Word From Washington: Election Day and Your Voice In Advocacy

By Adam Alver, Policy Director

Election Day – An Action of Advocacy

Today is Election Day! Across the country, Americans are choosing the leaders who will make decisions about health care, federal funding, public health, and oversight.

Those decisions are critically important for the bleeding disorders community. They affect whether people can keep their health coverage, whether treatment centers have the support they need, and whether national programs can track health trends and respond to safety concerns.

Voting is a very important way to make your voice heard, but it is not the only way.

Over the past several months, bleeding disorders advocates have met with congressional offices, sent hundreds of messages, shared personal stories, and asked lawmakers to protect the national programs our community relies on. That work is producing attention and movement and will continue after Election Day.

Advocates Brought the Message to Congress

In September, advocates participating in HFA’s annual Advocacy Retreat completed nearly 100 congressional activities, including 59 meetings and 39 office drop-ins.

They carried two connected messages to Capitol Hill:

• Fund the national hemophilia treatment infrastructure

• Return the CDC’s blood disorder staff to work.

Advocates asked Congress to protect funding for the federal hemophilia program within the Health Resources and Services Administration, or HRSA. They also asked lawmakers to exercise oversight of the CDC’s Division of Blood Disorders and Public Health Genomics and seek a clear plan for restoring its staff and programs.

Congressional offices responded in several important ways. During one meeting, Senate staff contacted the Department of Health and Human Services (HHS) directly. Another office confirmed that earlier outreach from constituents had already caused staff to begin tracking the issue. Several offices expressed interest in additional information, letters, or follow-up. Most significantly, one office committed to pursue both issues through appropriations language and direct engagement with CDC. HFA remains in contact with that office and will continue following up on that commitment.

These results did not happen because policymakers suddenly discovered these issues on their own. They happened because advocates spoke up.

The same is true of HFA’s national campaign to restore the CDC Division. To date, 226 advocates have sent 699 messages to Congress, and several have held in-district meetings with their congressional offices. Each message and action tells lawmakers that their constituents are paying attention and expect action.

The CDC Division Still Needs Its Staff

The CDC’s Division of Blood Disorders and Public Health Genomics has supported the bleeding disorders community for decades. Its work has included national health monitoring, laboratory testing, inhibitor testing, public data, and stewardship of biological samples collected over many years.

As we’ve previously reported, in April 2025, most Division staff were placed on administrative leave as part of broader staffing changes at HHS. More than a year and a half later, many of those experts remain away from their work.

How HFA Has Continued to Take Action

Some congressional offices have suggested that the community should be patient. Patience may be reasonable when there is a public plan, a timeline, and meaningful progress. It cannot replace oversight or answers. Efficiency is also a worthy goal. But it is not efficient to keep experienced, congressionally funded staff away from the programs Congress funded them to operate.

A federal court order in New York et al. v. Kennedy et al. applies to the National Center on Birth Defects and Developmental Disabilities (NCBDDD), which houses the Division. The order stops HHS from firing the affected employees while the case continues. Unless they choose to leave, HHS must keep paying them under administrative leave. The court order does not stop HHS from putting them back to work.

HHS has already cancelled termination notices and returned employees to work in other parts of the Department. It can do the same for the Division’s blood disorders experts.

On September 4, HFA joined the American Society of Hematology (ASH) and 51 other organizations in a letter to new CDC Director Dr. Erica Schwartz. The letter asked CDC to restore the staffing, leadership, and expertise needed to operate the Division; assess disruption to its programs; preserve continuity; and work with community partners.

HFA also provided detailed information ahead of an October 28 stakeholder meeting organized by ASH. Our response described which functions appear to be continuing, which remain limited, and where the community still lacks clear answers.

A Funding Gap Exposed a Structural Problem

The CDC is not the only part of the national bleeding disorders infrastructure that experienced disruption this year.

HRSA supports the Regional Hemophilia Network through a funding category called Special Projects of Regional and National Significance, or SPRANS. This funding helps connect hemophilia treatment centers across the country and support the National Hemophilia Program Coordinating Center, or the NHPCC.

Earlier this year, HRSA informed ATHN that it could not provide the NHPCC’s funding during the rest of 2026 because Congress had not provided enough funding for SPRANS projects.

