Momentum Grows for Eye Bonds to Speed Up Cures for Blindness
WASHINGTON— Sept. 12, 2018 — Supporters are energized by new endorsements for federal legislation that aims to decrease the time it takes medical advancements to travel from the lab bench to patients who are blind or dealing with other severe visual impairments.
Reps. Jim Banks (R-IN), Brian Fitzpatrick (R-PA), Jeff Fortenberry (R-NE), Zoe Lofgren (D-CA), Kenny Marchant (R-TX), Eleanor Holmes Norton (D-DC), Tom O’Halleran (D-AZ), Pete Olson (R-TX), Tom Rooney (R-FL) and Brad Schneider (D-IL) have joined the growing group of bipartisan co-sponsors of The Faster Treatments and Cures for Eye Diseases Act, H.R. 6421.
The bill, just introduced in mid-July, was originally sponsored by Reps. Pete Sessions (R-TX), Sanford Bishop Jr. (D-GA), Fred Upton (R-MI) and Gus Bilirakis (R-FL).
Associations joining the Foundation Fighting Blindness (FFB) working to support the legislation now include the Association for Research in Vision and Ophthalmology, Choroideremia Research Foundation and Usher Syndrome Coalition. Previous supporters, such as the Blinded Veterans Association and the National Alliance for Eye and Vision Research, continue their efforts with FFB as well.
Upon becoming law, the act would create Eye Bonds, which would fund eye researchers who are extremely eager to advance their promising treatments.
“We urgently need Eye Bonds because great research coming out of the lab often doesn’t make it to patients because pharmaceutical companies and biotech firms prefer to wait to later stages of success with clinical trials,” says Karen Petrou, an FFB board director and a key strategist in developing the idea. “I’m virtually blind from a genetic retinal disease called retinitis pigmentosa, which could well be cured, along with many other causes of blindness, if we could only move the best research faster than available funding now permits.”
Petrou, a noted Washington, D.C., financial analyst, says the structure for Eye Bonds is careful, as the federal treasury would be repaid first before any private investor earns income from Eye Bonds.
Her firm, Federal Financial Analytics Inc., found that America lags other countries in funding translational research. The U.S. is currently devoting less than $750 million a year to translational research efforts, and the majority of this funding does not go toward translational research for specific diseases but instead toward research addressing commonalities underlying all areas of medicine.
Enthusiastic reaction to the legislation has come from the parents of 12-year-old David McGlohon of Greenville, NC. David has been diagnosed with Bardet-Biedl syndrome, which doctors say will eventually affect his vision. His parents learned of the U.S. House bill and believe it will dramatically jumpstart research for their son’s disease. They are spreading the word to lawmakers.
Advocates say treatments that would be eligible for funding would include whole-eye transplants for wounded warriors and treatments for diabetic retinopathy, sickle-cell anemia retinopathy and age-related macular degeneration.
Successful implementation would lead to new funding that would speed treatments and cures for many other diseases and disabilities, including cancer, Alzheimer’s and Parkinson’s.
Further details about the legislation are available at www.EyeBonds.com.
ABOUT FOUNDATION FIGHTING BLINDNESS
The Foundation Fighting Blindness was established in 1971. It has since raised more than $725 million for research aimed at preventing, treating and curing blindness caused by retinal degenerative diseases. In excess of 10 million Americans, and millions more worldwide, have experienced or are at risk of experiencing vision loss due to retinal degeneration. Through its support of focused and innovative science, the Foundation drives the research that has and will continue to improve the lives of people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and other inherited retinal diseases.