Eden Robinson is the author of the bestselling novels Son of a Trickster, Trickster Drift, and Monkey Beach.
Well before it was touted by the President of the United States as a cheap, safe wonder drug that could cure people infected by COVID-19, I used hydroxychloroquine for eight months for my rheumatoid arthritis. That’s the kind of thing the drug is usually used for: treating malaria and chronic autoimmune disorders, such as RA and lupus.
These days, the FDA is granting limited emergency-use authorization to treat coronavirus cases, and the U.S. government has stockpiled 29 million hydroxychloroquine pills. U.S. medical providers are reportedly now hoarding the medicine, making it hard for existing users to access it. All this is happening even without clear scientific evidence that it works against the novel coronavirus at all.
But in his endorsement for hydroxychloroquine, Donald Trump has asked, hypothetically: “What do you have to lose?"
Here’s an answer for the president: Your vision. You could lose your vision.
I had five months of moderate success on hydroxychloroquine – my inflammation levels came down, and the pain levels became manageable – before the side effects set in. At month five, I started seeing floaters – little squiggly debris inside your eyeball that cruise across your vision. At month seven, I had eye pain. Constant, migraine-like eye pain. My inflammation levels started to climb again, and the pain started to keep me awake at night, especially since one of the rare side effects of hydroxychloroquine is retinal detachment. Out of an abundance of caution, I decided with my doctors to wean off for month eight.
I was lucky that my side effects gave me lots of warning. Some people don’t have any warning. This is not reversible. The damage is permanent. That’s why patients with rheumatoid arthritis and lupus regularly see an ophthalmologist while they take hydroxychloroquine. If you develop eye pain or begin to see a halo, if your vision changes, for the love of everything good and right, stop taking it.
This drug must not be given to children, or to seniors who are taking multiple drugs for multiple health conditions. This drug can cause heart arrhythmias and kidney failure; common side effects are paranoia, hallucinations and suicidal thoughts. Yes, it’s generally well-tolerated, but the U.S government is risking people’s health and sanity for an unproven, off-brand use of a drug that has some potentially life-altering side effects.
And the hoarding of hydroxychloroquine is making it hard for people like me to manage their rheumatoid arthritis and lupus. RA isn’t one single disease; it’s many diseases that produce a spectrum of symptoms and experiences. On one end is a sore knee or stiff hands in the morning; on the other end, there are people who can’t move – literally cannot move – without their drugs.
I’m one of those people. If I stopped taking my medication, the vertebrae in my spine would fuse and I would slowly, painfully, begin to freeze, completely alert but locked inside an immobile body.
Hydroxychloroquine didn’t work for me, but it does work for other people with RA. When they can’t get their drug, their symptoms return, or sometimes come back worse. Before I developed RA, I used to say that my gallbladder attacks were a 10, on a pain scale of 1 to 10; now, unmanaged RA pain is my new 10.
If you take this drug away from people with lupus, you risk killing them. If the symptoms they had been managing successfully suddenly return because they can’t get their drug – if their lupus attacks one of their organs – things get ugly fast. Someone with lupus is vulnerable already. But going into organ failure during a pandemic when your immune system is already compromised is like playing Russian roulette with a loaded gun.
Intentions don’t matter; consequences do. It’s risky to push hydroxychloroquine as an easy, safe way of protecting people from getting COVID-19. Making people who need this drug expendable sacrifices to ease the public’s panic is inhuman. Please consider your health and the health of other people before buying into this dangerous hype.
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