Health insurance woes and more: Have multiple curses befallen me?

Early this month, I spent the seven most stressful and challenging days of my life. Stress of that sort — financial and physical — can severely affect my myasthenia gravis (MG) symptoms. This column is my call for comfort to those in the MG and other rare disease communities who face similar hardships.

Since January, I’ve been taking Ultomiris (ravulizumab), which is administered intravenously every eight weeks. Ultomiris is my miracle. It’s given me back my life, and I thank God every day that this drug is available.

Miracles, however, can come with a price. Each round of Ultomiris costs my insurer $76,605.60. MG and its treatments make health insurance one of the most important parts of my life, if not the most important.

Early on Sept. 3, the specialty pharmacy that handles my infusions called me. I expected a chat about the delivery of my Ultomiris. If only! The pharmacist instead said that when they attempted to verify my insurance, they were told I was no longer insured.

The news blew me away. I was certain it could be easily corrected. It could not.

Since then, my days have been consumed with piecing together what happened to my insurance. I’d been covered by COBRA since January, so I called the company where I sent my monthly payments. They told me that as of Sept. 1, they no longer had a contract with my former employer. Later that day, my insurance carrier let me know the same thing. If I hadn’t received a call from the pharmacy, who knows when I would’ve become aware of that?

After hours on the phone — six, on the day I drafted this column — as well as text messages, voicemails, and emails, I have no resolution. I don’t know where to turn.

I’m stressed.

More stress

As I struggled to resolve this matter, I worked on another financial surprise. This one, thankfully, was just resolved.

Typically, my disability payments post to my bank account the 11th of every month. July 11 came and went without a deposit. I waited a few days, then I contacted my disability carrier. They asked me to be patient as they looked into the matter. When July 26 came and I hadn’t received any communications from the carrier, I was at a loss. I called the insurer, which told me the check was mailed to the wrong address. And someone cashed it!

Feeling as if I were trapped in another universe, I didn’t know what to do. Finally, after 31 days and 36 phone calls, I received a FedEx mailer with my benefit check for July. You could’ve knocked me over with a feather. I’m glad to resolve the issue, which had added to my stress.

Working to resolve this matter was as frustrating as my health insurance woes. Once again, I couldn’t find a resolution and didn’t know where to turn. How did the check get to the wrong address after making it to the correct one for two years? Naturally, that added to my stress.

You might think that these two problems are enough for one person. Nope! Before leaving for vacation, we packed up everything, hired movers, and shifted everything to storage while we’re having our entire place renovated.

But a host of contractual and other issues caused this plan to go off the rails. Now we sit in an empty house and hope everything will be resolved within a week. Thank you, Lord, for giving me another whack upside the head. More stress.

Back in December 2021, I was hospitalized for a myasthenic crisis. Before I was discharged, several doctors spoke with me about the causes of these crises and how they can be avoided or mitigated. The discharge social worker gave me a copy of “Stress and Myasthenia Gravis,” published by the Myasthenia Gravis Association of Western Pennsylvania. This excellent brochure explains factors that exacerbate MG symptoms and how to eliminate or minimize them.

The message the doctors gave was in sync with that of the association’s brochure. Avoid stress!

If anyone knows how to do that while dealing with the lack of insurance, an empty house, and a temporary but scary problem with pay, please let me know. I’ve never been one who believed in curses. Now I’m not so sure.

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.