Battling 2 enemies: MG and the broken US healthcare system
Constant fighting over coverage creates a needlessly heavy emotional toll
Living with a rare disease is difficult enough, but in the United States, patients fight not only their illness, but also the healthcare system that’s supposed to help them.
I was diagnosed with myasthenia gravis (MG) five years ago this month. Managing it requires specialized care, regular treatment, and access to breakthrough medications. But when insurers and healthcare companies act as gatekeepers, those of us with MG (and other illnesses) are left to navigate an expensive, impersonal, and often hostile system.
Every day with MG is unpredictable. One moment I can walk a mile, while the next I can barely lift my head. Flare-ups are a constant concern, and I face lingering anxiety about whether I’ll be strong enough to meet each day’s challenges. Managing symptoms is a full-time job.
For me and many other patients, hope came in the form of a complement inhibitor called Ultomiris (ravulizumab) that was approved in the U.S. in 2022.
Relief, if you can reach it
When I started on Ultomiris, the results were nothing short of miraculous. My energy improved, my symptoms lessened, and for the first time in years, I began to feel like myself again. I could participate in life, not just survive it. This drug gave me stability, which is rare in the MG world. But stability in this country is fragile when your lifeline depends on a healthcare system more focused on profit than people.
Despite how transformative Ultomiris is, my ability to access it is constantly under threat because of problems with health insurance. Getting the medication approved was a battle. Staying on it is a war.
Insurance companies demand prior authorizations, require endless documentation, and often delay or outright deny coverage. Constantly fighting with them carries an emotional toll. It’s dehumanizing to know that your well-being is being weighed against counterproductive regulations, policies, and procedures.
Over the past 10 days, I’ve spent almost 100 hours working to get my next infusion of Ultomiris. My health insurance group number changed, meaning I’m still with the same insurer but in a different group. This seemingly small change has required me to put forth incredible effort. Meanwhile, the date for my scheduled infusion has come and gone. And that’s dangerous.
For someone with MG, navigating this system is more than frustrating. The disease itself makes us weak and exhausted. The healthcare system adds layers of stress, paperwork, appeals, and costs that wear us down even further. There comes a point when many patients simply can’t fight anymore. It’s not that they don’t want to live; it’s that the system has crushed their spirit.
That’s when they stop appealing. They skip appointments. They go without treatment. And they die — not from myasthenia gravis alone, but from the barriers placed between them and the care they need.
I’ve come dangerously close to that edge because the healthcare system has repeatedly made me feel powerless. When a patient with a rare disease is told “no” enough times, they begin to internalize it. They begin to believe their life doesn’t matter as much. They might begin to believe that giving up is the only option left. That slow erasure of hope is the greatest tragedy of all.
In a just society, a patient who finds Ultomiris or another miracle drug would be celebrated and supported. Their treatment would be protected, not obstructed. But in the United States, rare disease patients are left to beg, fight, and sometimes break. Myasthenia gravis is a formidable opponent, but the U.S. healthcare system is often deadlier.
We must demand reform that prioritizes patients over profits, dismantles the red tape that strangles lives, and ensures that no one is denied care because of mindless regulations. Until then, too many of us will continue to battle two enemies — and only one of them is biological.
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.
About the Author
Harold Summers
I, too, am taking Ultomiris, and before that, Soliris. The main problem with these drugs is the amount that the Drug manufacturer charges, in my case, to my local hospital infusion centre. Ultomiris is administered every two months, that's six times per annum. With hospital charges included, each infusion is more than $428.000. Do the maths. No wonder, the insurance companies are loath to pay for our treatments. They say that insulin was expensive before the government forced the drug makers to drastically cut their pricing. Well, how about the government step in here, too? You can't tell me that the company couldn't charge less, and still make a profit, and their shareholders could receive a somewhat lower dividend? The failure of our medical system in this country is that Big Pharma is allowed to get away with these outrageous, overinflated prices.
Margaret A Lombard
I have had the same type of horrendous year, dealing with what you've written in your post. However, part of the blame rests squarely on the part of a medical staff that does not wish to change and provide the medical lab/med information requested by the insurance provider. The medical staff tell the patient an appeal has been submitted. I appreciate the insurance provider being transparent and letting me know the reason for the denial. This way, I can communicate with both parties and be an advocate for my health; no mystery, just facts.
Mark Harrington
I am sorry to hear of your troubles. But, I am not surprised. One matter, which I believe you alluded to is the staffing in our hospitals, doctors' offices, etc. I taught high school for 30 years. I know the applicant pool from which many of these non-degreed staff are pulled. Believe name, "it ain't pretty."
And I don't put all the blame on the staff. Our public schools no longer educate. They prepare, or attempt to prepare students fr state mandated exams. I always maintained that the job of our schools is to prepare young people to be adults who live the life of the mind.
A small, but nevertheless important piece of the puzzle.