Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported. The bill would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without Congressional action, it is scheduled to expire in October 2015. The law has helped to remove barriers for patients to participate in clinical trials – a critical issue for the rare disease community, as the majority of rare diseases still have no treatment.
The legislation has enabled those with rare diseases to receive compensation up to $2,000 for participating in clinical trials without having this compensation be counted as income when calculating eligibility for Supplemental Security Income (SSI) and Medicaid.
Because of IACT, patients receiving federal assistance do not have to choose between access to health care benefits and participating in clinical trials for much-needed treatments. Previously, some people with rare diseases who received SSI and Medicaid could not participate in clinical research for fear that the compensation received would make them ineligible to receive government medical benefits, harming enrollment in clinical trials for potential treatments.
Next up – the Ensuring Access to Clinical Trials Act will need to pass in the House – stay tuned for how we can all work together and you can help make this happen!