Paralysis Cure Worth Waiting For

Every time I turn around I seem to read about some paralyzed person who’s traveled to a far-flung country for a miracle treatment not available in the United States. “I can now wiggle a toe! I’m improving!” they exclaim.

Meanwhile, I stay put in my wheelchair, albeit restlessly, in Charleston. Having been paralyzed from the shoulders down since suffering a C3 contusion injury to my neck in 1996, you might ask what the heck I’m waiting for. Am I a masochist? Possibly. But have you ever read a follow-up story about long-term functional gains achieved by one of these treatments? If none come to mind, it’s not because you have a bad memory.

A recent article in Neurorehabilitation and Neural Repair offers a sobering explanation. The study examined the results of seven surgeries performed by Hongyun Huang, a doctor in Beijing who treats spinal cord injury patients with cells taken from the olfactory bulb (found inside the nose) of aborted fetuses. Previous anecdotal reports from some of the 600 patients that Dr. Hongyun Huang says he’s treated were positive, but had a twinge of irrational exuberance.

Now, the authors of one of only three papers attempting to quantify Huang’s results (none of them by Huang) say that “no clinically significant … improvements were found.”

In other words, some $20,000 plus traveling costs later, quadriplegics who shelled out for a procedure they likely could not afford regained no functional use of their arms, wrists, hands and fingers, and no paraplegics regained use of their lower body. (A report published in the journal Spinal Cord noted one quadriplegic demonstrated some minor functional gains, but nothing that significantly improved his quality of life.)

Did I mention that five of the seven patients discussed in the NNR review got bacterial meningitis as a result of the surgery? “Advanced bacterial meningitis can lead to brain damage, coma and death. Survivors can suffer long-term complications, including hearing loss, mental retardation, paralysis and seizures,” according to the Directors of Health Promotion and Education.

I have long been skeptical of offshore treatments promising magical results. Most reasonable people would be. But people facing a life confined to a wheelchair, or perhaps the end of their life, are, understandably, not always reasonable. I certainly have moments when I seriously contemplate signing up for Huang’s surgery — usually when I’m considering the toll my paralysis exacts on my parents, or the sheer frustration of being completely dependent on others. (Do you know how a paralyzed person goes to the bathroom? It’s a degrading and humiliating experience. “Bend over and smile!” takes on an even worse meaning.)

The Spinal Cord anecdote I mentioned showed the patient had some motor recovery by two ASIA levels, which are used to grade the severity of spinal cord injuries. For me, two levels of regained motor function — the maximum one could expect — would move my current level of motor function from the ability to shrug my shoulders to the ability to give the Handiman salute (Remember Damon Wayans’ handicapped superhero character on In Living Color?)

Here are some other reasons why I don’t buy a ticket to China: Receiving the treatment could exclude me from future clinical trials. Clinicians running studies have strict criteria regarding who they can include, so they typically want the purest patient they can find, i.e., one that is “normal,” so they can be sure any results they see are due specifically to their treatment. Having had fetal cells implanted in my spinal cord would not qualify as normal.

And what if something goes wrong? I don’t want to risk being permanently dependent on a ventilator again to breathe for me (I now need it only at night). Plus, I don’t have 20 grand lying around. Why put myself in debt for something that won’t make me independent?

But many injured people, particularly the newly injured, treat their predicament as a challenge to their machismo. In 2004, Texan Van Golden told the Guardian that although he’s against abortion, some good should come from all those aborted Chinese fetuses. “Everyone else offered only to help make me sufficient in that chair,” he said. “But the chair is not my destiny. It is not ordained.” He reports after the Huang procedure that he’s got feeling in his fingers he didn’t have before. Later he compares some of that regained feeling to needle sticks. Other patients have also reported that much of their newly acquired sensation is pain.

When I hear stories like that, which are far too common, I remember that waiting for the right treatment is not the same as giving up or letting paralysis win.

Why Huang continues to offer a procedure that doesn’t seem to do much good is a mystery. He apparently has good intentions. His father was partially paralyzed by a stroke when Huang was 17. In 1999, he came to the United States to study under Wise Young, a spinal cord injury expert and stem cell researcher at Rutgers University. Huang hoped to one day offer patients something no one gave his dad — hope.

Time magazine reported in 2004 that after Huang’s father became paralyzed following a stroke, “The doctors treated the teen with scorn when he asked for information. Says Huang: ‘I decided then that I would become a different kind of physician.'”

After his stint in the United States, he returned to China in 2000 and began treating patients in 2001. His home country’s more lenient regulations, as compared to those in the United States, allowed him to immediately use what he’d learned. He has since treated over 500 people suffering from spinal cord injuries, none of whom have gained full or substantial recovery.

“Any improvement is a bonus,” Huang told the Technology Review in 2005. Maybe. But if patients are disqualified from promising clinical trials after having undergone Huang’s treatment, or if they’re suffering more afterwards, maybe not. In that same story, Huang also cautioned that no one should expect a full cure as a result of his current procedure. I hope those considering this treatment listen carefully to the doctor’s words of wisdom.

By Steven Edwards – Wired News

Posted on April 24th, 2006 in General SCI and Human Interest.