Washington Days: Registration for Washington Days is now open and closes on January 15th.  Register today to join advocates nationwide in Washington D.C. on March 6-8, 2024 to advocate for the HELP Copays Act as well as key federal funding priorities for l HTCs, research in bleeding disorders, and the Centers for Disease Control and Prevention surveillance programs. 

Please find more information on Washington Days here. 


Introducing Ryan Faden as NBDF's New Director of Patient Access: NBDF is pleased to announce that Ryan Faden has joined the Department of Public Policy and Access as the new Director of Patient Access.   

Ryan Faden is a highly skilled professional in-patient advocacy, health care policy and government affairs with over two decades of experience of increasing responsibility. Prior to joining the National Bleeding Disorders Foundation, Ryan was the State Policy lead for Gilead Sciences. His work there included advocating for access to treatment for people living with HIV, Hepatitis C, and Cancer. Ryan’s history with the bleeding disorders community includes 15 years in state government affairs and policy for CSL Behring and the Plasma Protein Therapeutics Association. In those roles, he partnered with bleeding disorders advocates across the country to help ensure access to bleeding disorders therapies in state health programs. Ryan also currently serves on the Board of Directors of the Hemophilia Council of California. Ryan holds a Juris Doctor from Seton Hall University School of Law, a Master of Public Health from UCLA, and Bachelor of Arts in History from UCLA. His interests include tennis, skiing, and listening to music.     



On Dec. 12, forty-eight members of the House of Representatives sent a letter to the Biden Administration’s Depts. of Health and Human Services, Treasury, and Labor urging the Administration to drop its appeal of a September district court ruling vacating the 2021 Notice of Benefit and Payment Parameters and reaffirm the 2020 NBPP which prohibited health insurers from accepting third party patient assistance and not counting it toward the patient’s cost sharing obligation. The letter from the House of Representatives to the Administration is here.  

Senate supporters of S. 1375 are also currently working on a similar letter. 



New Hampshire: New Hampshire is the newest state to have a copay accumulator adjuster bill.! The All Copays Count Coalition and NBDF will be working with Senator Dan Innis during the 2024 session to make New Hampshire the next state with copay accumulator adjuster legislation. 

New York: S.2677/A.463 was called up by Governor Kathy Hochul for signature. S. 2677, a bill advocated by NBDF and the New York State Bleeding Disorders Coalition, would require adverse step therapy determination letters to include clinical review criteria relied upon to make the determination, alternative medication information and the “steps” of the therapies, and consumer protection information and instructions to appeal.  

Oregon:  On Dec. 4 a group of twenty-five individuals and patient advocacy organizations including NBDF and Pacific Northwest Bleeding Disorders sent a letter to the Oregon Prescription Drug Affordability Board requesting numerous reforms to the Board’s operations including patient representation on the Board, more engagement by the Board with patients, increased transparency, and a greater voice for patients in the affordability review process. 

Pennsylvania: The Pennsylvania All Copays Count Coalition will be introducing a copay accumulator House bill sponsored by Rep. Bridget Kosierowski (Scranton).  

Wisconsin:  The Senate Insurance Committee held a hearing on Sen. Felzkowski’s Pharmacy Benefit Manager Accountability bill (SB 737) Wednesday, Dec. 6.  The proposal includes in its entirety SB 100, the Wisconsin All Copays Count Coalition’s copay accumulator adjuster bill.  The committee is expected to hold an executive session at the beginning of January to vote on the bill.  In the Assembly, the companion bill (AB 773) was referred to the Assembly Committee on Health, Aging, and Long-Term Care and a hearing in that committee is anticipated in January as well.