Trump’s advice to use the antiviral drug to prevent COVID-19 was baseless and dangerous — and is putting the lives of people with chronic conditions at risk.
In late February, in preparation for the pandemic that was forecasted to descend upon my community just outside Manhattan, I stocked up on food, household necessities, and medications essential to sustain my large family during a quarantine.
I knew caring for a family of seven — in addition to an elderly mother who lives with us — would prove challenging during an outbreak.
I have an aggressive and debilitating form of rheumatoid arthritis and my five children have various autoimmune diseases with other complex medical issues. This made planning for an impending pandemic crucial.
At this same time, my rheumatologist suggested that until my husband stopped commuting into New York City for work, my children and I refrain from taking the immune suppressing biologic drugs we’d been taking to suppress disease activity.
Our physician was concerned that my husband would be exposed to COVID-19 while at work or while commuting on a crowded train, which would pose a deadly risk to my immunocompromised family and medically fragile mother.
Discontinuing our biologics would come with risks — the most likely being a debilitating flare with rampant, unfettered inflammation caused by disease.
Although hydroxychloroquine isn’t as effective a treatment for my illness as the biologics are, it doesn’t pose the same immunosuppressive risks.
However, when I attempted to fill the prescription, I was informed by a frustrated pharmacist that they weren’t able to secure the medication from their suppliers due to a shortage.
I called every single pharmacy in our area and was met with the same story each time.
In the weeks spent waiting for hydroxychloroquine to become available, I experienced the worst flare in my 6 years of being diagnosed with rheumatoid arthritis.
Dressing, cooking, walking up and down stairs, cleaning, and caring for my children and mother became insurmountable tasks.
Fevers, headaches, sleeplessness, and unrelenting pain consumed me. My joints became extremely tender and swollen, and I couldn’t move my fingers or toes as they became swollen and locked in place.
Simply getting out of bed each morning and into the bathroom for a shower — which helps to improve stiffness, a hallmark of RA and often when pain is its worst — took triple the amount of time it normally would.
The jarring discomfort would leave me breathless.
Shortly after my realization that there was a shortage of the medication, news reports surfaced of doctors in other countries trialing hydroxychloroquine along with azithromycin with unclear results.
The medical community agreed that clinical trials were necessary to prove the efficacy of these meds, but President Donald Trump drew his own baseless conclusions.
On Twitter, he touted hydroxychloroquine as being “one of the biggest game changers in the history of medicine.”
Trump claimed that lupus patients, who are often treated with hydroxychloroquine, seem less likely to get COVID-19, and that “there’s a rumor out there” and “there’s a study out” to confirm his “theory.”
These false claims led to immediate, dangerous actions.
Physicians overprescribed hydroxychloroquine for themselves and patients who wanted to take it prophylactically — or who simply wanted the drug in their medicine cabinet just in case they were to develop COVID-19.
A man in Arizona died after ingesting chloroquine phosphate — which is meant to clean aquariums — in an effort to protect himself from the novel coronavirus.
Rather than protecting us, it was clear that the advice of our nation’s top leader was instead causing harm and dangerously erroneous beliefs.
Not only was Trump’s advice baseless and dangerous, but it was putting the lives of people with chronic conditions at risk.
In an article in the Annals of Internal Medicine, the COVID-19 Global Rheumatology Alliance, a consortium of rheumatologists, warned against rushing to conclusions about the drug. They warned that shortages could be detrimental for people living with rheumatoid arthritis and lupus.
“Hydroxychloroquine (HCQ) shortages could place these patients at risk for severe and even life threatening flares; some may require hospitalization when hospitals are already at capacity,” the Alliance writes. “Until reliable evidence is generated and adequate supply chains have been put in place, rational use of HCQ in patients with COVID-19 must be emphasized, such as use in investigational studies.”
In April, the U.S. Food and Drug Administration (FDA)
On March 28, 2020 the FDA gave an Emergency Use Authorization (EUA) for hydroxychloroquine and chloroquine for the treatment of COVID-19, but they retracted this authorization on June 15, 2020. Based on a review of the latest research, the FDA determined that these drugs are not likely to be an effective treatment for COVID-19 and that the risks of using them for this purpose might outweigh any benefits.
The Centers for Disease Control and Prevention (CDC)
Many who rely on hydroxychloroquine hoped this guidance from the medical community would mean easier access to their life-saving medication.
But those hopes were quickly dashed when Trump persisted in speaking in favor of the medication for COVID-19 prevention, going so far as to say he was taking it daily himself.
And so, the shortage continues.
According to a survey by the Lupus Research Alliance, more than a third of people with lupus have had issues filling their prescription for hydroxychloroquine amid the COVID-19 pandemic.
Rheumatology patients like myself are living in fear of a continued deficit, particularly as some areas see an increase or resurgence of COVID-19 cases and we head toward a seemingly inevitable second wave.
I am extremely thankful and appreciative that the medical community is working tirelessly to find treatments for those who have developed COVID-19, and for the researchers who are desperately trialing vaccines that will hopefully stop the spread of this deadly disease.
Living in a hotspot with many cases in my community, I’m intimately aware of how devastating SARS-CoV-2, the virus that causes COVID-19, is.
We must rely on the expertise of the medical community when looking for reliable sources for treatment and hope.
Although Trump professes to have all the answers, taking any medical advice from him is detrimental to your health and well-being.
The toll that Trump’s irresponsible pontificating has taken on the most medically fragile members of our society is inexcusable.
Those who have suffered injury or lost their lives, along with patients without access to their medications, are proof.
Elaine MacKenzie is a disability and chronic illness advocate with over 30 years experience. She lives outside New York City with her children, husband, and their four dogs.