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.
Alpha-1 Antitrypsin Deficiency is a genetic condition that causes lung function to deteriorate, and it is irreversible. For patients like me, there is an FDA-approved treatment: enzyme replacement therapy, which slows disease progression and protects remaining lung function. Without this medical treatment, I was at serious risk of permanent complications. Yet my insurer refused to approve it, despite my documentation and recommendations from two specialists.
The last thing anyone wants to do while fighting for their life is battle a corporate insurer. Each denial came with new obstacles posed by reviewers for the insurance company, changing criteria, repeated tests, and even claims that my documentation was “lost.” Every week of delay caused irreversible lung damage. I was forced to take medical leave from school, drain my savings, and rely on my family, who spent tens of thousands of dollars of their own money and ultimately launched a GoFundMe to help cover costs.
My family spent months and countless hours navigating the appeals process. The insurer finally approved my therapy, but without reimbursing me any of the out-of-pocket costs, even though nothing about my diagnosis had changed. Patients shouldn’t have to go for months without treatment, pay tens of thousands of dollars, and navigate complicated processes to pressure insurance companies to provide coverage.
Today, the therapy is working. I have not lost additional lung function since starting the enzyme therapy. But every year, I’m forced to reapply for the same life-saving medication. Each renewal brings anxiety that I could be denied again.
My story is far from unique. Between 2022 and 2023, commercial insurance denials increased more than 20%, according to the Kaiser Family Foundation. Further, the American Hospital Association reports that nearly half of patients who experience care delays see their health decline as a result. Insurers often use automated “prior authorization” systems to reject or delay coverage, boosting profits at the expense of patients’ health and even lives.
For patients with rare or chronic conditions, these delays are devastating and sometimes deadly. Denying or delaying needed treatment leads to worse health outcomes, higher long-term costs, and avoidable suffering. Yet because insurers operate with minimal transparency, patients are left without recourse when life-saving treatments are caught in bureaucratic limbo.
I’m speaking out because no one should have to beg, fight, or crowdfund for the only therapy that works. I’m one of the lucky ones — my family had the resources to keep me alive. Many others don’t.
BEHIND OBAMACARE’S LOOMING ENROLLMENT DROP
Lawmakers must hold corporate insurers accountable for systemic denials, enforce transparency in coverage decisions, and protect patients’ right to timely, medically necessary care. The public deserves a system that prioritizes patients over insurer profits.
Corporate insurance delays permanently stole 60% of my lung function and resulted in my need for supplemental oxygen. I’ll spend the rest of my life fighting to make sure they don’t take someone else’s.
Anna Hocum is a Milwaukee-based student living with a rare genetic disorder, focused on how insurance coverage delays caused irreversible damage to her health.