Many of us with pre-existing conditions have been following the news about the future of healthcare in the United States. It really matters to us. Those of us with cystic fibrosis are heavily reliant on access not only to the best doctors, but also to all of the medications we need to stay healthy. This delicate balance to keep ourselves out of the hospital is why we find ourselves nervous about any change to our healthcare system.
Kate Marshall is an 18-year-old patient with CF from Maine who will attend Elon University in North Carolina this fall. She recently shared an article she wrote titled “Living with cystic fibrosis I worry about the AHCA” on Seacoastonline.com.
Kate starts out by writing about her 18th birthday, a major milestone for those of us living with cystic fibrosis.
“Turning  just a few days ago was a major celebration in my life. This is not only because I have officially entered adulthood, but have reached this milestone birthday living with a genetic disease: cystic fibrosis.”
For the first time, we see that half of the CF population is older than the age of 18. This advancement is a direct result of the scientific advancements and the introduction of new therapies.
However, despite the fight to make it to make it into adulthood, the threat of a sub-par healthcare system threatens this hard work. The CF community is complex, and all forms of comprehensive insurance and assistance are needed.
As Kate states in her article, “The American Health Care Act is a serious threat to not only myself, but to all residents of Maine living with a chronic illness. It is vital to have accessibility to adequate health insurance that will not come with higher premiums. As written, the AHCA allows states to let insurers charge higher prices to people with pre-existing conditions. Additionally, proposed annual and lifetime benefit caps, reduced eligibility and lack of adequate funding for Medicaid will negatively impact the course of my disease and all those living with any chronic condition.”
Cystic fibrosis is not easy to treat. It can require many medications and a variety of different equipment. Each of these necessary therapies can be incredibly expensive.
Kate and many in the cystic fibrosis community and the CF Foundation share the same concerns. What is currently proposed is inadequate, and will have severe consequences on much of the CF community.
“Congress has a moral responsibility to pass a plan that will support everyone, beyond those considered healthy,” Kate writes. “Disease transcends political party and does not discriminate due to social or economic status. Then why is our current plan in jeopardy of being replaced by a plan that discriminates based upon all of these factors?”
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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