Navigation Links
New Legislation Seeks to Boost Participation in Clinical Trials for Rare Diseases
Date:6/15/2009

Bill would remove financial penalties for participating in research studies

BETHESDA, Md., June 15 /PRNewswire-USNewswire/ -- New legislation introduced today would allow patients with rare diseases to participate in clinical drug studies without losing their eligibility for government healthcare coverage.

The "Improve Access to Clinical Trials Act" is co-sponsored by Representatives Edward J. Markey (D-MA) and Cliff Stearns (R-FL) and 30 members of the House of Representatives.

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.

Researchers developing drugs to treat rare diseases struggle to recruit participants for clinical trials because of limited patient populations. This is particularly true for cystic fibrosis (CF). More than 30 promising CF drugs are in development, yet only about 30,000 people in the U.S. have this life-threatening, genetic disease.

"We are grateful to Representatives Edward Markey and Cliff Stearns for introducing this important bill that allows more people with rare diseases - including cystic fibrosis - to participate in clinical trials," said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "Cystic fibrosis is a devastating disease and this new legislation clears the way for promising drugs to move more swiftly from the research phase into the hands of people who need them."

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.


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

Related medicine technology :

1. California Legislature Passes Historic HIV Testing Bill (AB 682); AHF Urges Governor to Sign Crucial Lifesaving Legislation
2. Mayo Clinic Seeks New Therapies for Alcoholic Hepatitis
3. Gates Foundation Seeks Proposals for Innovative Global Health Research
4. AHF Seeks White House Clarification After Press Room Flap Over CDCs HIV Numbers
5. Vanderbilt Medical Center Seeks Middle Tennesseans with Type 2 Diabetes Who are Overweight for National Clinical Trial
6. A Worldwide Phase III Clinical Trial Seeks U.S. Patients to Explore Investigational Drug Phenoxodiol
7. Biopure Seeks Compassionate Use Protocol for Treatment of Acute Anemia
8. New Therapy Enlists Immune System to Boost Cure Rate in a Childhood Cancer
9. DSM Announces Yield Boosts of 5-10 Fold With XD(R) Technology for Mammalian Manufacturing Platforms
10. New Study Shows Probiotic Strain Effective in Boosting Immune Response to Flu Virus
11. Long-Term Study Evaluates Boosted PREZISTA(R) Vs. Lopinavir/Ritonavir as Part of HIV Combination Therapy in Treatment-Naive Adults
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:3/30/2021)... ... March 29, 2021 , ... The University of Texas Health Science Center ... San Antonio Multispecialty and Research Hospital, a destination center for research and treatment of ... In a nod to the COVID-19 pandemic, the ceremony was held virtually. , William ...
(Date:3/30/2021)... ... March 29, 2021 , ... Iora Health ... primary care, has partnered with Devoted Health , one of the fastest-growing ... across Maricopa County and provides seniors with the highest-quality care and experience possible, ...
(Date:3/30/2021)... CITY (PRWEB) , ... March 29, 2021 , ... ... has joined the Vaccine Credential Initiative (VCI), a group bringing together leading health ... record of vaccination status, based on open, interoperable standards. By joining the VCI ...
Breaking Medicine Technology:
(Date:3/30/2021)... , ... March 29, 2021 , ... ... the 21st Century , A Virtual Workshop Presented by WCG FDAnews and Cerulean ... 4:30 pm EDT, https://wcg.swoogo.com/modern-sop-and-quality-systems , Are one’s SOPs written for the ...
(Date:3/30/2021)... ... March 29, 2021 , ... According to data released ... reproductive age (13-44) in need of publicly funded contraception live in counties impacted by ... Colorado’s 64 counties have lost some of their Title X resources. , The ...
(Date:3/30/2021)... ... March 29, 2021 , ... Health Literacy Innovations (HLI), a ... confusion due to low health literacy today announces a new partnership with the ... work with ACAP’s member Safety Net Health Plans, those that provide comprehensive health ...
(Date:3/30/2021)... ... ... Dr. Colin Campbell is proud to announce the 1 year anniversary in their new state ... internal medicine and is a primary care specialist who has been practicing for 23 years. ... keep South Jersey healthy one patient at a time. , “Over the past year, Dr. ...
(Date:3/30/2021)... ... March 30, 2021 , ... The COVID-19 ... and survivors; their families; and their caregivers. Crossroads4Hope is addressing the needs of ... emotional support system, MyGo2Support, which meets needs of people impacted by cancer, no ...
Breaking Medicine News(10 mins):