As experts around the world race to find a treatment for COVID-19, chronic illness patients are finding critical medications in short supply. This includes prescription drugs for lupus, rheumatoid arthritis and HIV.
What Is COVID-19?
COVID-19 (SARS-CoV-2) is a new-in-humans coronavirus that causes respiratory infection. The virus’s most common symptoms include fever, cough and shortness of breath, and in severe cases, difficulty breathing and pneumonia. Other symptoms may include a loss of smell and taste or digestive issues. The coronavirus is highly contagious and is believed to spread to at least two people for every one person infected. Because it can take days for symptoms to appear, people can spread COVID-19 before they know they’re contagious.
What Drugs Are Being Tested for COVID-19?
Researchers and doctors have proposed more than 55 potential treatments to combat COVID-19, according to the Milken Institute’s COVID-19 treatment and vaccine tracker. Some of the drugs on the list are still in development, like remdesivir, which researchers hoped could be used to treat Ebola.
Other drugs currently being investigated for COVID-19 are already approved for other uses, including several prescribed for chronic illness or cancer, including:
- Hydroxychloroquine (brand name Plaquenil) and chloroquine: A disease-modifying drug for autoimmune disorders like lupus and rheumatoid arthritis.
- Sarilumab (brand name Kevzara): A drug FDA-approved to treat rheumatoid arthritis in 2017.
- Tocilizumab (brand name Actemra): Treatment prescribed for several types of arthritis, including rheumatoid arthritis.
- Lopinavir/ritonavir (brand name Kaletra/Aluvia): This drug is used to treat HIV.
- Brand name Prezcobix (darunavir, HIV-1 protease inhibitor/cobicistat, CYP3A inhibitor): This drug is currently used to treat HIV.
- Brand name Truvada (emtricitabine and tenofovir): A drug approved by the FDA in 2004 to treat HIV.
The new focus on these medications for COVID-19 means some chronic illness patients may face a shortage or price increase in these critical treatments. This is already happening with hydroxychloroquine, a drug many lupus patients count on.
What Is Hydroxychloroquine?
Hydroxychloroquine (brand name Plaquenil) is an anti-malaria medication with anti-inflammatory properties often prescribed for autoimmune conditions like lupus and rheumatoid arthritis (RA). Hydroxychloroquine (and a similar drug chloroquine) acts as a disease-modifying drug. It helps lupus and RA patients with their symptoms over time without compromising the healthy parts of their immune system as much as the popular immunosuppressant prednisone.
President Donald Trump brought hydroxychloroquine into the spotlight after touting that hydroxychloroquine in combination with the antibacterial medication azithromycin shows promise for treating COVID-19. While some small, preliminary trials and anecdotal evidence suggest hydroxychloroquine may have some effectiveness against COVID-19, many experts are skeptical and say there’s no evidence it works.
HYDROXYCHLOROQUINE & AZITHROMYCIN, taken together, have a real chance to be one of the biggest game changers in the history of medicine. The FDA has moved mountains – Thank You! Hopefully they will BOTH (H works better with A, International Journal of Antimicrobial Agents)…..
— Donald J. Trump (@realDonaldTrump) March 21, 2020
Q: "Is there evidence to suggest that [hydroxychloroquine] might be used as a prophylactic against COVID-19?"
Fauci: "The information that you're referring to is anecdotal. It wasn't done in a controlled clinical trial, so you can't make a definitive statement about it." pic.twitter.com/dEjtBNMGeA
— CBS Evening News (@CBSEveningNews) March 20, 2020
Regardless of the skepticism, people are hoarding hydroxychloroquine and causing a shortage for those with lupus and other conditions that rely on the medication, including at least one dentist who tried to fill a prescription of the medication for his family and friends.
Abusing your prescriptive authority to call in scripts that are OUT OF YOUR SCOPE OF PRACTICE is a hard no.
Never mind that HCQ +Azith was based on a very small, flawed trial.
Calling in scripts for yourself + family members is always a no. You don’t ‘doctor’ family/yourself.
— Katherine Rowland (@DRxKatherine) March 22, 2020
Reports of Medication Shortages
We asked The Mighty’s chronic illness community if they’ve had trouble getting their medications due to COVID-19. Though several people said they weren’t having any trouble, others reported difficulties filling a recent prescription:
Was told at the pharmacy that I can’t get my hydroxychloriquine for another week due to shortage. — Pam C.
My doctor refused to order my Plaquenil, a med I had taken for 10 years for lupus! — Debbie K.
I called every pharmacy with no luck. I was told by one pharmacy tech that doctors were prescribing it to themselves, friends, and family as a preventative which is causing a shortage. I shared an article on Facebook and a friend who is a pharmacy tech called me after reading it telling me that her pharmacy had it in stock, but holding it from the public. She was able to fill me a 30-day supply, but she said that all of the hydroxychloroquine is being diverted to hospitals until further notice. Nobody knows if we will be able to fill our meds in the next coming months. — Megan C.
Dangers of Hoarding Hydroxychloroquine
Hydroxychloroquine and chloroquine shortages harm lupus and other chronic illness patients who need the medications to treat their existing conditions. If lupus patients can’t access the drugs due to a shortage, they’ll face disruptive disease flares. They may also need to take alternative anti-inflammatory medications instead that make them even more vulnerable to COVID-19.
Please do not misuse hydroxychloroquine. This med is critical for people who have SLE, like me. I was told today that my prescription cannot be filled because the suppliers are completely out. Now I do not have the meds I actually need for an incurable disease I actually have. ???? https://t.co/dlwuWCwVZk
— Anna Valdez, Ph.D., RN (@drannamvaldez) March 21, 2020
But there are other dangers for those who are trying to hoard an unproven COVID-19 medication. Dena Grayson, M.D., Ph.D., shared on Twitter that hydroxychloroquine and chloroquine can cause fatal side effects. Three people in Nigeria died after overdosing on chloroquine following Trump’s claims about the medications. Banner Health in Phoenix, Arizona, reported a man there died after ingesting chloroquine.
“These anti-malarial drugs are associated with potentially FATAL side effects and should only be taken under close supervision of a doctor,” Dr. Grayson tweeted.
Pals, pls don’t stockpile drugs that A) are in only preliminary stages of being tested for Covid-19, B) are urgently needed NOW by people with rheumatoid arthritis, lupus, and Ehlers Danlos, and C) COULD FUCKING KILL YOU. https://t.co/uemAfd0OcU
— Marjorie Ingall (@MarjorieIngall) March 23, 2020
As news of the shortage of critical chronic illness medications spreads, patient advocates and nonprofit organizations are working to make sure lupus patients have access to their necessary medications.
“We are actively working with our medical and scientific advisors, other patient groups, partners, and the federal government to take steps that ensure people with lupus will be protected from a disruption in access to critical medications,” wrote the Lupus Foundation of America in a recent statement. “Many hospitals and clinics that treat people with lupus also are working to ensure that those with existing prescriptions will be able to continue their course of treatment.”
Concerned about coronavirus? Stay safe using the tips from these articles:
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- 8 Soaps You Can Use to Help Prevent the Spread of Illness
- Coronavirus and Chronic Illness: What You Need to Know