March shines a spotlight on patients living with bleeding disorders, and their families and caregivers. Bleeding Disorders Awareness Month raises awareness of conditions like hemophilia A and B, von Willebrand disease, and rare factor disorders.
Tracing its roots back to 1948, the National Bleeding Disorders Foundation (NBDF) was founded as the National Hemophilia Foundation; the organization changed its name in August 2023 to better reflect its mission. With a network of 50 chapters nationwide and contributions to bleeding disorders research totaling $22 million, its impact is deep and wide. For Bleeding Disorders Awareness Month, NBDF is “starting a conversation” around issues and experiences related to inheritable blood or bleeding disorders.
To join the conversation, Bio.News spoke with the NBDF’s Director of State Government Relations, Bill Robie, about what the organization has been up to lately.
NBDF puts focus on patients
NBDF held its Washington Days fly-in from March 6-8, 2024, an opportunity for volunteer advocates from across the country to meet with lawmakers. Patients and their loved ones shared their lived experiences while advocating for greater federal resources.
Of note, Robie said NBDF is particularly interested in seeing Congress pass the HELP Copays Act (S. 1375/H.R. 830). For those living with blood disorders, there is a great need for reform to co-pay accumulator adjustor programs as well as co-pay maximizers, he explained.
“The payers vacuum up all the patient assistance that comes from the manufacturer. So, it doesn’t stop after you meet your deductible, your max out of pocket, because they don’t count it towards [that],” he said.
NBDF is also asking members to sign a letter to the Centers for Medicare & Medicaid Services (CMS) about insurance plan formulary exclusions. This issue greatly affects people with blood disorders across the country.
Additionally, NBDF advocates for “common-sense limits” on step therapy. The organization is particularly interested in establishing clear timelines for insurer responses to requests for exceptions and ensuring that patients who are successfully using a treatment do not have to switch.
Beyond D.C., NBDF is also optimistic about its legislative outreach efforts beyond Washington, D.C. According to Robie, there are currently bills related to advancing the interests of those living with bleeding disorders in 14 states. Many NBDF chapters are leading coalitions at the state level.
How to learn more about bleeding disorders
While Bleeding Disorders Awareness Month takes place in March, for patients with bleeding disorders—and their families and their caregivers—every day is an awareness day.
All year long, NBDF facilitates advocacy and educational opportunities. On April 17, 2024, NBDF’s Wednesday Webinar will focus on a treatment option for the hemophilia A or B with inhibitors community.
If you want to learn more about bleeding disorders and how you can become an advocate in raising awareness about them, visit www.hemophilia.org.
