Hoarding medicine: Fighting lupus during the COVID-19 pandemic

When news broke in March that commonly used antimalarial drugs might cure COVID-19, people across the world were buzzing – and then they began to buy the drugs for themselves and self-medicate.

It wasn’t long before reports of overdose in Nigeria surfaced and doctors in Italy warned against a possible chloroquine (CQ) and hydroxychloroquine (HCQ) shortage. US President Donald Trump even spoke about the drugs as a supposed “Food and Drug Administration (FDA)-approved” COVID-19 treatment.

The hype over HCQ is felt in the Philippines too, where it’s more often used as medication for lupus, a chronic autoimmune disease that affects thousands of Filipinos. 

As the COVID-19 pandemic continues and news of potential cures are discussed day-in and day-out, lupus patients are worried about a scarcity of a drug they depend on every day.

Managing flare-ups

Missy* has been using HCQ for her lupus for 11 years, and for the first time, she couldn’t get a hold of her medication in March. Her husband went to or called 10 different drug stores in Parañaque and Muntinlupa before he was able to buy the last pack or banig of pills at a pharmacy – 15 pieces that will last Missy a little over two weeks. 

Her husband didn’t aimlessly try every drug store either – the couple had gotten an update on the branches that had restocked on HCQ on the Hope for Lupus Facebook page, which has more than 7,000 followers. Some pharmacies, they said, had run out of HCQ two days after the restock announcement. 

More recently, the doctors on the page have provided phone numbers of drug stores, advising patients to call ahead to be assured of stock before heading out. 

Rheumatologists and lupus patients alike are concerned about HCQ supplies because every diagnosed patient, whether they have a mild, moderate, or severe case, takes the drug.

According to Philippine Rheumatology Association (PRA) president Jombi Lichauco, the drug not only prevents flare-ups – the inflammation and pain that happens when antibodies attack healthy cells – but it also improves cholesterol levels, the skin, joints, and even prevents blood clots, which is common among lupus patients. 

“I think that if you use an alternative drug, it’s a far alternative from hydroxychloroquine,” Lichauco said, adding that other medications don’t have the same benefits as HCQ.

“When you use other drugs, these are more potent drugs, so they suppress the immune system to a greater degree, and the side effects are more evident, so it’s something that needs to be monitored,” he explained. 

When Missy was first diagnosed with lupus, she was 25 years old and suffering from arthritis. She started out taking two tablets of HCQ a day, along with steroids and methotrexate, a medication for arthritis

Her symptoms tapered after two years, but she still takes HCQ every day, once a day, as maintenance. She hasn’t had another flare-up since then because of this, she said.

Clinical trials for COVID-19

Clinical trials for using HCQ to treat COVID-19 have been underway since March, but a recent study showed that it isn’t better than standard care and is even associated with more deaths. 

Talks about HCQ really kicked off in mid-March, when French infectious diseases specialist Didier Raoult, head of l'Institut Hospitalo-Universitaire Méditerranée Infection in Marseille, explained in a video a study they conducted using it as treatment. 

Before then, scientists from China published a study on March 9 saying that HCQ can inhibit the coronavirus. More recently, Swiss pharmaceutical giant Novartis said on April 20 that they would sponsor a clinical trial in the US on the use of HCQ as treatment for hospitalized COVID-19 patients. 

In lab tests, CQ and HCQ interfered with the coronavirus’ ability to enter cells and blocked them from replicating once they were already inside. The results of lab tests, however, can differ from those of large-scale clinical trials on humans.

On April 21, a US government-backed study that hasn't been peer reviewed was posted on a medical preprint site. It showed that on 368 American military veterans’ medical records, death rates for patients on HCQ were at 28%, compared to 22% when it was taken with the antibiotic azithromycin. 

The death rate for those receiving only standard care was 11%. 

In the Philippines, CQ and HCQ are being used as compassionate care for COVID-19 patients in hospitals like the Lung Center of the Philippines, one of the Department of Health’s designated COVID-19 referral centers.

CQ was first administered at the Lung Center on March 18, and HCQ on March 25, said doctor Virginia de los Reyes, training officer at the Lung Center’s Division of Adult Pulmonology. “The use of these medications is restricted and the patients we used them with are monitored closely,” she added. 

Aside from the two drugs, Lopinavir/Ritonavir and Tocilizumab are also used as investigational drugs for COVID-19, but as De los Reyes said, to say which is most effective is premature at this point.  

“The use of these drugs is based on the experience of Chinese doctors and we have yet to observe the clinical course and outcomes of our patients,” she said. 

'Cut back on the dose'

“The local supply of hydroxychloroquine has been brought to critical levels by increased use for COVID-19,” the PRA said in a position statement on March 21, reiterating that the drug is used for compassionate care by hospitals and not for prevention of the disease. 

The PRA has been communicating with lupus patients to get them through the pandemic without suffering the consequences of an HCQ shortage.

“Our concern is that we have been trying to communicate with them to try to be creative by cutting back on the dose, or the interval of their intake to just tide them over so we can assure them of supply,” Lichauco said. 

He added that they’ve also asked drug stores to allow patients with prescriptions to buy at least 60 tablets or a month’s supply of HCQ and to limit the purchases of those without prescriptions to a maximum of 20 tablets.

Meanwhile, the FDA also reminded pharmacies to sell HCQ only to those with prescriptions, “in reference to the alleged abrupt increase in the purchase of hydroxychloroquine related to its possible use for COVID-19.”

“The FDA appeals to the pharmacies to cater to patients with established indications of this drug. Amidst the challenges of the COVID-19 pandemic, we do not want to leave our patients who have other life threatening and debilitating diseases with nothing to use for their treatment,” they said. 

They also told the public that they shouldn’t take CQ and HCQ to prevent the disease. Common and uncommon side effects of the drugs, they said, include eye disorders, muscle weakness and spasms, psychotic disorders, anaemia, aplastic anaemia, and weakening of heart muscles. 

Assurance

Despite these efforts, getting HCQ is still difficult.

When April began, Missy had 4 packs of HCQ, including the one her husband found. She’s lucky, she said, because she had bought her medication right before the government implemented a Luzon-wide lockdown on March 17. 

Since then, the lockdown has been extended to May 15 for Metro Manila, Central Luzon (Region III), Calabarzon (Region IV-A), and several provinces and islands in Luzon.

Missy admitted that it’s her responsibility to buy her medication on her own and said that she didn’t want to deny COVID-19 patients of HCQ if it was proven to be a cure. What she wants most is a guarantee that there will be enough for everyone in the coming months. 

Siguro assurance lang na mayroong stock eh,” she said, when asked what would make it easier for her and other lupus patients to purchase HCQ. “Kasi parang na-alarm lang kami na nung nag-try kami bumili, walang stock.” 

(I guess just assurance that there will be in stock. Because we were alarmed when we tried to buy it and found that there was no stock.)

As of April 23, Missy’s husband said that they still haven’t been able to find HCQ. 

Aside from cutting back on their dose to stretch their supply of HCQ, Lichauco said that lupus patients will not experience a flare-up as soon as they stop taking their medication, which buys them some time if they’re having trouble getting hold of it. 

Until rheumatologists can assure their patients of enough supply of HCQ, he said, this is the best advice they can give for now. – Rappler.com

*The real name of the individual has been changed to protect her identity and privacy.

Vernise Tantuco

Vernise Tantuco is on Rappler's Research Team, fact checking suspicious claims, wrangling data, and telling stories that need to be heard.

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