Political Quotes

“I rise today to introduce the Ending the Diagnostic Odyssey Act. This legislation gives States the option of providing whole genome sequencing WSG clinical services through Medicaid for children with a disease that is suspected to have a genetic cause, at an enhanced Federal matching rate for 3 years. I am pleased to be joined by Senators Jones, McSally, and Menendez. Children with rare diseases will spend on average 5 to 7 years on diagnostic odyssey, and 30 percent of those children will not survive beyond the age of 5 years old. The average patient sees seven different physicians in that time. The wait to find a cause--nevermind a cure-- can be excruciating. Parents try to project a calm and reassuring presence for their child while facing a whirlwind of doctor appointments, hospital visits, and unanswered questions. Undeniably, we are making progress in both accelerating research funding for rare diseases as well as in the development of diagnostics. In 2014, the National Institutes of Health, NIH launched a program called the Undiagnosed Disease Network UDN. In its first 20 months, the UDN accepted 601 participants undiagnosed by traditional medical practices. Of those who completed their UDN evaluation during this time, 35 percent were given a diagnosis. Many of these diagnoses were rare genetic diseases, including 31 previously unknown syndromes. In May, the Director of the National Institutes of Health, Dr.…”