Brian DuVal (MPH ’26) Brings Hemophilia Advocacy to the State Capitol
By Kyra Letsinger
For many Vanderbilt Master of Public Health students on the health policy track, working directly with politicians to lobby for policy is a dream experience, a stepping stone toward making the changes that inspired them to pursue the field in the first place. For first-year Vanderbilt University School of Medicine MPH student Brian DuVal, however, this opportunity for advocacy was not simply a chance for professional growth; rather, it was a deeply personal battle in a much larger fight to aid a community close to home: people living with hemophilia. People just like him.
Hemophilia is a rare genetic disorder in which blood cannot properly clot due to a protein deficiency. Diagnosed as a child, DuVal and his brother both live with the disorder and rely on medication to induce blood clotting. According to the National Bleeding Disorders Foundation, hemophilia medication costs an average of $300,000-$600,000 a year depending on severity. This figure further skyrockets in cases like DuVal’s, where patients’ medication can cost over $1 million a year.
“I’m very fortunate to have lived a healthy life with hemophilia, but that isn’t the case for a lot of people,” he said. “In my lifetime, the treatments have drastically improved for this was a condition that once was a death sentence, but because of how expensive it is, there’s a lot of barriers to access in our community.”
Understanding the intricacies and costs associated with hemophilia treatment inspired DuVal to begin volunteering with the Hemophilia Foundation of Minnesota/Dakotas and, after graduating from the University of Nebraska in 2022, to work full-time with the Hemophilia Federation of America in Washington, D.C. After a year of hands-on experience in patient and legislative advocacy, DuVal had not only gained invaluable experience but also a deeper understanding of the path he wanted to pursue. Eager to take his skills to the next level and jumpstart the next chapter in his career, he applied for VUSM’s MPH program, and in the fall of 2024, started his journey on the health policy track.
Stepping back into the classroom, however, did not stop DuVal from continuing his work in hemophilia advocacy. Instead, he took his move to Tennessee as an opportunity to serve a new community and began working with the Tennessee Hemophilia and Bleeding Disorders Foundation (THBDF). One of his core focuses while working with THBDF was tracking state legislation related to the cost and accessibility of hemophilia treatments. This February, one specific proposed piece of legislation caught DuVal and THBDFs’ eye as it began moving through committee, House Bill 870, which would ban alternative funding programs (AFPs) and copay maximizers
In an AFP, insurance plans, typically those that are employee-sponsored, can deny coverage to members who have not applied for free medication from drug manufacturers’ charitable assistance programs that are intended for the uninsured. Copay maximizers, on the other hand, target a different kind of aid: drug companies’ copay assistance programs (CAP). While CAPs are designed to help patients afford high-cost medications, maximizer programs require patients to enroll with a third-party vendor that determines how to stretch this financial assistance across the year. Insurers then set monthly copays to match that amount, but do not apply those payments toward deductibles or out-of-pocket maximums
“Copay maximizers and AFPs are, in theory, designed to maximize the use of copay and charitable assistance programs and minimize out of pocket costs,” DuVal explains. “So, what’s the issue? These programs still create barriers, requiring patients to deal with third-party companies to access their lifesaving medication and in the case of AFPs, taking away options for uninsured patients. Insurers treat this assistance like it’s their own piggy bank, finding creative ways to redirect the funds while refusing to count toward patients’ copays.”
DuVal and THBDF took their work to the Tennessee State Capitol, spending a week speaking with legislators about the negative impact of AFPs and copay maximizers. When it came time for the House Insurance Committee to vote on the bill, DuVal, empowered by his own experience and passion for improving access to care, was one of two individuals to testify during the hearing.
“An AFP profits each time they are able to successfully enroll a patient in an assistance program and restrict our medication from being covered in the first place,” he explained. “If not for these medications, I wouldn’t be here today, but because of them, I’m able to live a happy and healthy life. Anything that places barriers between me and access to my medication is something that is going to be a concern to me, and HB 870 is a step in the right direction for my community.”
The bill passed in a unanimous 17-0 vote after receiving vocal support from numerous committee members. It seemed to the THBDF team that HB 870’s companion bill, Senate Bill 420, was on the fast track to a similar vote, but as DuVal prepared to testify once again, now in front of the Senate Commerce & Labor Committee, a new player had entered the game: the insurance lobby. Within just a few hours of the House Committee hearing, insurance lobbyists began pushing for amendments to SB 420 that would remove the ban on copay maximizers.
The bill’s sponsor, State Senator Shane Reeves, agreed to the amendment, but as it was not filed until an hour before the committee hearing, the vote on the bill was pushed to the 2026 legislative session. Despite DuVal and fellow advocates’ disappointment over the outcome, he says the fight for this legislation, amended or otherwise, does not stop here.
“Moving forward to 2026, we’re hoping to pass an amended version of the bill that would ban AFPs, but would unfortunately still allow copay maximizers,” he said. “At that point, we’ll just be there again later that year or the next year to try to get the copay maximizers banned as well. It’s really an uphill battle, and you always need to stay on your toes and stay vigilant.”
Now entering his second year of the MPH program, DuVal is looking to the future and considering a career in government affairs and advocacy. This summer, he looks forward to digging deeper into these interests while completing his practicum as a corporate affairs intern with BioMarin in San Rafael, CA. A career in these fields, he explains, is deeply tied to his advocacy work; in putting those directly affected in the room where health policy decisions are made, real change can begin to occur. And change, for DuVal, is not simply a goal; it is a lifelong mission.
“I’m always going to remain involved one way or another, and I feel a great deal of responsibility even in my career,” he said. “Many young people with a bleeding disorder may not realize that what life with a bleeding disorder looks like today did not happen by accident, phenomenal advocates who came before people like me in the hemophilia community paved the way. It can be a very fragile ecosystem, and we can’t just sit back and assume that everything is going to be okay.”
Even DuVal’s peers have taken to heart this call for consistent advocacy. In April, several MPH students and staff participated in the Blazin’ for Bleeders 5K, raising $500 to support THBDF. For more information on aiding those affected by bleeding disorders, visit the National Bleeding Disorders Foundation website.