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Trump’s Tax Plan Throws Rare Disease Patients Under The Corporate Bus

In his  address to Congress last February, President Trump singled out Megan Crowley, calling her a “miracle.” A 20-year-old patient-survivor of Pompe disease, Crowley was in attendance in a wheelchair with her father, John, a former special ops commander who found the treatment for Pompe and saved the lives of Megan, her brother, and thousands of others. The rare, often fatal neuromuscular disorder weakens and debilitates children’s muscles, inflaming their hearts and livers, until heart or lung failure take them at five or six years of age. Today, however, Megan is a junior at Notre Dame. After praising Megan, the president went on to say that cutting regulations at the FDA and beyond would accelerate the development of more life-saving treatments, and that, as a result, “our children will grow up in a nation of miracles.” Megan’s backstory is instructive here: In 2000, John Crowley wagered everything his family had to launch a startup called Novazyme focused on developing a therapy for his two dying children. Novazyme was bought by Genzyme, which brought an enzyme therapy for Pompe to trial in 2003. While his kids’ disease had progressed irreversibly in some ways, the enzyme therapy reduced organ inflammation and stabilized them moving forward. This incredible (and now widely told) story was chronicled in  The Wall Street Journal   and in  a book  by Geeta Anand, and is the basis for the 2013 feature film, Extraordinary Measures , produced by and starring Harrison Ford. However, the Tax Cuts and Jobs Act  passed by the House on Thursday abandons the possibilities described by the Crowleys’ story, and undermines Trump’s promised nation of medical miracles. A little-known proposal in the White House tax plan would cut the Orphan Drug Tax Credit (ODTC), the single largest incentive for pharmaceutical and biotech companies to invest in drug development for rare–often called “orphan”–diseases. These are the same tax incentives John Crowley and Genzyme relied on to save Megan, her brother, and the 40,000 children around the world with Pompe. It’s this tax credit that drug makers budget with to develop therapies for the rest of the 30 million Americans with rare diseases, half of whom are children, and only 5% of whom have treatments, let alone cures. The Orphan Drug Tax Credit currently gives drug companies a 50% tax deduction on the costs of clinical research and drug testing necessary to bringing a new rare disease therapy to market. (The average total cost is  approximately $2.5 billion .) A central component of  the 1983 Orphan Drug Act , the ODTC was designed specifically to accelerate the development of therapies for rare diseases that had been “orphaned” by the pharmaceutical sector due to the small profit margins that came with small patient populations

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Trump’s Tax Plan Throws Rare Disease Patients Under The Corporate Bus

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