Keep an Eye on the ACA and Share Your CF Stories

By now, we’ve all heard that steps have been taken toward repealing the Affordable Care Act (ACA). Even within my network of friends and family, I’ve heard mixed responses. There are those who detest the ACA, those who believe it should be protected, and those who think it should be fixed. But what does this mean for those of us with cystic fibrosis?

Unfortunately, that’s not my place to say. In my career as a biomedical engineer, I spend hours each week reading research papers from the field. Some articles have consistent findings and others have findings that contradict what some may think. Perhaps it’s this background in science that has led me to interpret these debates from multiple angles. However, this debate keeps unrolling faster than my ability to absorb, process, and analyze the impending changes. This column is not political. As I said, I do not have expertise in such a field. But I do have power in understanding one thing: What it’s like to live with cystic fibrosis.

In times of change, communities must come together more than ever. What may affect me may not affect others, and what may devastate others may have no impact on me. But my philosophy as an advocate is to protect those who are the safest to those who are the most at risk. Regardless of your political beliefs, call your representatives, call your senators. Let your communities know your story. The struggles the CF community faces are unique and lifelong. We don’t just acquire CF, and we don’t have a way to beat it. This is why every political decision that is made may affect us for years to come.

So, what matters most to me? I want a safeguard in place that protects the entire CF community and the United States. People with CF cannot afford to be denied coverage or charged more for a pre-existing condition. Families, caregivers, and patients of CF know how absurd medications can cost. Any loss of insurance or an increase in premiums could easily bankrupt a community already struggling with affording healthcare.

To put things into perspective, the cost of standard CF medications for a month can well exceed $30,000. This does not include clinic visits or the possibility of hospitalization. Now, imagine adding a coverage cap. Once that limit is hit, patients and families could be hurdled into crippling debt to access the medications and healthcare they need.

My medications are my crutch to stay as healthy as I can be. But even with our medications and healthcare, we still face daily obstacles. So, please, call members of congress and tell them your story. It matters. Collectively, we have a responsibility to look out for each other.

(The CFF has created a simple point of contact for calling and emailing your officials. See it here.)

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.