Medical Tourist

A Penn grad student seeks an experimental stem-cell treatment in China that he can't get here.

by Julia Harte

Neal Santos OPTIMISTIC: Abdel Rahman Ford hopes than an experimental Chinese stem-cell treatment will halt muscular dystrophy from further decimating his body if he can raise the $32,000 he needs to get it. His doctors aren't convinced.

[ sad stories ]

When he entered the University of Pennsylvania as a political science Ph.D. candidate five years ago, Abdel Rahman Ford felt fine. A bright future almost certainly lay ahead. Ford had a distinguished academic record and a law degree from Howard University. In 2006, Penn awarded him a prize for excellence in graduate student teaching — one of just 10 the Ivy League school gives out annually.

But by then, he wasn't feeling quite so well. His teaching duties became more difficult to perform; he found himself too weak to stand and speak for longer than a half-hour. He experienced hot flashes, uncontrollable sweats and swelling and numbness in his feet. He came down with regular bouts of pneumonia so severe that he had to stop teaching midway through one semester.

Ford had been diagnosed with muscular dystrophy in childhood, but says, "I never had any real complications until a few years ago, so I had just ignored it until then." Ford's frequent pneumonia had been the result of food getting into his lungs as his musculature deteriorated — he now receives all nutrients through a tube connected to his stomach. Walking became increasingly difficult, and his frame grew emaciated. As the disease shrank him from the inside, Ford says, covert discrimination ate away at him from the outside; one colleague told him that his increased weakness made him appear lazy. Doctors told him the condition was untreatable and would eventually kill him.

But Ford didn't give up. He researched his options on the Internet, and stumbled upon one that no one else had suggested — adult stem-cell therapy. Specifically, he found a clinic in China that had performed a handful of adult stem-cell therapies on patients suffering from muscular dystrophy, and had — in at least one case — made a noticeable difference.

His doctors weren't optimistic. His neurologist told him he was deluding himself: "She told me that it wouldn't hurt me, but that it wouldn't help me and I would be wasting my money. She said she knew some people who have tried it and it didn't work for them." Ford pressed on anyway. He sent his records to the stem-cell center at the Tiantan Puhua Hospital in Beijing, and was eventually approved to receive an injection of a special kind of cell called a mesenchymal cell, taken from donated umbilical cord blood. According to Maria Leybenson, who handles Tiantan Puhua's international patients, the center began working with mesenchymal cells two years ago: "We decided [Ford] might find the treatment beneficial."

Now, Ford is on a quest to raise the $32,000 treatment cost and round-trip airfare to Beijing. When he asked his health insurance provider, Aetna, if they'd cover the treatment, a representative directed him to policy statements on the company's Web site. But he couldn't find anything there about treating muscular dystrophy with stem cells. And Aetna's policies on stem-cell treatments for other degenerative diseases, such as multiple sclerosis, aren't promising. They deem the procedure "experimental and investigational" and thus ineligible for coverage. At this point, Ford says, "I have no reason to believe I will be covered."

If Ford successfully raises the money on his own, he'll be just one in a nationwide pool of "stem-cell tourists" — Americans who leave their homeland to seek adult stem-cell treatment that doctors are too skeptical, unwilling or (according to advocates) simply intimidated to perform here.

"When it comes to long-term, chronic, degenerative diseases, we don't really treat anything, we just sort of manage them," says Dr. Chris Centeno, a founder of the International Cellular Medicine Society (ICMS), and a physician who administers stem-cell treatments for orthopedic injuries at his clinic in Colorado. Yet, he says, these types of diseases affect millions of Americans, and adult stem-cell treatment "has the potential of actually allowing them to be cured, or partially cured, rather than just managed long-term by doctors throwing drugs at them."

Despite its promise, adult stem-cell treatment is practiced, furtively, by just a handful of doctors in the United States. "They're underground, if you will," Centeno says. "We're one of the few that has always put out there what we do. But the vast majority of clinics that are doing this are under the radar."

