Legislative Action Alert from NORD: Support Expanded Access to Clinical Trials

Current rules regarding eligibility for Supplemental Security Income (SSI) prevent many people with rare diseases who receive SSI from participating in clinical trials. The inability of SSI beneficiaries to accept research compensation for participation in a clinical trial has been shown to be a significant deterrence to research participation.

Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL) will introduce legislation to change current Social Security Supplemental Security Income (SSI) eligibility requirements so that research compensation for participation in a clinical drug study is no longer considered income for determining SSI eligibility. (See proposed legislation) <http://nordenews.createsend.com/t/r/l/tuhtkd/htlrlidr/r>

ACTION

Write your U.S. Representative asking that he/she cosponsor this legislation that is so important to the rare disease community. They can contact Amit Mistry (202-225-2836) with Representative Markey or Nicole Alexander (202-225-5744) with Representative Stearns to co-sponsor.

SAMPLE LETTER

As a constituent and one of the nearly 30 million Americans affected by one of the nearly 7,000 known rare diseases, I urge you to co-sponsor legislation to be introduced later this month by Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL) to change current Social Security Supplemental Security Income (SSI) eligibility requirements so that research compensation for participation in a clinical drug study is no longer considered as income for determining SSI eligibility.

To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with rare diseases are needed to participate in clinical trials. Yet, current rules regarding eligibility for SSI prevent a significant number of people with rare diseases from participating in clinical trials that provide compensation for participation.  As a result, many are forced to choose between taking part in important clinical trials and keeping their benefits, including Medicaid, which provides essential medical care.

This significantly reduces the number of patients able to help test promising new therapies. The bill to be offered by Congressmen Markey and Stearns will help potential new therapies for rare diseases to move swiftly from the research stage into the hands of patients who need them.

Twenty-five years ago, there were only 10 drugs to treat rare diseases. Today, thanks to the Orphan Drug Act, there are 339 orphan drugs, biologics and humanitarian devices that treat about 12 million men, women and children.

Help expand participation in clinical trials to provide treatments for the millions of people with rare diseases who continue to hold out hope that a life-saving therapy will one day be developed for their condition. Contact Amit Mistry (202-225-2836) with Representative Markey or Nicole Alexander (202-225-5744) with Representative Stearns to co-sponsor this bill.

Thank you for your help to ensure longer and healthier lives for all people with rare diseases.

Source

June 2, 2009