Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage girls, and has the nation’s third-highest rate of uninsured residents — with 13.9% of all Oklahomans lacking health coverage. As if that’s not enough, the Sooner State has a new dubious claim to fame: it’s the worst place in the United States to live for anyone with a rare disease. That’s according to the National Organization for Rare Disorders (NORD), which every year since 2015 has graded all 50 states from A to F for their performance on  issues affecting the roughly 30 million Americans who have rare illnesses. In the 2019 report, Oklahoma received a whopping five F’s— more than any other state — one each for medical nutrition, protection for out-of-pocket prescriptions, individual insurance protections, Medicaid eligibility, and step therapy. The Midwestern state got B’s in two other categories, newborn screening and home and community-based services, and not a single A. “Oklahoma needs help. I’ve looked at everybody’s report card, and we’re the worst,” said Jade Day, the Oklahoma volunteer state ambassador for NORD’s Rare Action Network. A resident of Muskogee, 48 miles southeast of Tulsa, Day is also vice president of the nonprofit group A Twist of Fate-ATS, which seeks a cure for arterial tortuosity syndrome. “We just can’t keep doctors. The Children’s Hospital at St. Francis [in Tulsa] just dissolved their pediatric cardiovascular surgery program,” she told BioNews Services — publisher of this website — during the NORD Family & Patient Forum in Houston in late June. “We have plenty of general doctors but we lack specialis
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