The Effect of the Worker Shortage on My Rare Disease Care

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by Claire Richmond |

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My neighborhood pharmacy was randomly closed last Friday. Given the amount of medications I use to manage symptoms of acute hepatic porphyria (AHP), I’m well versed on the hours that it is open. Imagine my surprise when I arrived at the drive-thru during normal operating hours, and found it shuttered with a note taped to the glass.

“Due to a shortage of pharmacy techs, we will be closed today.”

There’s a worker shortage — a reshaping of the economy — as the world enters month 18 of the COVID-19 pandemic. It’s a labor issue that disproportionately affects vulnerable populations, uniquely, those with chronic illness.

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Earlier that day, I received a text notification indicating the prescription I take to treat my hypersomnia was ready. It is my most specialized pill, and the hardest to obtain. I often wait days for a refill, and when I receive the medication, it’s in increments starting with five pills. Each month, it feels like the pharmacist is handing me a plastic canister of precious gemstones. I had taken the fifth and final dose in my partial fill that morning.

I called the pharmacy across town and begged for a transfer. The tech was aware of the other location’s staffing shortage, but said he couldn’t transfer my prescription without my doctor’s approval. I called my clinic and learned that the doctor had left  for the day only a few minutes ago, but the friendly after-hours nurse wasn’t able to help, either. Without my hypersomnia medication, I mentally prepared myself for a very different weekend.

A “drug holiday” sounds nice in theory, but the thing about hypersomnia is that no matter how much I sleep, I won’t feel refreshed, recharged, or energized. That weekend, I ended up sitting on my front porch sleep drunk, watching yellow ash leaves swirl in the autumn breeze. On my couch and under a blanket, I recalled other times this year the worker shortage affected my rare disease care.

I’m fortunate to live near several pharmacy locations and have access to reliable transportation. Plus, I can easily communicate with my team and have good insurance coverage. Even with these advantages in managing my rare disease care, I have been impacted by the worker shortage.

There was that Friday night in April when I went to the emergency room to prevent a severe acute attack from getting worse, and despite being one of only three patients in the waiting area, I went home after eight hours without having been seen.

Then there was that time in August when I was told there was no room in the hospital, so I toughed out my nausea and symptoms of gastroparesis, which prevent me from being able to eat or drink. It wasn’t just the number of beds, it was also the number of nurses.

This autumn, a two-week dermatology followup took two months to schedule. As I write this, my annual neurology appointment has been canceled and rescheduled four times since July.

It’s other places, too. A friend with AHP in Arizona has told me that she has had long wait times at her monthly appointments. Another in California said it took her days to get in to her outpatient clinic for fluids.

Labor market challenges are nothing new, particularly where I live in Iowa. Long before the pandemic, workers made choices about their training, jobs, families, and living situations, all in an attempt to get ahead without sacrificing their souls. Now, the big news story is the worker shortage.

But noticeably missing from this conversation are the voices of the chronically ill and disabled who face unique and potentially life-threatening consequences when we are unable to access timely care. As the effects of the labor shortage continue to spread, the impact will be felt in healthcare in ways I can only imagine.

We, the people with chronic illness and disability, are uniquely affected. And we have an opportunity to speak our truth.

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Note: Porphyria 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 Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

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