Foundation Fighting Blindness Comments on Proposed NIH Reforms

On August 16, 2024, the Foundation Fighting Blindness shared reactions with the Energy and Commerce Committee in the House of Representatives — a committee with jurisdiction over the National Institutes of Health (NIH).

The Foundation strongly opposes the proposal to move the National Eye Institute (NEI) into a larger institute focused on brain and neuroscience research. The proposal to eliminate the NEI as a standalone institute was outlined in the E&C Committee Report and the House LHHS Appropriations Bill.

The Foundation Fighting Blindness is the leading source of private funding to advance treatments and cures for blinding retinal diseases, including rare diseases like retinitis pigmentosa and more common ones like age-related macular degeneration (AMD). For over fifty years, the Foundation funded nearly $1 billion in research, leading to incredible advances, including dozens of clinical staged treatments for these devastating diseases. Among these advances is the first-ever FDA-approved gene therapy for any condition, LUXTURNA®, which is indicated to treat a rare form of blindness.

Many of these achievements would not have been possible without our close working relationship with the National Eye Institute and the vital, focused expertise and critical funding the NEI directs to advance our field. The field is currently experiencing significant momentum, and it is a concern that any deviation from this focus will have a generational negative impact.

The Foundation's opposition to this consolidation comes from our commitment to strong science. The eyes are unique organs that focus and process light to make vision possible. They contain critical tissues and cells — including lenses, corneas, and the vitreous (gel in the middle of the eye) — that are unlike any other brain or central nervous system cells. Research to overcome conditions that affect these ocular components is highly specialized.

We believe that the complex and specialized field of vision science requires a specialized focus on vision research. As a standalone institute, the NEI can direct funds specifically toward vision research, supporting niche studies that would otherwise be overlooked. Furthermore, maintaining its autonomy allows the NEI to continue fostering collaborations across various scientific domains, ensuring that vision science is integrated into broader health initiatives.

Furthermore, common, blinding diseases like age-related macular degeneration, diabetic retinopathy, and glaucoma are unique to the eye. Preventing and treating these conditions also require highly specialized research efforts unrelated to the brain or nervous system.

Throughout its more than fifty-year history, the Foundation has worked closely with the NEI to collaborate on the development of promising drugs, stem cells, and gene therapies. The Foundation desperately needs to continue its strong focus on eye diseases and vision through its partnership with the NEI. The American public needs and demands it. Public concern about vision loss underscores the need for dedicated vision research. Studies show that vision loss is among the greatest health fears, affecting life and independence more than other conditions.

With an aging population, the prevalence of age-related eye conditions is increasing, making NEI's mission even more critical. Maintaining their standalone status ensures that vision health will continue to receive specialized attention, resources, and leadership necessary to advance research, treatment and public health efforts related to eye diseases and vision disorders.

The Foundation also expresses concern about the proposed term limits for NIH institute directors, which may disrupt continuity and hinder long-term research. Stability in leadership is essential for maintaining impactful scientific progress.

Finally, while supporting transparency and accountability within NIH, we urge Congress to thoroughly consult stakeholders before implementing significant reforms. Preserving NEI as an independent institute is crucial for advancing vision research and addressing public health challenges effectively.