Word From Washington: Too Close for Comfort

April 15, 2025

Massive Layoffs and Budget Bills Pose a Serious Threat to Our Community

This Month’s Update and Community Progress

Thank you to all our community members who came together for Symposium just three short weeks ago! We heard a lot of important questions about understanding how to navigate health insurance coverage and plans, how to get answers on treatment needs and costs, and what the future looks like for treatment with respect to the “bad blood” era of the past. We also gained at least 15 new advocates for our grassroots advocacy network at the event and 25 more since then, all engaged on protecting the community from harmful changes like cuts to Medicare and Medicaid, ending the enhanced Premium Tax Credit, and staffing cuts to the CDC. Please make sure you are connected with your local organization as well as the Advocacy Network to make the biggest impact!

The Administration Takes the Wheel

As many of you are likely aware, these past few weeks have been filled with wild swings in the economy and in public policy, all driven by a Presidential Administration laser-focused on accomplishing its goals as quickly as possible.

The Budget and Medicaid

As the President seeks to rekindle American manufacturing and push money into the government’s pockets through tariffs, Congress continues to work to pass a budget resolution and meet the President’s desire for one “big, beautiful bill”. It’s worth noting that the significant proposed budget reductions to programs and government funding are primarily driven by continued tax cuts championed by a bicameral Republican majority, as it seeks to advance a top-down economic policy and reduce what it argues is ‘waste, fraud, and abuse’ in the federal government.

After the Senate passed its own resolution on April 5, the House had to return to the drawing board to try and compromise between both chambers. The Senate resolution would seek $1 billion in cuts to the Senate Health Employment, Labor, and Pensions (HELP) Committee funding, with increases to Finance Committee spending of $1.5 trillion, which oversees Medicaid funding by the Senate. This is in stark contrast to the House resolution calling for $880 billion in cuts to funding from the Energy and Commerce Committee, which oversees Medicaid funding by the House.

On Thursday, April 10, the House voted to approve its modified budget resolution, bringing a final compromise to the table. With all but two Republican House members (Rep. Massie of KY and Rep. Spartz of Indiana) voting “No”, party unity remains a major driving force in advancing the proposed cuts. Even the holdouts have called for more significant cuts than proposed, arguing that it will continue to balloon the federal deficit. Roughly a dozen House Republicans flipped their “No” votes after receiving confirmation from the Senate that they would be pursuing at least $1.5 trillion in spending reductions.

As of this publication, the current resolution sets aside a portion of the Reserve Fund for a deficit-neutral protection of Medicare and Medicaid; however, this does not still mean that major cuts are not still on the table, just that any changes to these programs cannot exceed a net-zero increase on the deficit. It’s essentially a way of saying, “We’ll deal with potential cuts later so that we can keep the current budget resolution process moving.”

The Enhanced Premium Tax Credit and the ACA

A major focus of our policy efforts is maintaining the enhanced Premium Tax Credit (ePTC) for healthcare coverage affordability and access. Originally created as a regular tax credit under the Affordable Care Act (ACA) to help lower-income families obtain coverage, it was expanded in recent years to help Americans obtain coverage during the Covid-19 pandemic and has remained in effect since then, helping more middle-class Americans remain able to pay for rising health plan premiums. Without these credits, premium payments would have been 93% higher in 2024, and an estimated 3.8 million people would lose coverage. Some areas could see increases in premiums of over 300%, or more than $4000, based on current available data.

These enhanced tax credits have helped 3-4 million more Americans obtain and afford health insurance, including many in the Bleeding Disorders community, but Congress must choose to extend them for 2026. Since most states have been working on their budgets for next year, knowing whether the credit will be extended is vitally important. It remains a key item that could be cut within the budget reconciliation process, and while Congress technically was supposed to pass the budget by April 15, they have instead gone on recess through April 25 without coming to an agreement.

