Drug for autoimmune disorders in short supply because of diversion to COVID-19 cases, where it’s unproven to help

Had Amy Cooper been first in line at the Safeway pharmacy that day, she might have avoided an alarming eight-day struggle to find the medicine she needs to suppress the disabling symptoms of her autoimmune disorder.

Instead, someone else got the last of the hydroxychloroquine at the Fort Bragg store, sending Cooper, who is in home isolation on the North Coast, on a desperate search for the drug she relies upon to function day to day.

Like others who suffer from lupus, rheumatoid arthritis and related autoimmune, inflammatory conditions, the 45-year-old Santa Rosa woman finds herself confronting a shortage of the vital medication, brought on by its unproven benefits for patients infected by the coronavirus.

President Donald Trump has helped fuel that rush, touting the drug as a potential breakthrough in the pandemic - “one of the biggest game changers,” he said recently - despite the caution heaped on by his administration’s top medical advisers.

Those who have depended for years on the drug, known commonly by the brand name Plaquenil, are now facing panic, as one pharmacy after another runs through its stocks with nothing left on the market for resupply.

“It’s not available,” pharmacist Mike McCaskill said from the Hoen Avenue Tuttle’s Pharmacy in Santa Rosa.

The drug’s scarcity has created an unexpected and harsh reality for an untold number of people across the country who need hydroxychloroquine, which, along with a related drug called chloroquine, are being studied for use in COVID-19 patients.

Originally used to treat malaria, it’s been touted heavily by Trump in recent weeks as a potential silver bullet in the battle against the deadly coronavirus, though its track record is limited to a few small, uncontrolled observational experiments and anecdotal reports.

But with the nation’s coronavirus cases at more than 457,000, and deaths surpassing 16,000, many medical providers and patients are desperate for an antidote.

Local pharmacists have watched their supplies of the drug dwindle as they fill prescriptions from physicians treating coronavirus cases. Another major factor in the shrinking supply: a March 25 ban on its export from India, where the United States obtains nearly half its stock. India implemented the ban to keep more of the product for its use in-country.

In addition, the U.S. government has scooped up 30 million ?doses of the drug for the Strategic National Stockpile to use in treating COVID-19 patients or in clinical trials. Some doctors are even prescribing it for themselves and their families as preventive medicine.

As a consequence, people like Windsor nurse Chelsea Ridgway, 32, had to scramble last month to fill her prescription for Plaquenil, spurred on by friends who anticipated a spike in demand once the president started advocating its use for coronavirus.

“I called seven or eight places,” Ridgeway said. “They were all out.”

She was eventually able to get a 90-day supply through Tuttle’s Doyle Park pharmacy, though their provisions were running low this week, pharmacist and owner Robert Pellegrini said.

“It’s definitely going to be a shortage coming up here,” he said.

Santa Rosa rheumatologist Jack Waxman said it’s a problem for “every one” of his patients, who have been calling with increasing frequency as they run into obstacles trying to refill prescriptions.

Some may have to taper their dosage to try to stretch out their supplies, he said, because alternative drugs often suppress immunity, a bad idea in the midst of a pandemic.

Cooper, who is staying in a family cottage in Fort Bragg to limit her exposure to Sonoma County’s higher coronavirus prevalence, said she went to the Safeway there last week to fill her prescription, calling ahead and learning they had 280 doses.

But she was in line when she realized the person in front of her was cleaning out the inventory, buying about six months’ worth through insurance and cash payments to stock up.

“I was furious,” she said.

She had three days of her medication left, and found a small stash of expired pills she has continued to take while she and her sister in Santa Rosa have frantically called around trying to refill her prescription. She’s also been in daily contact with Safeway, where the pharmacy staff called Thursday to say that their Sonoma County stores had been restocked with Plaquenil.

On Wednesday, they had said they would not be getting any more, Cooper said.

Ridgway said she’s uncomfortable with the idea that the drug’s scarcity leaves patients with autoimmune disorders and COVID-19 in competition, as if trying to determine who “deserves” it most.

“I don’t wish anybody to die from this disease,” Lake County lupus sufferer Vicki Jeffers, 63, said of COVID-19. “And if it’s really working, don’t let them die. But if they’re just thinking that it helps, and it’s not really helping, then don’t take it away from the people that really need it, just on a whim.”

Both rheumatoid arthritis and lupus cause the body’s own immune system to attack a person’s tissues when uncontrolled, causing extreme discomfort, pain, tissue damage and fatigue and, ultimately, organ damage and even failure in lupus patients.

“The thought of having to go off of it (Plaquenil) is terrible. It’s terrifying,” said Kelly Smith, Ridgway’s mother, who also has lupus.

A semi-retired nurse and endurance runner, Smith, 61, was off the drug for several years before restarting it last fall, and said the relief from the pain and fatigue of inflammation has been “a life saver.

“If I don’t get it,” said Jeffers, who lives in the community of Nice, “I get so sick, and I have to lay in bed and my leg can’t touch my leg and my arms can’t touch my body. I’m like on fire, with somebody stabbing me with ice picks.”

Cooper said her hands get too swollen to open a car door without the drug, her feet too inflamed and painful to put on shoes or walk.

She also has struggled with side effects that required adjustments to her dosage and have affected her eyesight sufficiently that she’s needed a new prescription each of the past five years, though she never even wore glasses before.

In fact, every hydroxychloroquine patient requires routine screening for side effects, including impacts on the eyes and heart, because it’s such a strong medication. So, the idea of people taking it without even knowing if it’s helpful seems profoundly foolish, patients said.

The dosage suggested for coronavirus patients by the Centers for Disease Control also is “really high,” Ridgway said, though the 14-pill course was stricken three days ago from the federal agency’s website.

In a reflection of the evolving situation, the site now says that hydroxychloroquine and chloroquine are under investigation for use in prevention and treatment of the virus.

At the same time, 54 members of the congressional caucus on lupus and rheumatoid arthritis have written Vice President Mike Pence, chairman of the federal Coronavirus Task Force, seeking action to ensure patients dependent on the drugs for treatment of chronic conditions are able to obtain them.

Under pressure from the White House, India also has suggested it will loosen up restrictions on shipments of the drug.

Santa Rosa rheumatologist Donald Whisler said a solution can’t come soon enough, given how rapidly the situation has been escalating.

“There’s not really a good alternative medication, like we can just switch you to this one that’s very similar,” Whisler said.

Said Cooper, “If it takes me to go without or suffer for days so someone doesn’t lose their life, I’m down for that. But there’s something different broken here. There’s some kind of ugly game going on with this medicine. It’s a medicine that’s really nasty, and that’s OK, if you think COVID is going to kill people.

“If you’re giving this stuff out like it’s candy, that’s dangerous.”