Karilee Patterson has used Plaquenil for years to reduce the never-ending aches and pains that lupus has caused since she was first diagnosed at age 14.
Lately, though, the drug, which also goes by the tongue-twisting generic name hydroxychloroquine, has been in short supply since President Donald Trump first championed its use for treating COVID-19 in March.
Patterson, 44, said she received an emailed notice from her health provider, Kaiser Permanente, about two weeks ago, just as her three-month supply had almost run out. She was told she shouldn’t even try to get a refill.
The notice, obtained from Kaiser upon request, states that the drug “builds up in the body and continues to work for an average of 40 days even after the last dose is taken,” and adds that, until national stockpiles are replenished through manufacturing “we are no longer refilling routine prescriptions to ensure we have adequate supply to care for our sickest patients.”
Kaiser subsequently softened that stance considerably, telling those like Patterson that they would receive 14-day refills rather than their regular 90-day supplies.
Patterson, though, said she has so far been unable to get any resupply at all. As of Monday, she said, Kaiser’s pharmacy app still was not letting her through. Orders she enters, she said, just disappear with no explanation.
“It’s not sending me a denial, it’s just stopping it, like it never even happened,” Patterson said.
Lupus is a chronic disease where the body’s immune system becomes too aggressive, attacking normal tissue, often causing painful inflammation in the joints and skin. If untreated, organ damage can occur. Science has not yet determined exactly why hydroxychloroquine helps lessen those effects, though the drug is thought to interfere with how immune cells communicate.
A Kaiser San Diego spokesperson said in an email that she should speak to her doctor about the situation. But so far, she said, phone calls haven’t gotten through. Thursday a scheduler finally reached out to make an appointment, but not until April 21. By that point, she said, she will have gone without for more than three weeks.
Karilee Patterson, who is currently experiencing homelessness and is staying in her small car at an overnight lot, has not been able to refill her prescription from Kaiser for hydroxyclorquine which she takes for lupus. She is very scared of contracting COVID-19 because of her weak immune system.
(John Gibbins / The San Diego Union-Tribune)
A survey of local health systems found that all are conserving hydroxychloroquine.
Scripps Health said that, due to an overall lack of medical evidence that the drug works for COVID-19 patients, it is reserving its use only for those who are “critically ill.” Scripps continues to supply existing patients with other conditions such as lupus, but has suspended starting new prescriptions for new patients.
Sharp HealthCare said in a short statement that it is limiting the use of the drug to hospitalized COVID patients only “and only after consultation with infectious disease specialists, who take into account the best available evidence,” weighing that information against possible complications that it may cause. Lupus and rheumatoid arthritis patients, Sharp said, are still being supplied.
UC San Diego Health has taken the strongest stance, saying that it’s not using hydroxychlorquine with COVID patients unless they’re enrolled in a clinical trial.
Recently living in her car after she said her medical condition forced her onto disability, Patterson said her symptoms became severe enough over the weekend that she temporarily moved back in with her parents.
“I just feel so tired and weak,” Patterson said.
Areas where she had previous surgeries, such as her shoulder, back and wrist, have recently become particularly difficult.
“Just lifting my arm to take a drink or turn a door knob is painful,” she said.
Her mother, she said, has begun to share her concerns with erratic breathing patterns when she sleeps.
“They’re saying I should be OK for 40 days, but I don’t feel like I’m OK,” Patterson said.
Of course, she also knows, she said, that it’s not Kaiser causing the current global shortage of this particular drug which was first used to treat malaria and is also commonly employed against rheumatoid arthritis.
Reports of physicians hoarding the drug appeared nationwide in late March, just days after President Trump called it a potential “game changer,” noting on April 6 that doctors, nurses and first responders were taking the drug early, before getting sick, and asking, “What do you have to lose?”
Watching those statements on television, Patterson said, she can’t help but yell back.
“He says ‘it can’t hurt,’ but it can hurt if I don’t get it,” she said.
The current situation, she adds, is extra stressful because the current hope that hydroxychloraquine works for COVID comes out of a very small study in France which has been criticized for a lack of scientific rigor and results in other small trials have shown different results.
Though the U.S. Food and Drug Administration approved the drug for emergency use on March 28, large clinical trials that could prove its efficacy are still underway. Meanwhile, local providers report regular demands for the drug, even if they are not currently sick.
The current situation becomes significantly more fraught at the bedside with hospitalized COVID patients, especially as the disease causes deadly breathing problems. In these near-death situations, said Dr. Eric McDonald, the county’s epidemiology director during a recent news conference, it is difficult to fault physicians for trying anything that might have even the faintest chance of working.
Patterson said she has no problem at all with using hydroxychloraquine in those kinds of situations.
But, with many local medical providers reporting constant demand for the drug from the public, and widespread reports of doctors writing themselves prescriptions, she has a simple message: “I’ll trade you you can take my lupus and you can have as much medication as you want.”