Foundation News

May 7, 2020

Foundation and Vision Partners Seek Biomedical Research Support from Congress during COVID-19 Crisis

Delays in Research Impacting Therapy Development

As we know well, eradicating the effects of COVID-19 is an important priority for Congress in the coming months. One of COVID-19's casualties is biomedical research and human studies for a variety of conditions, including blinding eye diseases. The biomedical research landscape is being significantly impacted by canceled and delayed research initiatives.

The Foundation and our vision partners are asking Congress to include support in FY2021 appropriations for saving and boosting these critical efforts, including research for eye diseases through initiatives like Eye Bonds (HR 2620 The Faster Treatments and Cures for Eye Diseases ACT). The letter below provides more detail about what's needed to meet the challenge of keeping biomedical research moving forward.

You can contact your House Member to let them know how important support for biomedical research is during these unprecedented times.

Visit https://www.house.gov/representatives/find-your-representative to find your representative.

The message to your Member: Significant delays and cancellations in treatments for myriad health conditions have resulted from the COVID-19 crisis. We need support in FY2021 appropriations for saving and boosting critical biomedical efforts, including research for eye diseases through initiatives such as HR 2620 The Faster Treatments and Cures for Eye Diseases ACT.


The Letter We Sent to Congress

May 6, 2020

The Honorable Rosa DeLauro
2413 Rayburn HOB
Washington, DC 20515

The Honorable Tom Cole
2207 Rayburn HOB
Washington, DC 20515

Dear Chair DeLauro and Ranking Member Cole,

Thank you for all your dedicated work to give the National Institutes of Health and other government agencies the resources they urgently need to mitigate, test, treat, and cure COVID-19. However, the COVID-19 national emergency has spawned another medical crisis: a profound shortage of resources needed to treat and cure all manner of diseases, including cancer, diabetes, heart disease, sickle cell and blindness. With the majority of resources now focused on addressing COVID-19, promising clinical trials addressing other life altering diseases and disabilities are being placed on hold or cancelled. New trials now face profound uncertainty. Grievous stress across financial markets also sharply reduces resources available from philanthropic and private sources.

Given this silent medical crisis, we write to urge you to add report language in the FY2021 Labor HHS appropriations bill that would encourage HHS and NIH to advance an innovative approach that will bring sorely needed private funding to translational biomedical research. An example of such an approach, which has been embraced by Agriculture, Rural Development, FDA, and Related Agencies Subcommittee Chairman Sanford Bishop and Rep. Cathy McMorris Rodgers, along with 19 bipartisan cosponsors, is H.R. 2620, the Faster Treatments and Cures for Eye Diseases Act creating a new class of investments called Eye Bonds.

Novel, innovative approaches, such as Eye Bonds, are needed now more than ever. Under the bill, promising early-stage research aimed at treating and curing severe vision impairment that would be identified by a committee of experts. NIH would simply be asked to convene the committee. Researchers in promising selected programs would, if they chose, receive loans from private banks packaged into bonds backed by limited federal guarantee (50% of principal) that are then sold to private investors.

These Eye Bonds would for the first time bring long-term, low-cost capital from interested pension funds, insurance companies, and other institutional investors into biomedical research, making a dramatic, near-term difference speeding treatments and cures. If this pilot program proves successful, the concept could be quickly ramped up to speed treatments and cures across the spectrum of disease and disability.

Given the urgent need to restart stalled clinical trials and move quickly on those with promise, we ask that you direct NIH at the highest levels to work closely with Congress to craft new bonds bringing billions of dollars of private capital into the fight to treat and cure blindness and ultimately other diseases and disabilities. We understand that Chair Bishop also supports adding report language to the HHS FY2021 Appropriations.

Understandably, we must first cure COVID-19, but we cannot ignore all the other, ongoing health crises that grip so many American families every day. We also cannot allow millions of dollars already dedicated to urgent research to be wasted by the disruptions due to new biomedical priorities and see the U.S. lose its leadership in global biomedical research.

On behalf of the Foundation Fighting Blindness and our eye and vision care partners (signatories listed at the end of this letter), we thank you for considering the addition of language to the FY2021 Labor HHS appropriations bill to bring much needed private funding to translational biomedical research.

Sincerely,

Benjamin Yerxa, PhD
Chief Executive Officer
Foundation Fighting Blindness

Iris Rush
Executive Director
Association for Research in Vision and Ophthalmology

Don Overton
Acting Director
Blinded Veterans Association

James Jorkasky
Executive Director
National Alliance for Eye and Vision Research

Laura Manfre
President and Founding Director
Sofia Sees Hope

Krista Vasi
Executive Director
Usher Syndrome Coalition