AEVR Hosts Virtual Dry Eye Disease Congressional Briefing

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Welcome to our source for updates on vision research policy developments, and our detailed advocacy efforts. Here, we highlight the critical role of federally funded vision research, the latest legislative actions affecting eye health, and how you can help protect and advance scientific discoveries that improve lives.

Stay informed, get involved, and join us in advocating for the future of vision research.

Defending Vision Science: Our National Advocacy in Action

Mobilizing to Protect NEI, Research Funding, and the Future of Sight

Since January, we have led an aggressive, coordinated advocacy response to an unprecedented series of threats to vision science. From proposed NIH budget cuts and institute consolidation to caps on indirect funding and dismantling of peer review protections.

What began as a challenging fiscal environment has now escalated into an existential crisis for the NEI, biomedical researchers, and patients nationwide.

Organizational Sign-on Letters:

February 11 – Council of Professional Association on Federal Statistics Protecting and Preserving Public Access to Federal Data
February 25 – Research!America NIH sign-on letter
April – Ad Hoc Group for Medical Research FY26 NIH Recommendation Letter
April 25 – Coalition for Health Funding letter asking the Appropriations Committees to reject proposed cuts to HHS from the Administration
April 8 – NIAID and NIH Sign on letter
May 20 – Defense Health Research Consortium Sign-on letter for the Vision Research Program (Senate letter and House letter)
May 23 – NAEVR NEI sign-on letter (led and submitted)

Statements issued:

February 10 – NAEVR Statement on NIH Indirect Rates
February 18 – NAEVR Statement on delays in grant funding
April 18 – NAEVR Statement on NIH and NEI staffing cuts
April 30 – NAEVR Statement on President’s budget proposal leak
May 9 – NAEVR Statement on President’s Skinny Budget
May 12 – NAEVR interview with Medscape highlighted at ARVO
May 23 – NAEVR formal response to OPM Proposed Rule on Schedule F Employees

Partner Support, Engagement, and Presentations:

On February 6, NAEVR supported ARVO’s Advocacy Day providing training and engagement with ARVO advocates and meetings with Congressional offices. With nearly 100 congressional visits, this was the largest ARVO Advocacy Day to date. NAEVR partnered with ARVO staff to provide advocates with an initial virtual preparatory meeting, an overview at dinner the night before, and training on the morning of January 26. ARVO advocates were amongst the first on the Hill in 2025 advocating for NIH and NEI funding. For the first time ARVO included patients in the advocacy day as well. ARVO advocates requested a minimum of level funding for the NIH and NEI at the Senate-recommended levels and placed a stake in the ground for FY26 funding with an ambitious request of $1B for NEI while maintaining it as a dedicated institute.
On January 24, NAEVR presented at the DRRC Retina Network Winter Meeting to share updates on NEI funding and the new administration’s priorities
On January 31, NAEVR presented at the AUPO Annual Meeting and Research Directors luncheon on NEI funding and advocacy activities.
On February 25, AEVR presented its annual AMD briefing. The briefing was AEVR’s first event in its Research Saving Sight, Restoring Vision Initiative to educate policymakers and raise awareness about eye disease, the research being done to improve patient outcomes, and the importance of access to newly approved FDA treatments.
On February 26-28, NAEVR attended the Military Vision Symposium at Schepens to provide a detailed and comprehensive update on federally funded vision research including both NEI and the Vision Research Program at the Department of Defense.
NAEVR worked with Future Leaders in Sight (FLIS) to support their interest in advocating for NEI funding by helping them develop a community sign on letter and grassroots advocacy letter for their members.
On March 13-14, AEVR participated as a Programmatic Review committee member for the Vision Research Program (VRP) FY24 Vision Setting Meeting to evaluate grant proposals for programmatic alignment, as well as identify strategies, priorities, and opportunities for VRP research initiatives and funding opportunities in FY25.
NAEVR has worked with ARVO members, the VRP, and military medical personnel to present a Special Interest Group this summer with a white paper to augment support for VRP researcher applicants around effective models and needs for ocular injury in the military (SIG scheduled for June 24, 2025).
On March 25, NAEVR presented at the Research to Prevent Blindness (RPB) Vision Research Funding Partnership Convening to highlight the landscape of federal funding for vision research and the importance of grassroots and grasstops engagement to support research funding. Other participants included ARVO, research funding foundations, the NEI and VRP, researchers, clinicians, and patient advocacy groups. Given the current challenges, this session was extended longer than past years to emphasize the importance of getting involved now. There was an emphasis placed on current federal funding landscape and challenges along with NAEVR activities to date and collective activities needed from partners moving forward. getting all groups involved and share engagement opportunities with each organization’s network with the goal of advocating for enhanced vision research.
NAEVR drafted and submitted testimony to the House and the Senate Labor Health and Human Services Appropriations Committees seeking increased funding for the NEI from $896.5M to $1B, for NEI to remain a dedicated institute within NIH, and to eliminate the 15% indirect rate caps still sought by the Administration.
At ARVO’s Annual Meeting, NAEVR presented at a Town Hall to educate ARVO attendees about issues impacting vision research and NEI, and the need for ARVO advocates to get involved to support increasing awareness and advocacy efforts with policymakers.

