When news broke earlier this year that actress Selma Blair had gone into remission following a stem cell transplant to treat her multiple sclerosis (MS), many people had questions about the procedure and her access to it.
Blair, who was first diagnosed with MS in 2018, underwent a procedure known as hematopoietic stem cell transplantation (HSCT), which prompted her remission. The ups and downs she experienced before, during, and after the transplant can be seen in the documentary “Introducing, Selma Blair.” The procedure changed her life — not only by allowing her to enter remission, but also by changing her outlook. “I never really liked life, I do now,” she told reporters.
After hearing about Blair’s success, some others with MS raised questions about HSCT, so MyMSTeam News is sharing three facts about the procedure.
During HSCT, physicians use chemotherapy to destroy a person’s immune system, then introduce stem cells back into the person’s body to reset or reboot their immune system. It’s a serious and taxing procedure, neurologist Dr. Aaron Boster explained during a live Q&A event with MyMSTeam on Dec. 16.
“It’s arguably one of the most serious procedures that a human could undergo,” Boster said. “During the procedure, you ablate the patient’s immune system, so they have no immune system. And then you give them back a nascent immune system and pray that it takes. And the idea is that you’re removing the autoimmunity and replacing it with a new immune system that doesn’t make the same error.”
Although stem cell therapy appears to be promising for some people with MS, it’s still a relatively new treatment for multiple sclerosis, and it’s not yet widely available in the U.S. The U.S. Food and Drug Administration (FDA) has approved the medications and procedures used in HSCT, but the procedure is not FDA-approved for treating MS. In addition, many insurers still consider it experimental for treating MS and therefore won't cover HSCT for people with the condition.
In addition, as a newer procedure for MS, there are still unknowns about HSCT’s effectiveness for people with the condition, as well as the potential side effects that may emerge. Clinical trials for this procedure are ongoing, and more information is needed about how it might affect people with MS.
Members of MyMSTeam who have undergone the procedure have reported a variety of responses to the therapy. “I had HSCT at Northwestern seven years ago [as part of a] study,” one member wrote. “Before that, I was 32 in a nursing home. Now I live on the third floor of an old house and haven't taken any DMDs [disease-modifying drugs] in seven years. Wish I’d had it sooner.”
However, another member wrote, “I had this treatment back in 2018, but sadly, I have had no change. If anything, my lesions are still growing.”
Because availability of the procedure in the U.S. is limited, some people seek HSCT treatment in other countries, such as Russia, Israel, or Mexico. Stem cell transplants abroad can be costly, with estimates ranging from $20,000 to $100,000.
People considering getting HSCT overseas should do their research and be very careful. Stem cell therapy clinics may make HSCT seem affordable and safe, but some such clinics have not demonstrated proven results, and outcomes may vary from one clinic to the next. During MyMSTeam’s live Q&A, Boster warned against what he referred to as “stem cell tourism.”
“Sometimes they’re doing a real stem cell transplant, and sometimes they’re not,” he said regarding overseas stem cell transplantation clinics. “Sometimes they’re being open and honest and providing follow-up, and sometimes they’re not. At my clinic, I’ve seen many, many patients who have gone elsewhere to receive a stem cell transplant and then I’m trying to pick up the pieces and help them.”
Participating in clinical trials that are studying stem cell treatment for MS may be one way to gain access to this therapy. MS specialists may be able to advise whether people with the condition might be a candidate for such trials.
“I think stem cell transplantation is very exciting, and I think it will become a mainstay for very, very aggressive MS within the next 10 years, but I do not recommend it outside of a clinical trial today at the end of 2021,” Boster said.