Second Quarter Advocacy Updates
Hope on the Hill 2025 was a huge success!
Check out this short recap video to see highlights from an incredible week on Capitol Hill!
As a key element of Hope on the Hill, Hope Charities led a Congressional Briefing at the Rayburn Senate Office Building with 106 advocates and Congressional staff in attendance. The briefing centered around a call to action for patient-first healthcare, with Hope urging members of Congress to:
1. Support PBM reform to restore patient choice of specialty pharmacy
2. Co-sponsor the HELP Copays Act (S.864) to ensure third-party copay assistance counts toward out-of-pocket costs
3. Increase federal funding through the NIH and CDC for rare disease and bleeding disorder programs
The briefing also featured powerful testimony from patients and professionals. Donovan Guerrero, a 24-year-old student and patient, shared how an Alternative Funding Program (AFP) left him without vital medication for over a month. Guerrero stated, “I ended up calling the Medicaid director in New Hampshire to survive. This system is dangerous.” Brittany Gillespie, a mother of a child with hemophilia, recounted an 11-month struggle to get her son’s medication approved. She said, “PBMs should not steal children’s childhoods. No parent should have to fight this hard.” Finally, Mark Zatyrka, pharmacist and patient, shared the tragic death of a friend due to restricted pharmacy mandates. He shared, “My friend would have turned 41 on Sunday. He didn’t die because of hemophilia. He died because the system failed him.”
Jonathan James, CEO of Hope Charities, said, “The worst part of having hemophilia hasn’t been the disease—it’s been the failed policies that make getting treatment harder than it should be. These are solvable problems, and we’re here to help solve them.”
The briefing also highlighted the failure of AFPs and accumulator policies which block financial assistance from counting toward patients’ deductibles, placing life-saving drugs out of reach. “We believe anyone—family, friend, church, charity—should be able to help someone pay for their medication,” said James. “The current system punishes generosity and leaves the most vulnerable behind.”
With bills in development in Congressman Neal Dunn’s office and letters of inquiry circulating from Representatives Griffith and McBath, there is real momentum. Hope on the Hill showed us that together—with advocates, lawmakers, and families—we can turn this moment into meaningful change for all people living with a bleeding disorder.
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Want to hear what happened at Hope on the Hill 2025? Join us for a special webinar as James Romano, Brittany Gillespie, and our CEO Jonathan James debrief this year’s pivotal advocacy event. You’ll get an inside look at how community members met with representatives in Washington, D.C. to elevate the needs of those living with a bleeding disorder—and what comes next in our mission for lasting change.
Date: Friday, June 19, 2025 Time: 1:00 PM CST Where to Watch: Facebook or YouTube |
THANK YOU TO OUR GENEROUS SPONSORS!
First Quarter Advocacy Updates
Your Voice Matters: Take Action for Fair Access to Medications
For individuals living with bleeding disorders and other chronic conditions requiring high-cost specialty medications, access to life-saving treatments is becoming more difficult. Insurance companies are implementing policies that put profits ahead of patient care, making it harder for people to afford and obtain the medications they need. These challenges won’t change unless we, as a community, take action.
One major issue is the role of pharmacy benefit managers (PBMs)—middlemen that decide how medications are covered and where patients can fill their prescriptions. Many insurers own PBMs and force patients to use their preferred pharmacies, reducing choice and eliminating vital services that independent specialty pharmacies provide. This consolidation limits competition, increases costs, and weakens the quality of care. Patients who once relied on specialized support—like nursing assistance, education, and essential supplies—are now left without these critical resources.
Legislators in Congress have started paying attention to these unfair practices. While progress has been made, most proposed solutions focus only on pricing transparency rather than fixing the core problem: the system is stacked against patients. To change this, we need to make our voices heard.
Hope Charities is actively working with lawmakers to support policies that protect patient choice and ensure fair access to specialty medications. But we can’t do it alone. Advocacy isn’t about organizations—it’s about people. Real stories from real patients make the biggest impact. When lawmakers hear firsthand how these policies affect families, they are more likely to take action.
This is why we need you. We are calling on individuals and families affected by these issues to speak up, share your story, and get involved. Join us in reaching out to Congress, attending advocacy events, and making sure lawmakers understand what’s at stake.
One powerful opportunity is coming soon: June 3-5, Hope Charities will bring patients and families to Washington, D.C., for face-to-face meetings with legislators. This is a chance to tell decision-makers exactly how their policies are impacting lives—and to push for change that will protect access to care for years to come.
