Pat DeRatto, VHF member and recipient of VHF travel grant for Washington Days
Once a year, in March, representatives from across the country join with the National Hemophilia Foundation for Washington Days to make our voices heard. This year was no exception. A large number of Virginia Hemophilia Foundations members and nearly 400 people from around the country joined together to speak to our Congresspeople and Senators about the issues members of the bleeding disorder community face.
Some of the issues we discussed this year included continued funding for the agencies that keep our Hemophilia Treatment Centers running: National Institute of Health (NIH), Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA). We also educated our representatives on what the Copay Accumulator Adjustor Programs do and how they impact not just our lives, but the lives of thousands of Americans living with illnesses/disorders that require high cost medication. Legislation has been introduced in Congress, HR830, that clarifies the Affordable Care Act’s definitions for cost sharing and closes an essential health benefit loophole.
We spent our day, Thursday, March 9th meeting with the representatives or their staff to provide this vital information. The work continues now that we are home with continued contact. Please reach out to the Virginia Hemophilia Foundation if you need additional details on contacting your Congressperson or Senator. Making our stories personal to them keeps us in the forefront of their minds when legislation is being discussed and voted on that can impact our lives and lives of our families.