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There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
Clinical trials that test potential drugs and therapies in people with cystic fibrosis are a major part of CF research. They take place at Cystic Fibrosis Foundation-accredited care centers all over the United States and enroll people with CF of all ages.
When you are deciding whether to join a clinical trial, you should consider logistics.
I'm a big proponent of participating in clinical research, but COVID-19 made me think twice about participating in a clinical trial that required six hospital visits. However, a screening visit reassured me that the researchers were taking all the necessary precautions.
Legislation introduced today will help more people with cystic fibrosis, and other rare diseases, participate in clinical trials without fear of losing important benefits or health coverage. The bill is sponsored by a bipartisan group of senators and legislators.
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
The House of Representatives has passed a vote on the Ensuring Access to Clinical Trials Act (EACT), which is now set to go to the President for his signature.
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.
I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.