The future of patient care depends on all of us. Let’s stand together, raise our voices, and fight for fair access to life-saving medications. Your story matters. Your action makes a difference. Join the movement today.
Jonathan James
President/CEO
Hope Charities
One major issue is the role of pharmacy benefit managers (PBMs)—middlemen that decide how medications are covered and where patients can fill their prescriptions. Many insurers own PBMs and force patients to use their preferred pharmacies, reducing choice and eliminating vital services that independent specialty pharmacies provide. This consolidation limits competition, increases costs, and weakens the quality of care. Patients who once relied on specialized support—like nursing assistance, education, and essential supplies—are now left without these critical resources.
Legislators in Congress have started paying attention to these unfair practices. While progress has been made, most proposed solutions focus only on pricing transparency rather than fixing the core problem: the system is stacked against patients. To change this, we need to make our voices heard.
Hope Charities is actively working with lawmakers to support policies that protect patient choice and ensure fair access to specialty medications. But we can’t do it alone. Advocacy isn’t about organizations—it’s about people. Real stories from real patients make the biggest impact. When lawmakers hear firsthand how these policies affect families, they are more likely to take action.
This is why we need you. We are calling on individuals and families affected by these issues to speak up, share your story, and get involved. Join us in reaching out to Congress, attending advocacy events, and making sure lawmakers understand what’s at stake.
One powerful opportunity is coming soon: June 3-5, Hope Charities will bring patients and families to Washington, D.C., for face-to-face meetings with legislators. This is a chance to tell decision-makers exactly how their policies are impacting lives—and to push for change that will protect access to care for years to come.
The future of patient care depends on all of us. Let’s stand together, raise our voices, and fight for fair access to life-saving medications. Your story matters. Your action makes a difference. Join the movement today.
Jonathan James
President/CEO
Hope Charities
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Want to learn more about how we are making a difference for the bleeding disorders community in 2025? Join us for a special webinar with our CEO, Jonathan James, as he shares details about Hope on the Hill—our pivotal advocacy event where community members will meet with representatives in Washington, D.C. to champion the needs of those living with a bleeding disorder.
Date: Monday, March 31, 2025 Time: 1:00 PM CST Where to Watch: Facebook or YouTube |
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In September 2024, Hope Charities hosted their first Congressional briefing. Over 50 staffers from Congressional offices joined the Hope Charities team to listen to Jonathan present on Hope Charities legislative priorities. Patients from the bleeding disorders community were able to meet with representatives from several offices to share their experiences related to key policies that are being
considered and weigh in on how those issues affect patients with rare and chronic conditions. Hope is planning to host Hope on the Hill in June 2025 to continue the work started last year and hopefully bring awareness to some of the newer issues that are being considered for possible bills. James Romano of Care and Cure Partners, legislative consultant to Hope Charities, explained some of the nuances of Hope’s advocacy program. |
Q. In a general sense, what are the current advocacy needs for the bleeding disorders community?
James: One of the things Hope is pushing ahead with is working to get “any willing provider” laws so that our patients have the opportunity to choose the specialty pharmacy they want and not just accept the one their insurance provider or pharmacy benefits manager (PBM) is forcing them to use. There is great interest on Capital Hill right now with this issue. About 20 years ago, we all bought into the idea that if we integrate the model and allow insurance companies to start their own pharmacies, then there will be cost savings; that has not been realized. There’s been a big push to enact reforms for PBMs. There were some provisions around reforming PBMs that were included into a comprehensive bill at the end of the 2024 year that the current administration torpedoed. Hope has voiced their support with several congressional offices who are crafting legislation that would ban Insurance Providers and PBMs from owning their own specialty pharmacies. There’s also been a big push for Medicare to have “any willing provider” language, but it’s not including private insurance. We support those efforts as well. In addition, Hope is very interested in leading the way on alternative funding programs (AFPs) and getting legislation sponsored that would ban AFPs.
Q: How does the work that Hope is doing differ from what other bleeding disorders organizations are doing?
James: The Hope agenda is geared towards gaining greater access for patients. This differentiates Hope from other national organizations since their goals are always going to be fairly narrow. The National Bleeding Disorders Foundation’s (NBDF) public policy initiatives currently are dealing with banning copay accumulators federally. NBDF also has a research agenda with clinical trials and maintaining funding for the rare blood program at the Health Resources & Services Administration (HRSA). The Hemophilia Federation of America is following a similar trajectory. Hope’s agenda is different because it focuses solely on the patient experience. NBDF is working on issues that are important to their focus areas and research. Hope is addressing issues that impact patient access to care, like PBMs and AFPs. Hope wants to ensure that patients have a choice in which pharmacy they use rather than being forced by insurance and to have continued access to treatment without fear of AFPs.
