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
Dan Wood
Great column.
I was diagnosed with MG about 8 months ago.
Multiple visits to the Emergency Department and a couple of neurologists involved IVIG, plasmapheresis, Mestinon, CellCept, and now Vyvgart Hytrulo.
The Vyvgart Hytrulo has the most promise and we are dialing it in to get the most longevity from the infusions.
It took 105 days just to get an appointment with a specialist neurologist, then a long battle with insurance and a denial of Rystiggo before we could try Vyvgart. I've been battling with the insurance company for coverage of diagnostics, medicines, infusions, pre-authorizations for most of the last 250 days.
It is exhausting and demeaning. The mental and physical tolls are difficult.
My experience and insight from these battles makes it easier to help others with similar battles.
micheline okazaki
I understand your frustrations but part of the problem is the ridiculous price of the newer therapies, about half a million per year! I don't understand why no one negotiated a lower price with pharmaceutical companies, maybe not enough of us.
micheline okazaki
Is this a new post or an old one?
Jennie Morris
You’ve left out the most important obstacle to getting treatment- the pharmaceutical companies that charge outrageous amounts for a single treatment. I’m on Vyvgart with a schedule of 4 week on, 4 weeks off. Each treatment is billed at $117,000 so a month of treatments is almost half a million dollars. Luckily, between Medicare and PPO discounts, the final amount is $20,000. The true tragedy is that the same medication in other countries is much less expensive. While the insurance companies do everything to avoid approving our necessary treatments, let’s put a significant amount of the blame on the rising cost of our treatments.
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.
Mark Cox
Mark, you are spot on with the common insurance and medical providers lack of understanding to a point of dysfunctional and and unethical in supporting a rare disease as MG and the stress and financial ripples they can compound into our already challenging lives dealing with MG… I was diagnosed 4 years ago with full blown gMG and was experiencing all the Myasthenia symptoms when I’m without medical infusions to support my condition… I’ve been on 3 different infusions medications trying to get approved for the fourth… As of today we have been fighting my well known major insurance company for near 40 days as the last infusions didn’t work well for me with too many side effects and I’m nearing 74 days since my last visit infusion or 14 days past due while my respiratory, double vision and swallowing symptoms start setting back in… I’m 65 and still working with travel being a big part of my job but sitting here unable to travel in my current situation jeopardizing my job and health while my provider battles it out with my insurance company… I have called my insurance multiple times as well filing complaints and threatening to take legal action with no avail at this juncture in the fight.
I’m trying to get on Vyvgart Hytrulo which will be much lest cost to me and my insurance than the ULTOMIRIS that I’m currently on, less hospital and nursing cost because it is self injected by me the patient in which will make me more nimble to perform my responsibilities in my job versus scheduling my work around my infusion cycles…
We go through this battle every time I change. Common excuses for denial are…..
• Your dr. Missed the denial response deadline by 12 hours, they must re submit.
•Not enough information
This is a new drug for the patient, insurance wants new proof the patient has MG and Blood test etc. to support.
• We need to know the full dose, your Dr submitted only 4 doses for a trial period and will adjust to higher or low dosages based on patient responses … insurance states…, Not acceptable, they need to know how many exact doses will the patient need this year and what dosages..
They told me that if my neurologist would call them in a peer to peer call, they could resolve this over the phone. He’s called them twice, first time they wouldn’t accept his verbal answers and they got nasty and so did my doctor in return, so he sent it in writing next day. Turns out the original denial response was due the night of the peer call so when he faxed it next day it was denied as insurance stated he’d have to resubmit a new claim…? Doctor thinks they did that due to the tone and nasty peer call conversations… We are Still fighting for meds. Second call went better last week, still waiting on insurance decision???
These are just a couple of many denials and delay excuses that I have experienced in the last four years… My current doctor told me that my insurance must hate me because he can get a Medicare person infusion medication much easier than my insurance… I passed this on to my insurance…
One thing that I have learned in all of this is that your medical providers nursing and administration staff along with their competence and willingness to stay in the fight for your medications are extremely important to your success of getting through the insurance companies and approved … Buy them flowers, buy them candy or whatever it takes to recruit them on your side… They are extremely busy with multiple patients and medical clams on a daily basis… They can be your Achilles foot if they are not on your side fighting along the side of your doctor in your behalf… In short be extremely nice and grateful to these folks…
Best of luck, wish I had better information or avenues to suggest but I’m afraid we’re dealing with a broken system. Don’t let the system win, stay in the fight at all cost. At the end of the day, it’s our lives that we are fighting for..!