MediciGlobal

It’s a little known fact that Americans receiving Supplemental Social Security income are not allowed by law to accept compensation for research. The dilemma is that many people with debilitating illnesses fall into this category. They are ineligible to receive government medical benefits and this in turn prevents them from participating in clinical studies. Patients are already hard to find and denying them access to clinical research over the issue of reimbursement for time and travel is folly. It impedes clinical progress and is counterproductive to the goal of advancing new medicines.

As word gets out, patients, academia and industry groups are working together to support legislation that allows individuals with chronic debilitating and rare diseases to become involved in clinical trials without losing their eligibility for government assisted healthcare benefits. Some of these groups include the Cystic Fibrosis Foundation, the National Health Council, Johns Hopkins University, Yale University Medical College, and Pharmaceutical Research and Manufacturers Association (PhRMA).

The President and CEO of the Cystic Fibrosis Foundation, Robert Beall, PhD., summed the situation up this way: “Clinical trials are critical for developing effective therapies for cystic fibrosis and dozens of other rare diseases.” Dr. Beall is encouraging the US government to quickly pass a law that will support life-saving research for the many people who will benefit from new medical advances. (Medical News Today 9/29/09)

The bill to be voted on was introduced into the US Senate on September 16th. It is called “The Improving Access to Clinical Trials Act.”

Specifically this bill allows patients with a rare disease to disregard up to $2,000 of compensation received for participation in a clinical trial in their Social Security income (SSI) and Medicaid income calculations. Proponents of the bill have pointed out that it will have a negligible impact on the federal budget, and it will make a significant difference to those who will now have access to potentially life-saving treatments via clinical trials, and the output of this research.

It is estimated that 10% of Americans are afflicted with one of the roughly 700 existing diseases described in the bill, and it is estimated two new pathologies are described every week in medical publications.

To track the current status of this bill, click here: http://www.govtrack.us/congress/bill.xpd?bill=h111-2866

To support this bill, contact: http://www.usa.gov/Contact/Elected.shtml