We shouldn’t have to battle with insurance to access PNH care

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I braced myself for fatigue, transfusions, brain fog, and regular blood work. What I didn’t expect was how much energy I’d spend fighting a second battle — one with my health insurance company.

Living with a rare disease already means learning a new language of medical terms and treatment options. Add insurance policies and billing codes, and suddenly I’m not just a patient, I’m an amateur lawyer and a full-time advocate. Each infusion, lab test, and specialist appointment seems to come with a question mark: Will this be covered? Will I have to appeal?

My treatment plan is carefully coordinated with my hematologist, but insurance doesn’t always see it that way. Sometimes a medication or diagnostic test that’s medically necessary gets flagged as “experimental” simply because PNH is rare. I’ve spent hours on hold explaining that this isn’t elective care — it’s lifesaving. The stress can trigger the very symptoms I’m trying to avoid, such as fatigue and anxiety.

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A financial burden

One of the biggest hurdles is the cost of PNH therapies. Treatments such as complement inhibitors can reach astronomical prices. Even with decent coverage, copays and deductibles add up quickly. I’ve had to plan our family budget around infusion schedules, sometimes choosing which bills to pay first while waiting for reimbursement. The financial juggling act is exhausting.

Appeals are another marathon. I’ve written letters with my doctor, gathered medical records, and followed up repeatedly just to secure a medication that keeps me healthy enough to work full time. There’s nothing quite like celebrating a “coverage approved” letter — it feels like winning a small war — but it’s a victory that can require effort.

Despite the frustrations, I’ve learned a few strategies that help:

• Document everything. Every phone call, every email, every name and reference number goes in a notebook. Paper trails matter.
• Lean on your care team. My hematologist’s office has a patient advocate who knows the insurance landscape and can escalate claims faster than I can alone.
• Seek outside resources. Organizations like the Aplastic Anemia and MDS International Foundation and initiatives like the Global PNH Patient Registry provide guidance and connect you with others who’ve fought similar battles.

What keeps me going is remembering why I fight. Each approval letter means more time to focus on life outside the hospital — cheering at games, helping with homework, and enjoying a Saturday morning without worry.

PNH itself is unpredictable, but navigating insurance shouldn’t have to be. Until the system becomes more compassionate to rare disease patients, I’ll keep advocating for myself and for others who don’t have the energy to fight. Because staying healthy with PNH isn’t just about medicine; it’s also about making sure the gatekeepers let us access the care we deserve.

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

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