How US Health Insurance Practices Can Harm Rare Disease Patients

Battling insurance for lifesaving treatment highlights a sobering reality

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by Mark Harrington |

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The U.S. healthcare system is broken. There’s nothing earth-shattering in that statement. However, every day, people — our friends, neighbors, and family members — die as a result. Recent events in my life brought this home with painful clarity.

Prior to my myasthenia gravis (MG) diagnosis, I believed that when one became ill, a trip to the doctor was the solution. The doctor would then perform an examination, perhaps order some tests, come up with a diagnosis, and prescribe a treatment. The doctor’s knowledge would, I believed, be the driving force in this process.

Unfortunately, that isn’t always the case. Every decision, every prescription, and every test is reviewed by insurers. Profits, not patients’ health, often drive these reviews. According to an article published in 2009 in AARP: The Magazine, the U.S. Department of Labor estimates that about 200 million of the 1.4 billion health insurance claims submitted annually are denied.

Denials have consequences. A 2022 Pharmaceutical Research and Manufacturers of America press release about insurance practices notes:

“In the past year, 43% of people who take prescription medications have themselves or their families faced at least one insurance barrier to their care. These experiences range from waiting for an insurer to approve a medicine their doctor prescribed (prior authorization) to the insurer requiring a patient to try a different medicine (fail first), or not covering a doctor-prescribed medicine at all (formulary restriction). This is in the context of 89% who say taking their medicines helps them stay healthy.”

Let me bring this home.

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The Heavy Financial Burden of Living With a Rare Disease

A long, uphill battle

Taking high doses of prednisone to treat my MG led to avascular necrosis in both of my hips, necessitating total hip arthroplasty. For most people, this is a routine procedure. However, patients with MG have unique surgical and rehabilitative difficulties.

I was excited to learn that, as part of my postoperative routine, my neurologist had prescribed the MG treatment Vyvgart (efgartigimod). I’d heard positive things about it, and my doctor thought it could be a game changer for me.

Seven months passed between the initial prescription and my first infusion. In the interim, I was hospitalized three times. When I wasn’t in the hospital, I spent hours at my desk every day trying to figure out how I could receive Vyvgart.

I spoke with members of the manufacturer’s staff, who were wonderful, as well as insurance representatives in Dallas, Boston, and Los Angeles. I felt like Alice in Wonderland — things grew more confusing every day. My neurologist and her team also worked on obtaining approval. Like me, they had no success.

Finally, an insurance representative informed me that they’d approved the drug for me, but not the nurse or supplies to administer the hourlong infusion. I asked what I could do with the $150,000 worth of Vyvgart they were sending me. My only option seemed to be hiring a private nurse to administer it, which would cost me $9,000.

By this point, my health was deteriorating due to MG. Unable to speak, swallow, or eat, my sister had to do conference calls with me so I could be understood over the phone. I grew resigned to failure. Six days before Christmas, I packed a bag and prepared to head to the emergency room.

Call it a Christmas miracle, but before I could dial 911, my neurologist called to tell me she’d obtained approval for the delivery and infusion of Vyvgart. A round of intravenous immunoglobulin therapy could arrest my deteriorating condition and stabilize me until the Vyvgart infusions began. All I needed to do was pay my $4,000 insurance deductible.

I guess miracles come with a cost.

Something’s wrong here

We could discuss the 45,000 Americans who die each year because they lack health insurance. (For context, 58,220 members of the U.S. military died as a result of the Vietnam War.) We could consider that the United States ranks 22nd out of 27 high-income nations in healthcare efficiency. Maybe we should discuss the alarming fact that “the barriers that insurers create for medical practices has caused almost half of primary care physicians (48 percent) to consider getting out of medicine, and 67 percent said they would not recommend a career in medicine to aspiring medical professionals,” as noted in a 2018 survey conducted by Aimed Alliance.

Perhaps we should consider that here in Texas, where the average teacher’s salary is $58,887, teachers like me are required to pay hundreds or even thousands of dollars a month for health insurance. These figures don’t include deductibles and maximum out-of-pocket costs, which can add thousands of dollars to annual health insurance costs.

How does this affect someone who can’t speak, swallow, eat, walk, or leave the hospital? I live with the consequences created by these issues.

All of us in the rare disease community are heavily impacted by insurance decisions. We can, and must, play a role in addressing these problems. Our quality of life hangs in the balance. And more often than is necessary, our lives are on the line.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.


Antonio Nero avatar

Antonio Nero

USA have to change their law on health insurance. They must become free as in Europe.

As far as I know, USA citizens are against free health care because they fear socialism and communism. There's nothing left wing or far left wing in public health care, because health is a human right, not a left policy invention.


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