Navigating the rough waters of insurance changes with sarcoidosis

As I write this, my heart is racing. My head is pounding. I feel like my world is spinning so fast I can’t keep up. I’ve actually just gotten good news, but the anxiety that preceded it takes much longer to subside.

I generally subscribe to the “hope for the best, prepare for the worst” philosophy. With an incurable chronic illness like sarcoidosis, that’s a necessity. So many symptoms and side effects are beyond our control, but preparing for every possible outcome is one thing we can manage. Sometimes, though, no matter how much we prepare, it’s still not enough.

For nearly 25 years, I was enrolled in my husband’s employer-based health insurance. I’m grateful for his union-negotiated plan, which provided ample coverage for my substantial medical needs. But with his recent retirement, that all changed.

Because I’m on Social Security Disability Insurance (SSDI), the transition from his insurance to Medicare should have been smooth sailing. Unfortunately, I faced delays every step of the way, and though I started the process early, followed up with each office multiple times, submitted and resubmitted each document as needed, my health coverage ran out before Medicare came through.

Social Security staff tried to reassure me, noting that whenever it came through, Medicare would be retroactive to my desired start date. In the meantime, they said, if I had any medical appointments, I could just pay out of pocket and get reimbursed … eventually. As well-meaning as it was, that “just” underscored the lack of awareness of how expensive being sick can be.

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The cost of chronic illness

Without health insurance, I would have to pay (per month):

• $400 for medications, vitamins, and supplements
• $375 for blood work
• $1,000 for specialist appointments
• $2,550 for physical therapy
• $400 for psychotherapy
• $39,000 for infusions.

That’s $43,725. Per month. And that’s without any extra visits for illness, injury, or diagnostic procedures. Clearly, that is “just” not feasible for me (or most people). I started running the numbers again, trying to figure out what I could afford to cover and what my body could afford to do without. Ultimately, I was “just” up a creek without a paddle.

Without these necessary treatments, my condition cannot remain stable. My symptoms are sure to get worse — the only question is how much. But more questions arise: How long will I have to go without? Will my treatments have the same effect once I start again?

After I canceled numerous appointments, one part of Medicare was approved, and I felt a wave of relief. My mind was flooded with the thought that I had gotten all worked up for nothing. But as quickly as that wave washed over me, a rip current pulled me back into a sea of anxiety.

This situation isn’t resolved yet. That was one important step, but I still had to submit documentation to my husband’s former employer for additional post-retirement coverage, and I don’t know how long that will take to come through. Once it does, I’ll have to wait (and hope) for these treatments to be covered by the new insurance.

It’s clear that I didn’t get worked up for nothing. I’m still treading water, waiting for other people — who may not realize “just” how urgent and impactful their work is — to process the application. And this isn’t the only time my life has been in other people’s hands this way.

Emotional whiplash

Just a few months ago, my insurance company and the hospital system where I get my infusions were in bitter contract negotiations. I was informed that if they didn’t reach an agreement, I’d have to find a new doctor and hope she’d be willing to order the same treatment (and who knows how long that would have taken). Fortunately, they worked things out at the last minute, and I was spared.

Four years ago, and again two years ago, my insurance denied treatments that had been helping me for several years. There was no advance notice, no planning, and no reason. Everything was just canceled until my appeals were approved.

Ten years ago, my application for SSDI was denied. The appeal process took two years, but I was finally approved. Just two years later, I received a notice that my case was reviewed again and denied again. I submitted another appeal and was eventually approved, but that experience leaves me with a moment of panic every time I open my mailbox.

The Pollyanna in me wants to look at these examples and celebrate how they all worked out in the end. I’m grateful that they did, but that’s not all I feel. These sudden stops and starts, denials and approvals, crests and troughs leave me with emotional whiplash that’s harder to heal. But as the tides rise and fall so quickly, I’ve got to just keep swimming.

Note: Sarcoidosis 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.