Ed Markey: “The Improving Access to Clinical Trials Act will enable more individuals with rare diseases to participate in clinical…”

“The Improving Access to Clinical Trials Act will enable more individuals with rare diseases to participate in clinical trials offering hope for cures to devastating diseases like cystic fibrosis. This bill is urgently needed. Current eligibility requirements for Medicaid and Supplemental Security Income shut out many disabled and low-income Americans from participation in potentially lifesaving clinical trials. That is because, in accordance with current ethical standards, many clinical trials offer modest compensation for patient participation, which can average around $500. Low-income patients with rare diseases face a serious barrier to taking part in drug trials, as the modest fee they receive for participation counts towards their eligibility for Supplemental Security Income and Medicaid and can push their income above the established caps. This forces patients to choose between receiving the essential benefits they need to live and the opportunity to participate in a clinical trial that could improve their condition and offer hope for a cure. This is a cruel choice that no one should have to make.”