Action Alert: Support the Improving Access to Clinical Trials Act

August 18, 2010 – The U.S. Senate has approved S. 1674, the Improving Access to Clinical Trials Act and it is now in the hands of the U.S. House of Representatives. CAF supports this bill, which makes it possible for people with Supplemental Security Income (SSI) to participate in clinical trials for rare diseases (such as thalassemia) without risking their SSI eligibility.

Current rules regarding eligibility for 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.

What is a clinical trial?


A clinical trial is a research study to answer specific questions about vaccines or new therapies or new ways of using known treatments. Clinical trials (also called medical research and research studies) are used to determine whether new drugs or treatments are both safe and effective. Carefully conducted clinical trials are the fastest and safest way to find treatments that work in people.

Trials are in four phases: Phase I tests a new drug or treatment in a small group; Phase II expands the study to a larger group of people; Phase III expands the study to an even larger group of people; and Phase IV takes place after the drug or treatment has been licensed and marketed.


The Act changes current Social Security Supplemental Security Income (SSI) eligibility requirements so that research compensation (up to $2,000) for participation in a clinical drug study for a rare disease or condition is no longer considered income for determining SSI eligibility. Click here to view the entire bill.

It’s now up to the House of Representatives to take action on this important bill before members leave in October to campaign in preparation for the November elections. In the House, the bill is H.R.2866; the title is “Improving Access to Clinical Trials Act of 2009.” The sponsor is Rep Edward J. Markey.

Check the list below to see if your Representative is currently a cosponsor. If not, call his/her office in Washington DC today to ask that he/she cosponsor H.R. 2866. Let them know why this bill is important to you, your organization, and the entire rare disease community. (To find out who represents you and how to contact him/her, go to


