New Selma Blair documentary spotlights a cutting-edge multiple sclerosis treatment pioneered at Northwestern
CHICAGO — In summer 2019, a well-known Hollywood actor could be spotted on downtown sidewalks, her head shaved, her walk aided by a stylish three-wheeled, lemon-yellow scooter.
Selma Blair had come to Chicago for a little-known but often highly effective multiple sclerosis treatment, pioneered in the United States by Northwestern University’s Dr. Richard Burt. Blair’s malfunctioning immune system would be suppressed with chemotherapy, then allowed to reboot with the aid of a hematopoietic stem cell transplant, in the hope of restoring it to health.
The stakes were high, both for Blair, who was very ill, and for the treatment itself, which, despite some excellent published results, remains rare in the U.S.
Now, in the new documentary, “Introducing, Selma Blair,” Blair is offering the fullest picture yet of her treatment and recovery, in what supporters of HSCT for MS, including patients who have undergone the procedure, hope will be a turning point in public awareness.
“It absolutely is a huge moment,” said Julie Eberhardt, a Chicagoan who had the transplant for MS in 2018, and is active in the HSCT communities on Facebook and Instagram.
“Despite the fact that there are so many normal people willing to tell our stories, not a lot of people tend to pay attention,” said Eberhardt. “But if a celebrity’s talking about it, they’ll listen. And honestly, HSCT is a really interesting story; you just have to get their butts in the seats for five minutes and make them listen.”
“Introducing, Selma Blair” will open in select theaters Friday, and launch online Oct. 21 on Discovery+.
The documentary shows Blair’s symptoms before HSCT: her legs stiff and unsteady, the effortlessly funny “Legally Blonde” actor hunched over, her back bending at a precarious angle, as she slowly and carefully navigates a staircase in her home with the aid of a cane.
She’ll be speaking clearly, and then it’s almost like a curtain comes down, and the words start coming out in slow motion, each syllable a monumental effort.
A single mom, Blair, now 49, rallies to play a hilarious game of dodgeball with her now 10-year-old son, Arthur Saint Bleick. But then, every bit of carefully conserved energy spent, she lets herself collapse on the floor.
She tries medication, which can slow the progress of the disease, but it doesn’t work for her. And then, out of options, she turns to HSCT, which is currently being tested in a national clinical trial called BEAT-MS with locations including the Cleveland Clinic and the Mayo Clinic. Burt, who treated Blair, is on sabbatical to publish his findings, teach other doctors about the procedure, and write a textbook, so Northwestern is not currently offering HSCT for MS.
In the documentary, we see Blair preparing for the small but real possibility of death during HSCT; about two in 1,000 patients have died from causes related to the procedure in recent years, according to a 2017 study.
But the potential upside is considerable, according to a 2019 study in the Journal of the American Medical Association, co-authored by Burt. The study of 110 patients with relapsing-remitting multiple sclerosis, the most common kind of MS, found that 79% of patients who received HSCT showed no evidence of disease activity after five years, compared with just 3% of patients who took standard medications.
And for patients with severe or quickly advancing multiple sclerosis, the disease itself poses a serious risk. A 2013 study in the journal Neurology found that 10 years after diagnosis, 9% of MS patients needed a wheelchair or were bedridden.
The film shows Blair getting HSCT at Northwestern, her hospital room decorated with Arthur’s drawing of a plump purple rocket ship and festooned with unframed photos.
We see her face swollen with steroids, her fear when she experiences a bad reaction to an infusion, and her exhaustion and pain. But Blair is up and dancing before she leaves the hospital, performing a joyful loose-limbed jig with the help of her cane.
She learns the disease has stopped progressing in a triumphant post-transplant appointment with Burt, in which she comes close to walking a straight line, heel to toe, unassisted. In August she told reporters she is in remission.
Those who have seen her in public know she still uses a cane and struggles to force out words at times, but the documentary offers a fuller picture of her recovery, both its extent, which can be thrilling, and its limitations, which remain significant.
The primary goal of HSCT for MS is to stop the progression of the disease, avoiding new or worsening symptoms. But some patients report the procedure causes improvements as well.
That was the case with Eberhardt, 34, a lawyer who is back to work full time after HSCT and recently spent a month in Europe. She said she has stopped experiencing disabling MS symptoms such as vision loss and numbness throughout her left arm or leg.
“I’m going to get a little emotional,” Eberhardt said, her voice breaking when she talked about what the procedure has done for her. “It’s allowed me to live like a completely healthy human being, with the mindset of a person who has a chronic illness, and has been severely disabled by it, and had everything taken away. And then this thing called HSCT just gave every single thing back.”
Now, she said, she wants to help other people with autoimmune diseases like MS to get HSCT. She helps MS patients she meets on Facebook and Instagram with advice on how to research the procedure and raise money to pay for it.
The documentary hasn’t been released yet, but Eberhardt said she cried when she saw the trailer and has already scheduled a watch party.