There’s a lot of hype about stem cell therapy and how it can stop multiple sclerosis (MS) in its tracks.

But it’s taking a long time for stem cell therapy to make waves in the United States despite some success in other parts of the world.

The U.S. National Library of Medicine and the National Institutes of Health (NIH) are touting stem cell therapy. But it has yet to be approved by the Food and Drug Administration (FDA).

multiple sclerosis stem cell treatment

Two Americans stand out in the race to use stem cell therapy to treat people who have MS.

One is Dr. Richard Burt, chief of the division of medicine-immunotherapy and autoimmune diseases at Northwestern University. He’s been a stem cell therapy advocate for more than 30 years.

The other is Dr. Saud Sadiq, director and chief research scientist at the Tisch MS Research Center of New York. (Sadiq took a very creative route raising more than $300,000 with an Indiegogo account for initial funding of his research.)

Read More: Get the facts on multiple sclerosis »

How HSCT works

Hematopoietic stem cell transplantation (HSCT) often uses a patient’s own bone marrow for stem cell regeneration.

Usually, through a process of chemotherapy the patient is stripped of their bone marrow and then it is replaced with healthier stem cells that have been purified and retrained to stop attacking the patient’s body. Once the cells are regenerated they are placed back into the patient.

HSCT has shown a 70 percent success rate in treating people with MS, but there are risks of serious complications, shorter life expectancy, and even a chance of death.

There are two main motivations for people to take on these risks: to stop progression of the disease and to reverse disability.

Sadiq is also currently working on a stem cell treatment for MS using a mesenchymal stem cell therapy without chemotherapy. Sadiq recently received FDA approval for this phase I trial, the first of its kind in the United States.

Burt recently published an article in the Journal of the American Medical Association (JAMA). The results show that HSCT could be the first MS therapy to reverse disability. Although the study group was small, the results have experts hopeful.

Read More: Brain cell death may be cause of multiple sclerosis »

Success stories

Despite FDA approval, from 2008 to 2014, sixty-three insurance companies in the United States paid for stem cell treatments provided at Northwestern Memorial Hospital.

There are also a number of stories on Facebook and online support groups about successes. Although many of the stories are unsubstantiated, the authors talk glowingly about their stem cell treatments for MS.

Many people with MS would gladly go through this treatment if available. Usually it’s the waiting list, money, or the ability to travel across the country that gets in the way. Plus there’s always the risk that the procedure will not work.

One American, John Carter, recently traveled to Russia to start HSCT treatments. He is writing a blog about his experience.

There are cautionary tales, too.

“Do your research,” says one patient from Canada who spent $45,000 for an HSCT treatment in India only to find out it was a sham.

There are a variety of stem cell therapies and it was later determined that the procedure was not the same as mentioned in this article.

“Stem cell therapy is the way to go,” she continues, “just do your research.”

Read More: Promising new treatments for multiple sclerosis »

Breaking down barriers

Besides the potential to get better with HSCT, the costs, while significant, offer long-term savings.

Costs can be around $62,000 per year for other MS therapies.

There is a one-time fee of about $125,000 for HSCT treatment. However, some doctors do prefer HSCT patients remain on a disease-modifying drug to help prevent progression, but some feel they are not necessary.

President Obama signed executive order 13505, entitled “Removing Barriers to Responsible Scientific Research Involving Adult Human Stem Cells,” in 2009.

There are now large phase III national drug trials. Promising results have been reported from studies at both the Colorado Blood Cancer Institute and Northwestern University.