Bleeding Disorders Advocates Host Patient Fly-In

Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, emailing, or tweeting their Senator.
As passed, HR 1628, the American Health Care Act (AHCA), would have a disastrous impact on patients with bleeding disorders. The Senate needs to hear from constituents while they are crafting their plan. “We have an amazing opportunity to participate in this process and let the Senate know what our community needs in health reform,” according to Kimberly Haugstad, CEO and President of HFA.
Patients are asking Senators to protect affordable coverage for people with pre-existing conditions; ensure that insurance provides an appropriate scope of meaningful health benefits; protect people against potentially catastrophic costs; maintain robust safety net coverage for those who cannot afford private insurance; keep coverage for children under 26; and oppose underfunded high risk pools.
HFA will also be asking the House to support H.R. 2077, “Restoring the Patient’s Voice Act.” This bill protects patients on employer or self-funded plans from potentially harmful step therapy protocols. Step therapy is a cost cutting strategy employed by insurers that requires patients to take one medication first and “fail” before covering another, potentially more expensive therapy.
Clotting factor, the medication essential to the treatment of bleeding disorders, is a biological product that varies widely: they are not therapeutically equivalent or interchangeable, and no generic versions exist. Prescribing clotting factor is a complex exercise between a specialist and their patient. Allowing immediate access to the most appropriate product will result in better treatment outcomes (less long-term joint damage, less pain, reduced absences from school and/or work) and lower treatment costs.
“Our biggest concern about subjecting patients with bleeding disorders to step therapy is that there is no clinical definition of “failing” on factor therapy. Therefore, the insurance company, not the physician, is making medical decisions that could lead to potentially devastating bleeding episodes,” says Katie Verb, Policy Director at HFA.
About Bleeding Disorders
Bleeding disorders (most commonly hemophilia and von Willebrand disease) are genetic disorders that impair the body’s ability to clot properly. Patients rely on prescription clotting factor medication to avoid painful or life threatening internal bleeding episodes that can lead to joint and muscle damage, and even death. These medications are extremely effective and allow individuals to lead healthy productive lives. People with bleeding disorders obtain treatment from hematology specialists or federally funded hemophilia treatment centers.
Hemophilia Federation of America is a national 501(c)(3) organization that assists and advocates for the bleeding disorders community. Incorporated in 1994, HFA provides programs and services to improve the quality of life for persons with hemophilia, von Willebrand disease (VWD) and other rare bleeding disorders.
For more information, visit our website at or call 1-800-230-9797.