Absurd insurance battles are costly for those with rare conditions

For those of us in the rare disease community, battling health insurance companies is not just a story we’ve heard; it’s a reality we live. Denials for lifesaving treatments, endless waits for approvals, and hours spent on the phone advocating to get the care our doctors have already prescribed are not mere inconveniences. They’re barriers  jeopardizing our health, our stability, and sometimes our lives. For a system ostensibly designed to safeguard patients, it often feels like cost takes precedence over humanity.

I’ve experienced this harsh truth firsthand. After years of trial and error, I finally found the right prophylactic medication to manage my hereditary angioedema (HAE). The number of my attacks decreased drastically, offering me a semblance of stability and peace. Then one day I received a call from my insurance provider, which informed me that in the next year my policy would cover my rescue medication, but not my prophylactic.

I was stunned. “Excuse me?” I thought. “How is that even possible?”

Recommended Reading

January 9, 2025 News by Katherine Poinsatte, PhD

On-demand treatment delays for HAE attacks boost severity, duration

That call sent me spiraling both emotionally and physically, triggering a flare that underscored how deeply these decisions affect our lives. The insurer’s rationale was clear: The cost of my prophylactic medication outweighed the occasional use of rescue medication. But here’s the ironic catch-22: Because I was staying stable on the prophylactic, I rarely needed to order the rescue medication.

Determined to fight back, I began ordering the rescue medication every single day. And wouldn’t you know it? Within two weeks, the insurance company reversed its decision and approved both medications. It was a small victory, but one that came at the cost of my mental and physical health.

Fast forward to this year’s open enrollment season through the Affordable Care Act. My 2024 insurance plan was suddenly no longer available in my region. The retail cost of my medications was $312,436.62 per month, totaling $3,749,239.44 annually. Without proper coverage, my monthly out-of-pocket costs would have been an unfathomable $278,725.11.

The next few weeks were a nightmare. Call after call, I faced the same responses: “These medications aren’t in our formulary,” “We can’t guarantee coverage,” or “There’s no process to ensure approval before enrollment.” I felt that I was navigating a labyrinth designed to wear me down.

Finally, I connected with someone who provided a sliver of hope. They informed me that if I enrolled in a specific plan through the same company I’d been using, my prior authorizations would roll over automatically. The catch? A higher monthly premium. At that point, I didn’t care. I took the plan.

This grueling process, which spanned weeks of persistence and tears, is one that far too many in our community endure. And the stakes couldn’t be higher. A lapse in care isn’t just a financial burden; for many of us, it’s a threat to our very existence.

This experience isn’t isolated. I’ve faced countless obstacles over the years. Once I waited five months for approval of a multiple sclerosis medication, as I’ve been diagnosed with that condition as well. When the approval call finally came, I was pulling into my driveway after a five-day hospital stay. That particular flare had robbed me of my eyesight, a stark reminder of how delays in care can have devastating consequences.

These aren’t just bureaucratic inefficiencies; they’re life-altering failures. We don’t ask to need these treatments to survive or thrive. But when the system prioritizes profits over people, the result is a healthcare landscape riddled with absurdities.

The bigger picture

Navigating the U.S. healthcare system is daunting for any patient, but for those of us with rare or chronic illnesses, the challenges are amplified. Insurance companies act as gatekeepers to essential care, making decisions in boardrooms that profoundly affect lives. The disconnect between medical professionals’ expertise and cost-driven policies often leaves patients stranded.

Delays and denials not only hinder recovery, but also compound the emotional, physical, and financial toll on people who are already vulnerable. The stress of these battles can trigger flare-ups, cause relapses, and worsen overall health — ironically, leading to higher costs for insurers in the long run.

It’s a system that feels fundamentally broken. Patients like me aren’t asking for luxury; we’re asking for the ability to access the care our doctors say we need. Yet we’re met with roadblocks that erode trust and dignity.

The way forward

Reforming the healthcare system requires more than policy tweaks; it demands a shift in priorities. Insurance companies must be held accountable for placing profits above lives. Prior authorizations, formulary restrictions, and arbitrary denials need to be reevaluated with patients at the center of the process.

For those of us in the rare disease community, advocacy isn’t just a choice; it’s a necessity. We fight not only for our own survival, but also for systemic change that ensures no one else has to endure these absurdities.

To the broader public: Our stories may seem distant, but the cracks in the system affect us all. Whether through chronic illness, an accident, or a loved one’s diagnosis, the need for compassionate, efficient care will touch everyone at some point. The question is, will the system be ready when that care arrives?

As for me, I’ll keep fighting. Because giving up isn’t an option — not when my life and the lives of countless others depend on it.

Note: Angioedema News 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.