U.S. Senate Cystic Fibrosis Caucus Adds Momentum to the Fight

Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We are working toward a day when CF stands for “Cured Forever.”

June 21, 2016 | 4 min read
Sen. Edward J. Markey

Over the past 60 years, substantial progress has been made in diagnosing and treating cystic fibrosis. Research advancements have led to a deeper understanding of the genetics of cystic fibrosis, and there are now two federal government-approved treatments based on that research. Several other drugs are advancing through the pipeline to treat debilitating symptoms of the disease, as well as to address more of the genetic mutations of CF. It is an exciting and hopeful time as people with cystic fibrosis are living longer and fuller lives than ever before, with more progress to come. 

But much more work remains to be done.

The stories I hear from families in Massachusetts who deal with cystic fibrosis on a daily basis are the reasons why I work on legislation that would make it easier for families and people dealing with CF and other rare diseases to get the help they need.   

When I served in the House of Representatives, I introduced the "Improving Access to Clinical Trials (IACT) Act," which enabled people with cystic fibrosis and other rare diseases to participate in clinical trials without losing eligibility for important government benefits. I followed this legislation with the "Expanding and Promoting Expertise in Review of Rare Treatments (EXPERT) Act" in 2012, which strengthens the Food and Drug Administration's review of new products for rare diseases like cystic fibrosis. 


After being elected to the Senate, I introduced the "Ensuring Access to Clinical Trials Act," which was signed into law in 2015, and made the provisions of the IACT Act permanent. Last month, Senator Chuck Grassley (R-Iowa) and I partnered to create the Cystic Fibrosis Caucus in the U.S. Senate. We then worked together to pass a resolution designating the month of May 2016 as "Cystic Fibrosis Awareness Month." 

But we cannot continue our progress without sustained, predictable funding for biomedical research. Only with that support will we be able to continue to untangle the mysteries of cystic fibrosis, to search for better diagnostics and treatments and to find a cure. 

In 2006, Representative Cliff Stearns (R-Fla.) and I launched the Cystic Fibrosis Caucus in the House of Representatives to raise awareness, to broaden and deepen research into a cure and to design policy solutions to fight the battle against this devastating disease. Since then, we have done much to highlight the importance of beating this dreadful, cruel disease. 

Our work now is to recommit to people with cystic fibrosis and their loved ones so that Congress is dedicated to supporting them. Through the Senate Cystic Fibrosis Caucus, we are holding several briefings to educate members of Congress about CF, the possibilities of precision medicine and the extraordinary model of care and drug development for this disease.


We need to provide people with CF with hope for a better future, and we can do that by making greater investments in research, providing resources for treatment and showing our unwavering commitment to people with cystic fibrosis, their families and their caregivers. 

Senator Grassley and I will be honorary co-hosts at an event on June 23 to launch the new Senate CF Caucus. All are welcome to attend so that we can continue to chart the new frontiers of cystic fibrosis science and treatment.

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.

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Senator Edward J. Markey represents Massachusetts in the United States Senate. He previously served for 37 years in the U.S. House of Representatives, and has a prolific legislative record on major issues across the policy spectrum and a deep commitment to improving the lives of the people of Massachusetts and our country. Senator Markey serves on the Foreign Relations, Small Business and Entrepreneurship, Commerce, Science and Transportation, and Environment and Public Works Committees. He attended Boston College and Boston College Law School. For more information on Senator Markey, visit his official website, markey.senate.gov.

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