That's because the U.S. Food and Drug Administration claims the authority to regulate adult stem-cell treatment as a "biologic drug"— or a drug derived from a living source. Centeno and his group believe the therapy should be classified a "medical procedure" and regulated by state medical boards.

Most Americans know more about embryonic stem-cell treatment than adult stem-cell treatment. Embryonic stem cells only come from a very specific source — the developing embryo of a pre-fetal human. Adult stem cells are taken from an organ or tissue in a body that has finished embryonic development, then they are multiplied and finally injected into a dying group of cells to replenish them. According to the National Institutes of Health, research up to now indicates that embryonic stem cells are easier to multiply and can replace a greater diversity of dying cells in the body. (The NIH also points out that embryonic stem cells have been rejected by patients more often than their own adult stem cells.)

Although adult stem cells don't carry the moral complexities associated with embryonic stem cell research — in which the embryos are necessarily destroyed — this is still a developing science. Centeno, for instance, says that the most advanced research supports the use of adult stem cells taken from the patient's own blood — not stem cells taken from donor blood, which is the kind of treatment Ford is seeking in China. (According to Leybenson, cells from Ford's own body do not have the potential to help him at this point.)

But even the use of stem cells taken from a patient's body is not without legal complications. Centeno says that before he began offering stem-cell therapy to patients in 2007 he sought legal advice from an ex-FDA attorney. That attorney told Centeno that Congress had never given the agency the authority to regulate adult stem-cell procedures, so long as the cells came from the patient's body and were used as part of the practice of medicine and not in drug production. Yet soon after the FDA sent Centeno a letter asking a bunch of questions and declaring in bureaucratese that they might have regulatory authority over his work. The FDA never threatened Centeno with a specific penalty, however, or offered a rationale for their having authority over the treatments. In response to City Paper's questions, an agency spokesperson referred in an e-mail to a statute called the "Regulations to Control Communicable Diseases," which appears to only give the agency jurisdiction over stem cells transported across state lines. The FDA did not return repeated calls for follow-up comment.

In April, Centeno filed suit against the FDA in federal court in an attempt to get the agency to explain its position. The FDA asked the judge to dismiss the case. There has been no ruling by press time.

Neal Santos EXTREME MEASURES: Ford is fed through a tube.

Momentous changes hang in the balance. "If the FDA could somehow construe authority over the practice of medicine, it would mean that what we're doing here — and for that matter, what a lot of physicians do on a day-to-day basis — would have to go through FDA drug approval," which typically costs $35 million per new drug, and takes five to eight years, Centeno says. "Modern medicine would come to a screeching halt. The [FDA] has to clarify its approach to this. It can't just stick its head in the sand."

Of course, there's a risk in seeking any cutting-edge medical treatment. "Stem-cell tourism is a growing issue in the stem therapy area and there exist many companies offering untested and unproven (and often unsafe) treatments worldwide," Michael Rudnicki, a scientist at the University of Ottawa who has studied the effects of stem cells on muscular dystrophy patients, writes in an e-mail. "There is a reason why these companies do not operate in Western jurisdictions, where they would likely face criminal charges. However, these poor patients are truly desperate and are willing to try anything."

Is Ford about to become another patient snookered by snake-oil salesmen preying on desperation? After all, he's seeking a form of adult stem-cell therapy that even the ICMS doesn't sanction. "When I look at the whole picture, the China option may be an imperfect one," Ford says. "But from the perspective of someone who suffers with a life-threatening illness and who literally has no other alternatives, this is the best option. Simply put, the outcome from the therapy may in some ways be uncertain, but the outcome without the therapy is certain." So as long as there's even a glimmer of hope, Ford will give it a try.

If he does go to China for treatment, he can hope for "more strength, a little bit of regeneration, a halt or slowing of the disease and a little improvement in the quality of life," says Leybenson. But, "we do not in any way offer a cure."

(julia.harte@citypaper.net)