Rep. Markey has long been a vocal advocate for children’s health care, and he is proud of the fact that 99.8% of children in Massachusetts have high-quality health insurance.
Rep. Markey is the founder and co-chair of the Cystic Fibrosis (CF) Caucus, advocating for the 30,000 children and young adults nationwide who suffer from this devastating disease. He authored a bill to increase the ability of individuals with rare disorders – such as CF – to participate in clinical trials, which was signed into law in October 2010. Many clinical trials offer patients compensation for their participation. Previously, this compensation had counted as income under Supplemental Security Income (SSI)’s eligibility rules, pushing some individuals suffering from rare diseases over the income threshold and thus ineligible for those benefits. Rep. Markey’s Improving Access to Clinical Trials Act allows patients with rare diseases to participate in critical research without losing their benefits.
Rep. Markey has also worked hard to ensure that medical devices – particularly those for children – are approved quickly while protecting quality and patient safety. The development of pediatric devices lags about five years behind devices for adults, forcing doctors to try to “jerry-rig” adult devices for use in children. In 2007, Rep. Markey passed a law that incentives the development of devices for children with rare diseases. It also funds “pediatric device consortia,” which bring together innovators and device manufacturers to stimulate the development and availability for medical devices for children.