The President’s Budget Proposal: What Does It Mean for our Rare Disease Community?

Last Friday, April 2, the White House released the President’s proposed Budget for Fiscal Year 2027. While there is still much we will learn and distill over the coming days and weeks as negotiations on the Hill evolve, we wanted to take this opportunity to provide an overview of the significance of the release of the President’s Budget Proposal and the process that comes next.  

Understanding the Federal Budget Process

President’s Budget Request:

 The President submits a budget proposal in the early spring for the next fiscal year – FY 2027 will start on October 1. This detailed budget proposal to Congress outlines the Administration’s priorities for spending for each agency.  

In addition to top-level spending numbers, most agencies submit a Congressional Justification that highlights the agency’s accomplishments, new and existing strategic priorities, and what will be accomplished with the proposed spending levels. We will provide an update on the Congressional Justifications later this month in the April Rare Report once all of them have been released. 

In most years, the President’s budget request is seen only as a starting point and is largely dismissed by Congress when they begin their process. For example, in the FY26 President’s Budget research for the National Institutes of Health, the Administration proposed cutting the NIH budget $18 billion, however the agency’s budget was approved with a $415 million increase.  

On April 2, the President’s budget request was released. 
The President’s Budget proposes $15.8 Billion in reductions to Health and Human Services (HHS), including significant funding reductions to the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Advanced Research Projects Agency for Health (ARPA-H), and the Health Resources & Services Administration (HRSA). The proposal also includes an increase to the Food and Drug Administration (FDA). 

Our rare disease community has prioritized several federal funding requests to rare disease infrastructure across our federal agencies, including robust funding to the FDA Rare Disease Innovation Hub. For more information or to advocate to your elected representative, visit our Action Center. 

Budget Resolution:

Congress negotiates a budget resolution that sets overall spending limits for the fiscal year.   

Appropriations Bills:

Each year, Congress must pass 12 appropriations bills that provide funding to federal agencies and specific programs. The two bills most relevant to the rare disease community are:  

• the Labor, Health and Human Services (LHHS) bill, which funds most health programs other than the FDA, and  
• the Agriculture, Rural Development, and FDA bill, which allocates funding to the FDA  

As an analogy, if the federal spending budget were a pie, the budget resolution would decide how big the pie will be. The appropriations process will determine how big a slice of that pie each agency will get.  

The Congressional Appropriations Process 

• Subcommittees hold hearings to ‘hear’ from federal agency leaders. 
• Subcommittees hold markups to discuss draft bills. 
• Subcommittees release REPORT LANGUAGE along with the marked-up bill. Report language provides federal agencies with instructions or other details that speak to Congressional priorities for the agencies to act on in the coming year. The language is often released a few days prior to each bill’s full Appropriations Committee markup. 
• The full Appropriations Committee will mark up and finalize the 12 bills, sometimes combining them with multiple bills. 
• The House typically votes to pass appropriations bills first, but the process of drafting the bills in the House and Senate happens concurrently. 
• Typically, a conference will be held to reconcile any differences between the House and Senate versions of the appropriations bills before they can be passed and sent to the President for signature.  

Continuing Resolution:

If Congress can’t agree on final appropriations bills before October 1, it can pass a continuing resolution to temporarily extend the current funding levels, avoiding a government shutdown.  

Looking Ahead 

Our EveryLife Foundation team is here with you.  

We will keep you updated as new developments are shared, hearings are posted, and key opportunities arise to ensure that the funding priorities of our community are heard on the Hill.