I permanently lost 60% of my lung capacity before my 25th birthday. Doctors have told me I may need a double lung transplant in the future. My condition worsened while I waited for approval for the only treatment that could help my lungs. Instead of listening to my doctor’s professional medical advice, my insurer denied coverage, delayed decisions, and demanded endless paperwork. After months of waiting and watching my health decline, my family and I decided our only option was to start the treatment, paying $2,500 per week out of pocket despite having paid thousands in premiums. It took another six months of fighting before the treatment was finally approved.

Last May, just as I was starting Physician Assistant school, I began experiencing severe shortness of breath. I went from running between classes to struggling to climb a single flight of stairs. My pulmonologist prescribed inhalers, but nothing worked. A lung capacity test revealed I had already lost significant lung function. Doctors initially suspected COPD, an irreversible condition, but I was quickly diagnosed with Alpha-1 Antitrypsin Deficiency. As my insurer continued to delay coverage, I kept losing lung capacity waiting for care. Ultimately, my condition deteriorated to the point where I was left with just 40% lung function and needed supplemental oxygen.