The Virginia woman says she and her whole family got the vaccine as soon as it was available. She’s immunocompromised and susceptible to getting really sick if she caught Covid-19. She has lupus and rheumatoid arthritis and it is these diseases that add an extra layer to her frustration and anger.
“We did our part to preserve ourselves, our community, in trying to help battle this by getting vaccinated,” Melendez said. “It’s just unfortunate that the ignorance and laziness, for lack of better words, of other people who avoided taking the vaccine and ended up in the hospital with Covid, now has to impact me.”
The antibody treatment blocks an inflammatory protein called IL-6 that causes damage in rheumatoid arthritis. That same protein plays a role in some of the serious symptoms in people with severe Covid-19 infections.
In the United States, supplies of several dose levels of this medicine have been out of stock since last Monday.
A life saver and life changer
For patients with Covid-19, the drug can be lifesaving. For patients with rheumatoid arthritis, like Melendez, it can be life-altering.
“It has restored my ability to have a fully functioning life,” Melendez said. “Before it, it was so bad that simple things like brushing my teeth, combing my hair, opening a bottle of water, unfastening a pair of jeans, going to a restaurant, feeding myself were all challenges. Standing up and walking was hard. That’s how bad my RA gets and I’m only 47.”
Without the medication, even for a month, people can suffer debilitating flare-ups.
“It isn’t easy to switch drugs, especially when you’re on a serious drug like Actemra,” Taylor said. “You surely don’t want to be bouncing around.”
Genetech is expanding manufacturing
On Thursday, Genentech sent a notice to customers saying it was “working as urgently as possible to expedite replenishments and increase manufacturing capacity and supply wherever possible.”
The company said the medicine should be available for distribution starting Monday, August 30, but “given continued tight supply, Genentech anticipates additional intermittent periods of stockouts in the months ahead if the pandemic continues at the current pace.”
A subcutaneous injectible form of Actemra that has not been authorized to treat Covid-19 is still available for patients with rheumatoid arthritis. Snow suggested patients ask their doctors about it. It’s unclear if insurance would cover it.
And for hospitalized Covid-19 patients, there are some alternatives if Actemra is not available.
“We also strongly encourage Roche to facilitate technology transfer and knowledge and data sharing to broaden access to this important treatment,” the WHO said in its statement.
More pandemic shortages
“All it takes is a little spike in demand and we have problems,” Fox said.
Because of the uncertainty of surges, some facilities also hoarded some medication. Genentech recently said it would not take orders back, and that should cut down on hoarding, Fox said.
“The same as any other manufacturer, they’re going to make enough for what they think they need for the year. Nobody wants to have extra inventory sitting around,” Ganio said.
Ganio said the American Society of Health System Pharmacists has also heard reports of shortages of in-line filters that are used with IV bags. There’s been more demand for them due to the increasing use of the Regeneron antibody cocktail used to treat people with Covid-19.
“It’s very frustrating. In shortage after shortage after shortage the manufacturer does not have a plan for when they can’t supply product. It’s often ‘good luck, we’re out,’ ” Fox said. “All decisions are made about the business first and unfortunately, there’s no requirement to make anything, no matter how life saving it is.”
“I know I can’t be the only person who’s sitting here today on edge,” Melendez said. “I want to make sure they don’t forget about us.”