As advocates at Patients Rising, we hear from patients and caregivers every day whose lives depend on real progress. Not someday, but now. Progress in biomedical research that uncovers new treatments. Progress in smarter, more patient-centered regulation. And progress in moving promising therapies from the lab to the people who need them most.
What most patients do not see is how much of that progress is shaped, or stalled, by decisions made in Washington. Right now, one of the biggest barriers is not a lack of scientific innovation. It is how the federal government chooses to fund it.
On April 2, the White House released the President’s Fiscal Year 2027 budget proposal. It calls for 15.8 billion dollars in cuts to the Department of Health and Human Services, a 12.5 percent reduction. This includes roughly 5 billion dollars less for the National Institutes of Health, significant reductions and reorganizations at the CDC, HRSA, and ARPA-H under a new Administration for a Healthy America focused on prevention and chronic disease, and a modest increase for the Food and Drug Administration.
Those numbers matter. But here is what matters more. This proposal is not the final decision. It is an opening bid, a statement of the Administration’s priorities, not binding law. Congress holds the constitutional power of the purse and has routinely revised or rejected presidential budget proposals in the past. Last year, for instance, the Administration proposed an 18 billion dollar cut to the NIH. Congress delivered a 415 million dollar increase instead.
Most Americans assume there is a clear, orderly process for funding the government each year. There is not, at least not anymore.
Congress is supposed to pass 12 regular appropriations bills every year by October 1, the start of the new fiscal year. Those bills determine funding for agencies like the NIH and FDA that directly affect patient care.
Yet Congress has not passed all 12 bills on time since fiscal year 1997, nearly 30 years ago. In the nearly five decades since the modern budget system began, this has happened only four times total: fiscal years 1977, 1989, 1995, and 1997. In 13 of the past 15 fiscal years, lawmakers passed zero of the 12 bills by the deadline.
Instead, they rely on temporary funding patches known as continuing resolutions, or CRs. These short-term measures simply extend the previous year’s funding levels with little room for new priorities, adjustments, or strategic investments. The result is a reactive, deadline-driven process rather than thoughtful governance.
For patients, this is not abstract inside-the-Beltway dysfunction. It has tangible consequences.
Long-term research grants and clinical trials become harder to plan when funding is locked in at last year’s levels. New patient-centered initiatives, such as expanding the FDA Rare Disease Innovation Hub or advancing AI tools for faster reviews, often lose momentum in last-minute omnibus packages. Important priorities get squeezed or buried when negotiations drag on.
Recent history illustrates the cost. For FY2026, the process triggered the longest government shutdown in modern history. It lasted 43 days, from October 1 to November 12, 2025. Even though the House passed all 12 bills individually for the first time in decades, final agreements still relied on extensions and bundled deals.
Every administration releases a budget. Every Congress responds. That back-and-forth is normal. The deeper issue is that the appropriations system itself has become unpredictable and driven by brinkmanship rather than steady, strategic decisions.
When agencies operate under uncertainty, patients wait longer for the next breakthrough. When report language, the detailed Congressional instructions that often include patient priorities, gets rushed, opportunities for meaningful change slip away.
The good news is that the budget may start in the White House, but the real decisions happen in the congressional appropriations process. That is exactly where patient voices have the most impact.
Over the coming months, Congress will hold hearings, mark up bills, and release report language that guides how agencies operate. This is prime time for advocates to engage with specific, personal asks: protecting NIH funding for biomedical research, supporting dedicated resources for the FDA Rare Disease Innovation Hub, and advancing patient-centered innovations.
Patients are not powerless in this system. Many of the most meaningful improvements in healthcare policy have come from individuals who chose to share their stories and make clear requests at the right moments.
Here is how you can get involved right now. Monitor hearing schedules and bill markups at appropriations.house.gov and appropriations.senate.gov. Contact your Representative and Senators, and especially members of the Labor-HHS and Agriculture-FDA subcommittees, with a personal story plus a targeted ask. For example, ask for robust NIH funding and at least 5 million dollars plus strong report language for the FDA Rare Disease Innovation Hub.
Use tools from Patients Rising and other advocacy organizations for templates, alerts, and training. EveryLife Foundation has an action for a specific appropriations request for the Rare Disease Innovation Hub.
We will continue tracking developments closely at Patients Rising and breaking them down in ways that connect policy to real patient impact. Because this is not just about budgets on paper. It is about whether progress moves forward or stalls for the people counting on it most.
What is one step you are willing to take this month to make your voice heard? Together, we can help turn patient experience into better policy and faster access to care.
Patients Rising empowers patients and caregivers to lead the fight for affordable, accountable, and innovative healthcare. To get involved consider taking the following actions: