On Thursday, March 6th, I had the incredible opportunity to join 384 members of the bleeding disorder community in Washington, D.C. for Washington Days with the National Bleeding Disorders Foundation. This was my second year attending as a representative of Kansas, and it was truly an unforgettable experience! 

The day began with an inspiring speaker who shared their powerful journey to finally being diagnosed with von Willebrand Disease. Hearing their story was a motivating way to start the day and reminded all of us why our advocacy is so important. It fueled our energy to head to Capitol Hill and share our own stories with our senators and representatives. 

Once again, I met with the offices of Senator Roger Marshall, Senator Jerry Moran, and Representative Sharice Davids to discuss the importance of cosponsoring the HELP Copays Act — a crucial piece of legislation aimed at ending harmful insurer and pharmacy benefit manager (PBM) practices that prevent patients from accessing the life-saving medication they need. The HELP Copays Act was reintroduced in Congress for the third time on March 4th. It’s a bipartisan bill sponsored by Senator Roger Marshall and Senator Tim Kaine, and it’s one step closer to making a real difference for patients like my son who has von Willebrand Disease. 

In addition to advocating for the HELP Copays Act, we asked our representatives to continue supporting federal programs that directly benefit the bleeding disorders community, such as funding for Hemophilia Treatment Centers, the CDC, and NIH. We also urged them to reject any health care cuts or policy changes that could make it harder for Americans to obtain and maintain affordable health insurance coverage. 

Being able to speak on Capitol Hill about issues that impact our community so deeply is something I’ll never take for granted. I’m proud to stand alongside many other passionate advocates. I’ll never stop fighting for better care, better access, and better resources for those living with bleeding disorders. 

I love this community, and I will continue to use my voice to make sure we’re heard!