Biotechnology Innovation Organization reposted this
TOMORROW is World Hemophilia Day! To honor this day, and the amazing patient advocacy community that raises awareness for this important issue -tomorrow just like the other 364 days of the year - we at Biotechnology Innovation Organization sat down with the National Bleeding Disorders Foundation. We learned that about 33,000 people are living with Hemophilia in the U.S. The two most common types, Hemophilia A and Hemophilia B, are more common in men than women. Others, like von Willebrand disease (VWD), are equally common in both genders. Yet, awareness of bleeding disorders in women and girls in particular remains limited and these patients are still woefully underdiagnosed and underserved. We learned that delay in diagnosis is all too common, and a particular challenge for women living in an underserved healthcare region—if they are diagnosed at all. We also learned about the challenges hemophilia patients and families face every day in trying to access the therapies they need - and that are prescribed to them. This includes copay accumulators and maximizers, used by insurers to shift costs away from the insurer to other stakeholders, including patients. Insurers are increasingly using copay accumulators and maximizers to prevent copay assistance from counting towards a patient’s deductible or out of pocket maximum, leaving patients with large out of pocket expenses when the assistance is depleted. That is why the Foundation is campaigning for the passage of the HELP Copays Act, a bill that requires health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee, including copay assistance, toward a plan’s cost-sharing requirements. Finally, we learned how the Foundation works to address the need for cures and prevention of complications from these disorders through research, education, and advocacy, enabling people and families to thrive. We learned that the organization is developing a national research agenda in partnership with the community to ensure that the voice of the people who are most affected by research—the patients and families—remain at the center of scientific progress. The organization has invested more than $20 million to research better treatments and cures for blood or bleeding disorders. The foundation’s current research program supports basic science research, innovative investigators, and NIH bridge grants, among others. Through fellowships, the foundation supports the hematologists, nurses, social workers and physical therapists who provide care for people with blood or bleeding disorders and encourage young doctors to join their ranks. A world without inheritable blood or bleeding disorders is possible, and it starts with research and the tireless work of organizations like the National Bleeding Disorders Foundation. Read the full article on bio.new.