2026 B the Voice Advocacy Summit

Thank you to everyone who joined us in Washington, D.C., for the Coalition for Hemophilia B's first-ever B the Voice Advocacy Summit.

Over three inspiring days, community members strengthened their advocacy skills, connected with one another, and met with lawmakers to share their personal stories and advocate for policies that improve the lives of people living with hemophilia B. Together, our voices made an impact. We're grateful to everyone who helped make this inaugural event a success.

New MASAC Guidelines: Iron Screening for Bleeding Disorders

MASAC has released the first-ever recommendations for screening iron deficiency in people with inherited bleeding disorders. Because ongoing blood loss increases the risk of low iron, MASAC now recommends annual screening for everyone, regardless of age, sex, diagnosis, or severity.

Additional testing is advised during high-risk times, including after significant bleeds, surgery, pregnancy, heavy periods, or if you have a history of iron deficiency or take acid-reducing medications.

The guidelines define ferritin below 50 ng/mL as iron deficiency and stress that treatment should begin promptly, even before anemia develops. Treating low iron can improve energy, mood, concentration, and overall quality of life.

Take charge of your health: At your next appointment, ask your healthcare team, “Can you please check my iron and ferritin levels?”

Read the MASAC Guidelines →

Be Biopharma has ended its study of BE-101

Be Biopharma has ended its Phase 1/2 BeCoMe-9 study of BE-101, an investigational cell therapy for hemophilia B. According to a federal clinical trials database and confirmed by the company, the trial was discontinued as a strategic business decision and was not linked to any safety concern. The study had enrolled five of an anticipated 24 patients before it was halted.

BE-101 was being developed by Cambridge, Massachusetts–based Be Biopharma. The therapy used a patient’s own cells, modified outside the body to produce clotting factor IX (FIX), with the potential to be re-dosed if needed. The company has no other listed trials for BE-101.

The decision was tied to business and market factors rather than to the safety of the treatment. 

CHB will continue to follow developments across the hemophilia B research pipeline and keep the community informed as new information becomes available.

A word from Dr. Clark

As people with hemophilia live longer, researchers are beginning to better understand how aging-related conditions affect our community.

Read Dr. Clark's Article →

FDA Approves Expanded Use of Pfizer’s HYMPAVZI®

U.S. FDA Approves Pfizer’s HYMPAVZI for the Treatment of Two Additional Hemophilia A or B Patient Populations with Significant Medical Need

The U.S. Food and Drug Administration (FDA) approved an expanded indication for Pfizer’s HYMPAVZI® (marstacimab-hncq), a once-weekly subcutaneous therapy.

When HYMPAVZI was first approved in 2024, it was indicated for people with hemophilia A or B without inhibitors. Today’s FDA approval expands its use to two new groups:

• People ages 12 and older with hemophilia A or B who have inhibitors

• Children ages 6 to 11 with hemophilia A or B, with or without inhibitors

For our community, one milestone stands out: HYMPAVZI is now the first subcutaneous, non-factor therapy available to children ages 6 to 11 living with hemophilia B.

For families managing bleeding episodes from an early age, and for those living with inhibitors, expanded treatment options are always welcome. Treatment decisions are personal, and we encourage you to discuss this option, including its important safety information, with your hematologist or treatment center.

Pfizer’s full announcement ->

Medicaid Patient Guide

Changes to Medicaid could affect access to coverage, treatment, infusion services, and specialty care for some people with Hemophilia B.

The Coalition for Hemophilia B has prepared a patient guide explaining what may be changing, who may be affected, and what steps you can take now to help protect your coverage.

Key action steps include:

✅ Update your contact information with your state Medicaid office

✅ Open and respond to every Medicaid notice right away

✅ Begin gathering documentation of your Hemophilia B diagnosis and treatment needs

✅ Contact your HTC, hematologist, or care team if you may need an exemption

✅ Reach out for help if your coverage is disrupted

CHB is actively advocating for bleeding disorders to be recognized as serious or complex medical conditions that may qualify for exemption from work reporting requirements.

Read the Medicaid Guide ->

Legislation Updates:

What's Moving in Washington

Earlier this year, the U.S. House passed a five-bill funding package covering the Department of Health and Human Services and several federal health agencies — with provisions that directly affect families living with rare and chronic conditions.

A few highlights for our community:

• NIH funding rose to $48.72 billion, a $40 million increase over the prior fiscal year.
• CDC saw an overall $100 million cut, but the Bleeding Disorders Programs were level-funded at FY2025 levels — preserving the research, surveillance, and community programs we rely on.

Two pediatric priorities also made it into the package: the Accelerating Kids' Access to Care Act, which speeds specialized care for children on Medicaid and CHIP, and the Give Kids a Chance Act, which expands early access to therapies and renews the Pediatric Priority Review Voucher Program.

On the copay accumulator front, momentum continues. With New Jersey's recent law, 26 states plus D.C. and Puerto Rico now ban copay accumulators — ensuring manufacturer assistance counts toward your deductible and out-of-pocket maximum. Advocates are still pushing for federal protection through the HELP Copays Act.

Bottom line: stay informed, and keep making your voice heard.

Scholarships Are Open!

Women's Retreat

Sept 17-20, 2026

Orlando, FL

• Deadline to apply - June 30th
• Safe, supportive environment
• Learn from experts
• Connect with women who understand
• Travel scholarship included

Men's Retreat

October 22-25
Orlando, FL

• Deadline to apply - June 30th
• Safe, supportive environment
• Learn from experts
• Connect with men who understand
• Travel scholarship included

Fall Meetings on the Road

Meetings on the Road are educational, supportive, and free for all members who attend. Gas and toll expenses will be reimbursed, and meals will be provided.

Connect with your hemophilia B community! These events will take place all over the country, so find the one closest to you and come along.

This is a family-friendly event, so bring your loved ones and create new memories with your community. Whether you're new or a veteran, this gathering is for you.

Albuquerque, NM: September 12

Salt Lake City, UT: September 26

Portland, OR: October 10

Burbank, CA: November 7

Hear Directly From Someone Who Has Received Gene Therapy and Learn More!

July 23: Come hear from an expert physician on gene therapy for hemophilia B and listen to a firsthand account from someone who has received the treatment. This is your chance to learn and ask any questions you may have!

Speakers: Andrea Buxton, MSN, APNP, FNP-C (HCP Speaker) & Chip (Advocate Speaker)

Gene Therapy Support Network

For men with hemophilia B over 18.

Hosted by Bobby Wiseman

If you are a male with hemophilia B who is currently on gene therapy or thinking about gene therapy, we invite you to join our private group discussion.

You will hear directly from a member of our hemophilia B community who has experience with gene therapy. He will share his story and answer your questions in a safe, supportive setting.

Dinner vouchers will be provided.

Upcoming Dates


• July 7
• August 4
• September 8

Sign up and let us know you’re coming.