From popular Instagram posts to the cover of People magazine, actress Selma Blair has become the face of multiple sclerosis in America this year. Her public profile emphasizes her glamour, her grit, and something else – a drastic, expensive and potentially dangerous stem-cell treatment that “reboots” the immune system. Now, neurologists are getting questions about the procedure she’s undergoing, and patients are learning that it can have dramatic impact but isn’t appropriate for many patients.
|The procedure, known as hematopoietic stem cell transplantation (HSCT), is used to treat the relapse-remitting form of MS. “At this point, it is an option for people with highly active relapsing MS and inadequate control with the available medications. It should not be considered a standard therapy and does carry significant risk,” said neurologist Jeffrey Cohen, MD, director of experimental therapeutics at the Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research.
Neurologist Mark S. Freedman, HBSC, MSC, MD, CSPQ, FAAN, FRCPC, added that the treatment “has got to be done early in the course of disease, when the nervous system hasn’t been completely ravaged, when there’s not damage beyond repair.” Many patients with MS don’t fit into this category, he said. But Blair apparently does, and she chronicled her treatment online.
|The 47-year-old actress, known for her work in TV shows (“Anger Management,” “American Crime Story”) and films (“Legally Blonde,” “Cruel Intentions,” the “Hellboy” movies), announced in October 2018 that she had recently been diagnosed with MS. “I am disabled. I fall sometimes. I drop things. My memory is foggy,” she wrote in an Instagram post that was “liked” more than 100,000 times. “And my left side is asking for directions from a broken GPS. But we are doing it. And I laugh and I don’t know exactly what I will do precisely but I will do my best.”
|Ms. Blair wrote that she’d been experiencing symptoms for 15 years but was diagnosed only in August 2018 by Los Angeles neurologist Jason A. Berkley, DO, of Cedars-Sinai Hospital. No one had taken her seriously about her symptoms, she said, until Dr. Berkley watched her fall in front of him. She later opened up about her MS in a cover story for People magazine and a “Nightline” feature with Robin Roberts.
Neurologists say they’re hearing from patients who are curious about HSCT for MS. “Selma Blair’s story has increased interest and awareness in HSCT,” said neurologist Tanuja Chitnis, MD, FAAN, of Harvard Medical School, Boston. “HSCT is an option for patients with aggressive relapsing MS who have either failed or not tolerated other disease modifying therapies. I tell [patients] that this is an intensive therapeutic regimen that involves mobilization of ‘naive’ stem cells from the bone marrow with a series of treatments, and collection of the stem cells for freezing. Then, patients undergo a chemotherapeutic ablation of circulating white blood cells, and finally the frozen stem cells are returned to the body, where they engraft into the bone marrow.”
As Dr. Freedman put it, “we ensure that we’ve removed every last cell that carries the memory of the disease.” He is director of the multiple sclerosis research unit at the Ottawa Hospital–General Campus and professor of medicine-neurology at the University of Ottawa.
Dr. Chitnis explained that entire process can take 2-3 months, and patients must undergo a “period of relative isolation” to avoid infection while the immune system is vulnerable.
|Ms. Blair has vividly described the challenges of the treatment. “I am immunocompromised for next 3 months at least. So no kisses, please,” she said in a post debuting her shaved head. She posted Instagram photos of herself in a bath – with what appear to be bruises on her legs – and in a bikini. “Insomnia,” she said in the bath post. “I am like a waking baby. Afraid and want to cry. I want my mom. I do. I will take a bath. And cry. The beginning is hard. I have to Remember. #hsct #baby.”
In another post, she says “since chemotherapy and high doses of prednisone, I have lost any ability to focus with my eyes,” adding that “underneath all the doubt. It will be ok.” and “this too shall pass.”
Her prognosis appears to be uncertain, but previous treatments with HSCT have managed to stop the progression of MS in others. A 2017 observational study coauthored by Dr. Freedman found that nearly half of 281 patients with MS who underwent HSCT didn’t show signs of neurologic progression at 5 years (46%; 95% confidence interval, 42%-54%) (JAMA Neurol. 2017 Apr 1;74:459-69). Another 2017 study, a phase II clinical trial of 24 patients with MS who underwent HSCT, found that 69% of patients didn’t suffer neurologic progression or death at a median of 62 months (90% CI, 50.2%-82.1%)(Neurology. 2017 Feb 28;88(9):842-52).
More research is in the works. Cleveland Clinic’s Dr. Cohen is preparing to launch a randomized, controlled, multicenter study later this year. It will compare HSCT with approved monoclonal antibody therapies in about 150 patients. Dr. Cohen expects results in 2023.
For now, he said, the treatment “should only be performed at centers with experience both with hematopoietic transplant and with managing MS. It can be done outside of trials, in which case the patient must pay. For uncomplicated transplant, the cost generally is $100,000-150,000. It costs more if there are complications.”
|Dr. Freedman cautioned that some damage from MS is irreversible regardless of HSCT, and patients may continue to suffer from fatigue, pain, and “brain fog.” According to him, patients do best when they are younger – ideally in their 20s and 30s – and have had MS for fewer than 10 years.
Still, he said, “we have patients who look like Selma who are walking down the street with high heels within 2-3 years [of treatment], and you’d never know they had MS.”
Dr. Freedman reported no disclosures.
Dr. Chitnis has relationships with Novartis, Biogen and Genentech (consulting) and Novartis, Sanofi Genzyme, and Mallinckrodt (clinical trial research and research funding).
Dr. Cohen reports compensation for consulting (Convelo Therapeutics and the Population Council), speaking (Mylan), and serving as an editor of Multiple Sclerosis Journal.