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:

Young Autoimmune Patients Raise Awareness Amid COVID-19 Pandemic

As the COVID-19 pandemic continues to spread across the globe, young patients with autoimmune disease and other chronic illnesses are using the hashtag #HighRiskCovid19 to raise awareness about their conditions.

Although many media outlets and government officials have stated that young individuals need not worry about the coronavirus, and that it’s primarily older individuals who are the most at risk, immunocompromised young people are telling their own story. Whether they take immunosuppressants for their condition, or are at risk due to the nature of their chronic illness, these patients are asking their peers to keep them in mind when they consider venturing out instead of remaining in self-isolation.

Brittania, a 20-year old young woman from Jamaica, tweeted: ‘Hi, I’m 20 and I have Systemic Lupus Erythmatosus (SLE)/Lupus Nephritis. I take immunosuppressants to keep my body from attacking itself. I’m amongst those who have to self-isolate to stay healthy for a majority of this year. So please keep me/others in mind when you think you ‘can’t stay in’.

Sarah Elliott, from San Francisco, California, added: ‘I have multiple sclerosis (MS) and take an immunosuppressant drug for it. I also have severe asthma and take a controller medication as well. I have 2 kids and I would love to watch them grow up. Please help protect us!’

Nancy Mendoza, an autoimmune patient with Rheumatoid Arthritis (RA), also tweeted: ‘I’ve been on immunosuppressing meds for 15 years for rheumatoid arthritis. Stay home. Flatten the curve. People like me are depending on you.’

Others decided to use the trending hashtag to raise awareness on behalf of a loved one with a chronic illness. A man from Medicine Hat, Alberta, Canada, for example, implored: ‘This is my wife. She is on immunosuppressive infusion therapy battling ulcerative colitis and rheumatoid arthritis. She is among the high risk during this COVID-19 pandemic. I’m putting a face to the most vulnerable. TAKE THIS SERIOUSLY.’

Personally, I am also taking greater precautions as the coronavirus spreads further into our communities, since I take immunosupressant medication for Sjogren’s Syndrome and Hidradenitis Suppurativa. I also have asthma, which puts me at a greater risk for serious pulmonary complications, like pneumonia, since the virus is respiratory in nature. Thankfully, I’m able to work remotely, limiting my exposure to others, and my husband has taken on any duties that require us to set foot outside, including grocery shopping.

Do you or someone you love have an autoimmune disease, and are therefore at a greater risk for complications associated with the coronavirus? If so, please comment below and let us know how you’re handling this public health scare as a #HighRiskCovid19 patient.

Top Autoimmune Disease Books to Read in 2020

Have you read any good books lately about autoimmune disease? I am continuously consuming autoimmune-related content, whether it’s blogs, YouTube videos or full-fledged novels. Read on to learn about my favorite autoimmune disease books that you should poke your nose into in 2020!

1. The Autoimmune Epidemic

The Autoimmune Epidemic by journalist Donna Jackson Nakazawa is a thought-provoking read about the potential causes behind many autoimmune conditions. In her book, Jackson Nakazawa theorizes that environmental factors such as pollution, pesticides and other toxins are responsible for the alarming rise in autoimmune diseases over the course of the last few decades. Although not a medical professional or scientist herself, Jackson Nakazawa provides compelling evidence that had me wondering what really triggered my own autoimmune conditions. The author herself has an autoimmune disease called myasthenia gravis that severely affected her mobility. Her book has received praise from numerous acclaimed individuals, including U.S. Senator and Secretary of State John Kerry.

2. An Epidemic of Absence

An Epidemic of Absence by Moises Velasquez-Manoff is another exploratory book about the causes behind autoimmune disease. His main theory is that autoimmune conditions, as well as allergies, are caused by a lack of actual communicable diseases in modern society. In ancient times, our ancestors had to contend with parasites and infectious diseases, like hepatitis A, measles, mumps and tuberculosis, from which they could easily die. However, our modern ‘too-clean’ environment has lead to our immune system attacking a new target – our own bodies – instead. I found that Velasquez-Manoff’s book was a direct contrast to The Autoimmune Epidemic (referenced above), since it posits that autoimmune diseases are caused by an absence of environmental triggers, rather than their presence. The author himself has alopecia universalis, an autoimmune disease that results in total body hair loss.

3. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principals

The Wahls Protocol by Dr. Terry Wahls is an excellent read. I first heard about Dr. Wahls when I watched her viral TedTalk video, Minding Your Mitochondria, in which she describes the relationship between the body’s gut microbiome and the development of autoimmune disease. In her book, Dr. Wahls, who has multiple sclerosis (MS), details how she went from being wheelchair-bound to competing in a marathon after adopting the principals of her dietary protocol. Before implementing the protocol, her MS continued to worsen, despite receiving excellent treatment from some of the top neurologists in the country. Dr. Wahls also stresses the importance of vitamin D naturally derived from the sun in order to maintain a healthy immune system. Although Dr. Wahls’ advice isn’t 100% proven, her medical background and own track record of success healing herself and others is certainly persuasive.

4. The Autoimmune Wellness Handbook

The Autoimmune Wellness Handbook is the first of several novels penned by Mickey Trescott and co-author Angie Alt. The focus of the book is about the Autoimmune Protocol (AIP), a dietary regimen that involves eating paleo, avoiding gluten and dairy, as well as numerous other foods that could ‘trigger’ an autoimmune reaction. I first read the book when I borrowed it from my local library; I had to wait to read the book though, since it was immensely popular, and I was number 25 on the waiting list! Since then, a family member gifted me with a follow-up book by Trescott, called The Nutrient-Dense Kitchen. The book is chock-full of great recipes that are AIP-friendly. Something I like about Trescott’s books is that they not only provide easy to follow recipes, but actually explain why it is that eating this way can help alleviate autoimmune symptoms for some people, including a deep dive into the science behind leaky gut. Trescott herself has both Celiac disease and Hashimoto’s Thyroiditis.

5. The New Sjogren’s Syndrome Handbook

The New Sjogren’s Syndrome Handbook was written by the Sjogren’s Syndrome Foundation (SSF) and edited by a physician familiar with the disease. What I like about this book is that it’s specific to Sjogren’s Syndrome (SJS), which is an autoimmune condition that I have. The book goes into the fundamentals about SJS, including what the disease is, how it is diagnosed, the main symptoms, complications, and treatment options. The one critique I would have for the book is that although it’s called the ‘New’ Sjogren’s Syndrome Handbook, the book was originally written in the 1990’s, so it’s not really new (though the foundation has come out with revised editions since). Overall, I think it’s a great read for a newly-diagnosed patient with Sjogren’s, or a family member/friend of someone with Sjogren’s, so that they can understand more about the disease.

Those are my top 5 autoimmune disease related books! Do you have any favorite novels related to chronic illness, autoimmune disease, or other health-related topics? If so, please share in the comments below!