From Heather Case, Director of Advocacy and Outreach

CHES is closely tracking the policy changes at the Health and Human Service Adminstration which are happening at a fast and furious pace. We know these changes create profound concerns for many in our community. The lack of clarity about the impact is further unsettling.

The call to action for the community is clear: educate yourself on the facts and consider speaking up to protect key assets including the safety of the blood supply, blood surveillance, and inhibitor testing. You can use this link to reach out to your representative and this link to find suggested language.

If you are looking for additional resources, I recommend listening to the 4/11/25 BloodStream podcast. It provides a good overview of the changes and potential impact.

American Society of Hematology (ASH) is using #Fight4Hemophilia on their social media feeds if you want to track updates and add your voice.
Science Impacts org has created a heat map that demonstrates the impact of federal health research cuts. Losses nationally are anticipated as 68,000 jobs and $16,000,000,000 (that's 16 BILLION dollars.) There are links at the bottom of the page that provide additional information about methodology and data sources.
CHES will continue to work closely with other national thought leaders and advocates to connect with congressional champions to present one united voice. Please reach out as needed to each other and to the CHES community.
This edition's video features CHES's Health Insurance session. To watch the ever-fabulous Michelle Rice present click here. As always, there is 24/7 access to all of CHES's webinars by clicking the YouTube icon at the footer of the CHES website.

Let's stay engaged, active, and vocal.
You are not alone!

Heather Case
Director of Advocacy and Outreach

**After the Shock Family Inhibitor Camp - Applications are Open!**
**CHES is the only national non-profit in the bleeding disorder space whose mission continuously offers meaningful, instructive and engaging education for the inhibitor community.**

Current Events re: Elimination of the CDC Division of Blood Disorders and Public Health Genomics
Impact of the CDC cuts
https://www.medpagetoday.com/special-reports/features/115054

Community voices about the current cuts
https://hemophilianewstoday.com/columns/staff-cuts-division-blood-disorders-threaten-community/

Hemophilia Alliance and their policy advisory group, Artemis, has created a resource that outlines the impact of possible Medicaid cuts
https://hemoalliance.org/april-2025-newsletter/#advocacy

Alternate Funding Programs
This is a critical educational resource from the PAN Foundation.
https://www.panfoundation.org/how-alternative-funding-programs-prevent-access-to-medications/

Women and Bleeding Disorders
Type of testing and results for women with hemophilia A
https://www.hematologyadvisor.com/news/hemophilia-osa-csa-essentials-carrier-risk-treatment-risk/

OBGYN update- click on the newsletter to open the full article
https://myemail.constantcontact.com/Check-out-the-latest-OBGyn-News---February-2025-Newsletter.html?soid=1133889887744&aid=x4mwyTGf5gA

Inhibitors
Exclusive SP for Qfitlia (new treatment for hemophilia A or B with or without an inhibitor)
https://www.morningstar.com/news/business-wire/20250414966770/soleo-health-selected-as-exclusive-in-network-specialty-pharmacy-for-qfitlia-a-treatment-option-for-adults-with-hemophilia-a-and-b-with-and-without-inhibitors

This article confirms the safety and efficacy of emicizumab
https://www.hematologyadvisor.com/news/hemophilia-emicizumab-effective-safe-treatment-risk-inhibitor/

Partner Perspective
Partners and spouses are often overlooked. This article offers one perspective on the importance of this relationship and setting it apart from caretaking.
https://hemophilianewstoday.com/columns/my-husband-has-hemophilia-not-like-another-child/

VWD
Pregnancy loss and vwd
https://www.jthjournal.org/article/S1538-7836(24)00627-5/fulltext

The importance of community within the vwd population
https://hemophilianewstoday.com/columns/valuable-reminders-recent-bleeding-disorders-conference/

By Females for Females BFFF
By Females for Females, BFFF, calls are open to any female or those who identify as a female who are 19 years+. We welcome the experience, knowledge and shared space that this group is fostering from females of all ages! The next meeting is Tuesday, May 6th at 8:00 PM ET. To sign up for BFFF news and events, use this link.

Visite la página de Hermanas de Sangre para obtener más información sobre nuestra iniciativa para promover la autodefensa de aquellos que hablan español

Hermanas de Sangre Campaign — CHES Foundation | Rare Bleeding Disorders

CHES Events 2025 SAVE THE DATE!

InhibitCon East: April 4-6, Charlotte, NC - IN THE BOOKS

After the Shock (Family Inhibitor Camp): June 20-23, Lakewood, PA

LadyBugs: August 8-10, Salt Lake City, UT

InhibitCon West: October 3-5, Portland, OR

OneDrop (Ultra-Rare Consortium): November 14-16, Tampa, FL

Applications for 2025 CHES Events open approximately 8 weeks ahead of event date. If you are interested in learning more about CHES's critical in person community educational events in 2025, please visit the CHES Website. Planning for our 2025 events is well underway and we are excited to share education, connections and community with you!