I Have Rheumatoid Arthritis. What Happens When I Run Out of Hydroxychloroquine?

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My COVID-19 adventure began on March 13th around 3:30 in the afternoon. I was standing in a grocery store loading a weekend’s worth of groceries onto a conveyor belt. Then there was a “ding” from the pocket of a woman ahead of me.

As she whipped out her phone and began reading, more dings came one after the other, then in unison, from people all over this grocery store. Looking around, everyone had their faces glued to a device. Then came the “oh nos” and the “oh my gods” and the “what am I going to dos?” from an entire store full of parents who just found out March break will last at least three weeks because of the coronavirus.

People panicked. Hordes of parents rushed to checkout lines and paid for as much as they could carry. Just when I reached the front of the line, I realized I forgot to pick up toilet paper. I was desperate, down to the last few squares glued to the roll.

I darted for the toilet paper aisle only to find an empty shelf with one dented box of Kleenex left behind. I had never seen such a sight. I grabbed the box and got out of there as fast as I could.

It’s been weeks and I have yet to find any toilet paper. While this may be considered life or death to some people, substitutions can be made that get the job done. But this isn’t the case for every commodity people are panic-buying. Now there are drug shortages that are taking life-saving medication from chronically ill patients’ hands.

With the existence of a brand new virus plaguing humanity, our world is changing in unprecedented ways that will continue to unravel in the coming months. As our governments scramble to repair the economy and scientists work on an effective and readily available vaccine, the general population now finds themselves living their lives much like chronically ill patients do: on a day by day basis.

Every morning, I begin my day by washing down two pills with a glass of strawberry kefir. This has been my routine for almost two years, ever since I was diagnosed with rheumatoid arthritis (RA) when I was 28 years old. The pills are hydroxychloroquine, a malaria drug that has anti-inflammatory qualities. It is commonly used to treat RA and lupus, both progressive and often debilitating autoimmune diseases. You may have read about hydroxychloroquine in the news in the past weeks now that there is a global shortage of the drug.

Living with RA has forced me to make adjustments to my work and lifestyle that most people would resent. I was once a stressed-out workaholic who clocked long hours on film sets for months at a time because I liked the money and my body could handle it. Now, stress triggers my illness and I can only work or travel when I’m in remission.

My pills work in 24-hour cycles, so I’ve come to view my life in this way, too. There are no guarantees I’ll be physically able to do what I might want to tomorrow. It can be overwhelming at times, but this is the reality of life with RA.

I continue to grieve the loss of my previous life without chronic illness, but I’ve found contentment in my new daily routine. I do my best not to worry about a future with unpredictable bouts of immobility and uncontrollable physical changes. In moments when I fall prey to my own fears, my rheumatologist assures me that I will live a relatively normal and deformity-free life, but only if I take my medication every day. Medication that due to panic-buying has become unavailable.

Because of COVID-19, I’ve isolated myself in my home since March 13th and plan to continue for the foreseeable future. I thought this would keep me safe, but due to false information perpetuated by world leaders drunk on hubris, doctors around the world are writing an increasing number of prescriptions for hydroxychloroquine, resulting in a global drug shortage.

Their reasoning is based on small studies of COVID-19 that do not conclude hydroxychloroquine will “cure” the virus, but suggest it may mitigate it in ways researchers cannot speak to because further testing is needed. And yet, healthy people, including rightfully anxious healthcare providers, have decided that in the absence of answers to abate their fears of COVID-19, they will participate in panic-buying of yet another commodity, dangerously, a medication with no easy substitutions such as buying a box of Kleenex instead of toilet paper.

There is no denying this shortage will negatively impact patients all over the world who depend on this drug to function. My worries are now amplified by the fact that not only could I die from this new virus, but the biting question: what will happen when I run out of hydroxychloroquine? What will I do when my pharmacist tells me I can’t have another three-month supply of this drug I depend on?

Patients who rely on this medication should never be forced to answer this terrifying question. Yet, those who hoard the supply based on fear and conjecture make it impossible for us not to ponder the unthinkable possibility.

By creating a drug shortage, hoarders are directly responsible for the pain and suffering of countless lupus and RA patients, who through no fault of their own have a disease they must battle over the course of their lives with medication.

While many of us consider hydroxychloroquine a lifesaver, the consequence of being an unmedicated RA or lupus patient is case dependent and (usually) not death. However, patients can expect their symptoms to creep back into their lives: unrelenting pain and debilitating inflammation that fractures our bones, erodes our joints, and attacks our organs, resulting in permanent damage to our bodies and added pressure to our overburdened health care systems.

Those who created this global drug shortage may never contract COVID-19. Without this medication, RA and lupus sufferers are guaranteed to get sick. Some of us will flare up, become incapacitated. Inflammation will rob us of our energy and we will be too tired to do anything but stay in bed. Too stiff to pick up a grocery bag, or use a can opener, or play with our children.

Panic-buying is depriving those of us who need this medication of our quality of life. Everyone has the right to live in this world, even those of us who are ill or old. There are countless uplifting stories about people stepping up in heroic ways to help others during this crisis. Is it too much to ask that we practice self-control so the quality of life of chronically ill patients isn’t decimated during this pandemic?

Given my history with RA, my symptoms will kick in about five days after I stop taking hydroxychloroquine. All I can do is take life day by day, and hope the medication will be there when the time comes to refill my prescription.

Set Shuter

About Set Shuter

Set L. Shuter is a writer, filmmaker, and storyteller from Toronto. Her first solo show, Hysterical Woman! is based on her memoir and will be at Fundy Fringe and Halifax Fringe in the fall (if she’s out of COVID-19 quarantine by then). Since 2012, Set has worked on hundreds of movies, tv shows, and commercials as a digital technician and colourist in both Toronto and Halifax. She's a graduate of The Humber School for Writers and currently enrolled in The University of King's College MFA program in Creative Nonfiction. Her literary work has appeared in Creative NonFiction Magazine. When she isn’t on stage or working, you can find her watching a horror movie in the dark or writing her days away by the ocean in Nova Scotia.

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