Faced with an incurable condition, people with multiple sclerosis will sometimes seek risky alternative treatments as their disabilities increase.

One of these experimental treatments is Hematopoietic Stem Cell Therapy (HSCT). And it comes with a high price.

HSCT involves extracting white blood cells from the bone marrow of the person with multiple sclerosis (MS). These cells are treated with chemotherapy to make them, in essence, forget they have MS.

Then, they’re reinfused back into the person in hopes of slowing down disease progression. HSCT has been studied and shows promise, but it’s not yet approved as a therapy by the U.S. Food and Drug Administration (FDA).

The promise and hope of a cure is enough for many who have MS and are desperate.

As a result, “stem cell tourism” has grown significantly in the past four years, according to researchers at The Ohio State University.

Stem cell tourism provides unproven stem cell treatments. The program often includes patients and families traveling to countries outside of the United States where the procedure’s performed.

In addition, there are more than 570 clinics currently offering these unapproved treatments in the United States.

Critics say it’s unethical, risky, usually not covered by insurance, and expensive at about $80,000 per treatment, plus travel costs.

“Doctors are taking [HSCT] as a complete process — but it’s not. It hasn’t been demonstrated effectively,” explained co-author Dr. Jaime Imitola, director of the Progressive MS clinic at The Ohio State University. “They’re selling it as a cure, which is not OK.”

Imitola discussed with Healthline this phenomenon known as “therapeutic hope.”

“When battling an incurable disease, you hope for things that help. You want a cure. It’s a natural, biological, and psychological response,” he said.

“I think cell-based therapies hold promise,” added Dr. Bruce Bebo, executive vice president of research at the National Multiple Sclerosis Society (NMSS). “But, they need to be studied in a rigorous and thorough fashion. Unfortunately, it’ll take us some time to fully appreciate the promise and risks of stem cells.”

Those with MS Are Cautioned About Unsafe Stem Cell Treatments

People with multiple sclerosis sometimes become desperate and will travel to other countries for experimental stem cell treatments. That’s not always a good idea.

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Faced with an incurable condition, people with multiple sclerosis will sometimes seek risky alternative treatments as their disabilities increase.

One of these experimental treatments is Hematopoietic Stem Cell Therapy (HSCT). And it comes with a high price.

HSCT involves extracting white blood cells from the bone marrow of the person with multiple sclerosis (MS). These cells are treated with chemotherapy to make them, in essence, forget they have MS.

Then, they’re reinfused back into the person in hopes of slowing down disease progression. HSCT has been studied and shows promise, but it’s not yet approved as a therapy by the U.S. Food and Drug Administration (FDA).

The promise and hope of a cure is enough for many who have MS and are desperate.

As a result, “stem cell tourism” has grown significantly in the past four years, according to researchers at The Ohio State University.

Stem cell tourism provides unproven stem cell treatments. The program often includes patients and families traveling to countries outside of the United States where the procedure’s performed.

In addition, there are more than 570 clinics currently offering these unapproved treatments in the United States.

Critics say it’s unethical, risky, usually not covered by insurance, and expensive at about $80,000 per treatment, plus travel costs.

“Doctors are taking [HSCT] as a complete process — but it’s not. It hasn’t been demonstrated effectively,” explained co-author Dr. Jaime Imitola, director of the Progressive MS clinic at The Ohio State University. “They’re selling it as a cure, which is not OK.”

Imitola discussed with Healthline this phenomenon known as “therapeutic hope.”

“When battling an incurable disease, you hope for things that help. You want a cure. It’s a natural, biological, and psychological response,” he said.

“I think cell-based therapies hold promise,” added Dr. Bruce Bebo, executive vice president of research at the National Multiple Sclerosis Society (NMSS). “But, they need to be studied in a rigorous and thorough fashion. Unfortunately, it’ll take us some time to fully appreciate the promise and risks of stem cells.”

Balancing risks and rewards

Bebo said stem cell tourism occurs because “people with MS don’t have the time to wait for the rigorous and thorough process to occur.”

He said he worries people may pursue HSCT without fully understanding the benefits and risks.

He notes that patients spend a lot of money on a treatment with no proven effectiveness. There are pain, time, and financial consequences.

“Everyone has their own tolerance for risks and benefits,” said Bebo.

He suggests people with MS look at all other interventions before taking an experimental approach.

“Consider incorporating lifestyle changes. Stopping smoking, eating a healthy diet, and exercise are all suggestions to help reduce possibility of disease progression,” he said.

“Striving to participate in a rigorous trial is a smart way to go,” added Bebo. “The NMSS provides funding and resources based on rigorous, well-controlled research. We make recommendations based on solid research.”

Reference:https://www.healthline.com/health-news/ms-unsafe-stem-cell-treatments#1