For Kansans with chronic illness, battling resistant infections is a matter of life and death

Most Americans have taken an antibiotic for one ailment or another. Think strep throat, urinary tract infections, ear infections. For most people, you start the antibiotic and shortly thereafter, your symptoms clear up.

Antibiotics, along with antifungals and antivirals, help treat millions of infections each year. But for some people, like me and my siblings, antibiotics are a critical tool in managing our lifelong chronic illness — cystic fibrosis — that until recently had no medical alternatives.

That’s why antimicrobial resistance, the situation when treatments no longer work to combat certain bugs, is deadly serious for my family. I’m grateful to U.S. Rep. Jake Turner, R-Kansas, for introducing legislation that will support and promote new and innovative treatments.

Reliance on antibiotics is a reality for me, my sister Allison and our brother Mason. We were all diagnosed with CF as young kids. We’ve relied on antibiotics to clear the mucus that develops in the lungs and other organs of cystic fibrosis patients.

While growing up, I was in an out of the hospital roughly every 18 months to receive higher dose intravenous antibiotics.

More recently, both Allison and I have both had positive cultures for MRSA infections and have struggled with our doctors to find treatments that worked.

Following the birth of her first child in 2016, Allison cultured positive for a mycobacterium — a hardy bacteria being found in a growing number of cystic fibrosis patients that can be difficult to treat. And that was true in Allision’s case. Besides being a new mom, Allison was having uncontrollable coughing fits at all times of the day. She was sleep deprived and very sick. She later told me that she hoped she lived long enough so that little Callie would remember her.

The good news is that in 2019, a breakthrough treatment came to market that addresses the underlying genetic mutations that cause CF. All three of us are now on this treatment, and it has been a game changer — wiping out the MRSA infections and letting us lead healthier, more normal lives. I believe if it were not for this new treatment, Allison might have run out of treatment options. We both know people who have died from CF due to a lack of effective antibiotics.

That is why my family supports proposed legislation in Congress that would do more to bring more antibiotic options to market.

The PASTEUR Act (Pioneering Antimicrobial Subscriptions to End Upsurging Resistance) was re-introduced by U.S. Sens. Michael Bennet, D-Colorado, and Todd Young, R-Indiana. They have been joined by U.S. Reps. Scott Peters, D-California; Drew Ferguson, R-Georgia; Mike Levin, D-California and LaTurner.

The bill aims to encourage innovative drug development targeting the most threatening infections, improve the appropriate use of antibiotics and ensure domestic availability of antibiotics when needed. It was heard by the Senate HELP (Health, Education, Labor and Pensions) Committee on July 11.

This legislation, along with other policies that encourage innovative treatments — like the one that has changed our lives — are critically important to patients living with chronic illnesses.

Morgan Barrett lives with her family in Baldwin City. She works for the Climate + Energy Project and is an advocate with the Cystic Fibrosis Foundation. Through its opinion section, Kansas Reflector works to amplify the voices of people who are affected by public policies or excluded from public debate. Find information, including how to submit your own commentary, here.