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:

How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

Teen with Autoimmune Disease Backing Bill to Allow Medical Marijuana in Schools

A teenage boy looks at Bill 331 and smiles alongside a government leader
Connor Scheffield, an autoimmune disease patient, is supporting a bill that would allow medical marijuana in Maryland schools

Connor Scheffield, a teen from Annapolis, Maryland, is backing a bill that would allow medical marijuana to be taken at a nurse’s office in Maryland schools. Currently, medical marijuana is banned from school campuses across the state.

Connor says that if it weren’t for medical marijuana, he wouldn’t be able to get through the school day. This is because the teen suffers from a rare autoimmune disease called Gastro-Intestinal Dysmotility.

GI Dysmotility is a painful condition that causes patients to not be able to digest food and nutrients properly and process waste. Dysmotility refers to the abnormal movement of food, nutrients and waste through the GI tract. When the body’s immune system attacks the nerves in the GI tract, transit through the GI tract becomes impaired. Symptoms of the condition include nausea, bloating, vomiting, diarrhea, constipation, abdominal pains, early satiety, and involuntary weight loss. Neurological symptoms may also accompany the disease.

According to Lawrence Szarka, MD, from the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota, GI Dysmotility can be disabling. “Patients who have [GI Dysmotility] are miserable,” commented Dr. Szarka. “They have no appetite. They have terrible abdominal pains and constipation. Often these patients undergo lots of diagnostic testing and multiple consultations.”

Like many autoimmune diseases, because GI Dysmotility involves the immune system, nervous system, and digestive system, patients must consult with a team of physicians spanning multiple specialty areas. Furthermore, treatment options are extremely limited, and tend to focus on treating the symptoms, like facilitating gastric emptying, rather than treating the disease itself. And while immunotherapies do exist, some patients who test positive for antibodies don’t always respond to the medication.

Young boy is hospitalized for GI Dysmotility, a disabling autoimmune disease
Connor receives treatment for GI Dysmotility, a rare autoimmune disease

Connor was one of those patients. His father, Michael Scheffield, says that his son tried everything before turning to medical marijuana to find solace, and that it’s the only treatment that’s worked so far. Connor takes it in the form of an oil tincture; he puts just a few drops on his tongue and takes it with a swig a water. “I need it every few hours,” said Connor. “It’s the difference between life and death.”

A young boy in the hospital hooked up to fluids as he undergoes treatment for GI Dysmotility
Connor Scheffield was confined to hospital beds as a child before finding solace in medical marijuana

Prior to using medical marijuana, Connor was confined to hospital beds. Since it’s currently illegal to use the substance at schools in Maryland, he must leave his school every few hours in order to take a dose. It’s also illegal for underage individuals to take medical marijuana without the presence of an adult, so when his parents are out of town, Connor has to go without. On those days, the teen says he can hardly get through a school day. “You can take opioids, you know, painkillers in a nurse’s office,” commented Connor. “But I can’t take my cannabis.”

House Bill 331, dubbed ‘Connor’s Courage’ would allow medical marijuana to be used in a nurse’s office in Maryland schools. Connor is currently one of 200 children who are certified to use medical marijuana in Maryland, and who could stand to benefit from this bill.

To learn more about Connor’s story and his experience with GI Dysmotility, please visit the CBS Baltimore website.