Seeking unproven treatments in China

Western doctors say the treatments are risky.

BEIJING (AP) — They’re paralyzed from diving accidents and car crashes, disabled by Parkinson’s, or blind. With few options available at home in America, they search the Internet for experimental treatments — and often land on Web sites promoting stem cell treatments in China.

They mortgage their houses and their hometowns hold fundraisers as they scrape together the thousands of dollars needed for travel and the hope for a miracle cure.

Many medical tourists claim some success when they return home.

Jim Savage, a Houston man with paralysis from a spinal cord injury, says he can move his right arm. Penny Thomas of Hawaii says her Parkinson’s tremors are mostly gone. The parents of 6-year-old Rylea Barlett of Missouri, born with an optical defect, say she can see.

But documentation is mostly lacking, and Western doctors warn that patients are serving as guinea pigs in a country that isn’t doing the rigorous lab and human tests that are needed to prove a treatment is safe and effective.

Noting the lack of evidence, three Western doctors, undertook their own limited study. It involved seven patients with spinal cord injuries who chose to get fetal brain tissue injections at one hospital in China. The study reported “no clinically useful improvements” — even though most patients believed they were better. Five developed complications such as meningitis.

Experts in the West have theories about why some people think they’ve improved when the evidence is thin. Some are often getting intensive physical therapy, along with the mysterious injections; the placebo effect may also be a factor.

John Steeves, a professor at the University of British Columbia who heads an international group that monitors spinal cord treatments, has another theory. Some patients may be influenced by the money they paid and the help they got from those who donated or helped raise money.

He and other experts have written a booklet advising patients who are considering such treatments.

Western doctors discourage their patients from seeking such treatments. They note that it’s impossible to gauge the safety and effectiveness of the treatments, or even know what’s in the injections put into brains and spinal cords.

Patients and their families say they accept those risks. They simply don’t have time to wait for more conclusive evidence. For many, the trip to China is a journey of hope.

Many Chinese doctors don’t wait for results of rigorous testing before treating patients and they offer what they say are stem cell or other cell treatments to those willing to pay.

What is known about the procedures being performed comes from material on their Web sites or from patients who give detailed accounts of their visits. Little has been published in scientific journals for other doctors to scrutinize.

The use of stem cells for treatments isn’t new. For decades, doctors have been using adult stem cells from blood and bone marrow — and more recently from umbilical cord blood — to treat cancers of the blood like leukemia and lymphoma and blood diseases like sickle cell anemia.