Illustration for article titled Thanks to Trump, Lupus Sufferers Are Now Struggling to Get a Crucial Drug
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The last time I checked, no one elected a medical doctor—or even a pharmacist—to the presidency in 2016 (or a rational human being, for that matter). But that hasn’t stopped many people from following Trump’s dubious medical advice in the wake of the coronavirus. As the world desperately seeks a method to contain or prevent transmission of COVID-19—you know, other than simply obeying social distancing and shelter-in-place orders—Trump has touted several medicines supposedly effective in treating the virus, none of which have yet been proven or should be administered as a possible treatment without the supervision of a doctor. (But I’m sure Trump has a “hunch,” so there’s that.)

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In the past week, one of those drugs, hydroxychloroquine, which was once commonly used as an anti-malarial, has sparked tragic outcomes for residents of both Arizona and Nigeria after the quack-in-chief suggested their efficacy in treating COVID-19. The claim immediately led to warnings from the medical community, but despite the fact that hydroxychloroquine has yet to be verified as a viable treatment for the coronavirus (clinical trials are underway), those who inexplicably find Trump’s medical advice trustworthy have now been stockpiling the drug in response.

“Why the fuck would you take medical advice from the unhealthiest man in the nation?!” asks The Root’s Social Media Editor Corey Townsend, only half in jest. That legitimate question aside, as it turns out, hydroxychloroquine is also the generic name of Plaquenil, a drug that has proved effective in managing the symptoms of lupus. Townsend is one of many lupus patients who take Plaquenil to help manage their symptoms; but as Trump has prompted a rush on the drug through his unsanctioned advice, those same patients are now finding it difficult to access what is widely considered a crucial treatment for a disease that already leaves its sufferers immunocompromised—and therefore already more vulnerable to COVID-19.

That’s the personal crisis being faced by Dr. Alexandra Moffett-Bateau, Assistant Professor of Political Science at John Jay College-CUNY. This week, Moffett-Bateau found herself unable to refill her standing prescription for Plaquenil due to the panic buying Trump’s claims induced.

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“Fuck, I can’t get a 90 day supply of my #lupus med (#plaquenil) because assholes are hoarding it,” she posted on Facebook in frustration on Monday, just a few days after Trump had begun boasting about the drug.

First diagnosed with lupus in 2010 “after ten years of being in and out of the hospital and not being able to get any answers,” Moffet-Bateau tells The Glow Up. Plaquenil was the first drug her initial rheumatologist prescribed to manage her symptoms. “And for the first three years that was enough to mostly keep it under control,” she adds.

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An incurable autoimmune disease that affects approximately 1.5 million Americans, lupus is notoriously difficult to diagnose—on average, it takes six years. While 90 percent of lupus sufferers are women aged 15 to 44, black women are three times more likely to be affected and often suffer more severely from the disease’s broad range of symptoms, which can include fatigue, hair loss, painful and swollen joints, disfiguring rashes, organ damage, strokes and even cardiovascular disease; all of which means that while the disease itself isn’t considered lethal, its symptoms easily can be.

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“Essentially lupus causes your immune system to think everything is threatening your body,” says Moffet-Bateau. “So, via your immune system, lupus can attack everything from your hair to your skin, your heart, your kidneys, or your joints. You name it and lupus can attack that.

“But because so many black women are not believed when dealing with doctors, it can take an especially long time to get diagnosed, find a medical team that will listen to you and believes you...and find a treatment plan that works and is bearable,” she continues. “So you can imagine that given all of this history, the idea of getting one of the primary drugs that work to keep my lupus under control taken away from me because of hoarding is especially terrifying...It is incredibly rare to find drugs that actually work to treat this disease.”

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To Moffett-Bateau’s point, the Lupus Foundation of America confirms that in 2011 the drug Benlysta was the first in more than 50 years to be approved for the treatment of lupus. Prior to that point, the primary hope for relief lay in hydroxychloroquine (Plaquenil), approved in 1956 to treat the symptoms of rheumatoid arthritis, skin inflammation, hair loss, mouth sores, fatigue, and joint pain associated with lupus. To this day, it is still considered to be perhaps the most effective drug “at preventing, or at least lessening the progression of the impact of lupus on the body,” says Moffett-Bateau.

But as lifesaving—or quality-of-life-saving—as hydroxychloroquine can be for lupus patients, it also has its own side effects, including nausea, vomiting, upset stomach, cramps, diarrhea, and even psychiatric effects. “Suffice it to say that a good chunk of people I know who are diagnosed with lupus are unable to continue the drug because the side effects are so unbearable,” Moffett-Bateau says, noting that a rarer but even more adverse complication is vision loss.

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“Plaquenil can erode your eyesight over time. The more you take it, the more at risk you are...I’m supposed to go see an ophthalmologist who specializes in autoimmune diseases every six months to make sure my eyesight isn’t deteriorating at a rate that is too rapid,” she says. But for her, the risk is well worth it as an immunocompromised person. “I’ve never had any side effects from taking Plaquenil. So for me, besides the long-term worry about my eyesight, taking Plaquenil is all upside.”

It’s also a vital component of the combination of therapies Moffett-Bateau has been prescribed to manage her symptoms over the past ten years since her diagnosis, which also includes an immunosuppressant and monthly chemo. “The combo of those three drugs literally keeps me alive,” she says. “Even when my doctor has had me hold off on taking the chemo and immunosuppressant to recover from surgery, for example, I always continue taking Plaquenil, no matter what. It is my first line of defense against this disease; because I have a history of heart involvement when my lupus flares up, this is critically important. Whenever I’ve missed doses of Plaquenil, within a week or so I could end up sick.”

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And with the broad understanding that immunocompromised individuals are especially at risk of contracting COVID-19, the fact that Plaquenil is now likely being hoarded by non-lupus sufferers is a twisted irony. Even while the drug is being tested as a possible measure against the coronavirus, experts don’t recommend it, as Vox reported Thursday.

Prescribing the drug now is “kind of a ‘last resort’ measure for those with severe disease,” Joshua Michaud, associate director for global health policy at the Kaiser Family Foundation, told Vox, later adding: “I would be more concerned about having large numbers people, including those without symptoms or only mild symptoms, taking this drug because of the risk of negative side effects and unclear benefits at this point.”

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So why—and how—are non-lupus patients even able to access it?

From what I’ve read, it mostly seems to be wealthy private docs hoarding meds for themselves and their families, but who knows if that is 100 percent accurate? I do know that we are all afraid of dying and perhaps it’s pushing folks outside of their character,” says Moffett-Bateau.

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“Maybe it’s because they believe Trump? Maybe they don’t understand how to read research studies? So, if they only read the abstract and don’t understand the very real limitations of that one small study, maybe they think they are doing the right thing for their patients?” she adds. “Maybe they are so scared of death and disability that they are willing to do whatever it takes to protect their able-bodied reality. Even if it kills others.”

The fact that the majority of lupus sufferers are black women isn’t lost on Moffett-Bateau, either. “There’s been so much rhetoric about older and disabled people being disposable. I can’t help but wonder if some of those same logics are at work when people hoard life-saving lupus meds,” she says. “The intersection of age, race and disability makes us a group that will be unprotected as decision-makers decide whose health needs to be protected when making public health decisions.”

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Obviously, lupus is a disease that not only affects black women, or even just women. Nick Cannon is among a demographic of black men also dealing with the symptoms, which can be debilitating, as The Root’s Townsend reminds us.

“Before you stockpile medication that is vital to the livelihood of others based on information that has not yet been validated, you should take the precautionary methods handed out by the WHO and CDC seriously,” he tells The Glow Up. “This drug has afforded many with lupus, like me, a chance at leading some sense of what we’d consider a normal life. When you hoard medication that is actually vital to someone’s livelihood, [someone] who actually has the disease that needs to be treated, your selfish act puts numerous lives at risk.”

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Moffett-Bateau echoes Townsend’s frustration—and even while frightened about how the current shortage of Plaquenil may personally affect her long-term health, recognizes it as part of a disturbing larger trend this pandemic has brought to light; one writer Ishena Robinson identified last week in an article for The Root as the “sickness of selfishness.

“I just want folks to stop being assholes and understand that hoarding ultimately hurts all of us,” says Moffett-Bateau. “Whether we are talking about food in grocery stores or life-saving meds, if you only take what you need, there can be enough for us all. Unchecked individualism will kill us if we can’t come together and jointly participate in social distancing and the sharing of resources.”

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Updated: Thursday, 3/26/20 at 7:30 p.m., ET: A Buzzfeed News article published on Wednesday corroborated Moffett-Bateau’s experience, and added even more frightening perspective on the sudden unavailability of Plaquenil. According to Buzzfeed, a Los Angeles-based lupus patient reported receiving an online message from her doctor’s office thanking her for her “sacrifice” as she was informed that she would no longer be able to refill her hydroxychloroquine prescription. According to the message she received, the drug is now being used to treat the “critically ill with COVID-19.”

She would soon find that her area pharmacies were all out of the drug. And a message from the woman’s health care network, Kaiser Permanente, was even less reassuring:

Please do not contact your physician about an exception process to get a refill, as prescriptions will not be filled even if written by your physician. Hydroxychloroquine does build up a level in the system that stays in the body for an average of 40 days even after the last dose is taken. If you do run out of medication and feel your condition is significantly worsening, please contact your doctor to discuss alternative treatments.

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The race of the woman in Buzzfeed’s article is unknown, but if what’s happening at Kaiser Permanente is any indication, it’s not only “wealthy doctors” who are hoarding hydroxychloroquine.

“In their mission statement, Kaiser says that they aim ‘to provide high-quality, affordable health care services and to improve the health of our members and the communities we serve,’” said the woman, identified only as Dale. “How is denying medication for a chronically ill, immunocompromised patient during a pandemic improving my health?”

Maiysha Kai is Managing Editor of The Glow Up and your average Grammy-nominated goddess next door. Minneapolis born, Chicago bred, New York built. Nuance is her superpower.

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