Word From Washington: The Shutdown, Health Insurance, and Protecting Our Community

By Adam Alver, Policy Director

A New Take on Word From Washington

For this month’s article, we’ve made some changes. We know our community includes people with all kinds of backgrounds. Some follow every twist in Washington, and others just want the key takeaways. This update is written to be clear and easy to follow, but we’ve also included links and details for those who want to dig deeper.

What’s Happening Now with Health Insurance and the Government Shutdown

Since October 1, the U.S. Government has been shut down. This happened because Democrats and Republicans couldn’t agree on a plan for discounts to keep helping people pay for their health insurance. These discounts are called “enhanced premium tax credits,” or ePTCs.

Premium tax credits were first added to the Affordable Care Act to help more people afford health insurance. During the COVID-19 pandemic, Congress made these credits available to more people so they could get help paying for their health plans. But these extra discounts were only meant to last for a short time. If Congress doesn’t renew them, they will end on December 31, 2025, and fewer people will qualify for help paying for health insurance.

Recently, Congress passed the One Big Beautiful Bill Act (OBBBA), as we’ve written about before. Democrats wanted to include the ePTC help in this law, but it wasn’t added. Now, they’re asking Republicans to work with them to find a way to keep health insurance affordable for millions of Americans in 2026.

Democrats said they wouldn’t agree to any plan to keep the government running unless the ePTCs were extended or replaced with something similar. That’s one reason the government shut down.

Some Republicans don’t want to renew the ePTCs. They say the extra help was only supposed to be temporary. Others say they don’t agree with how Democrats want to use the money. The Speaker of the House, Mike Johnson from Louisiana, sent Republican lawmakers home, which has stopped talks between the two parties. This has made it hard for both sides to work together and reopen the government. Until both sides reach an agreement, the government will stay closed, and the future of health insurance for millions of Americans remains uncertain.

At HFA, we support the ePTCs. We believe everyone should be able to get health insurance they can afford, especially people with bleeding disorders who need continuous coverage to get regular care. Premiums are already going up because of reasons besides the ePTCs, and some patients are already getting letters saying their health insurance costs will go up a lot next year. We’ve included a tool here you can use to see how much your costs might change in 2026. There are also tables below showing average cost increases for individuals and families.

Individuals

Families

Getting Health Insurance Through Healthcare.gov

Starting November 1, you can sign up for health insurance at Healthcare.gov. If you turned 26 this year and don’t get health insurance through a job, this might be your first time buying your own plan. Healthcare.gov is a good place to start looking for coverage.

You have until January 15 to sign up, but it’s best to do it early. If you sign up by December 15, your insurance will start on January 1. If you wait and sign up between December 16 and January 15, your coverage won’t begin until February 1, 2026.

If you miss the open enrollment period, you might still be able to get insurance through something called a Special Enrollment Period. This happens if you go through a big life change, like turning 26, moving to a new place, or losing your job. You can check online to see if you qualify.

When you use Healthcare.gov, the website will check to see if you can get help from programs like Medicaid or the Children’s Heath Insurance Program (CHIP). These programs help people with low income get health care.

Some people with bleeding disorders like hemophilia might be able to get Medicare, especially if their condition is very serious or makes it hard to work. Most people don’t get Medicare until they’re 65, but there are exceptions. You can visit Medicare.gov to learn more or talk to someone there who can help.

Medicare has a different deadline. If you’re signing up for Medicare, you need to do it by December 7.

Advocating for Continuous Health Coverage and Bleeding Disorder Protections

Treating bleeding disorders can be very expensive, and our community members need continuous coverage for their whole lives, no matter where they get it. If health plans become too costly, many patients will still have to try to pay for them, even if it’s hard. There are programs that offer help, but they aren’t meant to replace regular insurance. Our community shouldn’t have to depend on donations just because the government won’t make sure people can afford their healthcare.

HFA and other groups, like the National Bleeding Disorders Foundation, Hemophilia Alliance, Coalition for Hemophilia B, and many state chapters including our Member Organizations, have been working all year to get Congress to keep the special tax credits that help people pay for insurance. Many of you have already spoken up through HFA’s Advocacy Network, and we’ll keep giving you chances to share your voice in Washington, D.C. so lawmakers understand how losing coverage could hurt people. You can tell Congress today how important affordable health insurance is with our action link here! 

We Need Your Voice – Restore Historic Bleeding Disorder Programs and Blood Supply Safety

Earlier this year, we shared that the CDC’s Division of Blood Disorders no longer has staff, and the services it used to provide are not available right now. We’ve also learned that an important group called the Advisory Committee on Blood and Tissue Safety and Availability (ACBTSA) was shut down and hasn’t been brought back.

HFA is working hard to bring back these programs. They were created to protect people with bleeding disorders, and our community has spent over 50 years fighting for them. We’ve hosted organizing calls and sent out action alerts so you can tell your lawmakers why these programs matter. We’re also trying to learn more about what happened and how to fix it.

We believe that if lawmakers act now, they can help protect children and families from serious health problems, delays in care, and even disability or death. More than 4 million Americans use blood or blood products each year, including many in our community. That’s why we reminded Congress this year about its long history of supporting people with bleeding disorders.

On September 29, HFA held its yearly Advocacy Retreat. Twenty-five community member advocates from across the country scheduled meetings to meet with their members of Congress to talk about what our community needs. We’re very thankful to everyone who joined us. Your efforts are making a real difference. 

During our retreat, advocates sent letters to members of Congress who had supported the Ricky Ray Act. This law created a special fund to give money to families who lost loved ones during the “Bad Blood” eta, when many people with bleeding disorders were infected with HIV or hepatitis from unsafe blood products. It was one of the largest compensation programs in US history. In the letters, we asked those lawmakers to once again stand with our community and help bring back the programs and protections we need today.

Right now, after advocates met with lawmakers, HFA is working on something called a “Dear Colleague” letter, a message that lawmakers send to each other to ask for support on an issue. In this case, the letter is addressed to Robert F. Kennedy, Jr., the Secretary of Health and Human Services (HHS), and asks him to bring back these important programs. Some lawmakers we met said they’re interested in helping with this. Once we find someone to lead the effort, we’ll ask you to contact your lawmakers again and help get more support.

As we said during the retreat, advocacy never stops. Even if you couldn’t join us this year, staying involved helps us move forward, and it might even help you join us in Washington next year!

Thank you to everyone who continues to speak up and help protect people with bleeding disorders.

Your Role in Our Continued Work

HFA needs your help to make a bigger impact. When you share your story, it helps protect and support everyone in the bleeding disorders community. Raise your voice to be heard with HFA today by:

• Joining HFA’s Advocacy Network,
• Protect Access to Life-Saving Care—Tell Congress to Extend the Enhanced PTC!

Also, be sure to stay up to date with our next Word from Washington post and State of the States posts here, and encourage your friends, family, and local bleeding disorders chapter to support us in this work!