A clip of Ashton Kutcher saying he was “lucky to be alive” made headlines Monday after the actor revealed he was battling an autoimmune disease that caused 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 “rebuild everything” 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. It also explains why a drug used to treat patients with it may be difficult to access in states with abortion bans, after the overturning of Roe v. Wade.
“Vasculitis itself is pretty common. It’s a short-term thing for most people and it’s spontaneous,” explains Dr. John Oghalai, chair of the Department of Otolaryngology at the USC Keck School of Medicine. has sounded extremely serious.”
Vasculitis is an inflammatory disease where the immune system fights the body’s blood vessels, Oghalai explains in basic terms. “It means your blood vessels are being attacked,” says Oghalai. “And this happens for no clear reason.”
Some versions of the disease focus on large vessels such as the aorta, while others may focus on small vessels in the ear or brain. (Vasculitis in the brain can even cause people to have seizures or strokes, he says.) Since Kutcher appears to have made a full recovery, it likely means he was only dealing with a partial loss of blood flow to his eyes and the ears. In more severe cases, “You can have permanent hearing loss and imbalance,” adds Oghalai. “I see a lot of patients with autoimmune diseases like the vasculitis they cause [complete] hearing loss… It’s very dangerous.”
Oghalai says full recovery from vasculitis is “fairly common,” but the next step is to figure out what caused Kutcher’s disease to prevent it from happening again, since “it usually comes back,” Oghalai says.
“The usual ways to diagnose a patient with vasculitis are the black dots on the tips of the fingers or toes, because they are the furthest from your heart,” explains Oghalai. “As the vessel becomes inflamed, blood can’t flow through it, so you can get cell death in very distal limbs.”
Oghalai says patients with vasculitis are usually first given a steroid, such as prednisone, that blocks the immune system. If the steroid doesn’t seem to solve the problem or if the vasculitis comes back, patients can be given methotrexate, “an immunosuppressant drug used for vasculitis and other types of autoimmune diseases,” says Oghalai. “But it’s also used to terminate pregnancy.”
Access to methotrexate, a common and life-saving drug used to treat Kutcher’s diagnosis, could be harder to obtain for people with chronic illnesses in a post-Roe vs. Wade world.
In a state like California, or with a cisgender man like Kutcher, access to medication is likely to be easy. But in states that ban abortion, people with chronic illnesses may have a hard time getting their prescriptions filled. “It’s interesting how the politics of what’s happening today can affect people’s ability to get the care they need. Even if it’s something completely unrelated,” says Oghalai. “And to me, that’s a shame.”
A recent Washington Post article explored how some women have trouble accessing drugs like methotrexate in red states like Tennessee. A Nashville pharmacist 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 pull it off,” says Oghalai. “They should find a pharmacist who is willing to give them that drug, 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 problem and how it has and may affect chronically ill patients across the country. The group’s president told the Post, “There is concern … that one of the unintended consequences is that patients will have reduced access to this drug and other drugs.”