Unfortunately, there’s more; if the ePTC is not renewed for next year, a bad situation would get even worse when combined with a 2025 Marketplace Integrity and Affordability Proposed Rule that would impose significant barriers to obtaining coverage, including, but not limited to:

Required pre-enrollment verification for special enrollment periods,
Requiring denied eligibility for advanced premium tax credit payments if a person fails to file their taxes and verify eligibility for a given year,
Reduces the window for Open Enrollment,
Eliminates the special enrollment period for people with an annual income below 150% of the federal poverty level, and
Revises the premium adjustment percentages calculations,
Eliminates fixed premium amounts based on income and payment thresholds (currently capped at 8.5% for eligible enrollees), and,
Prevents individuals from determining eligibility through self-attesting that their income will be a certain amount for the coming year.

You can use this calculator to determine the impact of expiring ePTCs on you and your family, and we have a way for you to take action on this right now! Stay tuned for more calls to action to urge Congress to protect the tax credits in the coming days!

The Tariffs

Wide-ranging tariffs were announced for many nations around the world, which were then placed on pause (with China as an exception) for at least 90 days. However, one item the Trump Administration is still pursuing is tariffs on pharmaceutical imports, which could create major disruptions in global pharmaceutical supply chains and increase prescription costs for consumers. The stated goal of these tariffs is to push companies to return production to the United States, which remains in hot debate as to whether it will work or not.

Cuts to CDC Services – What Happens Next?

As part of President Trump’s “Make America Healthy Again” initiative, which he is working on alongside Robert F. Kennedy, Jr. (RFK, Jr.), his Secretary of Health and Human Services, mass restructuring of the federal agency has begun, including the layoffs of tens of thousands of federal employees. On April 1st, a Reduction in Force (RIF) abruptly dismantled the CDC’s Division of Blood Disorders and Public Health Genomics and all branches – Blood Disorders Surveillance and Epidemiology, Hemostasis Laboratory, and Public Health Genomics. HFA has raised significant concerns because these cuts threaten the safety of people with bleeding disorders and impact blood supply safety monitoring that has protected Americans since the “bad blood era” of the 1980s. Our critical concerns on impacts are as follows:

Threat to Public Health Surveillance

The Division maintained essential national surveillance of bleeding disorders through Community Counts, documenting critical information about joint disease, comorbidities, and treatment outcomes.
Without this surveillance, we lose our ability to track disease progression, treatment effectiveness, and emerging complications in real-time.
This data helps clinicians provide evidence-based care and allows researchers to develop improved treatments.

Loss of Laboratory Services

CDC provided specialized inhibitor testing services crucial for patients receiving factor replacement therapy.
Rural and underserved communities rely disproportionately on these CDC laboratory services, deepening health inequities.
Inhibitor development can render treatments ineffective and significantly increase treatment costs.

Compromised Blood Supply Safety

The CDC’s monitoring for blood-borne pathogens (HIV, Hepatitis, Zika, Ebola) in the national blood supply is now severely compromised because the loss of inter-department communication and collaboration.
This surveillance system was established following the devastating “bad blood era” when thousands with bleeding disorders were infected with HIV and Hepatitis through contaminated blood products.
Without proper monitoring, we risk repeating history’s tragic mistakes.

No Transition Plan

The abrupt RIF came without apparent planning for how these critical public health functions will continue.
Only two staff members remain, making functional operations impossible.
Decades of institutional knowledge and expertise are being lost overnight.

During an urgent mobilization call along with several of our national partners and 275 members of the community, we promised to provide detailed guidance and a one-page leave-behind in the coming days for you to utilize when engaging with members of Congress on this vital issue and help us them how critically important this work is for our community. While it’s been reported that RFK, Jr. said, “we’re going to do 80% cuts but 20% of those are going to have to be reinstalled because we’ll make mistakes,” it remains in question whether these programs and divisions within the CDC will be reinstated as part of those ‘mistakes,’ or if there are any plans to recreate them under a new structure moving forward.

Your Role in Our Continued Work

HFA’s efforts need amplification from your stories to protect and empower the entire bleeding disorders community. Raise your voice to be heard with HFA today by:

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!