We wanted you to be aware of pending Federal legislation that may be significant for you and for our rare disease community. In June, legislation that enables individuals with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits was sponsored by Senators Ron Wyden (D-OR), Christopher Dodd (D-CT), Richard Durbin (D-IL), James Inhofe (R-OK), and Richard Shelby (R-AL), and Representatives Edward Markey (D-MA) and Cliff Stearns (R-FL).
Current law prevents many people who receive Supplemental Security Income from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty stops significant numbers of people with rare diseases from participating in clinical studies.
The 2009 legislation is supported by over 100 patient support and advocacy groups.  A letter sent to Representatives Markey and Stearns reads, in part:
“The undersigned organizations, representing millions of Americans with rare and genetic conditions, strongly support H.R. 2866, the Improving Access to Clinical Trials Act of 2009. We appreciate your efforts to remove the regulatory barrier that prevents Social Security beneficiaries from participating in clinical trials that provide compensation. The fear of losing Medicaid coverage is a strong disincentive for Social Security beneficiaries to participate in these clinical trials.
This problem is a barrier for people who wish to participate in clinical trials. For example, a high percentage of people with cystic fibrosis (CF) are needed to enroll in the large number of CF clinical trials in the pipeline, but many CF patients who are on Social Security cannot participate because of this regulation. With the efforts to develop new therapies to treat more disease, it also could impact 30 million Americans affected by one of the nearly 7000 known rare and genetic conditions.”
Please see https://www.govtrack.us/congress/bill.xpd?bill=h111-2866 for current status of the legislation and a list of current co-sponsors. If you feel you can, contact your representatives and senators and let them know you support this bill. Thank those who have already signed on and encourage those who have not yet signed on to do so.
Their telephone numbers can be found at: