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President Trump’s revelation this week that he’s taking hydroxychloroquine to ward off Covid-19 sent shivers down my spine and the spines of many others living with lupus because we actually need this problematic medication. His hype will almost certainly make the drug more difficult to get.

“I’m taking it,” Trump said. “Hydroxychloroquine. Right now. A couple of weeks ago I started taking it. Because I think it’s good; I’ve heard a lot of good stories.”

When I first heard the announcement, my initial concern was for the people who will rush to take a medication that I have avoided taking for as long as possible because of the numerous side effects it can cause.

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My concern turned to disbelief that the leader of our country would willfully ignore multiple studies showing that people with Covid-19 experience no benefit from taking the medication, and it may do more harm than good.

Finally, it occurred to me that my three-month supply is nearing its end and I may have to either scramble to get my next supply, pay more for it, or consider taking medications that will further compromise my immune system — during a pandemic — and may also damage my kidneys and liver.

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Yikes!

Hydroxychloroquine is not a miracle cure

Clinicians and researchers on the frontlines of Covid-19 were quietly exploring the usefulness of hydroxychloroquine, a drug initially used to treat malaria, as a treatment when President Trump thrust it into the national spotlight on it on March 19 with an overly rosy narrative. Yet the data behind its use for Covid-19 aren’t promising.

Researchers at the University of Albany recently reported that among 1,438 Covid-19 patients in New York state, those given hydroxychloroquine were just as likely to die from this viral infection as those not taking it. The findings were similar for people given both hydroxychloroquine and azithromycin, an antibiotic.

This lack of benefit, however, came with risks: Those on hydroxychloroquine were more than twice as likely to die from heart attacks during the study period as those not given the drug.

An evaluation of Covid-19 patients in U.S. Veterans Health Administration hospitals also found the drug to be ineffective and possibly linked to a higher death rate (although one could argue that the patients on the medication were likely immunocompromised to begin with). Questions about the effectiveness and risk profile of hydroxychloroquine were also raised in a review by researchers at Massachusetts General Hospital published earlier this month.

Still need more convincing that hydroxychloroquine isn’t the big cure for Covid-19 and may do more harm than good? Both the Food and Drug Administration and the National Institutes of Health have issued statements warning clinicians not to prescribe hydroxychloroquine for Covid-19 because of potentially fatal side effects.

Lupus and the medication cost-benefit analysis

Systemic lupus erythematosus is an autoimmune condition. My immune cells misread normal, healthy cells and attack them as if they were foreign. More than 5 million people worldwide live with lupus.

In the days before social distancing, if you met me on the street you wouldn’t know something is wrong with me. Yet I’ve woken up unable to get out of bed without help, experienced prolonged bouts of lung inflammation, suffered from gastrointestinal symptoms, and have dropped a large amount of weight and hair during particularly bad lupus flares — periods when symptoms worsen.

It started 13 years ago when I was 27.

In people with autoimmune diseases, hydroxychloroquine can reduce inflammatory responses by interrupting cell signaling between and within white blood cells. It has been shown to decrease the number of flares people experience.

Each time my rheumatologist and I discuss medications, we’re essentially having a risk-benefit conversation. We weigh whether a medication will cause more damage than letting my lupus rage on.

I put off starting hydroxychloroquine, even though it’s one of the safest drugs approved for autoimmune patients, because of the potential loss of color perception. This happens because the drug can build up in the macula and other parts of the eye, eventually causing blindness. Other side effects include depression, anxiety, skin rash, headache, dizziness, nausea, involuntary muscle twitches, and potentially fatal heart issues.

The fact hydroxychloroquine is considered the safest lupus treatment should tell you something about my other options.

During my last visit with my rheumatologist, we decided to cut my daily dose of hydroxychloroquine by 25% due to findings that the medication can cause dangerous irregularities in the heart rhythm or an unsafe increase in heart rate at the previously recommended dosages — which is one-fourth the recommended “corona” doses I’ve seen online.

How did the rumor start?

We will probably never know exactly how hydroxychloroquine came to Trump’s attention. But given his publicly preferred media sources and the timing of his first promotion of it, he likely picked up the tip while watching “Tucker Carlson Tonight” on Fox News. On the show, a lawyer who falsely claimed to be affiliated with Stanford University, said that a yet-to-be-published study in France found a “100% cure rate” with hydroxychloroquine.

Let’s ignore for a moment that neither the lawyer nor the study were actually affiliated with Stanford.

One day after the study cited in Carlson’s interview was published in the International Journal of Antimicrobial Agents, the International Society of Antimicrobial Chemotherapy (ISAC) issued an official statement casting doubt on its findings. “The ISAC Board believes the article does not meet the Society’s expected standard, especially relating to the lack of better explanations of the inclusion criteria and the triage of patients to ensure patient safety.”

Will they listen?

With growing evidence that hydroxychloroquine does little for people afflicted with Covid-19 and comes with a whole set of possible harms, why would anyone use it?

The president’s off-the-cuff opinions are very influential.

After the initial buzz, Utah jumped the gun and prepared to make the medication available without prescriptions. It later course-corrected after an outcry from health officials. Following a spike in prescriptions and medication shortages, the American Medical Association issued a statement urging physicians to stop inappropriately prescribing hydroxychloroquine.

The calming voices from medical professionals made me hopeful that I may not be out of luck when my 90-day supply runs out in a few weeks. But after Trump’s latest statement, I’m not as optimistic.

If people will ingest bleach and other disinfectants after the president brainstorms ill-advised remedies on-air, hydroxychloroquine is going to be hard to find for the foreseeable future.

Surviving a pandemic with lupus

I work hard to be safe and not get infected by SARS-CoV-2, the virus that causes Covid-19. If I do, I likely won’t be one of the many asymptomatic carriers or develop a mild case with flu-like symptoms. With my weakened immune system and susceptibility to pneumonia, I worry I will be one of those on a ventilator.

My husband practices the same things the CDC recommends for high-risk individuals — even though he’s healthy — to minimize my potential exposure to the virus.

We get up at 5 a.m. to walk several miles without worrying about coming into contact with people who choose to ignore social distancing guidelines or not wear masks. People roll their eyes when I scramble to keep a distance when they crowd me on a path. We spend a premium but we’re lucky we can still afford to have groceries delivered. We eat a healthy diet in the hopes I can avoid the doctor for as long as practical.

At-risk people like me are warned to stay home while the rest of the population gets back to normal. I can accept that my freedom is being limited because people don’t understand the impact of their decisions. Yet I’m horrified that our president perpetuates the spread of misinformation — and is often the cause of it — as he willfully ignores advice from experts.

We deserve better.

While I fear for my own health, I also worry that people will die unnecessarily because our president doesn’t have the sense to recognize or care about science or the destruction he leaves in his wake.

Camela Thompson is a freelance writer based in the Seattle area.

  • Well, look at the pot calling the kettle black! I think the “Dr.” is making broad assumptions here concerning “lack of skills is an attribute for a weak mind;” “several” studies do not make a strong case for safety in light of an overwhelming evidence to the contrary. For someone who throws around the term “nitwit” freely, perhaps one might turn off Fox News and take look in the mirror before taking pot shots at someone who has legitimate concerns about her health!

  • I believe Trump is a fool and a con man.
    Anything he does is solely for his personal benefit. Including touting the use of Hydroxychloroquine. Since he initially promoted it he can’t stand not being right and is probably lying his taking it too. I hope for his sake he is lying about that as it could adversely affect him.

    • Don’t you know that are many studies in US and France for example, on the use of Hydroxychlorioquine as prophylactic use, as for Paludism?
      If a dumb says a truth, it’s the truth anyway.

  • The first indications that hydroxychloroquine could cure COVID 19 came from the Belgian university of Leuven in February 2020 . Since then doctors in Europe used it with good results. The trick is apparently not to use it as a prophylactic, but at first onset of the illness in combination with zinc and vitamin D. The function of the zinc is to bind the RNA strands of the virus, deactivating it.
    The medicine doesn’t work when the patient already has full blown COVID19.
    Doctors are no longer allowed to prescribe it because of the hysteria after Trump’s recommendation. Now they stand again empty handed.
    Btw Trump is using it as a prophylactic which is unsustainable in the long run.
    Hydroxychloroquine is easy and cheap to produce even though production capacity is not there yet because of all the discussions.

  • As allways , you ignore that taking Hydroxychloroquine at 200 mg once a day is completly safe, aske Rheumatologists and Dermatologists, how many ECG they ask for their patient before prescribing them 400 or 600 mg a day, for months or for years , people that have this treatment must have an Ohptalmologic exam once a year to prevent side effect that the most of the time begin after 5 years of treatment.
    Please, ask physicians and stop this Hydroxychloroquine Bashing.

  • This is an excellent article. Thank you for taking time to write it and do the research. I also have an autoimmune disease, which is being treated fairly aggressively as we speak. So I understand some of what you describe regarding your anxiety about the medications and also fears that they might now be available. I wish you health and peace of mind. And someday, this awful pandemic will be over.

  • This is a most unfortunate story,and I’m sure there are many many more. Mr. Trump puts us all at risk every day that he has the power. I don’t sleep at night knowing what he is capable of doing that will be harmful. He probably lied about taking the drug, and that is almost as bad.

  • The studies mentioned in this letter using hydroxychloroquine (HCQ) are in serious, later stage, hospitalised Covid19 patients

    No known oral antiviral for outpatients works unless given early in disease eg oseltamivir/Tamiflu influenza; valacyclovir/Valtrex in herpes

    Even remdesivir – a potent IV antiviral – didn’t achieve hoped for results in hospitalised patients

    Later stage Covid19 patients are mostly suffering from the effects of hyperinflammation ( cytokine storm) and the when viral titres are well beyond their peaks

    HCQ was also used without added zinc which could a design for failure, as one of the main but not only actions of HCQ is as a zinc ionophore orbit gets zinc to enter cells much more easily

    For early Covid19 the usually prescribed course is for 5 to 7 days which would not invoke the long term side effects mentioned in the letter

    In the many thousands of outpatient case reports now , when used in early disease, there have been few if any major side effects noted

    HCQ is a cheap, easily made generically available drug – main manufacturers, like Novartis and Teva have donated billions of doses worldwide since the event of Covid19, so shortages for those taking it for malaria ( preventions or treatment) or for autoimmune diseases, like lupus or rheumatoid arthritis etc are highly unlikely to suffer any shortages

    Here are some references for further study on the question of HCQ plus zinc plus either doxycycline ( my preferred choice because it isn’t associated with further cardiac risk) or azithromycin

    https://aapsonline.org/hcq-90-percent-chance/

    https://www.medrxiv.org/content/10.1101/2020.05.02.20080036v1

    https://www.preprints.org/manuscript/202005.0057/v1

    https://www.evms.edu/media/evms_public/departments/internal_medicine/Marik-Covid-Protocol-Summary.pdf?fbclid=IwAR1dRzQGq6_HyQYC4IMNrUFztw9LiI1pHJcz64hBfZ6ifB99gaCUqUVDzx4

    https://pjmedia.com/news-and-politics/stacey-lennox/2020/05/14/new-hydroxychloroquine-trial-could-be-destined-to-fail-n392407

    https://www.medrxiv.org/content/10.1101/2020.03.22.20040758v3

    https://www.medrxiv.org/content/10.1101/2020.04.27.20073379v1

  • I lost my mother to lupus and the side effects of its treatment; I still recall my shock that we couldn’t even donate her corneas to help a fellow being in need due to the years of steroid use. I spent years arguing with my mother over the aggressive treatment of her lupus with steroids — one that was proven ineffective around the time of my birth, but her doctor relied on to her death because “there was nothing else available.”

    Coronavirus and lupus have something in common — the majority of those who are afflicted and negatively affected are people of color. I find it ironic that the promise of chloroquine and hydroxychloroquine as a lupus treatment would not have been available to my mother; indeed, she could not return to visit her homeland as it required her to take anti-malarial medication which she could no longer tolerate since arriving in the US. These drugs are extremely harsh on people of African descent who suffer from kidney disease at greater rates, as I am always reminded that a special calculation is employed on my lab results to sneak me back into the “normal for y’all” range.

    Lupus patients — the majority being women — deserve better from their elected representatives. Coronavirus patients — the majority being Blacks and Hispanics — deserve to have verified science guide their treatment. Women and people of color (and women of color) shouldn’t have drug market share thrown into the noxious mixture of sexism and racism that still persists at the bedside and lab bench.

    I am still hoping that I don’t get either, but I don’t get a say in the matter really. But the thought that jingoism, venture capitalism, and poor public health planning does impact how I might be treated if I get wheeled into the ER without the ability to defend myself against questionable science is insupportable.

  • Your name calling and denigration even when praising indicates an inability to discuss with any evidence. Yous extensive use of ad hominem attacks, a logical fallacy, supports the observation. Notice I did not need to use such in critiquing you.

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