Foundation Fighting Blindness USA (FFB), a US patient organisation advocating supports and research for individuals with retinal diseases, has openly criticized plans by the Trump administration to cut tax credits designed to encourage the development of treatments for rare disorders. The Orphan Tax Credit, a part of the US Orphan Drug Act 1983, provides tax credits on the cost of clinical trials for drugs to treat rare disorders. The incentive acts as an encouragement for pharmaceutical companies to develop treatments for rare disorders which otherwise may not provide a sufficient level of profit to justify the expense and risk involved in drug development. The federal Orphan Drug Credit provides a tax credit of 50% of the “qualified clinical testing expenses”, as specified under the Federal Food, Drug and Cosmetic Act. A number of orphan treatments are under development for the treatment of retinal disorders, including therapies from Spark Therapeutics (NASDAQ: ONCE) and AGTC (NASDAQ: AGTC).
FFB, one of the leading private funders of retinal research in the world, has expressed strong oppostion to recent proposals from the US Senate and the House of Representatives to repeal the Orphan Drug Tax Credit (ODTC). The Senate Finance Committee has recommended a cut to the credit. According to FFB’s CEO, Benjamin Yerxa, PhD, “the positive impact of the orphan drug tax credit is very obvious in the ocular health field. 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.”
Earlier in the year, the New York Times reported that the proposed tax cut could provide a saving of up to $54 billion over a 10 year period, potentially covering other Republican led tax provisions in the much heralded tax reform. Opposition to the proposal is additionally supported by the National Organisation for Rare Disorders (NORD), who had previously hosted a “Save the Orphan Drug Tax Credit Rally” at the U.S. Capitol Building. According to Peter L. Saltonstall, President and CEO of NORD, “there are 30 million Americans with rare diseases – one-tenth of the population – of whom the vast majority are fighting for their very first treatment. We are telling patients: you can use your voice to make a difference. The current tax reform bill is bad for rare disease patients. Senators should listen to their constituents. The Orphan Drug Tax Credit saves lives, and our community needs the Orphan Drug Tax Credit for any hope of a treatment.”