Genetic testing gives us the answers we need to more effectively treat rare diseases. Congressman Peters co-introduced the Precision Medicine Answers for Kids Today Act to eliminate healthcare barriers and expand access to targeted treatments for kids with genetic disorders.
Read more about the bill in this November 19th piece by EveryLife Foundation For Rare Diseases, posted below:
Statement of Support for âThe Precision Medicine Answers for Kids Today Actâ
By EveryLife Foundation for Rare Diseases
November 19th, 2021
Timely and sustainable access to diagnostic testing that rapidly informs appropriate patient care and treatments is fundamental to rare disease patientsâ health and well-being.š Unfortunately, genetic and genomic sequencing tests are out of reach for thousands of rare disease families. Barriers, such as obtaining health insurance and lack of access to expert clinicians, extend the diagnostic odyssey for children and families with suspected rare diseases. The EveryLife Foundation National Economic Burden of Rare Disease Study in the U.S.² found that the average rare disease diagnosis spans more than six years and includes visits to more than 17 healthcare specialists. As a result, many children do not survive long enough to experience the immense benefits of genetic and genomic sequencing tests.
The Precision Medicine Answers for Kids Today Act (H.R. 5989), included within the 21st Century Cures 2.0 Act and led by Reps. Eric Swalwell (D-CA), Scott Peters (D-CA), would advance patientsâ access to lifesaving diagnoses, treatments, and cures; it would equip the globally connected community to eliminate certain challenges of rare diseases; and it would help ensure patients have access to all diagnostic testing, andâby extensionâthe clinical care, therapy, and treatment they require. We, the undersigned, are proud to support this bill, which could improve health outcomes for tens of thousands of families living with a suspected rare disease by bringing many of them closer to a life-altering diagnosis.