I Have Lupus, and COVID-19 Is Taking Away One of The Drugs I Need To Survive

Angel Williams, with additional reporting Alexis Jones
Photo credit: Angel Williams
Photo credit: Angel Williams

From Prevention

I used to be a mental health and disability services business supervisor in Richmond, Virginia, but I've been on permanent disability since 2015 because of lupus, an autoimmune disease I've dealt with for over 20 years.

Lupus symptoms can range from severe joint pain and fatigue and body aches to temporary paralysis if a flare up gets really bad, and I've experienced all of these issues. The disease affects over 1.5 million Americans—and 90 percent of those diagnosed are women. If you’re a Black woman, we're three times more likely to be diagnosed with disease than Caucasian women. And actually, one in every 250 Black women develops lupus.

To give you an idea of just how debilitating this condition is for me, I take 32 pills a day including various medications used to treat lupus symptoms, plus pain medication—and I'm only 33. I also have to be super-strict in taking these same pills every day in order to manage my health.

Now one of the medications I rely on most to manage my lupus is being used as an experimental drug to treat COVID-19, and my supply is getting drained because of it.

I've relied on hydroxychloroquine (better known by the brand name Plaquenil) as my primary medication for the past 21 years, taking 200 milligrams twice a day since I was 12 years old.

Plaquenil is a immunosuppressant drug used to treat lupus symptoms ranging from muscle and joint pain to skin rashes, fatigue, and fever. The drug can also help prevent lupus from affecting major organs, like the kidneys, and from damaging your brain and spinal cord which can result in death. To give you an idea of how severe the disease is, lupus is ranked the fifth leading cause of death among Black and Hispanic women.

And the only chance we have at not becoming victim to that statistic is to have a symptom-management regimen that's led by finding the right medication combo. Plaquenil can actually reduce the chances of a lupus flare, which is basically a fit or episode of symptoms being experienced at the same time. I went on a Plaquenil "strike" once in middle school because I was tired of taking medication all the time—and I ended up in the hospital with near-kidney failure. That's how crucial taking this drug is for me.

When I first heard that Plaquenil was being used as a treatment for COVID-19 patients, I thought it was great news.

I didn't realize what an issue it could be for my health. Hydroxychloroquine has anti-inflammatory properties that can help address fever, extreme joint pain, and organ dysfunction—symptoms and side effects that many COVID-19 patients experience. And on March 28, the FDA issued an Emergency Use Authorization for hydroxychloroquine to be used in hospitals to treat novel coronavirus patients. I figured that if it the drug had been helping me for so long, maybe it could help those with COVID-19 feel better too.

But then I did more digging and started understanding there's not much in the way of solid scientific evidence that Plaquenil is a viable COVID-19 treatment. Preliminary international research did suggest it might speed up recovery in severely ill COVID-19 patients—but a new study published last week in the New England Journal of Medicine showed that wasn't the case after all.

Of course, at this point, the President has already tweeted and announced during live press briefings that hydroxychloroquine is an effective treatment for COVID-19 and is being stockpiled for distribution...without certainty of the drug's effectiveness treating novel coronavirus patients. And I'm not just being selfish when I say the evidence in favor of using Plaquenil on novel coronavirus patients is scant; the FDA went as far as to issue a warning against using hydroxychloroquine on your own to try to treat the new virus due to potential side effects, including heart arrhythmia.

At the end of March, headlines started popping up that lupus patients were having issues getting their Plaquenil prescriptions, and I began to panic.

When I first came across this news, I had a little more than a month's worth left of Plaquenil. I wasn't able to request my next 90-day supply for another two weeks. I called a few of my friends with lupus that day to see if they'd experienced any trouble, and several of them said their prescriptions had either been cut down or not filled at all. I began to get super anxious and stressed out as the days went on and my medication continued to dwindle.

Eventually, all of the stress—which can trigger lupus symptoms—got to me. I had a flare up and became really sick with severe body aches, skin lesions, and a low-grade fever. I've since recovered, but I'm still not at 100 percent. I'm feeling way more fatigued than usual, especially for someone who hasn't left her house for seven weeks.

On the evening of April 13, I called in three prescriptions, including Plaquenil.

The next day, I got a message on my phone saying the pharmacy could only fill two out of the three prescriptions, but Plaquenil was not one of them. I called them back immediately and the technician told me that she'd have to check with the pharmacist on whether or not they'd be able to refill the prescription, and she'd give me a call back.

On April 15, I had an interview with my local news station about Plaquenil shortages. That day, I had no clue what the fate of my own Plaquenil access would be. And although I tried to be positive on television, on the inside I was freaking out. I thought back to when I was 12 and my kidneys started giving out. I couldn't help but think, what organ is going to fail next?

Immediately after that interview, I called the pharmacy again.

The technician told me that they'd been able to fill the Plaquenil prescription after all and that I could pick it up that day. So I sent my fiancé out to get it. But he called me in the car after heading into the pharmacy and said, "I've got three prescriptions, but the pharmacist wants you to call her."

In that moment, I just knew something was wrong. When my fiancé got home, I called the pharmacist and she said, "I gave you your prescription, but it's not for the entire 90 days. It's only half." She told me that when I needed the next 45-day supply, I'd have to call in and request it again.

She said that the store's management would not allow the pharmacy to fill more than half of anyone's Plaquenil prescription at a time and that they were just going with the flow like everybody else. She was so sweet on the phone, but for lupus patients, "going with the flow" isn't a comforting thought.

The next day, I started calling around to different pharmacies to learn how each of them was handling the influx of requests for Plaquenil. I quickly learned that I was one of the lucky ones. Some pharmacies were only filling up to 10 days' worth of the drug at time. I can only imagine the stress that's causing for countless lupus patients.

I am already dreading and counting down the days until I have to call in my prescription again. There's no certainty that I'll get 45 pills next time. There's no certainty that I'll get any.

While it’s unclear whether COVID-19 patients could benefit from Plaquenil, lupus patients can and will suffer without it.

Thankfully, the Lupus Foundation of America is working to ensure that if you have a lupus diagnosis, you're prioritized for Plaquenil. If you're affected by this, you should call your physician to make sure they notify the pharmacy that you have an autoimmune condition that the medication is approved for, Micaela Bayard, MD, a rheumatologist at Mount Sinai hospital in New York, tells WH. This has helped many of Dr. Bayard's patients get at least a month's supply.

Additionally, the National Alliance of State Pharmacy Associations reported that at least 22 states have passed regulations to limit hydroxychloroquine prescriptions by requiring doctors to write a diagnosis on the prescription.

Ultimately, we *all* deserve to live, and to live well. As a lupus patient, I think it's important for people to understand that we're not trying to be selfish. Being without this drug can severely impact my life, the lives of thousands of other lupus patients, and more specifically and disproportionately, Black lupus patients, just like me. I care about people with COVID-19 and understand they're just as anxious right now as I am. But we lupus patients know that Plaquenil works for us.

I want pharmacies to put lupus patients first when filling these prescriptions. And to everyone else worried about COVID-19 and desperate for a cure, please recognize that your uncertain hope is my lifeline.

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