Read more on our latest Hope Factor issue:
https://www.hopeforhemophilia.org/hope-factor
James: One of the things Hope is pushing ahead with is working to get “any willing provider” laws so that our patients have the opportunity to choose the specialty pharmacy they want and not just accept the one their insurance provider or pharmacy benefits manager (PBM) is forcing them to use. There is great interest on Capital Hill right now with this issue. About 20 years ago, we all bought into the idea that if we integrate the model and allow insurance companies to start their own pharmacies, then there will be cost savings; that has not been realized. There’s been a big push to enact reforms for PBMs. There were some provisions around reforming PBMs that were included into a comprehensive bill at the end of the 2024 year that the current administration torpedoed. Hope has voiced their support with several congressional offices who are crafting legislation that would ban Insurance Providers and PBMs from owning their own specialty pharmacies. There’s also been a big push for Medicare to have “any willing provider” language, but it’s not including private insurance. We support those efforts as well. In addition, Hope is very interested in leading the way on alternative funding programs (AFPs) and getting legislation sponsored that would ban AFPs.
Q: How does the work that Hope is doing differ from what other bleeding disorders organizations are doing?
James: The Hope agenda is geared towards gaining greater access for patients. This differentiates Hope from other national organizations since their goals are always going to be fairly narrow. The National Bleeding Disorders Foundation’s (NBDF) public policy initiatives currently are dealing with banning copay accumulators federally. NBDF also has a research agenda with clinical trials and maintaining funding for the rare blood program at the Health Resources & Services Administration (HRSA). The Hemophilia Federation of America is following a similar trajectory. Hope’s agenda is different because it focuses solely on the patient experience. NBDF is working on issues that are important to their focus areas and research. Hope is addressing issues that impact patient access to care, like PBMs and AFPs. Hope wants to ensure that patients have a choice in which pharmacy they use rather than being forced by insurance and to have continued access to treatment without fear of AFPs.
Read more on our latest Hope Factor issue:
https://www.hopeforhemophilia.org/hope-factor
Change seems to be the major theme as each new year rolls around and that is not an exception where advocacy is concerned. While the issues at stake might not necessarily differ from year to year, the individuals making those decisions do often change.
Dane Christiansen of the Health and Medicine Counsel (hmcw.org) has been on the front lines advocating for patients with rare and chronic diseases for the past twenty years.
Pharmacy Benefit Managers (PBMs) Update
Current Status: PBM reform has been a topic of conversation in Congress for some time including bills such as the No More PBMs act. The 118th Congress was involved in gathering data and hearing testimony, but did not feel comfortable finalizing a law, so they handed this off to the 119th Congress. This will be an active conversation for the new Congress.
2025 Projections: The new Congress will reintroduce the No More PBMs act but it will include more hearings and markups, identifying the most crucial issues, and creating a package that is bipartisanly supported. It will be a priority in 2025 and 2026 for the 119th Congress. In addition, AFPs have been closely monitored by Congress, particularly those members involved in PBM reform. There could be a bill for AFPs that is part of a greater PBM reform bill.
Accumulator Adjusters Update
Current Status: A unique situation presents itself regarding accumulator adjusters. The 45th president has now become the 47th president. The policies that originally allowed for accumulator adjuster programs proliferated during the first Trump administration and were carried through the Biden administration. The patient community, led by a few key stakeholders, sued in federal court arguing that the accumulator adjuster practice should be illegal. The court agreed with the patients, the Biden administration appealed, and the appeals court sided again with patients. A directive was given by the court that a new policy be written that is not illegal and does not allow these types of abuses with copay accumulator adjuster programs. The court decision is binding and is being enforced, but it will be left to the new administration to write the guidance regarding accumulator adjusters. The problem arises in that the new administration is the same one that originally allowed for accumulator adjusters. Dane says, “It’s a little bit like the fox guarding the hen house”
2025 Projections: There are some unknowns as to what 2025 will hold for accumulator adjusters. Congressman Buddy Carter, a pharmacist from Georgia, introduced the Help Copays Act bill in the 118th Congress that would ban or restrict accumulator adjuster programs. He is now serving as the Chairman of the Health Subcommittee of the Energy and Commerce Committee in the 119th Congress. Chairmen traditionally do not introduce bills, so there are questions as to whether the bill will be reintroduced and who might be the new leaders. If the bill is reintroduced, it is supported by key leaders and is more likely to move forward. Were the Help Copays Act to be passed, it cannot be modified regardless of who is interpreting or enforcing it. How the Trump administration responds to the new rules on accumulator adjuster programs when they are released will determine what happens next for the patient community. There is a chance that new rules are written that are not beneficial to the rare disease community. This could potentially result in a new lawsuit regarding the new rules. Dane says, “What would settle all of this in many respects is if Congress just passed a law that the courts said it’s illegal and patients believe they are being taken advantage of; we are restricting the practice of copay accumulators and we’re making sure that any assistance counts. That’s largely the end of it. Congress has spoken and the law has spoken.”
