ICU nurse with lupus is battling a need for own medicine and protective equipment amid coronavirus crisis

Alicia Bligen, RN, works in a cardiac ICU in central New Jersey. On top of concerns about catching the coronavirus, she's also worried about a shortage of the medicine she takes to function. (Photo: Alicia Bligen)

It’s a trying time to be a healthcare worker in America. But for Alicia Bligen, a nurse with lupus who works in a cardiac intensive care unit in New Jersey, it’s uniquely perilous. In a state with more than 13,000 cases of the coronavirus, Bligen has two separate but equal concerns — and both revolve around supplies.

For one, she’s concerned about the lack of personal protective equipment (PPE) at her hospital, especially as a person with an autoimmune disease (meaning she’s more at risk of serious infection). On top of it — in the wake of the Food and Drug Administration approving the drug hydroxychloroquine (HCQ) for treatment of COVID-19 — she’s concerned about a potential shortage of the medicine she takes to function.

Bligen was diagnosed in about 2014 with lupus, an autoimmune disorder in which the body attacks its own tissues, causing symptoms such as severe joint pain, extreme fatigue, fevers, rashes and headaches. Not long after receiving the diagnosis, a doctor prescribed her Plaquenil, the brand-name for hydroxychloroquine (HCQ), an anti-malarial drug that has been shown to ease the symptoms of lupus. Along with a few other medications she takes daily, hydroxychloroquine helps keep flare-ups at bay.

But now, doctors are hoping it’s a silver bullet against the current pandemic.

That theory stems almost entirely from a single, non-controlled study published in the International Journal of Antimicrobial Agents on March 20. Although the results have been praised by President Donald Trump, medical experts (including Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases) have insisted more research is needed, and that a study of 26 people should not be taken as proof that a drug is effective.

Still, in the absence of more evidence, doctors in the United States, Italy and France have all begun prescribing the medicine for patients with COVID-19, putting the more than five million people living with lupus worldwide, many of whom rely on the drug, at risk.

Bligen says hydroxychloroquine is the first line of defense for patients with lupus but also other auto-immune conditions, like rheumatoid arthritis. “It’s one of the main medications they put us on because it helps minimize the flares that you go through,” Bligen tells Yahoo Lifestyle. “I’ve been on it for so long.”

Luckily, Bligen recently refilled her three-month prescription of the drug, but she worries about what will happen once it runs out. “It’s a concern,” she says. “I don't think that it should be something that should be just given out. From what I’ve read, it's not a preventative medication, so people shouldn't be taking it if they don't have the virus.”

Shortages of HCQ are already being reported in states nationwide. One woman in Florida told Bay News 9 she’s called six pharmacies so far and hasn’t been able to track the medicine down. Another in California told NBC News she was informed that it’s “back-ordered everywhere.” On its website, the Lupus Foundation of America posted a letter calling on state pharmacy boards to protect the diminishing supply.

“There are reports of hospitals, health systems, health plans, and providers stockpiling large quantities of HCQ and chloroquine. In some cases, these stockpiles are for exclusive use for COVID-19 or even the potential use of the drugs for COVID-19,” the letter reads. “While we recognize the urgent global need to have treatments for COVID-19 like HCQ and CQ available for that use, we should not deny access to these medications for the people who already rely on them and for whom they are proven to work.”

As someone worried about contracting the disease herself, Bligen understands the desire to get the medicine “Everybody's going to jump on what they feel is the treatment because we're in a time of hysteria,” she tells Yahoo Lifestyle. “So everybody wants to try and get on what they think is going to help.” Still, she hopes doctors will be more thoughtful about who they are prescribing it for.

Even more urgently, she hopes that the supplies she needs to protect herself against COVID-19 will not run out. As of now, she says staff in her hospital are only given supplies when a suspected COVID-19 patient is present, but that doesn’t feel like enough. “Right now that’s my biggest concern. It's a concern with all medical personnel,” says Bligen. “You know, we go in to help people. That's the profession in which we chose, but we also need to be protected ourselves. And right now we're not. I mean there are people who are going to work with trash bags instead of having proper garments on to protect them from the exposure.”

She says that frustration is growing among medical workers like herself for what they feel is a lack of both preparedness and protection. “People are angry, people are fearful, people are anxious. It's you just don't know what you're going to walk into each day. You don't know what's going to change each day, what protocols they're putting in. You're just uncertain,” Bligen tells Yahoo Lifestyle. “And although you may not be on a unit that's specifically dealing with those patients, you're still within the hospital. And so we have to go around with the presumption that everyone has it.”

Bligen, who lives with her parents and sister, is weighing whether or not she’ll continue to work if her hospital suddenly has an influx of COVID-19 patients. But for now, she’s speaking up about the failures that are putting her in danger. “You know, I've heard nurses say they feel like they live in like a third world country,” says Bligen. “You would think that we'd be more prepared for a situation like this.”

For the latest coronavirus news and updates, follow along at https://news.yahoo.com/coronavirus. According to experts, people over 60 and those who are immunocompromised continue to be the most at risk. If you have questions, please reference the CDC and WHO’s resource guides.