Rep Alexander, Rodney [LA-5]
Rep Altmire, Jason [PA-4]
Rep Bachus, Spencer [AL-6]
Rep Baldwin, Tammy [WI-2]
Rep Bartlett, Roscoe G. [MD-6]
Rep Berkley, Shelley [NV-1]
Rep Berman, Howard L. [CA-28]
Rep Berry, Marion [AR-1]
Rep Bishop, Rob [UT-1]
Rep Blackburn, Marsha [TN-7]
Rep Blumenauer, Earl [OR-3]
Rep Blunt, Roy [MO-7]
Rep Bonner, Jo [AL-1]
Rep Bono Mack, Mary [CA-45]
Rep Boucher, Rick [VA-9]
Rep Boustany, Charles W., Jr. [LA-7]
Rep Braley, Bruce L. [IA-1]
Rep Brown, Corrine [FL-3]
Rep Brown, Henry E., Jr. [SC-1]
Rep Brown-Waite, Ginny [FL-5]
Rep Burgess, Michael C. [TX-26]
Rep Capps, Lois [CA-23]
Rep Capuano, Michael E. [MA-8]
Rep Cassidy, Bill [LA-6]
Rep Cleaver, Emanuel [MO-5]
Rep Cohen, Steve [TN-9]
Rep Conaway, K. Michael [TX-11]
Rep Crenshaw, Ander [FL-4]
Rep Davis, Geoff [KY-4]
Rep Davis, Susan A. [CA-53]
Rep DeGette, Diana [CO-1]
Rep DeLauro, Rosa L. [CT-3]
Rep Dicks, Norman D. [WA-6]
Rep Doggett, Lloyd [TX-25]
Rep Doyle, Michael F. [PA-14]
Rep Ehlers, Vernon J. [MI-3]
Rep Ellsworth, Brad [IN-8]
Rep Emerson, Jo Ann [MO-8]
Rep Filner, Bob [CA-51]
Rep Fleming, John [LA-4]
Rep Frank, Barney [MA-4]
Rep Garamendi, John [CA-10]
Rep Gingrey, Phil [GA-11]
Rep Gordon, Bart [TN-6]
Rep Graves, Sam [MO-6]
Rep Grayson, Alan [FL-8]
Rep Green, Gene [TX-29]
Rep Griffith, Parker [AL-5]
Rep Hall, Ralph M. [TX-4]
Rep Hare, Phil [IL-17]
Rep Hastings, Alcee L. [FL-23]
Rep Himes, James A. [CT-4]
Rep Hinchey, Maurice D. [NY-22]
Rep Holt, Rush D. [NJ-12]
Rep Inslee, Jay [WA-1]
Rep Jenkins, Lynn [KS-2]
Rep Kennedy, Patrick J. [RI-1]
Rep Kildee, Dale E. [MI-5]
Rep King, Peter T. [NY-3]
Rep Klein, Ron [FL-22]
Rep Kosmas, Suzanne M. [FL-24]
Rep Larson, John B. [CT-1]
Rep LaTourette, Steven C. [OH-14]
Rep Lee, Barbara [CA-9]
Rep Lee, Christopher J. [NY-26]
Rep Levin, Sander M. [MI-12]
Rep Lewis, John [GA-5]
Rep Lofgren, Zoe [CA-16]
Rep Lowey, Nita M. [NY-18]
Rep Manzullo, Donald A. [IL-16]
Rep Markey, Betsy [CO-4]
Rep Marshall, Jim [GA-8]
Rep Matsui, Doris O. [CA-5]
Rep McCaul, Michael T. [TX-10]
Rep McCollum, Betty [MN-4]
Rep McCotter, Thaddeus G. [MI-11]
Rep McGovern, James P. [MA-3]
Rep McIntyre, Mike [NC-7]
Rep McNerney, Jerry [CA-11]
Rep Meek, Kendrick B. [FL-17]
Rep Miller, Brad [NC-13]
Rep Moore, Dennis [KS-3]
Rep Moran, James P. [VA-8]
Rep Moran, Jerry [KS-1]
Rep Murphy, Christopher S. [CT-5]
Rep Murphy, Tim [PA-18]
Rep Myrick, Sue Wilkins [NC-9]
Rep Olver, John W. [MA-1]
Rep Pallone, Frank, Jr. [NJ-6]
Rep Pascrell, Bill, Jr. [NJ-8]
Rep Paul, Ron [TX-14]
Rep Paulsen, Erik [MN-3]
Rep Peters, Gary C. [MI-9]
Rep Pitts, Joseph R. [PA-16]
Rep Platts, Todd Russell [PA-19]
Rep Polis, Jared [CO-2]
Rep Price, David E. [NC-4]
Rep Rogers, Mike D. [AL-3]
Rep Rogers, Mike J. [MI-8]
Rep Ros-Lehtinen, Ileana [FL-18]
Rep Roskam, Peter J. [IL-6]
Rep Ross, Mike [AR-4]
Rep Rothman, Steven R. [NJ-9]
Rep Ryan, Tim [OH-17]
Rep Sanchez, Linda T. [CA-39]
Rep Sarbanes, John P. [MD-3]
Rep Schakowsky, Janice D. [IL-9]
Rep Schiff, Adam B. [CA-29]
Rep Schock, Aaron [IL-18]
Rep Schrader, Kurt [OR-5]
Rep Schwartz, Allyson Y. [PA-13]
Rep Sestak, Joe [PA-7]
Rep Spratt, John M., Jr. [SC-5]
Rep Stark, Fortney Pete [CA-13]
Rep Stearns, Cliff [FL-6]
Rep Sutton, Betty [OH-13]
Rep Tiahrt, Todd [KS-4]
Rep Tiberi, Patrick J. [OH-12]
Rep Tierney, John F. [MA-6]
Rep Titus, Dina [NV-3]
Rep Tsongas, Niki [MA-5]
Rep Van Hollen, Chris [MD-8]
Rep Walden, Greg [OR-2]
Rep Wasserman Schultz, Debbie [FL-20]
Rep Waxman, Henry A. [CA-30]
Rep Welch, Peter [VT]
Rep Westmoreland, Lynn A. [GA-3]
Rep Wexler, Robert [FL-19]
Rep Whitfield, Ed [KY-1]
Rep Wilson, Joe [SC-2]
Rep Wolf, Frank R. [VA-10]
Rep Woolsey, Lynn C. [CA-6]
Rep Wu, David [OR-1]
Rep Yarmuth, John A. [KY-3]
Rep Young, C.W. Bill [FL-10]
Rep Young, Don [AK]

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