Millennials diagnosed with MS have found a more progressive treatment and community halfway across the globe.
Imagine being in your 20s and getting diagnosed with Multiple Sclerosis (MS), a potentially debilitating autoimmune disease for which there is no known cure. Although treatment options exist, your doctor's suggestions are only a slice of what's buzzing online. What would you do?
For Carlle Chatten, now 30, the search for relief from MS led her far from her native Vancouver; she sought hope in an alternative treatment offered in Moscow, Russia. While health tourism isn't anything new, a Canadian's trek across the globe for MS treatment seems ironic, since Canada has the highest rate of MS in the world. Surely, you'd imagine Canada—renowned for its health care—would be leading the way in treatment options, but that's not entirely the case.
First, a little context: One theory about MS is that it's thought to be related to Vitamin D exposure—rates of it increase the farther you move away from the equator, says Anthony Traboulsee, professor of medicine at the University of British Columbia and director of the school's Multiple Sclerosis Clinic. In Canada and other frigid regions, people should be taking Vitamin D regularly—about 3,000 international units (IUs) per day, particularly in the winter, he adds. (This is a source of contention in the medical world; the Institute of Medicine recommends 600 IU but many experts say this is too low.)
Although disease-modifying drugs (DMDs) are available in Canada and were suggested by her physicians, Chatten—like many newly diagnosed millennials—went online in search of alternative treatment options upon her diagnosis. What she found was a supportive community of international patients undergoing various treatments and lifestyle changes to manage their MS. Many have chronicled their stories on blogs and social media.
"There was a woman in Australia who kind of pioneered going public about going to Russia to this hospital, and my dad and I followed her quite closely," Chatten says. "But I always thought—just like the DMDs, that it was a really intense procedure. I wasn't sure if that was something I wanted to go through."
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The procedure Chatten is referring to is called Hematopioetic Stem Cell Transplantation (HSCT). According to Russia's MS Patient Association, HSCT is the transplantation of one's own stem cells (which are collected and stored at sub-zero temperatures in advance) back into the body after a course of chemotherapy or immunosuppressive therapy. The chemotherapy kills the autoimmune T-cells that cause the nervous system damage seen in MS patients. The treatment has successfully halted further progression of the disease in many patients.
Ultimately, it was the opportunity to halt the progression of her MS with one procedure that lead Chatten to consider treatment from hematologist Denis Fedorenko and his team in Russia. Fedorenko is known internationally for offering HSCT treatments to patients who travel from abroad for treatment, and has been performing it in Moscow for over a decade. Further examination lead to Chatten's leap of faith: "Russia was always my number one [choice], due to Dr. Fedorenko's history since 2005. He's published several articles about the benefits and the outcomes such as myself—relapsing-remitting, young in the disease, no modifying drugs in their system," she says.
According to the MS Society of Canada, new patients are diagnosed remarkably young—often between the ages of 15 and 40 (Chatten was 27). Coupling the often early-in-life diagnosis with the fact that MS is a progressive disease informs the allure of a procedure like HSCT. However, the procedure—which requires an invasive and painful bone marrow transplant in order to extract the necessary stem cells—is often not discussed by Canadian doctors upon initial diagnosis. "They look at it as a last resort for people in Canada at this point," Chatten says.
She wasn't going to make it hers. Chatten was on a waitlist for nine months before her procedure was scheduled, but she arrived in Moscow just a few weeks ago, and had the bone marrow transplant at Pirigov National Medical Surgical Centre, where Fedorenko practices. She's currently in the process of having her stem cells extracted, and then will undergo chemotherapy.
Many experts are hesitant to recommend as bold a move as Chatten made. "We have other options that seem to be working just as well," Traboulsee says. "I think the demand for HSCT is much less than it was before. And that's really encouraging, because the treatments we use now do carry risks, but they are a lot less worse than going through a bone marrow transplant," he adds.
While not dismissing the benefits of HSCT, Traboulsee is encouraging of safer and less invasive options than the bone marrow transplants HSCT patients must undergo—like Lemtrada, a new product he calls a "smart drug."
"In the past, you would treat autoimmune diseases with chemotherapy—drugs that would shut down any cell. Whereas this new generation of drugs, they just go after a very specific type of cell, so the rest of the body tends not to be affected, except for your target. So patients are less likely to have side effects." Traboulsee says.
He also notes that drugs such as Lemtrada—which use antibodies that go after a very specific type of cells, so the rest of the body tends not to be affected—have been a game changer not only for the treatment of MS, but for all autoimmune diseases, comparing the excitement around it to when antibiotics were invented.
Although Lemtrada is associated with fewer side effects, they do occur, and Traboulsee admits not all newly diagnosed patients are keen on opting into drugs. He understands that in the information age, his patients are going to go online to help guide their decisionmaking about drugs and international treatment options. Above all, he acknowledges the appeal of a once-only treatment like HSCT for young patients hoping to prevent future debilitation from their MS, while urging them to consider the risks along with the perceived benefits.
What Traboulsee hopes is that dialogue will continue in Canada and that new patients will be able to move forward without constant reminder about their MS—regardless of how they go about it. "This is an era of hope. MS sucks, it will always suck, but now we can do something about it," he says.
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