WASHINGTON D.C. — Oswego County resident and cystic fibrosis awareness advocate Christina Thompson met with federal officials including U.S. Rep. John Katko on Capitol Hill last week as part of an effort to educate lawmakers on how the chronic disease impacts the life of people with cystic fibrosis, their family and friends and their healthcare coverage challenges.
Cystic fibrosis is a progressive, genetic ailment that causes persistent lung infections and limits the ability to breathe over time. The illness has no cure. Clogged lungs, pulmonary infections and respiratory complications all everyday challenges for those living with cystic fibrosis (CF).
Thompson, 18, is a teen advocate who resides in Oswego Town and has experienced the loss of a loved one to cystic fibrosis, She said seeing her cousin Heather Kanaley, who battled the disease until her passing in 2010, propelled her to raise awareness for cystic fibrosis advocates.
“Growing up around [cystic fibrosis] and having seen it with my cousin, seeing her struggles being young and seeing it happen affected me a lot,” she said.
The recent high school graduate, who plans to attend SUNY Broome Community College in Binghamton, said shining a light on her cousin’s story was the decisive factor that pushed her forward into a life of advocacy.
“There was nobody really to share [Heather’s] story,” Thompson said, adding she reached out to the local Cystic Fibrosis Foundation (CFF) chapter in Syracuse, CFF Central NY, to expand on her advocacy. “She has a son and he wasn't really old enough yet to get the word out there, so I was interested in doing more. I wanted to get her voice out there since she couldn't.”
Thompson met with Katko, R-Camillus, Thursday to discuss the importance of “comprehensive health coverage” for cystic fibrosis patients as part of CFF’s 11th annual Teen Advocacy Day.
The foundation organizes an annual day in the nation’s capital when teenagers can access policymakers representing their native state.
“Teens from across the United States whose siblings, cousins and other loved ones have cystic fibrosis will urge elected officials in Washington, D.C., to fund government agencies that are vital to drug research and development,” according to a release issued by the foundation. “They will also press Congress to protect health coverage for people with cystic fibrosis, a rare and fatal genetic disease.”
This will mark the second time Thompson has attended a Teen Advocacy Day with CFF.
“I think that every day these congressmen and senators meet about policy, so I think when these teenagers coming in from a whole different age group than what they're usually used to meeting and they're sharing their personal stories... it sticks with them,” she said. “I've heard congressman take stories from these teens and bring it back on the floor. That happened two years ago when I was here, so I think the personal stories from these teenagers really stick to them.”
A spokesperson from Rep. Katko said the congressman wanted to solidify his position and he “supports funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA) to cystic fibrosis drug discovery and development.”
In 2017, a study done by CFF logged 1,644 cystic fibrosis patients in the state of New York, with only 282 registered registered care programs in the nation. The same research highlights the difficulties the disease brings upon, suggesting only 43 percent of adults with cystic fibrosis report being married or living together, while only 31 percent of them have full-time or part-time jobs.
Treatment in Oswego County is hard to come by, with some of the nearest centers to offer cystic fibrosis treatment located in Syracuse, according to a spokesperson from CFF.