Carol Clark of Durango realized her immune system was attacking her body in 2000. This year, she ditched it and got a new one.
Clark, owner of Union Social House in Durango, is one of at least 3,000 multiple sclerosis patients worldwide who have undergone a stem cell transplantation to try to treat the disease. For Clark, getting the treatment involved $65,000, a trip to Mexico and a “roller coaster” that she wasn’t sure she’d survive.
“When my business opened up ... it was visible that I was having a hard time walking, and it was getting progressively worse,” Clark said. “That was the trigger. I decided I didn’t want to be in a wheelchair.”
There are about 2.8 million people worldwide who have MS, according to the 2020 Atlas of MS led by the Multiple Sclerosis International Federation. Of those, about 914,000 patients lived in the U.S.
Typically, immune cells, like B cells, start out as stem cells in bone marrow and perform different defense functions for the body.
But with MS, some immune cells find their way into the central nervous system. Instead of protecting the system against bacteria and viruses, the cells start attacking it – specifically myelin, a fatty insulation around nerve cells.
Internally, communications within the brain, and between the central nervous system and the body, begin breaking down.
Externally, people can feel fatigue or have problems with balance. They may experience numbness, tingling, muscle stiffness, weakness, difficulty walking or other symptoms.
When Clark was diagnosed, her most noticeable symptom was numbness in her feet, she said.
Like many MS patients, Clark tried various treatments: daily injections for years at a time, natural therapies, monthly infusions.
In the meantime, Clark started Union Social House and Toast, a mobile bar. She was raising her son and spending time with goats, chickens, ducks, horses and other animals on her small ranchette east of Durango.
“I get tons of joy from that,” she said. “It’s really intense to be always thinking about doctors visits. It’s just nice to have a quacky duck around you.”
But by 2019, she was stumbling as she walked, and she knew her disease progression would eventually put her in a wheelchair.
Clark began researching a stem cell treatment and talking to other local community members with MS. One of her friends, Brittny Squires of Blanco, New Mexico, wanted the treatment, too.
“The research says the sooner you do it, the better it is for you,” Clark said. “I’m 21 years in, but Brittny is seven years in. She’d have better luck than me.”
But the treatment, called hematopoietic stem cell transplantation, is still being researched and can be hard to receive in the United States.
The medications and procedures used in HSCT are already approved by the Food and Drug Administration, but the treatment is still not widely accepted or used as professionals watch for more well-controlled clinical studies of HSCT therapy, according to the National Multiple Sclerosis Society.
“HSCT has been done in more than 3,000 MS patients worldwide; it should not be considered experimental,” said Guillermo J. Ruiz Arguelles, director general of the Centro de Hematología y Medicina Interna in Puebla, Mexico. “HSCT is nowadays the best therapeutic option for persons with MS.”
The center’s Clinica RUIZ has conducted HSCT therapy since 1993, he said.
The treatment is also pricey. At the clinic, it costs at least $60,000.
But for Squires and Clark, it was the best option.
Squires went first. By July 2020, she launched a community fundraiser to help raise $60,000 for the treatment. By January, in the midst of the COVID-19 pandemic, she was in Mexico.
“It was definitely scary, but I figured I had a bigger chance of dying driving my car than getting this potentially lifesaving treatment, so why not try it,” Squires said
In February, Clark started her own fundraiser, raising $65,000 within a month. By April, she was in Puebla seeking treatment from Ruiz Arguelles.
“She (Squires) dove in and did it. I talked about it and talked about it, and she pulled the trigger,” Clark said. “I was like OK, now I have to go because I told her I was going to do it.”
HSCT therapy is essentially an “Alt-Ctrl-Del of the immune system,” said Ruiz Arguelles, director of research at Clinica RUIZ, in an email to The Durango Herald.
The treatment involves collecting a few adult stem cells found in bone marrow and blood, called hematopoietic stem cells, and storing them away.
Then, the immune system is crushed using chemotherapy drugs. Finally, the stored stem cells are reintroduced to the body where they can replicate and reconstitute the immune system, according to the National Multiple Sclerosis Society.
The goal: To reboot the immune system so it stops attacking the central nervous system, Ruiz Arguelles said.
The process makes you sick, and the pain is intense, both Clark and Squires said.
“My personal feeling, I thought I was going to die because it was really, really hard,” said Clark, who experienced multiple fevers and had to have a blood transfusion during the treatment. “There were moments like, ‘OK, this is it, I’m cashing in my chips.’ You’re just in the hands of other people.”
Each spent 30 days living in an apartment with food and a caretaker, both provided by Clinica RUIZ. There were 10 patients from around the world receiving the treatment in each group, called “stemmy brothers and sisters” because they got new immune systems at the same time, Clark said.
“A port in your chest takes your blood out of your body, spins it through a centrifuge and puts it back in. The centrifuge takes out the stem cells,” Squires said. “At that point, your body hopefully creates a new immune system that doesn’t attack you.”
It takes at least six months for the body to rebuild its immune system, and even longer to know for sure if the treatment worked.
As of September, Clinica RUIZ has treated 1,099 MS patients, 41% of whom came from the U.S. About 80% had a good response with either improved or stabilized symptoms. The clinic’s mortality rate is 0.18%, Ruiz Arguelles said.
“I don’t know that it’s worked, but without hesitation, for us, what else are you going to do?” Squires said. “I have two little kids. The options are to get worse or to do this and try to get better.”
Both still have bad days where their bodies are worn out by stem cell treatment. After years of seeking treatment for the disease, it was time to take control of it, they said.
“Somebody said to me: ‘I have MS, but MS does not have me,’” Clark said. “That’s a really important thing for anybody with a medical issue. ... MS is not who I am. I have to work with it and deal with it, but I don’t like it to stop me.”