On January 26–27, over 20 advocates from across Virginia gathered in Richmond for our annual Richmond Days event in partnership with the Hemophilia Association of the Capital Area (HACA). People of all ages came together to meet with state legislators and discuss two important issues affecting the bleeding disorders community: protecting protecting Medicaid expansion and raising concerns about Prescription Drug Affordability Boards (PDABs).
Advocates arrived on Sunday evening, January 26, for a casual dinner and training session. They reviewed talking points, practiced sharing their personal stories, and got ready to meet with lawmakers. The next morning, they headed to the General Assembly Building, ready to make their voices heard.
An issue of importance was the protection of Medicaid expansion. Since 2018, Medicaid expansion has provided essential healthcare coverage to over 630,000 people in Virginia. However, current budget rules include a “trigger” that would automatically end Medicaid expansion if federal funding drops below 90%. This would cause thousands of people to lose their health coverage, including more than 80 individuals in the Virginia bleeding disorders community.
Advocates asked legislators to support budget amendments that would remove this automatic cut and instead allow lawmakers to review the situation and find ways to keep Medicaid accessible for those who need it.
While making medications more affordable is important, Prescription Drug Affordability Boards (PDABs)/HB 1724 raises concerns about access to essential treatments. The proposed Upper Payment Limit (UPL) could make it harder for people with bleeding disorders to get the life-saving treatments they rely on—especially since there are no generic alternatives for these medications. Advocates stressed that patients must be included in decision-making when policies like this are being developed. If patient voices are ignored, the results can have unintended consequences and harmful policies that don’t fully consider the needs of people with rare diseases.
Richmond Days continues to show how powerful advocacy can be. Thank you to everyone who participated! Your dedication makes a difference. If you couldn’t attend Richmond Days, there are still ways to get involved. Contact Kelly Waters at 804-740-8643 or info@vahemophilia.org for more information.
