A clip of Ashton Kutcher saying he was “lucky to be alive” made headlines on Monday after the actor revealed he battled an autoimmune disease that led him to temporarily lose his ability to see, hear, and walk. Without going into detail, Kutcher shared that it took him “about a year” to “build it all back up” after his vasculitis diagnosis. “You don’t really appreciate it until it’s gone,” the actor said.
An expert tells Rolling Stone that Kutcher’s symptoms line up with what would likely be an “extremely severe” case of the autoimmune disease. He also explains why a medication used to treat patients with it may be difficult to access in states with abortion bans, following the overturning of Roe v. Wade.
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“Vasculitis itself is pretty common. It’s a short-term thing for most people and it results spontaneously,” explains Dr. John Oghalai, chair of the Department of Otolaryngology at USC Keck School of Medicine. “What he’s had sounds extremely severe.”
Vasculitis is an inflammatory condition where the immune system fights blood vessels in the body, Oghalai explains on basic terms. “It means your blood vessels are being attacked,” Oghalai says. “And it happens for no clear reason.”
Some versions of the disease focus on large vessels like the aorta, while others can focus on small vessels in the ear or brain. (Vasculitis in the brain can even lead people to having seizures or strokes, he says.) Since Kutcher has seemingly fully recovered, it likely means he only faced a partial loss of blood flow to his eyes and ears. In more severe cases, “You can have permanent hearing loss and disequilibrium,” Oghalai adds. “I see a lot of patients with autoimmune diseases like vasculitis that cause [complete] hearing loss… It’s very dangerous.”
Oghalai says that full recovery from vasculitis is “fairly common,” but the next step is finding out what caused Kutcher’s disease in order to prevent it from happening again, since it “usually comes back,” Oghalai says.
“The common ways that you would diagnose a patient with vasculitis is black spots at the tips of their fingers or toes, because those are the furthest away from your heart,” Oghalai explains. “As the vessels become inflamed, the blood can’t flow through it so you can get cell death at very distal extremities.”
Oghalai says that patients with vasculitis are typically first given a steroid, like prednisone, which block the immune system. If the steroid doesn’t seem to solve the issue or if the vasculitis returns, patients can be given methotrexate, “an immunosuppressant medication used for vasculitis and other types of autoimmune diseases,” Oghalai says. “But it’s also used to terminate pregnancy.”
Access to methotrexate, a common and life-saving drug used to treat Kutcher’s diagnosis, could become more difficult to obtain for chronically ill people in a post-Roe vs. wade world.
In a state like California, or with a cisgender man like Kutcher, access to the medication is likely easy. But in states that ban abortion, chronically ill people may face a difficult time filling their prescriptions. “It’s interesting how the politics of what’s going on today can actually impact the ability of people to get the care that they need. Even if it’s a totally unrelated thing,” Oghalai says. “And to me, that’s a shame.”
A recent article from Washington Post explored how some women are having trouble accessing medication like methotrexate in red states, like Tennessee. A pharmacist in Nashville described the now-difficult access to the drug — used by nearly 60 percent of rheumatoid arthritis patients, according to the Johns Hopkins Arthritis Center — as the “tip of the iceberg.”
“They may not be able to get it,” Oghalai says. “They’d have to find a pharmacist that’s willing to give them this medication, knowing that it could be used for something that is illegal in their state.”
The American College of Rheumatology has assembled a task force to assess the issue and how it has and can affect chronically ill patients nationwide. The group’s president told the Post, “There is concern … that one of the unintended consequences is that patients are going to have reduced access to this medicine and other medicines.”
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