“It’s become harder to reach doctors now, harder to be seen to get my bloodwork and prescription, and harder to get Plaquenil,” said Jersey City resident Angel Rodriguez who was diagnosed with lupus five years ago.
Plaquenil is also known as the much-hyped drug Hydroxychloroquine, used to treat COVID-19, though it’s the go-to drug for those with lupus.
“The problem is the President went on TV and urged everyone to get Plaquenil because it helps treat the coronavirus even though the drug had yet to undergo testing in treating the virus,” Rodriguez continued. “How is President Trump going to say, nationally, we can use this drug but there has been no testing, no data, no evidence to support it works, especially when you know this drug is used by people with an autoimmune disease?”
Rodriguez used to get a two-month supply, but now she has been limited to a one-month supply.
“I have no idea how I am going to go about getting more,” she said.
After leaving multiple voicemails, after two weeks she finally got a checkup from her doctor by phone and got the prescription.
“It’s frustrating and disappointing how bad our healthcare system is and how crazy things are, but all I can do is be patient and hope for the best,” she said.
Adding insult to injury, May is Lupus Awareness Month.
Lupus is a chronic autoimmune disease that can cause inflammation and pain in any part of the body. The immune systems of those with lupus attack healthy tissue instead of fighting off infections.
Lupus commonly affects skin, joints, and internal organs such as the kidneys or heart.
Popular medication
Hydroxychloroquine has been on the FDA’s list of Drug Shortages since March 31 because hospitals across the country are using it to treat COVID-19.
This, despite the fact that there are a lack of clinical trials or substantive evidence that the drug is effective in treating COVID-19. Still, the FDA has issued an Emergency Use Authorization (EUA) for Hydroxychloroquine.
The EUA allows for the drug to be prescribed in limited and controlled ways during an emergency. This means that some people are having trouble getting their prescriptions filled or in the amounts they need.
Richard Young, founder of Daddy’s Sunshine, a Jersey City nonprofit which aims to help those with lupus, said he got his prescription only because his pharmacist knows him and put some aside.
“A lot of people have written saying they can’t get their medication,” Young said. “They are suffering, and I’ve been trying to help by connecting them to pharmacies that have it in stock; at least six had some last week.”
There are no good alternatives to Hydroxychloroquine.
In 1956, the FDA approved it for treating lupus and rheumatoid arthritis, particularly skin inflammation, hair loss, mouth sores, fatigue, and joint pain.
It helps decrease flareups and damage over time, delay the absorption of ultraviolet light, and reduce the number of antigen-presenting cells in the skin, according to the Lupus Foundation of America (LFA).
“It’s been 60 years since Plaquenil came out, and there hasn’t really been anything since that can treat lupus the same way,” said Young who estimates that at least 1,000 people in Hudson County have been diagnosed with lupus.
At high risk
Because of their compromised immune systems, those with lupus are at high risk of contracting the coronavirus.
The pandemic has claimed the lives of 87,315 people in the U.S. and infected 1,435,098 as of May 16, according to the CDC.
If I even see somebody sneeze, I catch a cold,” Young said.
Many with lupus still have to go to work, such as Jersey City resident Belinda Gotay, who works at Walmart. Her daughter Desire Rosario, 7, also has lupus.
“Honestly at the end of the day I go into work and risk getting sick,” Gotay said. “I’m scared 110 percent, but I have to do it for my daughter to pay the bills.”
She and her daughter both wear masks, especially when they go on walks. As soon as they enter the house, they Lysol everything, use hand sanitizer, and shower.
“It’s harder for her to understand as a kid, and we try and stay home, but she’s going insane,” Gotay said. “So we go on the front porch or walk the dog, but she understands it is important, especially for us.”
Rodriguez, on the other hand, left the hot zone for suburban New Jersey.
The LFA recommends that patients contact their prescribing doctors and submit refills to their pharmacies before the refill date. Some insurances are waiving their blocks on refilling before the allowed date.
It advises getting a 90-day supply or asking what the maximum refill is and asking to be contacted as soon as the pharmacy has it in stock.
It also recommends calling several pharmacies even those outside their cities or trying mail-order pharmacies if insurance allows.
For those who still can’t get the drug, the foundation advises contacting their doctors to discuss treatment plans.
They can also contact the Board of Pharmacy, a unit of the NJ Division of Consumer Affairs, and file a complaint or the FDA at drugshortages@fda.hhs.gov.
Visit Daddy’s Sunshine at daddyssunshine.org or follow it on Facebook at www.facebook.com/daddyssunshinelupus/
For updates on this and other stories check www.hudsonreporter.com and follow us on Twitter @hudson_reporter. Marilyn Baer can be reached at Marilynb@hudsonreporter.com.
