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 fear of losing Medicaid coverage is a strong disincentive for Social Security beneficiaries to participate in these clinical trials. This is a barrier for people because of how the current laws are written. The impact of this could affect more than 30 million people who are affected by the 7000 rare diseases out there.
This actually boggles my mind considering this seems so backwards. This expection to the rule should have been made a long time ago. It makes you wonder how many people are suffering more because of this fear of losing valuable benefits that help keep them going every month.
You can keep up to date on the progress of this bill at http://www.govtrack .us/congress/ bill.xpd? bill=h111- 2866.
