a date (April 1, 2023) for the The post Word from Washington: December 2022 appeared first on Hemophilia Federation of America.