Why Americans with MS are going to Russia for treatment

close

Video

What is multiple sclerosis?

Multiple sclerosis or MS, is a nervous system disease that affects the brain and spinal cord. Reports estimate that 2.3 million people are living with MS worldwide, but what are the symptoms and how is MS treated?

Do you have any desire to travel to Russia?

You might if you have multiple sclerosis.

People with multiple sclerosis (MS) in the United States and Canada are traveling to Russia for an experimental treatment that’s a potential cure for the disease.

However, there are still a number of risks involved.

Hematopoietic Stem Cell Transplantation (HSCT) is a therapy for MS that has, in many cases, been shown to halt progression of the disease with a single treatment.

However, in North America, the procedure is still considered experimental and isn’t widely available. It’s also costly.

The lure of a cure

For individuals facing a potential lifetime of MS, the allure of a cure abroad is tantalizing.

According to Bruce Bebo, executive vice president of research at the National Multiple Sclerosis Society, HSCT treatment is promising. But he cautions there still aren’t enough rigorous clinical studies on it to weigh the real risks and benefits.

MS is a demyelinating autoimmune disease in which the body’s immune system begins to attack the myelin, the protective insulation of the nervous system.

These attacks cause scarring (sclerosis) that leads to a host of neurological symptoms from tremors and loss of vision, to difficulty with speech.

It’s typically diagnosed in individuals between the ages of 20 and 40.

HSCT is a complex procedure that requires a bone marrow transplant similar to that used by oncologists for certain blood cancers.

The treatment is an attempt to “reboot” the immune system and stop it from attacking the brain and spinal cord.

“One way to think about it is that you are reeducating and creating a new immune system,” Bebo told Healthline. “It appears that in many cases when you do this, that new immune system learns that the central nervous system isn’t dangerous anymore and it doesn’t attack it anymore.”

How the treatment works

In the first step of HSCT treatment, chemotherapy is used to stimulate the production of bone marrow stem cells and promote their release into the bloodstream. This blood is then drawn and stored.

The patient is then given a strong dose of more chemotherapy, most often in a hospital setting, for up to 11 days.

During that time, immune cells are either dramatically weakened or killed entirely.

Finally, the patient’s stored stem cells are infused back into the body, learning to leave the nervous system intact.

The process can be strenuous.

Patients must take antibiotics to fight off infections while their immune systems are suppressed.

They must also stay in the hospital for weeks at a time while their immune system rebuilds.

A recent study said that the average hospital stay after the stem cell infusion lasted between 10 and 160 days.

That may be a small price to pay to stop a chronic illness, especially for individuals diagnosed young.

There’s also the matter of the real price — as in dollars.

“I think [the reason] people are leaving the country has to do with cost,” said Bebo. “I’m aware of many people who although they have to fight tooth and nail to get it, can get their insurance company to cover most or all the costs of this procedure in the U.S. It’s expensive.”

The cost is in the six-figure range. Healthline previously reported that it could be done in the United States for about $125,000.

It’s a lot cheaper to go to Mexico or Russia to get HSCT therapy, where “they will perform the therapy for a fraction of the cost,” said Bebo.

Relapsing vs. progressive

There are also caveats to the treatment, dependent on the MS diagnosis.

Broadly speaking, there are two major types of MS: relapsing and progressive.

Relapsing, the more common form, is identified by intermittent “attacks” or exacerbations in which symptoms will worsen for a period and then dissipate.

As the disease progresses, the exacerbations get worse and the overall disability of the person increases.

Bebo describes progressive MS as a “slow, steady progression of disability.” It’s less common but significantly more difficult to treat.

“What little evidence we have at this point suggests that people with progressive MS don’t respond to HSCT,” said Bebo.

Typical drug regimens for relapsing MS, called disease modifying therapies (DMTs), also tend to be less effective for progressive MS.

This “gap,” as Bebo puts it, in treatment between progressive and relapsing MS may be driving medical tourism abroad.

Against doctors’ recommendations, patients may still elect to travel abroad to seek out HSCT for progressive MS.

New drugs, such as Ocrevus (ocrelizumab), have been approved more recently by the FDA for the treatment of progressive MS.

Some serious risks

HSCT treatment isn’t without risks.

It’s not a trivial procedure and has been known for its serious mortality risk.

A study from 2017 concluded that while the procedure showed significant benefit against MS progression, the overall transplant-related mortality rate was about 2 percent.

As the procedure has improved, so have mortality rates. An older 2002 study of 85 MS patients treated with HSCT documented seven deaths in the group — a mortality rate of about 8 percent.

“I think there are still many neurologists who remember the older studies, the high risk of mortality,” said Bebo, “and until there is a rigorous, well-controlled study that documents the effectiveness and mortality risk, then I think some neurologists are going to be hesitant to recommend the therapy.”

What the future holds

But Bebo and his colleagues at the MS society are also enthusiastic about the growing interest and research being done on HSCT.

“I do see the neurology community being more accepting of this approach than they have in the past.”

However, he emphasizes that HSCT isn’t an MS panacea.

Depending on the diagnosis, the procedure must find its way into established therapy methods.

While HSCT is available in the United States today, it could still be years before it’s easily accessible — and affordable.

“We really look forward to the day when we have results from a really well-controlled, rigorous clinical trial to really tell us once and for all what’s the full benefit of this, what are the full risks, and who is the person most likely to benefit from it,” said Bebo.

Until then, people living with MS may choose to seek out treatment abroad, where the chance at a permanent cure may already be available.

In the race against a chronic illness, the U.S. medical system may just be moving too slowly for the young and the desperate.

This article first appeared on HealthLine.com.