HSCT forum on Facebook ?

[JerryD]

I found an HSCT forum on Facebook, a few days ago ! I was interested in this, a few years ago, when Dr. Richard Burt was running clinical trials at Northwestern U. and it looked, to me, that the treatment was working to greatly benefit the patients. Then, Dr. Burt discontinued the program! Does anyone know what is happening with this ? From what I have read on Facebook, it looks like there are treatment sites in Russia, Mexico and Israel .

[KoKo]

I found an HSCT forum on Facebook, a few days ago ! I was interested in this, a few years ago, when Dr. Richard Burt was running clinical trials at Northwestern U. and it looked, to me, that the treatment was working to greatly benefit the patients. Then, Dr. Burt discontinued the program! Does anyone know what is happening with this ? From what I have read on Facebook, it looks like there are treatment sites in Russia, Mexico and Israel.

Hello JerryD!

HSCT is not for everyone with MS, according to this info from the NMSS.

FAQ-About-HSCT.pdf (nationalmssociety.org)

There is growing evidence that autologous HSCT is not for everyone with MS but may be highly effective for people with relapsing MS who meet very specific characteristics.

The National Medical Advisory Committee of the National MS Society has written an article reviewing evidence related to the optimal use of autologous hematopoietic stem cell transplantation (HSCT, commonly known as bone marrow transplants) for the treatment of specific types of relapsing multiple sclerosis. The committee’s findings are published in JAMA Neurology (online October 26, 2020).

Q. Who might benefit from HSCT?

A. So far, published results suggest that people who may benefit from HSCT are under 50 years of age, have highly inflammatory relapsing-remitting MS, can walk, have had MS for 10 years or less, and have not been helped by available disease-modifying therapies.

“Highly inflammatory” means that there are significant signs of disease activity, made evident by relapses and relatively rapid worsening of symptoms and disability.

[Seasha]

Hey Jerry,

According to https://www.the-scientist.com/news-o...bruptly--66401
the reason for the center’s closure is that its chief, Richard Burt, will be taking a research sabbatical to teach the HSCT protocol he’s developed to other clinics across the US and writing a book requested by a textbook publishing company, he tells The Scientist.

During his upcoming research sabbatical, he plans on working with universities and clinics across the country to make the HSCT protocol he’s developed more widely available.

And in his own words, “This is in my assessment . . . the best way to help the world, and humanity, and help patients to move this forward, to get the treatment more widely around the world,” he says.

[dm0329]

Thanks for sharing this information!

[Jenzy27]

There is Mexico HSCT for MS & Autoimmune Diseases FB group. I've been watching Dr Burts trial for 7 years.
A few clinics in US are doing it now (with a harsher myeloblative approach). Colorado is accepting patients off trial recently but they have pretty narrow window of acceptance.

I'm going to Mexico in March. They will treat most anyone.