Navigation Links
Senate Introduces Bill to Boost Participation in Clinical Trials for Rare Diseases
Date:9/16/2009

Bill would remove financial penalties for participating in research studies

BETHESDA, Md., Sept. 16 /PRNewswire-USNewswire/ -- Four members of the United States Senate introduced legislation today to allow patients with rare diseases to participate in clinical drug studies without losing their eligibility for public healthcare coverage, echoing a move by the House of Representatives last month.

The "Improving Access to Clinical Trials Act" is co-sponsored by Senators Ron Wyden (D-OR), Chris Dodd (D-CT), James Inhofe (R-OK) and Richard Shelby (R-AL).

Researchers who develop drugs to treat rare diseases such as cystic fibrosis often struggle to recruit participants for clinical trials because of limited patient populations. To compound the problem, current law prevents many people who receive Supplemental Security Income (SSI) from accepting research compensation because it would make them ineligible to continue receiving government medical benefits. This financial penalty prevents significant numbers of people with rare diseases from participating in clinical studies.

"For many suffering from rare diseases, access to clinical trials is their best hope for treatment," said Senator Wyden. "This legislation will make sure the small financial incentives these people receive will not be counted against them if they are on SSI or Medicaid. Patients suffering from rare diseases should not have to choose between their best hope for treatment or losing benefits, nor be denied the access more financially fortunate patients receive."

"For those living with a rare disease, clinical drug studies can offer a ray of hope: access to cutting-edge medical technologies that may help treat or even cure a serious illness," Senator Dodd said. "Currently, individuals who receive public assistance often do not participate in compensated clinical trials for fear of losing their Medicaid or Supplemental Security Income. This legislation will remedy this inequity by ensuring that more Americans, including those who receive public assistance, have access to these potentially life-saving clinical drug studies."

"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 SSI and Medicaid income calculations," said Senator Inhofe. "Though it will have a negligible impact on the federal budget, it will make a dramatic difference in the lives of those who will gain access to potentially life-saving treatments by enrolling in clinical trials as well as all those in the future whose lives will be improved by the medical advances that arise from this research.

"Scientists and researchers across our nation continually produce new therapies that have the potential to save the lives of countless Americans who suffer from life-threatening rare illnesses," said Senator Shelby. "These patients should not be forced to choose between the health benefits they desperately need and the opportunity to participate in a clinical trial that could improve their medical condition. I am confident that this legislation will open a pathway for more patients to receive life-saving treatments."

Fifty years ago, there were no drugs for people with CF and those with the disease rarely lived to attend elementary school. Today, because of the Cystic Fibrosis Foundation's focus on innovative and aggressive research, there are more than 30 potential therapies in development, and the median life expectancy is higher than 37 years.

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is the leading organization devoted to curing and controlling cystic fibrosis. Headquartered in Bethesda, Md., the Foundation funds CF research, has more than 70 chapters and branch offices throughout the country, and supports and accredits a nationwide network of 110 CF care centers, which provide vital treatments and other CF resources to patients and families. For more information, visit www.cff.org.


'/>"/>
SOURCE Cystic Fibrosis Foundation
Copyright©2009 PR Newswire.
All rights reserved

Related medicine technology :

1. Senate Told Brain Technology Can Impact Public Policy
2. Quest Diagnostics Introduces ClariSure(TM) Test for Identifying Chromosome Abnormalities Associated With 85 Developmental Disorders in Children
3. Dr. Dello Russo Introduces the New EYE-Q Lasik
4. Caliper Life Sciences Introduces Drug Combination Services to Identify Synergistic Response of Compounds
5. Wedgewood Introduces Refresh(TM) Exchange-Program: Free Exchange of Expired Veterinary Compounded Medications Solves Key Industry Problem
6. CeloNova BioSciences Introduces a New Class of Coronary Stent: The CATANIA(TM) Coronary Stent System with NanoThin Polyzene(R)-F
7. Thermo Fisher Scientific Introduces Breakthrough in RNA-Interference Technology
8. Schering-Plough Provides Update on Boceprevir Clinical Development and Introduces Potent Next-Generation Oral HCV Protease Inhibitor for Treating Patients With Chronic Hepatitis C
9. Siemens Introduces New Standard of Care for Breast Ultrasound
10. Perceptive Informatics Introduces Medical Imaging Methodology to Accelerate Development Decisions About Alzheimers Treatments
11. Quest Diagnostics Introduces First Commercial Laboratory Test for Identifying the H1N1 Swine Flu Virus
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:1/13/2017)... 2017  Alfalfa, cattle, leafy greens and rosy cheeked children ... , which emphasizes the food industry,s shift from response to ... COPAN,s Swab Rinse Kit (SRK™) ... process in the wake of the new FDA Food ... is expanding the U.S. production of the SRK ...
(Date:1/13/2017)... -- Secretary of Health Karen Murphy today addressed ... Misericordia University and discussed the Wolf Administration,s efforts to ... . "The opioid epidemic is the worst ... professional career," Secretary Murphy said. "This area of ... heroin and prescription opioid overdoses. Across the commonwealth in ...
(Date:1/13/2017)... BOISE, Idaho , Jan. 12, 2017 /PRNewswire/ ... status by Accreditation Commission for Health Care (ACHC) ... the largest national food and drug chain with ... service for pharmacy patients. Accreditation by ... meeting national standards to facilitate a higher level ...
Breaking Medicine Technology:
(Date:1/16/2017)... ... January 16, 2017 , ... Atlanta-based incentive company Incentive ... the wheelchair accessibility industry, BraunAbility . Incentive Solutions will provide BraunAbility a ... vehicles. With this new incentive plan, BraunAbility plans to continue their tradition of ...
(Date:1/16/2017)... ... January 16, 2017 , ... Board-certified oculoplastic surgeon Dr. Mehryar ... official journal of The American Society for Aesthetic Plastic Surgery, in which he ... designed to correct drooping, retracted lower eyelids, which usually result from genetics, injury, ...
(Date:1/16/2017)... ... January 16, 2017 , ... San Francisco dentist, Dr. ... the latest in 3-D scanning device which is capable of taking digital impressions of ... in dentistry, such as CAD CAM restorations , in terms of speed, efficiency ...
(Date:1/15/2017)... ... January 15, 2017 , ... In this role, Courtney will be responsible ... the asthma & allergy friendly mark. This certification program was created by ASL and ... products to be more suitable for the 60+ million people living in the U.S. ...
(Date:1/15/2017)... ... January 15, 2017 , ... Accreditation ... achieved accreditation for its specialty care services. Albertsons Companies is the largest ... care service for pharmacy patients. , Accreditation by ACHC reflects Albertsons Companies’ dedication ...
Breaking Medicine News(10 mins):