Why You Should Care if IACT Expires

Anything that slows down progress in research and the cure for this cystic fibrosis is my sworn enemy. Learn why the Improving Access to Clinical Trials Act (IACT) matters for our progress in the fight against CF and what you can do about it.

| 3 min read
Patricia-Burks-headshot
Patty Burks, M.A., RN, CCRC
Consult-Teen-Female-Doctor

When I joined Washington University School of Medicine in St. Louis as a CF research coordinator in 2007, I quickly learned that recruiting patients into clinical trials was a major part of my job. I was amazed to find the number of people with CF who were eager to participate in clinical trials but were unable to because the money earned from participating would be counted as income, which would cause them to lose their eligibility for Supplemental Security Income (SSI) and Medicaid

Some of these patients and families asked if they could participate without compensation, but it was determined it would be unethical to compensate some patients but not others. At the same time, it seemed wrong that these patients were unable to participate in research that could benefit their health simply because of their income level.

This all changed the day Improving Access to Clinical Trials Act of 2010 (IACT) became law. 

With its implementation, the doors were opened for those with rare diseases like cystic fibrosis. This law allows people to earn up to $2,000 per year in compensation for participating in clinical trials without counting it as income against their eligibility for SSI and Medicaid.

Patients who previously would not have considered a trial for fear of losing vital benefits could now sign up to take part.

There is a group of children and adults with CF whose lives were forever altered because of the bill. As a result of the legislation, some were now able to join trials for disease modifying drugs and were given free access to the drug once the placebo trial was completed.

So as you can see, the bill is crucial to ensuring that patients of all economic levels can participate in clinical trials.

But it's set to expire on Oct. 5 -- unless Congress takes action and passes the Ensuring Access to Clinical Trials Act of 2015 (EACT), which would make this a permanent law.

Anything that speeds up progress in research and the cure for cystic fibrosis is something I want to be involved in, and I imagine you do, too.

Please contact your representative and ask that they support the Ensuring Access to Clinical Trials Act, HR 209/S 139.

Thanks for joining me in this fight to make research accessible to all people with CF.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Topics
Advocacy | Clinical Trials
Patricia-Burks-headshot

Prior to joining the CF Foundation, Patty served as a CF research coordinator at Washington University School of Medicine in St. Louis, Mo. There, she was part of the team responsible for running CF clinical trials and had the great joy of working with children and adults with CF. At the Foundation, Patty's work focuses on supporting clinical research teams across the country so they can continue to provide high-quality, timely conduct of clinical trials.

Recent Community Posts
How Hospice Helped Me Through My Daughter’s Passing
Blog | 5 min read
Not Being Prepared to Outlive Your Loved Ones
Blog | 7 min read
Making Lifelong Friendships With Other Moms of Kids With CF
Blog | 5 min read