We all have that relative who brings his craziest internet conspiracy theories to Easter supper to rile up grandma and set mom’s teeth on edge, or the co-worker who swears that some half-baked internet theory is the gospel truth, facts be damned. You can laugh that off, because it isn’t going to kill you to let that ignorance stand.
It’s different when that person is the President of the United States, going off half-cocked on national television from the White House podium in the middle of a worldwide pandemic about a drug that is vital to keeping you healthy, and whose personal theories are endangering your access to it.
Lupus entered my life like a runaway truck 15 years ago. Initially, I thought I was just fatigued from a new baby and a move to a new house, and that rest would help my hands stop being painful claws and my joint pain to subside. That was until the night when my husband had to literally push me from behind to climb our stairs just to crawl into bed, tears leaking out of my eyes, as every joint in my body screamed for relief.
It took over a year of testing to find out that it was lupus, an autoimmune disorder. It is a difficult disease; the initial cause is still murky, and it cruelly pushes your own immune system to attack joint tissue, and sometimes even your eyes or other vital organ systems — not something to take lightly. We tried medication after medication, and they all made things worse. Then my doctor suggested a riskier treatment, hydroxychloroquine, the only medicine that has kept this disease at a simmer instead of a painful boil.
I’m one of the lucky patients who respond well to hydroxychloroquine, and I have not experienced any of the significant side effects so far—side effects you’d never know about from the president’s touting of the drug.
My doctor monitors me carefully, every few months. When every refill comes along with multiple printed pages of warnings about how it “may cause irreversible blindness” or “potential heart tissue damage that could cause permanent arrhythmia or death,” you tend to pay attention to the symptoms your doctor told you to monitor. If this medication was not so highly recommended and monitored by my own physician, there is no way that I would take it at random, not with those side effects.
As Donald Trump has talked up the medication that keeps my own immune system from attacking my joints and organs, outside of the usual FDA protocols and with no plan to protect patients who were already taking it, I have been forced to cut my daily dosage in half to stretch out the remainder of my last prescription refill while praying for increased production to catch up with presidential hype.
Halving my medication dosage allows me to keep some level of it in my system, but it is not without consequences, including severe joint pain. But a lack of the drug altogether could lead to more significant, long-term issues like permanent joint or organ damage. The Food and Drug Administration, as well as my own state’s Board of Pharmacy, have issued new guidelines and warnings about drug shortages and prescriptions in the wake of the president’s pushing of hydroxychloroquine. In order to get my prescription refilled, I will now have to jump through a number of additional hoops just to get my medication, if they can even find enough to fill my prescription at all.
The Lupus Foundation of America says that there is no proof that hydroxychloroquine is helpful for COVID-19. Epidemiologists, including Dr. Anthony Fauci, have said that data on hydroxychloroquine is insufficient to say it is effective against the virus. Under normal circumstances, a drug is tested through scientifically controlled studies before ever being prescribed off-label. The Trump administration has short-circuited that process entirely.
While a worldwide pandemic is not normal circumstances, and we all hope that some miracle cure will emerge for this virus, there are simply are no scientifically valid studies that show it to be effective. Promoting hydroxychloroquine as a miracle cure before you even know if it helps is cruel at a time when Americans are desperate for hope. Worse, it could be dangerous.
Recently one of the studies from France that the president has repeatedly touted was called into question. Hospitals in Sweden have stopped doing trials for COVID-19 cases because of severe adverse issues. The president has an entire government full of doctors and pharmaceutical experts at his disposal who can fill him in on every nuance, but instead he appears to be listening to innuendo and rumor from television personalities and political cronies.
While Trump does throw in a bit about asking your doctor, you’d never know listening as he touts hydroxychloroquine that it can have severely adverse consequences when taken with very common drugs, including metformin and Z-pack antibiotics. That’s information the public should know to make an informed choice. That is information the president should know well before he promotes something from the White House podium, without any mention of those facts.
The president has said, “what do you have to lose?” The truth is that a shortage of hydroxychloroquine could literally cost me my life.
Christy Hardin Smith lives in small-town West Virginia with her family and her new vegetable garden, planted recently thanks to the quarantine. She has lived with lupus for 15 years and is a three-time cancer survivor, so this issue matters a great deal to her and her family. She would prefer it if governmental policy on health issues were made by consulting experts in the medical and scientific field instead of “gut feelings,” so that all Americans’ needs are considered equitably.