Repeal of the Orphan Drug Tax Credit Would Stifle Promising Medical Research That Could be Life-Changing for 30 Million Americans, says FFB

Columbia, MD – Nov. 28, 2017 – The Foundation Fighting Blindness (FFB), the world’s leading private funder of research on treatments and cures for vision-robbing inherited retinal diseases, strongly opposes recent U.S. Senate and House of Representatives actions which would slow or stop research on treatments for Americans impacted by rare diseases.  The U.S. House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part its Tax Reform and Jobs Act (H.R. 1). The Senate Finance Committee recommended cutting the credit nearly in half.

The Orphan Drug Tax Credit has proven critical to encouraging investment in treatment research within the rare disease category.  Over 95 percent of the thirty million Americans with a rare disease are waiting for a first available treatment.  It is estimated that the loss of the orphan drug credit would result in a third fewer investigative studies on potential cures for rare diseases.

“The positive impact of the orphan drug tax credit is very obvious in the ocular health field,” says Benjamin Yerxa, PhD, FFB’s CEO.  “Because of the economics of rare diseases, i.e. a small patient population, the treatment advances developed by companies like Spark Therapeutics and AGTC would likely not have been possible without the credit.  Taking away the credit could prevent the next potential breakthrough from ever reaching the patients who need it.  That would be a loss for the entire country.”

FFB joined 90 other patient and health research organizations in a November 20 statement opposing these cuts and released by NORD, the National Organization for Rare Disorders.

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The Foundation Fighting Blindness is the world’s leading private funder of research on potential treatments and cures for inherited retinal degenerative diseases and currently funds 77 research projects overseen by 65 investigators at 67 universities, hospitals, and affiliated eye institutes worldwide. The Foundation was established in 1971 and has since raised more than $725 million toward its mission to prevent, treat and cure blindness caused by inherited retinal diseases. In excess of 10 million Americans, and millions more worldwide, experience vision loss due to retinal degenerations. Through its support of focused and innovative science, the Foundation drives the research that has and will continue to provide treatments and cures for people affected by retinitis pigmentosa, LCA, macular degeneration, Usher syndrome and other retinal diseases. 

Original Date: 
Tuesday, November 28, 2017