Advocates in the bleeding disorders community descended upon our nation’s capital March 8–10 to create awareness and press for better legislation against copay accumulator adjustors. This was part of the National Hemophilia Foundation’s Washington Days, an event which had stalled during COVID and was virtual in 2022. This was the first full return of face-to-face advocacy with Congress in several years.
A top advocacy issue this year involved asking House Members to cosponsor H.R. 830, the HELP Copays Act. This act would require all copays (regardless of who contributes) to count towards a person’s out-of-pocket maximum. Sixteen states and Puerto Rico currently have laws restricting an insurer’s use of a copay accumulator adjustor, a policy where dollars provided by a third-party source (such as a manufacturer drug copay card) do not apply toward a patient’s out-of-pocket amount. However, those laws only protect patients on those state’s plans. The legislation would offer protection for people on employer–sponsored retirement and health plans, also known as ERISA plans, or large group plans.
Another advocacy issue included asking for continued funding of programs supported through NIH, CDC, and HRSA. NIH (The National Institutes of Health) is currently investigating the rise of inhibitors within the bleeding disorders community; the CDC (Centers for Disease Control and Prevention) provides funding to HTCs (Hemophilia Treatment Centers) for outreach and education; and HRSA (Health Resources and Services Administration) supports ancillary services within the HTC setting like physical therapy and social work. A reduction of these funds would negatively impact the current level of care persons with a bleeding disorder receive and would have consequences in the future as inhibitors and other issues become understudied.
After NHF training and a role-playing exercise to demonstrate the “Do’s and Don’ts” of meeting with elected officials, the advocates felt prepared. The Advocacy Day began with a speech from Representative Earl “Buddy” Carter (R-GA-01) who is sponsoring H.R. 830, the bill the group was there to support. With his words of encouragement, the advocates headed out to descend upon the Capitol and meet with elected officials. Several BioMatrix members were there to support the advocacy efforts.
Richard Vogel with Team New Jersey was busy with five Congressional meetings. Starting with a visit to the office of Senator Robert Menendez (D-NJ), advocates seamlessly interwove their stories into a cohesive narrative which started with the younger generation, moved on to women with bleeding disorders, and then concluded with those who have reached retirement age. New Jersey was fortunate to have with them for their advocacy Stephanie Lapidow, Executive Director and Amy LaPorta, Office Manager of Hemophilia Association of New Jersey.
Senator Menendez has been very supportive of bleeding disorder issues in the past; he sponsored the Hemophilia Skilled Nursing Facilities Access Act (H.R. 5952, 116th Congress). Team New Jersey is hopeful he will introduce the companion legislation to the HELP Copays Act in the Senate, another bipartisan bill.
The team next went to the office of Senator Cory Booker (D-NJ). On the House side, the team met with Representatives Josh Gottheimer (D-NJ 05), Mikie Sherrill (D-NJ-11), and Bonnie Watson-Coleman (D-NJ-12), the latter already a cosponsor of H.R. 830. In their offices, the legislative aides expressed empathy and interest in supporting the cause.
For the full Capitol experience, the team was lucky enough to get passes to the House Gallery where they were able to watch democracy in action.
Shelby Smoak attended as an advocate for Virginia. He and Brenda Bordelon, fellow constituent and Chapter Director of Hemophilia Association of the Capitol Area, met with Representative Ben Cline (R-VA-06). The meeting was spirited, and Representative Cline seemed especially interested in H.R. 830 and the CDC funding, the latter of direct importance since he sits on the House Appropriations Committee which is responsible for making funding determinations.
Representatives Rob Wittman (R-VA-01) and Morgan Griffith (R-VA-09) made time for staff to hear stories from the community and were asked to support our cause. On the Senate side, the offices of both Virginia Senators Tim Kaine (D-VA) and Mark Warner (D-VA) were receptive to the financial burdens endured by the community as explained by our group. They both took pride in being Senators from the state which was the very first to pass a copay accumulator ban.
Felix Jaquez Garcia from New Mexico, teamed up with members from Puerto Rico to support them at their meeting with Representative Jenniffer González-Colón (R) of Puerto Rico. She was very receptive and immediately jumped in to work with the Puerto Rico chapter to protect access to HTCs.
In his meeting with Senator Ben Ray Luján’s (D-NM) staff, Felix was optimistic the Senator would sign on as a cosponsor to ban copay accumulators should a bill be introduced. Felix also connected with the staffer from Senator Heinrich’s (D-NM) office, who also was willing to support a copay accumulator ban.
In the office of Representative Gabriel Vasquez (D-NM-02), the meeting with his staffer was productive as well as they were in support of the NHF initiatives.
Justin Lindhorst and Dave Burgeson attended from the state of Florida. Team Florida included nine advocates determined to help lawmakers understand the unique needs of the bleeding disorders community. While all five offices visited listened attentively to the concerns, the greatest victory came when meeting with Representative Bill Posey (R-FL-08). Rep. Posey was so inspired by the story shared by his constituents, he agreed on the spot to support H.R. 830 as a cosponsor. Congratulations to advocates Heather and Samantha for so eloquently sharing their story and securing support for the HELP Copays Act.
Terry Rice and two other constituents from Maine added their numbers to a larger New England contingency and made numerous congressional visits. Their first home state visit was with Senator Susan Collins (R-ME). Senator Collins listened to the concerns regarding access to affordable lifesaving prescriptions and the effect copay accumulators are having on patients and families living with a chronic illness that must be treated with expensive name brand medications that have no generic alternatives. She was supportive in finding a solution to deal with the accumulator adjustors, which have been crippling the financial and physical health of affected individuals and asked to be kept informed with the progress of H.R. 830 should a Senate companion bill be introduced. As the Ranking Member on the Senate Appropriations Committee, Senator Collins expressed support to continue HRSA and CDC funding of HTCs.
The team also met with Senator Angus King’s (I-ME) office. Senator King’s legislative assistant shared he has type-1 diabetes and was very aware of the detrimental effects of accumulator adjustors. He felt the Senator would support legislation to address the issue and was confident he would continue to support HTC level funding.
On the House side, the team left information with Representative Jared Golden (D-ME-02) and were able to meet with the legislative health aide to Representative Chellie Pingree (D-ME-01) who cosponsored accumulator adjustor legislation in previous years and would again cosponsor H.R. 830. The aide assured Representative Pingree would support continued HTC funding.
The meetings with the House and Senate offices set in motion the narrative of the burden our bleeding disorders community bears: financially, mentally, and necessarily, physically. To all the advocates from the nearly 50 states who joined the advocacy efforts, we say thank you! And to NHF, we also say thank you for organizing this energy on the Hill and aiding the community voices to be heard.
As nuanced as everyone’s experience is of living with hemophilia, von Willebrand, or another factor deficiency – people with a bleeding disorder endure the costs of medications and the need for the protection H.R. 830 would grant; and even if not seen at an HTC, everyone benefits from the funding and support granted by our national institutions: NIH, CDC, and HRSA.
Real change has come from the efforts of NHF Washington Days Advocacy and hopefully, community members who shared their stories this year will impact further positive changes for the bleeding disorders community.
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