Political Quotes

“I rise today to introduce the ``Ending the Diagnostic Odyssey Act.'' This legislation gives States the option of providing whole genome sequencing (WGS) clinical services through edicaid for children with a disease that is suspected to have a genetic cause, at an enhanced Federal matching rate for three years. I am pleased to be joined by Senators Kelly and Menendez. Children with rare diseases will spend on average five to seven years on a diagnostic odyssey, and 30 percent of those children will not survive beyond the age of five years old. The average patient sees seven different physicians in that time. The wait to find a cause--never mind 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% were given a diagnosis. Many of these diagnoses were rare genetic diseases including 31 previously unknown syndromes. In May 2019, the Director of the National Institutes of Health, Dr.…”