HACA's annual education event for people with von Willebrand disease took place a little earlier this year, on Saturday, April 12, at the Stacy Sherwood Center in Fairfax, VA. 

This year we had two amazing presentations: the genetics of vWD led by Dr. Claudio Sandoval of Octapharma, and a look a new subcutaneous therapy in trials with Dr. Chuka Didigu of Star Therapeutics. 

Dr. Sandoval talked about the genetic inheritance of vWD and how that works, its impact on the family and family planning, an overview of vWD and the importance of testing other relatives in the family. Dr. Didigu presented information on an investigational subcutaneous prophylactic treatment for vWD that Star Therapeutics currently has in clinical trials. 

Thank you to our event sponsors: CSL Behring, Octapharma, Star Therapeutics and Takeda. 

By Ann Kendall and Elsa Kendall

On April 17, a small and mighty group of advocates organized by NBDF gathered to meet with congressional staff to discuss key issues that women and girls with bleeding disorders face in obtaining diagnosis and treatment.

Importantly, discussions also centered on recent drastic cuts and reorganizations to agencies that we all rely on as a community, including the dissolution of the CDC’s Division of Blood Disorders and Public Health Genomics. Uncertainty remains around HRSA funding of our HTC network, and cuts at the FDA which will undermine the inclusion of women in research as well. These issues are universal – and while our group met with staff members from both sides of the aisle, with the level of rapid change taking place right now, the path forward is not clear for coalition building.

Our time to take action is now to ensure access to diagnosis, treatment and monitoring by asking each of our elected officials to restore funding for these critical programs and offices. 

Special thanks to fellow HACA advocates Steve Long and the Artemis Group’s Miriam Goldstein, NBDF’s Phil Gattone and Nathan Schaefer for putting together this advocacy opportunity. For more information on current issues, go to NBDF’s or HFA’s news pages, or follow NBDF, HFA and HACA on Facebook, Instagram and LinkedIn.

Thank you, Ann and Elsa, for representing HACA and participating in this advocacy event! 

On April 1, the US Department of Health and Human Services (HHS) sent termination notices to an estimated 10,000 employees, carrying out its previously-announced plan to reduce staff and reorganize its divisions. One of the many HHS offices that was impacted was the Division of Blood Disorders and Public Health Genomics (Division) at the Centers for Disease Control and Prevention (CDC). According to reports, all but two Division staff were placed on administrative leave, with termination expected at the end of 60 days.

The CDC cuts are of particular concern to our community. The Division of Blood Disorders’ work traces back to the 1980s’ tainted blood crisis, when CDC investigators were the first to discern and warn of HIV’s transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities – including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its “Community Counts” program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community.

It's not too late to reach out to your federal lawmakers to ask them to save these programs. If you attended Washington Days in March, reach out to the lawmakers or staffers you talked with. If not, you can find your representative by clicking here and your senator by clicking here. 

A sample script to use on a call or via email: 

I am [calling/emailing] as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the hemophilia programs are housed. These programs: 

Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments.

Provide funding for education and outreach to increase patient and provider understanding of hemophilia.

Help to protect the safety of our nation’s blood supply. 

I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program.  

On Saturday, April 26, despite pouring rain, heavy traffic and Metro breakdowns, several HACA members gathered at the Muse Paintbar in Arlington, VA, for a men's group gathering. The instructor led the participants in creating a beautiful sunset painting to take home. 

Thank you so much to DrugCo Health for sponsoring the program!  

The deadline for this year's George and Linda Price Scholarship is coming up on June 1.The Price Scholarship is offered every year to help with college, graduate school and trade school expenses. The application for the 2025-2026 school year available on the HACA website. 

This scholarship, created in the mid-2000s, was named to honor the late George Price and his wife, Linda, who were both involved with the chapter and served as board members after their son was born with hemophilia B. George passed away in 2015, but Linda is still actively involved in the chapter and volunteers her time to score scholarship applications for HACA!  

Click here for more information on the Price scholarship. 

 HFA will be hosting its first-ever Black Voices Summit July 12-13 in Greenville, SC, and are looking for participants. 

The gathering is created by and for Black-identified and African American members of the bleeding disorders community. HFA will be bringing together voices nationwide to speak on healthcare access barriers and how to push for change. Travel and hotel costs will be covered by HFA for selected participants. Space is limited, and not all applicants will be accepted. Deadline to apply is Friday, May 23. 

Click here for more information on the event and to fill out the application. Click here to email HFA with any questions. 

Want to register for a HACA event? You can do that through our weekly Chapter Connection email, or you can go here on the HACA website to check out the calendar of events.