Shelley Swisher Randolph has a few things she wants to do when her health improves. Zip lining and whitewater rafting top the list.
The 45-year-old mother of two has multiple sclerosis. She's one of two West Virginia women who traveled recently to Puebla, Mexico, for a controversial month-long treatment they hope will stop the progression of their disease.
"I want it even if some of the symptoms go away," Randolph, of West Union, said before she left for the treatment at Clinic Ruiz. "As long as it keeps me out of a wheelchair, it's worth it to me."
Cindy Winters, 61, of Winfield, also went to Mexico for the procedure. Both women returned earlier this month.
Winters was diagnosed with MS at age 35.
"It didn't bother me at all until about 50," she said of her illness. "I didn't even tell people. No one knew I had it."
When she was younger, she ran the Charleston Distance Run. Now she uses a scooter to get around.
The stem cell treatment has not been approved by the U.S. Food and Drug Administration, and doctors say it's risky. The treatment is called autologous hematopoietic (blood cell-producing) stem cell transplantation - or HSCT.
According to the National Multiple Sclerosis Society, HSCT is used in attempts to "reboot" the immune system, which is thought to attack the brain and spinal cord in MS patients. The procedure involves taking stem cells from a person's body and storing them while the patient undergoes chemotherapy or radiation to wipe out their immune system. Then the stem cells are reintroduced to the person's body by infusion. They migrate to the bone marrow and repopulate the body with stem cells. The goal is that, after the treatment, the person's immune system no longer attacks the brain and the person has a new immune system.
Studies about the treatment are being done. Randolph and Winters have been told that the soonest the FDA might approve such a treatment is 2022. They weren't willing to wait that long.
"If it was FDA-approved, I could have gone to Morgantown and not Mexico," Randolph said.
The treatment comes with a hefty price tag that their health insurance plans won't cover. While the prices vary, the facility Randolph and Winters went to cost the families $54,500 each. The cost of the treatment did not include airfare, but it did include food and lodging in an apartment, where they stayed for a month during the treatment. Randolph did a fundraiser and borrowed the rest of the money. Winters used her savings.
"What's my choice?" said Randolph, a retired adult education teacher. "I can't take it with me, and I'm not enjoying it."
Dr. Paul Ferguson, a neurologist and chairman of the department of neurology at Marshall University, is skeptical of the procedure. He said the procedure hasn't been studied enough.
"My formal opinion on the matter is that it has not been studied to a rigorous degree in the U.S., and we don't have a standard method in which to give it," Ferguson said. "It's not standard in its administration."
Ferguson works at Marshall's MS center, where 500 MS patients from Kentucky, Ohio and West Virginia are treated.
Ferguson said there's no way of knowing what patients are actually being treated with or how the doctors are monitoring the efficiency of the treatment. He also says the treatment isn't always benign. He points to a Canadian study published last month that found one of the 24 patients studied died of direct complications relating to the procedure.
"I don't advise that people do this until we have better science," Ferguson said.
Randolph and Winters brush off skepticism about the procedure, though.
"We know lots about it," Winters said. "I've followed it for six years. It has been done successfully internationally for more than ten years."
While time will tell if the women's conditions improve, Randolph said she had already seen improvements in her bladder just a week back from her trip.
"We're just a little behind the times in the United States," she said. "[U.S. doctors] think I'm going to come home in a pine box. I didn't come home in a pine box."
Reach Lori Kersey at Lori.Kersey@wvgazettemail.com, 304-348-1240 or follow @LoriKerseyWV on Twitter.