Foundation Fighting Blindness USA strongly supports a bipartisan bill introduced late Wednesday, July 18, 2018 in the U.S. House of Representatives that holds enormous promise for saving and restoring the vision of the 4 million adults and almost half-a-million children in the U.S. who are blind or have severely impaired vision from a variety of eye diseases and conditions, including inherited retinal diseases and age-related macular degeneration.
The Faster Treatments and Cures for Eye Diseases Act, H.R. 6421, which would allow for the creation of Eye-Bonds, would fund translational research and advance treatments and cures for blindness and other causes of severe vision impairment.
Eye-Bonds fill a critical need, because many promising therapies never make it through the translational research process — out of labs and into clinical trials — because of a lack of funding; translational research is often referred to as “crossing the Valley of Death” for this reason. Pharmaceutical companies and biotechs are less likely to fund translational research. They prefer to fund projects once they have had some initial success in a clinical trial. This is even more the case with rare diseases or conditions without a proven regulatory pathway or demonstrated commercial success.
FFB is grateful to the sponsors of the legislation: Republican Reps. Pete Sessions of Texas, Fred Upton of Michigan and Gus Bilirakis of Florida, as well as Democratic Rep. Sanford Bishop of Georgia.
Eye-Bonds would finance packages of loans that would total $1 billion for new projects over four years in the pilot phase. Underwriters would determine how many projects they would fund and at what amount, not to exceed $250 million in any year.
Eye-Bonds would advance treatments and cures for diseases and conditions that affect the entire eye, including the severe vision trauma suffered by veterans of wars in Iraq and Afghanistan.
“On behalf of the entire blind and vision impaired community, we are grateful for the actions by these members of Congress and urge others to join as co-sponsors of this important legislation. There is no doubt that vision-saving and vision-restoring research sitting on shelves needs to be unleashed so patients can benefit. We are confident that Eye-Bonds will work,” says Benjamin Yerxa, PhD, chief executive officer. “We especially want to thank Karen and Basil Petrou, longtime FFB supporters and leaders, for developing the Eye-Bonds concept and the financial details that make the legislation so beneficial and safe for taxpayers.”
Supporters expect the Congressional Budget Office will score the cost of the legislation at or near zero. That’s because taxpayers would be the first to be repaid when private investors recoup their investments.
The National Eye Institute, part of the National Institutes of Health, would investigate and evaluate programs eligible for funding, although NIH would have no risk related to funding these projects.
FFB believes these innovative research bonds will prove successful and the concept could be used to overcome obstacles that also exist in translating cancer, Alzheimer’s, Parkinson’s and other disease research into practical use.
The Foundation Fighting Blindness has been an unparalleled leader in supporting research on inherited retinal diseases for over 46 years. It is currently funding 75 research studies at prominent laboratories worldwide and on the spectrum of emerging retinal disease therapies including gene, cell and drug-based treatments.