Drug used to treat rheumatoid arthritis & COVID-19 in short supply

SALT LAKE CITY — A medication used widely in treating rheumatoid arthritis is out of stock due to a rise in COVID-19 hospitalizations, affecting patients in the U.S. and Utah.

Sharon Greenwood, of Utah County, was diagnosed with rheumatoid arthritis when she was just 12 years old.

“There is no cure,” Greenwood said. “Even if (arthritis) gets in your jaw, then eating is a problem because you can’t chew.”

Decades later and a dozen or so failed treatments, Greenwood finally has a medication that works for her — tocilizumab, known by the brand name Actemra. She has been using the treatment for 10 years.

#EXCLUSIVE– "There's no guarantee," Hundreds of patients… are out of crucial treatment for rheumatoid arthritis, Actemra. @genentech says surge in #COVID19 hospitalizations is to blame for unsatiable demand…& it's affecting Utahns like Sharon Greenwood. Story now on @KSL5TV pic.twitter.com/CbQz5nPGHI

— Garna Mejia KSL (@GarnaMejiaKSL) August 23, 2021

“Without it, the pain is completely debilitating,” Greenwood explained.

However, Greenwood says her monthly treatment is now out of reach.

“I went in for my treatment on Wednesday with the hospital,” Greenwood said that’s when her nurse at Intermountain American Fork Hospital told her there was a major shortage.

“Apparently, just that morning, the drug had been called in. The nurses were told they were not to use it for anyone because it was being confiscated and gathered up to be sent to a central location,” Greenwood said.

Greenwood said she was one of the last rheumatoid arthritis patients to get their treatment.

“The nurse apparently had my drug in her hand and the pharmacist said ‘No, we have to take that,’ and she said ‘No, our patient is here waiting for it,’” she said.

Greenwood said nurses told her the drug was going to be reserved for COVID-19 and possibly cancer patients as the delta variant fuels a surge in virus cases and hospitalizations.

“They told me they were hoping to have more come in in about 4-6 weeks, which will be around the time I have my next appointment, but there’s no guarantee,” Greenwood said, explaining that she is worried about the possibility of not getting her next treatment.

On June 24, the FDA issued an emergency use authorization for Actemra to treat COVID-19 patients in hospitals, including adults and kids age 2 and older.

“The EUA is based on results from four randomized, controlled studies that evaluated Actemra for the treatment of COVID-19 in more than 5,500 hospitalized patients. The results of these studies suggest that Actemra may improve outcomes in patients receiving corticosteroids and requiring supplemental oxygen or breathing support,” said a company spokesperson for Genentech, the U.S. manufacturer of Actemra.

Genentech is the sole manufacturer and supplier of the drug in the U.S. Its parent company, Roche, manufactures the drug outside of the U.S.

However, despite efforts to ramp up production, Genentech confirmed in a written response to KSL, “they’re experiencing a temporary stock out” of the drug in the U.S. since Aug. 16.

A company spokesperson added they expect to receive scheduled replenishments by the end of August. However, they warned, if the pandemic continues to spread at its current pace, there could be more shortages in weeks and months ahead.

“The dramatic emergence of the COVID-19 delta variant, as well as the unexpected slowing of vaccination rates in the U.S., has led to an overwhelmingly high incidence of COVID-19 hospitalizations in certain areas of the country. This new wave of the pandemic has led to Genentech experiencing an unprecedented demand for Actemra IV — well-over 400% of pre-COVID levels over the last two weeks alone — and it continues to increase,” said a Genentech spokesperson.

In the meantime, Greenwood said her doctor and nurses told her the drug is being stockpiled and rationed priority is going to COVID-19 patients.

“For me, it’s about quality of life. But for them, it’s a matter of life or death, and so it does need to go to them first because they are the greater need,” Greenwood said.

Nevertheless, Greenwood said the situation underscores the impact of others’ choice not to be vaccinated as Intermountain experts have previously stated 90% of hospitalized COVID-19 patients are unvaccinated.

“Unless you suffer from rheumatoid arthritis, you may never know that choosing not to be vaccinated is affecting people like me,” Greenwood said, “My hope is that people would choose wisely.”

The World Health Organization, in conjunction with UnitAid, released a statement last week calling on the company to ensure equal access to the medicine and look for ways to increase global supplies.

KSL’s Garna Mejia is also in contact with Intermountain Healthcare, Greenwood’s health care provider, for more information on what exactly the supply shortage looks like in Utah. An update is expected later this week.

The most updated information on the U.S. supply of Actemra can be found here, while information on world supplies can be found here.