At the same time, Congress had increased the amount of SPRANS funding directed to named projects without increasing the total program enough to cover both those commitments and existing HRSA programs. That left less funding available for programs like the national hemophilia infrastructure.

HRSA prioritized projects providing the most direct patient benefit, including the grants supporting the regional network and hemophilia treatment centers. This prevented an immediate disruption to treatment center services. Even so, the federal funding gap remains unresolved, and some national coordinating activities are still temporarily offline, highlighting why congressional goodwill alone is not enough.

Support Versus Commitment

Congressional report language within funding bills has expressed support for the hemophilia program, but supportive words without a protected funding amount did not prevent this year’s shortfall. When resources became limited, the program lacked the protection given to projects listed in the set of congressionally directed programs in SPRANS.

Because of this, advocates also asked Congress to add “Hemophilia” to the table of required funding for SPRANS programs, maintained at $5 million from prior years, and include clear language supporting both the Regional Hemophilia Network and the NHPCC.

Congressional set-asides are funded before HRSA distributes the remaining SPRANS dollars among other projects. A protected hemophilia program would address the current shortfall and provide greater security for the national network, even if Congress does not fix the larger funding problem at the same time.

This is not a request to create a new program; it is a request to secure a long-standing public investment each funding cycle.

One National Infrastructure

The CDC Division, hemophilia treatment centers, regional networks, and the NHPCC are not interchangeable.

Treatment centers deliver specialized care. Regional networks connect centers and support consistent services. The NHPCC provides national coordination and shared tools. The CDC supplies national monitoring, public data, laboratory expertise, and long-term public stewardship. Each part contributes something the others cannot fully replace.

National systems cannot run indefinitely on temporary extensions or external funding. They need skilled staff, dependable funding, clear rules, and public accountability.

That is the broader lesson behind both of HFA’s September advocacy requests: fund the infrastructure and staff the programs responsible for operating it.

Continuous Coverage Remains an Ongoing Effort

Alongside the focus on bleeding disorders programs, HFA is continuing to work with our national partners on the Medicaid changes that were created under the One Big Beautiful Bill Act (OBBBA).

These changes include new work reporting requirements that could affect people with serious or complex health conditions. Implementation will determine whether states recognize medical needs, explain exemptions clearly, and prevent eligible people from losing coverage because of paperwork or unclear rules.

This work is connected to the same basic principle: public programs must operate reliably, provide continuous coverage for lifelong disorders, and ensure clear pathways for people to receive the care for which they qualify. HFA will continue working with national partners to monitor these changes and share information with the community as implementation moves forward.

Why Voting Matters

HFA does not support or oppose political candidates, and we will never tell you who should receive your vote. We will, however, tell you that voting matters.

The people elected to Congress will decide how much funding these programs receive. They will decide whether to ask questions when federal programs stop working. They will oversee Medicaid, CDC, HRSA, and HHS. They will also decide which community concerns receive attention, and which will be ignored.

When you vote, you are not only choosing a candidate. You are helping decide who will hold those responsibilities.

If you are eligible to vote and have not already done so, make a plan. Confirm your polling location, hours, and identification requirements using official voting information from Vote.gov.

Our community has a powerful voice which has changed history before, just like you can through your vote today. You are a constituent, taxpayer, worker, caregiver, family member, and community leader. You have both the right and the responsibility to participate.

What Comes After Election Day

Advocacy does not end when the polls close.

After the election, HFA will continue tracking developments at CDC, HRSA, HHS, and Congress. We will continue seeking answers about the Division’s staffing and programs. We will monitor the SPRANS appropriations process and the request for protected funding for bleeding disorders programs. And, we will continue to seek opportunities to strengthen the national systems of care for bleeding disorders, including through collaborative engagement with our national partners on the broad range of issues that impact the community.

As those opportunities develop, HFA will share updates and ways for the community to participate. We encourage you to stay up to date through HFA’s Advocacy Hub for ways to take action as part of the Bleeding Disorders Advocacy Network, and to join if you haven’t yet.

Your voice may take different forms at different times. It may be a ballot, an email, a phone call, a meeting, an action alert, or a personal story. No single action finishes the work, but repeated contact keeps these issues in front of decision makers and shows that the community expects results. Sustained attention creates the accountability needed for progress.

The bleeding disorders community has a voice. Election Day is one important opportunity to use it, but it will not be the last.