Word From Washington: A New Year, Similar Policy Fights

By Adam Alver, Policy Director

A New Year, A New Format, and An Important Reminder

In 2026, HFA plans to share one Word From Washington and one State of the States each month, alternating them to keep our readers updated. HFA will also publish special reports, such as last year’s report on rural health.

After the last Word From Washington, HFA is continuing with a simpler and clearer writing style to ensure everyone in the community can follow the issues, including links and sources. HFA will also share action steps to prepare the community to talk to their members of Congress about important issues for people with bleeding disorders. Here is where the community can:

• Contact your members of Congress to extend the enhanced Advanced Premium Tax Credits
• Contact your members of Congress to restore staff for the CDC’s Division of Blood Disorders

HFA also wants to remind the community that the Affordable Care Act and “Obamacare” are the same law. Many people assume they are different, but they are not. At HFA, we call the law by its real name: the Affordable Care Act (ACA).

HFA asks readers to pay close attention when lawmakers talk about “Obamacare” as if it is different from the ACA. This can cause confusion, and it matters when we think about health care policy in the United States. 

Health Insurance Cost Increases in 2026

As shared late last year, Congress debated whether to extend the enhanced Advanced Premium Tax Credits (eAPTCs), which help many people afford their health insurance. Democrats stated the extension had to be included in any government funding bill which led to the longest government shutdown in US history. After several weeks without progress, Democrats agreed to move forward on a funding plan after Republicans promised there would be a vote on the tax credits. Even with that promise, the credits were not extended in 2025, and the cost of health care is still a major issue in Congress.

Early in January, the House of Representatives passed a bill to extend the tax credits for three more years. Seventeen Republicans joined Democrats in voting yes. Those Republicans were:

• David G. Valadao, (CA-22),
• Jeff Hurd, (CO-3),
• Maria Elvira Salazar, (FL-27), 
• Zachary Nunn, (IA-3), 
• Thomas H. Kean, Jr., (NJ-7), 
• Nick LaLota, (NY-1), 
• Andrew R. Garbarino, (NY-2), 
• Michael Lawler, (NY-17), 
• Max L. Miller, (OH-7), 
• David P. Joyce, (OH-14), 
• Mike Carey, (OH-15),
• Brian K. Fitzpatrick, (PA-1), 
• Ryan Mackenzie, (PA-7), 
• Robert P. Bresnahan, Jr. (PA-8),
• Monica De La Cruz, (TX-15), 
• Robert J. Wittman, (VA-1), and
• And Derrick Van Orden, (WI-3)

However, the Senate did not move the bill forward. Senators from both parties disagreed about whether the Affordable Care Act might allow funding for abortion‑related services, which has been a long‑standing debate in Congress.

It is not clear if the bill will move again. Since the enrollment deadline for Marketplace health plans has already passed, many Americans are seeing higher monthly premiums in 2026. A recent report showed that 1.4 million fewer people signed up for Marketplace coverage compared to the same time last year. Other reports also showed that health care costs are rising for many families.

Health coverage is essential for our community, and we will continue to push for the extension of the tax credits. We also encourage you to contact your lawmakers and share why this matters to you and your family. You can join the Bleeding Disorders Advocacy Network at HFA to learn how to meet with your lawmakers and connect with other community members who are speaking up.

Government Funding and Bleeding Disorder Programs

As Congress works on the 2026 funding plans after last year’s shutdown, HFA has been watching the funding for hemophilia and bleeding‑disorder programs at the CDC’s Division of Blood Disorders.

For several years, the CDC has received about the same amount of money for key programs, including the Community Counts database. We are glad to see that the newest budget for the Department of Health and Human Services again includes $8.6 million for these programs.

However, the status of the staff and programs within the CDC’s Division of Blood Disorders is still not clear. The Division, along with the Advisory Committee on Blood and Tissue Safety and Availability (ACBTSA), was created after the HIV/AIDS crisis to help keep the blood supply safe. Both were removed or shut down early in the Trump Administration.

Last year, HFA worked with members of Congress to try to reverse a decision that reduced the Division’s staff and to bring back the ACBTSA. This effort stalled when a key Republican lawmaker who had helped pass the Ricky Ray Act years ago pulled back support for a letter urging the Administration to take action.

HFA is renewing this request again this year and will continue pushing for the staff and services to be restored. These programs are critical for people with bleeding disorders, and the federal government has a responsibility to follow through on the funding Congress has already set aside.

If you would like to help, you can contact your elected officials and ask them to protect and restore these important services.

The One Big Beautiful Bill Act and Bleeding Disorders

Last year, Congress passed the One Big Beautiful Bill Act, or OBBBA, and President Trump signed it into law. A major part of the law requires people with Medicaid to prove they are still eligible more often, and to show they are working, volunteering, or going to school. If they do not turn in the required information on time, or if they do not meet the new community-engagement rules, they could lose their coverage.

However, the law makes an important exception. People who are considered “medically frail” do not have to meet some of these new rules. The Secretary of Health and Human Services (Robert F. Kennedy, Jr.) will decide the federal definition of “medically frail.” Some states already have their own definitions, and several of those include people with hemophilia and other bleeding disorders.

This year, HFA will work to make sure that all people with bleeding disorders are protected under this exception in every state.

We also want to remind readers that the OBBBA includes many other changes that could make it harder for people to get health coverage and stay covered. We will continue working with national partners to protect access to affordable, stable, and continuous health insurance for our community.