Lobbying Efforts

NAEVR has met with 52 of the 63 appropriator offices in the House and submitted NEI requests for the 17 members on the House Labor, Health and Human Services, Education, and Related Agencies (LHHS) Appropriations Committee. NAEVR has also met with 28 of the 29 Senate appropriator offices and submitted NEI requests for the 17 members of the Senate LHHS Appropriations Committee to advocate for a funding increase.
NAEVR has also met with Republican Senate offices who supported NIH through the annual NIH Dear Colleague Letter in 2024, including: John Cornyn (R) TX, Kevin Cramer (R) ND, Steve Daines (R) MT, James Lankford (R) OK, James Risch (R) ID, Mike Rounds (R) SD (also an appropriations committee member), Rick Scott (R) FL, Thom Tillis (R) NC, and Todd Young (R) IN

NAEVR 2025 Grassroots Engagement Letters:

NEI/NIH funding request, opposition to consolidation and 15% indirect caps – 5,881 messages sent
NIH Indirect Cost Cap – 1,742 messages sent
Protect Vision Research Funding – CDMRP- 368 messages sent
Oppose Schedule F reclassification of federal science roles – 309 messages sent
AMD Awareness Letter – 285 messages sent
FLIS NEI advocacy letter – 707 messages sent

Grasstops Efforts

NAEVR is working with offices on elevating vision as a national priority, and is working with members who have reached out on behalf of vision research grants that have been canceled. We are also continuing our efforts to meet with Congressional leaders on the appropriations committees with voters from their states and districts.

Public Engagement:

Developing a Broader Public Awareness Campaign (#SeeWhatMatters)
Plans are underway for a digital campaign to:
- Increase public understanding vision and of the value of vision research
- Encourage grassroots and grasstops engagement
- Promote vision as foundational to health, equity, and innovation
Launching a Blog to Provide Timely Updates
The blog will offer:
- Weekly updates on NIH/NEI issues and topics along with engagement with policymakers
- Background on policy proposals
- FAQs and links to advocacy opportunities
Conducting Congressional Briefings
NAEVR and AEVR continue to organize issue briefings tailored to:
- Congressional members from key districts and states
- Appropriators and caucus members
- Featuring patient stories and research successes
Collecting Stories and Experiences from the Field
NAEVR has launched a call for personal stories from:
- Researchers funded by NEI
- Clinicians treating patients with federally funded advances
- Individuals impacted by vision loss or access to care

Legislative/Appropriations Updates:

In early February, NIH proposed capping indirect costs (F&A) at 15% across all grants, including those with previously negotiated higher rates. The policy has not yet been implemented and is under litigation, with bipartisan opposition in Congress. NAEVR/AEVR is actively monitoring the case and coordinating advocacy.
On March 15, President Trump signed the FY25 Continuing Resolution (CR), extending funding through September 30, 2025. NIH and NEI received level funding from FY24, preserving base support but allowing expiration of 21st Century Cures Act provisions.
The expiration of Cures Act funding resulted in a reduction of the BRAIN Initiative budget by $81M—from $402M in FY24 to $321M in FY25. Many NEI-supported projects in visual neuroscience have been impacted.
In January, the Administration enacted a federal travel and spending ban still in effect, suspending conference travel and scientific collaboration by NIH/NEI staff, which has slowed research progress.
In early April, HHS Secretary Robert F. Kennedy Jr. oversaw the layoff of ~10,000 federal employees, including significant NIH staff reductions. This raises concerns about grant processing delays and program stability.
Grant review processes have been delayed or suspended due to new executive orders requiring reviews of DEIA policies. NEI spring grant reviews, originally scheduled for February, were postponed to April 21.
The FY25 CR cut Department of Defense CDMRP funding by 57%, reducing its budget from $1.509B to $650M. The Vision Research Program was eliminated, impacting military/veteran-focused research. NAEVR is working to restore this funding in FY25 or FY26.
While the Administration’s proposed consolidation of NIH institutes was not included in the final FY25 budget, the President’s “skinny budget” proposed eliminating all existing institutes and consolidating them into just five and maintaining ARPA-H with NEI being consolidated within Neuroscience and Brain Research similar to the House’s proposal in 2024:
- National Institute on Body Systems Research
- National Institute on Neuroscience and Brain Research*
- National Institute of General Medical Sciences
- National Institute of Disability Related Research
- National Institute on Behavioral Health
Federal leadership with Robert F. Kennedy Jr. and Dr. Jay Bhattacharya are expected to continue to look for changes at NIH, although it’s unclear what additional priorities they will try to implement, RFK Jr. testified in support of the President’s budget in May the hearing focused on these issues as it related to NIH:
- Major Budget Cuts Proposed: The President’s budget proposes an $18 billion reduction to the NIH, bringing the total funding down to approximately $27.5 billion. Secretary Kennedy justified this reduction as a strategic refocusing on “gold-standard” science and essential public health research.
- Redirection of Priorities: Kennedy stated that the budget reflects a shift away from what he described as “ideological” or “redundant” research areas. The goal, according to the administration, is to direct limited resources toward high-impact, translational science that improves population health outcomes.
- 15% Indirect Cost Cap: The administration proposes to continue a blanket 15% cap on indirect costs (overhead) for all NIH-funded research. Kennedy argued that current rates—often exceeding 50% at leading institutions—divert excessive funds from core research and increase bureaucratic inefficiency.
- Criticism of High Overhead Spending: Kennedy cited specific examples, including Ivy League universities receiving up to 69% of NIH funding as indirect costs, to highlight perceived abuse and waste under the current system, but suggested that some smaller institutions (like those in Maine and Alabama) may not be abusing it.
- Reorganization of NIH Institutes: The FY26 budget proposes consolidating NIH’s 27 institutes and centers into just five or six larger entities. Kennedy asserted that this restructuring would streamline operations, reduce administrative overhead, and enable more strategic investment in cross-cutting health issues.
- Concerns About Disease-Specific Research: Lawmakers from both sides expressed concern that consolidating disease-specific institutes into broader categories like neuroscience or chronic disease could reduce visibility, funding, and progress for conditions that require targeted attention. Several lawmakers expressed that any approach to restructuring should come from Congress and be bipartisan and based on input and guidance from experts and key stakeholders.