Alternative Funding Programs (AFPs) Update
Current Status: AFPs are the newest tactic being utilized by insurance companies to limit patient access since the passage of the ACA. It follows in line with copayments, prior authorization, and fail-first therapies. Unfortunately for patients, the government does not operate in-real time and has only recently begun to study this issue in the last two years. 2025 Projections: It is anticipated that a bill regarding AFPs will be introduced either in 2025 individually (like the HELP Copays Act) or as part of the PBM reform conversation and legislation.
Read more on our latest Hope Factor issue:
https://www.hopeforhemophilia.org/hope-factor
Dane Christiansen of the Health and Medicine Counsel (hmcw.org) has been on the front lines advocating for patients with rare and chronic diseases for the past twenty years.
Pharmacy Benefit Managers (PBMs) Update
Current Status: PBM reform has been a topic of conversation in Congress for some time including bills such as the No More PBMs act. The 118th Congress was involved in gathering data and hearing testimony, but did not feel comfortable finalizing a law, so they handed this off to the 119th Congress. This will be an active conversation for the new Congress.
2025 Projections: The new Congress will reintroduce the No More PBMs act but it will include more hearings and markups, identifying the most crucial issues, and creating a package that is bipartisanly supported. It will be a priority in 2025 and 2026 for the 119th Congress. In addition, AFPs have been closely monitored by Congress, particularly those members involved in PBM reform. There could be a bill for AFPs that is part of a greater PBM reform bill.
Accumulator Adjusters Update
Current Status: A unique situation presents itself regarding accumulator adjusters. The 45th president has now become the 47th president. The policies that originally allowed for accumulator adjuster programs proliferated during the first Trump administration and were carried through the Biden administration. The patient community, led by a few key stakeholders, sued in federal court arguing that the accumulator adjuster practice should be illegal. The court agreed with the patients, the Biden administration appealed, and the appeals court sided again with patients. A directive was given by the court that a new policy be written that is not illegal and does not allow these types of abuses with copay accumulator adjuster programs. The court decision is binding and is being enforced, but it will be left to the new administration to write the guidance regarding accumulator adjusters. The problem arises in that the new administration is the same one that originally allowed for accumulator adjusters. Dane says, “It’s a little bit like the fox guarding the hen house”
2025 Projections: There are some unknowns as to what 2025 will hold for accumulator adjusters. Congressman Buddy Carter, a pharmacist from Georgia, introduced the Help Copays Act bill in the 118th Congress that would ban or restrict accumulator adjuster programs. He is now serving as the Chairman of the Health Subcommittee of the Energy and Commerce Committee in the 119th Congress. Chairmen traditionally do not introduce bills, so there are questions as to whether the bill will be reintroduced and who might be the new leaders. If the bill is reintroduced, it is supported by key leaders and is more likely to move forward. Were the Help Copays Act to be passed, it cannot be modified regardless of who is interpreting or enforcing it. How the Trump administration responds to the new rules on accumulator adjuster programs when they are released will determine what happens next for the patient community. There is a chance that new rules are written that are not beneficial to the rare disease community. This could potentially result in a new lawsuit regarding the new rules. Dane says, “What would settle all of this in many respects is if Congress just passed a law that the courts said it’s illegal and patients believe they are being taken advantage of; we are restricting the practice of copay accumulators and we’re making sure that any assistance counts. That’s largely the end of it. Congress has spoken and the law has spoken.”
Alternative Funding Programs (AFPs) Update
Current Status: AFPs are the newest tactic being utilized by insurance companies to limit patient access since the passage of the ACA. It follows in line with copayments, prior authorization, and fail-first therapies. Unfortunately for patients, the government does not operate in-real time and has only recently begun to study this issue in the last two years. 2025 Projections: It is anticipated that a bill regarding AFPs will be introduced either in 2025 individually (like the HELP Copays Act) or as part of the PBM reform conversation and legislation.
Read more on our latest Hope Factor issue:
https://www.hopeforhemophilia.org/hope-factor
