Critical Autoimmune Treatment Becomes Scarce as Trump Touts Possible COVID-19 Benefits

A health care professional holds up Plaquenil, which is being explored as an experimental treatment for COVID-19 (Photo credit: The New York Post).

Last week, I stopped by the pharmacy to pick up my prescriptions – a normal occurrence for any autoimmune disease patient. As I waited in line, a heard a young woman ask for Plaquenil, an anti-malaria drug commonly used to treat autoimmune conditions such as lupus, rheumatoid arthritis (RA), and Sjogren’s Syndrome.

Unfortunately, the pharmacist responded that they were completely out of Plaquenil, and they weren’t sure when they were going to have the medication in stock again. The patient, looking upset, left the pharmacy empty-handed.

It’s no surprise that Plaquenil, and its generic counterpart, Hydroxychloroquine, is in short supply. During recent press conferences, President Trump claimed that the drug had potential to treat those suffering from COVID-19, the disease caused by the novel coronavirus. He was swiftly contradicted by his top infectious diseases adviser, Dr. Anthony Fauci, who said that the evidence that the drug was helpful for the virus was anecdotal at best.

Despite the experimental nature of the drug for treating COVID-19, this hasn’t stopped people from trying to stockpile the drug. In fact, a recent New York Times article stated that pharmacy boards have discovered that doctors are hoarding the medication by writing prescriptions for themselves and their family members. The situation is especially dire in the states of Idaho, Kentucky, Ohio, Nevada, Oklahoma, North Carolina, and Texas.

The American Medical Association’s president, Dr. Patrice Harris, denounced the practice, saying that the association “is calling for a stop to any inappropriate prescription and ordering of medications…and appealing to physicians and all health care professionals to follow the highest standards of professionalism and ethics.”

As a result, a number of pharmaceutical boards have imposed restrictions, such as barring pharmacies from dispensing both chloroquine and hydroxychloroquine unless the prescription includes a written diagnosis of a condition that the drugs have been proven to treat. Other rules include limiting the prescription to a 14-day supply unless a patient has previously taken the medication.

Still, not every state’s board has taken action to ensure that the drug is made readily available to autoimmune disease patients. As a result, the Lupus Foundation of America, Arthritis Foundation, and other medical associations have issued a joint statement urging the White House to ensure access to the medication during the COVID-19 crisis, citing the fact that it is the only known drug shown to increase survival in patients with lupus.

For Sue Hauk, a 48-year-old lupus patient from Conshohocken, Pennsylvania, Plaquenil has been a lifesaver. Her main lupus symptoms include: joint pain, chest pain, fatigue, and nausea, which this medication helps to keep in check. When she first heard reports of the medication being scarce, she contacted her pharmacy to request a refill of her prescription, but they couldn’t offer her more than a five day supply. She then called seven different in-state pharmacies, and then five out-of-state pharmacies – each were either out of stock, or refused to fill her prescription since she wasn’t an existing customer.

“I thought, that can’t happen to me, because I’m on this and this is my life-sustaining drug. If I can’t find more, once it’s out of my system I don’t know what will happen,” Hauk said. “I’m at a loss right now.”

Sue Hauk, a lupus patient, is concerned that she won’t have access to her life-saving medication due to the COVID-19 pandemic (Photo credit: PBS).

There are over 1.5 million Americans living with the autoimmune disease lupus, who could be adversely impacted by the unnecessary stockpiling of this medication. While it’s funny to joke about people stockpiling items like toilet paper, hoarding medication has much more serious consequences.

Samantha Wayne, another lupus patient who has been taking the drug for the last 12 years, said in her YouTube video that hydroxychloroquine ensures that her symptoms don’t flare up and cause more inflammatory damage. She says it also prevents many patients from having to utilize more intensive therapies, such as immunosuppressant organ transplant drugs or chemotherapy. She also points out that this may be the only treatment deemed safe for use for pregnant autoimmune patients. She concludes the video stating that while she’s concerned about finding a way to combat the coronavirus, “those of us with autoimmune issues, such as lupus, we matter too.”

Samantha Wayne, a lupus patient and YouTuber, is raising awareness about the consequences of autoimmune patients not having access to hydroxychloroquine (Photo credit: Live Hope Lupus).

Cindy Messerle, CEO of the Lupus Foundation of America‘s Philadelphia Chapter, echoed those sentiments, saying, “I do hope that a treatment for COVID-19 is found ASAP. If it happens to be with hydroxychloroquine, the important thing is that people who take in on a daily basis for lupus and other autoimmune diseases have uninterrupted access to their medication.”

To read more about our coronavirus coverage, check out the following blog posts:

8-Year-Old Who Died from Autoimmune Diseases Leaves Legacy List of Rules

Ellie Pruitt was an 8-year-old girl who left a legacy of wisdom after passing from autoimmune diseases

Ellie Pruitt was an 8-year-old girl from Canton, Georgia, who passed away from various autoimmune diseases.

When Ellie was just three years old, she began to complain of pains in her legs and fatigue. Ellie’s parents took her to a Pediatric Rheumatologist who confirmed that she had juvenile rheumatoid arthritis, an autoimmune condition causing painful inflammation in the joints. She took steroids and received injections of methotrexate, a disease-modifying anti-rheumatic drug designed to reduce the inflammation.

During Ellie’s short lifetime, she participated in medical studies to determine what causes autoimmune disease. Both of her parents, Heather and Chuck Pruitt, have autoimmune conditions themselves; Heather was diagnosed with type 1 diabetes when she was a college senior, and Chuck was diagnosed with lupus at age 15.

In addition to the medical studies, Ellie and her family participated in the Walk to Cure Arthritis. They formed a team of families representing four children with the condition, called the Woodstock Warriors Against Juvenile Arthritis. Their team raised more than $5,000 for the cause.

Ellie participated in the Walk to Cure Arthritis with her family

After Ellie passed away on February 6th, her parents found a list of ‘rules to live by‘ that she had written. The rules were: 1) Have fun 2) No fighting 3) No pushing, shoving or hitting, and 4) Always love. After her parents found the list of rules, they decided to share it with her classmates to help comfort them after her passing.

Ellie Pruitt’s list of rules to live by

“It’s amazing that an 8-year-old little girl knew what we should focus on,” her mother Heather Pruitt said. “She started [rule] number 5, but erased it, because she knew that’s the greatest…If you can do all those things, you’re going to be in good shape.”

As a tribute to young Ellie’s wisdom, her hometown decided to display her list of rules in various places around their community. Local businesses like Bruster’s and Chick-fil-A displayed rules 1 and 4 on signage outside their stores.

Chick-fil-A displays a sign with two of Ellie’s rules on it

According to Ellie’s obituary, she was very artistic and loved to do crafts, draw, and paint. She was also a dancer and a musician (she played the piano). Her favorite places were school, church and the beach.

If you enjoyed reading about Ellie’s story, please don’t forget to like, share and comment below! Also, subscribe for more autoimmune disease news.