(InvestigateTV) – For more than 10 years, a patient in California has been taking a drug to manage her lupus. But this week, when her husband went to pick up the prescription, the pharmacist said they were instructed not to fill it.
The drug is hydroxychloroquine. It is used to treat lupus, rheumatoid arthritis and malaria.
But now it is also being studied as a potential treatment for coronavirus. It is not FDA-approved to treat COVID-19, but people are aware it is in clinical trials for that purpose.
Because of that news, lupus patients say they can’t get the prescription that has been life-changing for them.
They worry their conditions will deteriorate to the point they will not be able to do everyday tasks. They are concerned their already fragile immune systems will become even more susceptible to COVID-19.
The woman in California is out of hydroxychloroquine, and she has no prospect of getting it anytime soon.
“I am already at high risk for serious complications should I contract COVID-19. As if that wasn’t stressful enough, I am now unable to access the medication that keeps my immune system from attacking my vital organs, which will cause irreparable damage,” she said.
She is insured through Kaiser Permanente, which she explained means she is restricted on where she can get prescriptions and care.
This week, she also received an email from Kaiser Permanente through her health care provider. The patient gave InvestigateTV a copy and wanted to remain anonymous in this story.
The email stated that the company would be “conserving” its supply of hydroxychloroquine. It said not to contact physicians to attempt to get a refill because they would not be filled – even through an exception process.
The email stated: “Thank you for the sacrifice you will be making for the sake of those that are critically ill; your sacrifice may actually save lives.”
For patients, it was a slap in the face during a stressful time.
“The fact that they thanked me for my ‘sacrifice’ is disturbing. If I die as a result of not having access to this medication, are they going to thank my husband and my two sons for their ‘sacrifice’? I never agreed to sacrifice my health and possibly my life and cannot believe that I am being forced to do so,” the California woman wrote to InvestigateTV.
Kaiser Permanente responded to InvestigateTV’s requests for comment and said this shortage is affecting health care providers everywhere.
“In the past few weeks, this drug also has been identified as having a beneficial impact in the treatment of some severely sick COVID-19 patients who are hospitalized. We face the real possibility of running out of the drug for everyone if we don’t take steps to mitigate the shortage. Kaiser Permanente, like other health care organizations across the country, has taken the unusual step of temporarily restricting use of the medication to ensure access to it for severely sick patients, including those with COVID-19 and those with acute lupus conditions,” a spokesman wrote in an email.
The statement and the letter sent to patients also explained that the drug builds up in the body and is effective for another 40 days after the last dose – a fact disputed by patients InvestigateTV spoke with who had gone off the medication at times.
Kaiser Permanente said it expected manufacturers to ramp up production during the 40-day time period and is also looking at alternative medications.
InvestigateTV called large and small, private pharmacies in each state to get a sampling of the availability of hydroxychloroquine. More than half (indicated by red) did not have any in stock, and most said they had no idea how long the backorder would be. Many pharmacies said they were almost out (indicated by yellow) and weren’t sure when more would be shipped. One pharmacy in Maryland declined to say if it had any hydroxychloroquine in stock unless a person presented a prescription.
Note: This map does not disclose the exact pharmacies called. All points are mapped to the local city hall address.
Patients InvestigateTV spoke with said hydroxychloroquine has been life-changing and that various other drugs they had tried did not work – or came with dangerous side effects. They are skeptical that another option is a good one.
“It started working for me in about 3 months. I’ve been incredibility stable on it. It’s been a lifesaver,” said Ariel Stone, a patient in Hilton Head, South Carolina who battles several medical conditions, including lupus.
Stone has taken hydroxychloroquine for around 15 years. Prior to taking the medication, she said she struggled. She could not hold a pen. She had to use a crutch to walk.
This week, Stone went to her pharmacist and asked about getting refills. She was told it may not happen.
“I love my pharmacist. I asked her, ‘Am I going to be able to get that refilled when it comes time?’ She just looked me right in the eye and said, ‘I don’t know.’ She was amazed when she went in that morning the stack of prescription orders for the drug because it’s not a big island,” Stone said.
The influx of prescriptions came after researchers and President Donald Trump talked about the potential for the medication.
The suspicion – and reality according to pharmacists - is doctors wrote prescriptions for friends and family in anticipation of hydroxychloroquine being a potential coronavirus treatment.
“Some of the reports from the states indicate that doctors were prescribing for themselves and for their friends and stockpiling the medication,” said Carmen Catizone, the executive director of the National Association of Boards of Pharmacy.
“We are hearing that there have been instances where some prescribers in some hospital pharmacies have been prescribing these medications as a prophylactic drug, or a preventative medication, and it’s creating shortages in the supply system,” Catizone said.
Cyree Jarelle Johnson lives in Brooklyn surrounded by coronavirus cases. Johnson has lupus and has been using hydroxychloroquine to manage the autoimmune disease.
“I’ve gone out of my way for the last 10 years by hook or by crook, no matter how much it costs, to make sure that I take this medication as prescribed every single day. And this is the first time I’ve ever been threatened,” Johnson said.
Now, Johnson can only get two-week supplies, if lucky. The scary thing looming ahead is the unknown. Johnson said the second the president mentioned the drug on television, the fear of a drug shortage was immediate and ultimately accurate.
“People with lupus, especially more than most, live in a kind of precarious zone where we are thought of as patients. But also a lot of focus is on death,” Johnson said. “So if you are a person with lupus who wants to stay alive, you do have to listen to gossip and rumors because, like this time, it turned out to be completely true.”
On Monday, the Lupus Foundation of America called on the White House and governors to ensure patients would have access to hydroxychloroquine.
“In many cases, there are no alternatives to hydroxychloroquine or chloroquine. For patients with lupus, hydroxychloroquine is the only medication shown to increase survival,” the foundation wrote in its letter to elected officials.
The foundation specifically asked that the FDA, the pharmaceutical industry and pharmacies monitor shortages, increase production, and ensure increased supply be available for lupus patients’ access – not all diverted to COVID-19 efforts.
Patients want to see doctors monitored to stop hoarding as clinical trials for coronavirus treatments continue.
“People are scared, and I get that. But just because you have the legal ability to write prescriptions and you are scared doesn’t give you some kind of awesome advantage for getting this drug - which we don’t know if it works, which is why there are studies,” Stone, the lupus patient in South Carolina, said.
Some insurance companies have warned doctors about abusing their prescription-writing powers. Some states have said they will prosecute doctors who inappropriately prescribe.
“Everybody is arguing against people who are stockpiling or going and grabbing up this drug. You can’t do that without a prescription. The doctors who are writing these prescriptions on their ‘friends and family plan’ or whatever are unscrupulous. They need to be prosecuted. They need to be fined. They need to maybe lose their license,” Stone said.
Research assistants Erin Snodgrass, Anum Siddiqui, Cody Downey, Peter Buffo, John Canicosa, and Madison McLoughlin from Loyola University New Orleans contributed to this report.