WHAT IS HOPE ON THE HILL?

In June 2025, Hope will organize a Fly-In, where 30 community members from across the country will gather 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 will participate 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 will end the event. 

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THANK YOU TO OUR HOPE ON THE HILL SPONSORS!

GOLD SPONSORS

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ADVOCATE SPONSOR

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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:

1. PBM Reform and the need for patient access to specialized pharmacies 
2. Employer Health Insurance Plans that exclude specialty medications and utilize AFPs (Alternative Funding Programs)
3. 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. 

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. 

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. 

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.​

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.

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THANK YOU TO OUR HOPE ON THE HILL 2024 SPONSOR