Saturday, June 15, 2024

Hydroxychloroquine is already a life-saving medicine

by Sarah Capdeville
| April 26, 2020 1:00 AM

This morning, I woke up short of breath, my body fatigued with a hot ache. In the time of coronavirus, these symptoms raise alarm, but as a Montanan living with chronic illness, waking up feeling sick is a reality I face most days. I have lupus, an autoimmune disease where my immune system mistakenly attacks my own connective tissue, triggering inflammation from the smallest vessels in my digits to swelling in my airway to oppressive fatigue. For people with lupus, there is no cure; we will live with this disease for the rest of our lives.

Unchecked, lupus can progress from systemic inflammation to acute flare-ups in the kidneys, brain, lungs, and heart, and this damage can be irreversible. So far, I have no organ involvement, much in part to taking hydroxychloroquine (HCQ), a drug widely prescribed to Americans with lupus, rheumatoid arthritis (RA), and other autoimmune diseases. Right now, though, most people recognize the name hydroxychloroquine as a potential treatment against the coronavirus. The president and recent anecdotal columns have continually pushed this drug despite inconclusive studies and dangerous side effects for some patients.

Claims of the effectiveness of HCQ against the coronavirus, whether fact-based or not, have caused shortages both state- and nationwide. The Strategic National Stockpile has amassed 29 million doses of the drug, while at the same time people with lupus and RA are unable to fill their vital prescriptions. In mid-March, my Missoula pharmacy started seeing scripts written incorrectly by doctors for otherwise healthy people, falsely informed that HCQ could prevent a coronavirus infection. Like with toilet paper, hoarding HCQ has left pharmacy shelves sparse. Last week, my rheumatology office recommended lupus and RA patients consider halving our doses to make them last. For how long, they didn’t say.

I’m not here to argue the ethics or politics of prescribing HCQ to coronavirus patients; I want all options on the table for saving lives. But when it comes to the public discussion of HCQ, the lives of millions of Americans with chronic illnesses don’t seem to matter. I’ve contacted and sat in on town halls with Senator Daines, Senator Tester, Representative Gianforte, and Governor Bullock; not one has responded to my question of HCQ availability. Press brief after press brief, news article after news article, the fact that HCQ is already a life-saving medication for those of us with autoimmune diseases is shoved aside.

Taking HCQ doesn’t make me immune to the coronavirus. I’ve spent eight months building a low dose up in my system, training my immune system not to attack itself. Even in the best of circumstances, which so many facing chronic illnesses don’t have, I’m still in a precarious and terrifying position. If I’m forced to stop taking HCQ, my lupus could progress into a dangerous flare, damaging my vital organs. I could take an immunosuppressant to mitigate this harm, but doing so could be deadly in the face of a coronavirus infection.

As Montana and the US move forward in this crisis, I’m urging elected officials and neighbors alike to fight for HCQ availability for lupus and RA patients like myself. We’re already at higher risk; the “why not” mentality surrounding HCQ and coronavirus is a stark, painful devaluation of our lives. In the long months ahead, if I make it through, I will still wake up chronically ill. Realistically, this is the best I can hope for — a shortness of breath that has nothing to do with a pandemic, an achy fatigue I can keep under control with a medicine I’m still able to access.

—Sarah Capdeville is a writer living in Missoula.