Funding for Parkinson’s Research at Risk

1 day ago3 min read

Funding for Parkinson’s Research at Risk

What we know and what we can do.

The National Institute of Health (NIH) made recent policy changes proposing to cap the reimbursement of "indirect costs" associated with research grants at 15%, a significant decrease from previous levels, which averaged around 27-28% [1]. This change has been temporarily blocked by a federal judge in response to lawsuits from multiple states [1], [2].

The situation regarding NIH funding is evolving rapidly, with ongoing legal challenges and potential policy changes. It's essential to stay informed about the latest developments.

Background on NIH Funding

The NIH is the largest public funder of biomedical research globally [3]. In fiscal year 2023, the NIH funded approximately $253 million in PD research. Its funding supports research at universities, medical schools, and other research institutions across the United States and internationally [4]. NIH funding comes in two main categories: direct costs, which are directly attributable to a specific research project (e.g., researcher salaries, supplies), and indirect costs (also known as Facilities and Administrative or F&A costs), which cover shared research expenses, utilities, lab maintenance, and administrative support [4].

The Proposed Cuts and Their Impact

The proposed policy change aimed to cap the reimbursement of indirect costs at 15% of the total grant amount. The NIH argued this would save over $4 billion annually and allow more funds to be directed toward direct research costs [1], [5].

However, research institutions strongly opposed this change, arguing that indirect costs are essential for maintaining research infrastructure and supporting ongoing research [4]. They contend that such a drastic cut would lead to layoffs, suspension of clinical trials, disruption of ongoing research, and even lab closures [2].

Legal Challenges and Current Status

Twenty-two states, including California, New York, and Massachusetts, filed lawsuits to block the cuts [2], [1]. These states argued that the policy change violates federal law, including the Administrative Procedure Act and appropriations acts that prohibit unilateral deviations from negotiated indirect cost rates [2]. A federal judge temporarily blocked the implementation of the policy pending further court arguments [1], [2]. This pause only applies to institutions in the states that joined the lawsuit [1], [2]. A hearing is scheduled for February 21, 2025 [1].

What can you do?

Contact Your Policymakers - Your voice is powerful.

Find your elected officials https://www.usa.gov/elected-officials

By helping policymakers understand what is fundamentally important to those who know Parkinson's disease intimately, you can shape their decision-making. Contact your elected officials now and tell them how they can use their votes to support Parkinson’s research and care.

Sample Letter

Subject: Urgent: Protect and Increase Funding for the National Institutes of Health (NIH)

Dear [Representative's Name],

As a concerned constituent of [Your District], and a person with Parkinson’s Disease (PD), I am writing to strongly urge you to prioritize robust and consistent funding for the National Institutes of Health (NIH).

NIH-supported research is the cornerstone of medical advancements that directly impacts my life and the lives of others with PD and other neurodegenerative diseases. By investing in this critical research, we are improving patient outcomes and also fostering economic growth through innovation and job creation in the biomedical sector.

Robust NIH funding is essential for the development of better methods of diagnosis, treatments and possibly finding a cure for PD. NIH research has a direct impact on my current and future health.

Early detection and prevention strategies developed through NIH research can significantly reduce long-term healthcare costs. I urge you to:

Support legislation that increases NIH funding to a level commensurate with the need for medical breakthroughs.
Advocate for consistent and predictable funding to allow researchers to plan long-term, impactful studies.
Prioritize funding for emerging areas of research with the potential to address major health challenges facing our nation.

Your support for robust NIH funding is critical to ensuring a healthier future for all Americans.

Sincerely,

[Your Name][Your Address][Your Contact Information]

Note:

Consider reaching out to your local representatives through phone calls or in-person meetings to further advocate for NIH funding.
If you have any relevant personal stories or experiences related to NIH research, share them in your letter to add impactful weight to your message.

Helping Everyone Live Well With Parkinson's