WHAT IS HOPE ON THE HILL?
In June 2025, Hope organized a Fly-In, where 30 community members from across the country gathered for strategic meetings with their representative in Washington, DC. Representatives are chosen based on their involvement in key legislation, committee membership, or willingness to champion our causes. Attendees participated in a pre-event webinar, advocate training, and continuous one-on-one support during the Hope on the Hill. A congressional reception comprised of community members, sponsors, staff, and legislators/staffers on Capitol Hill ended the event.
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 actionfor 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.
Advocacy Update After Hill!
THANK YOU TO OUR GENEROUS SPONSORS!
HOPE ON THE HILL 2024
In September Hope Charities had the opportunity to meet with legislators in Washington DC on the harmful practices and policies that people living with bleeding disorders are facing. Below are three primary advocacy initiatives our team discussed with policymakers:
HOPE had the opportunity to host a congressional briefing and had over 50 people in attendance representing over 20 offices on how Alternative Funding Programs are harming people living with bleeding disorders. We shared recent data collected from a peer-reviewed research project that will soon be published on 271 people who were victims of this type of harmful practices that put vulnerable people dependent on life-saving medications at risk. We asked attendees to work with us to create solutions that will prevent these companies from continuing to harm people living with bleeding disorders and other rare and chronic conditions dependent on high-cost medications.
- PBM Reform and the need for patient access to specialized pharmacies
- Employer Health Insurance Plans that exclude specialty medications and utilize AFPs (Alternative Funding Programs)
- Copay Accumulators and the need to pass the HELP Copays Count Act H.R.830
HOPE had the opportunity to host a congressional briefing and had over 50 people in attendance representing over 20 offices on how Alternative Funding Programs are harming people living with bleeding disorders. We shared recent data collected from a peer-reviewed research project that will soon be published on 271 people who were victims of this type of harmful practices that put vulnerable people dependent on life-saving medications at risk. We asked attendees to work with us to create solutions that will prevent these companies from continuing to harm people living with bleeding disorders and other rare and chronic conditions dependent on high-cost medications.
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Whitney Gallaway shared her journey of helping her son regain access to his medication after he was denied due to an AFP, then later a copay accumulator forcing them to empty their retirement account to pay out of pocket for his medication. Her story was heartwrenching and impactful in helping these offices understand the destructive nature of these practices and the need for action to prevent harm to people like her and her family.
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Julie Baker from DrugCo Specialty Pharmacy shared with many offices how limited networks have made it impossible for specialty pharmacies to provide vital services like in-home nursing, ancillary medical supplies, and even insurance counseling for people living with bleeding disorders due to PBM’s forcing people to use their self-owned pharmacies. “This is not an issue of competition, this is an issue of expertise,” said Julie. DrugCo specializes in treating Hemophilia, Von Willebrand disease, and many other bleeding disorders and is licensed to distribute medications in all 50 states.
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Lesley Lamarie from Octapharma said that “everyone needs to understand the importance of these issues”. Education is paramount to understanding the intricacies of these challenges that are affecting patients every day. These policies affect everyone. Building relationships over time with the right people and bringing these important issues to the attention of policymakers is the only way that we collectively will make change. We need every voice to participate and it
starts with one person at a time. |
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We met with 9 offices including Rep. Neal Dunn (FL), Rep. Russell Fry (SC), Sen. Ron Wyden (OR), Sen. Maria Cantwell (WA), Rep. Jason Smith (MO), Speaker of the House Rep. Mike Johnson (LA), Rep. Jamie Raskin (MD), Rep. Jake Auchincloss (MA) and House majority leader Rep. Steve Scalise (LA). Each of these offices plays an integral role in leadership and targeted committees.
THANK YOU TO OUR HOPE ON THE HILL 2024 SPONSOR
