Faith in ‘Miracle Cures’ Is Fading in South Korea

When Hwang Mi Soon rose from her wheelchair and shuffled forward with the aid of a metal walker, her small steps were trumpeted around the world.

“Stem-Cell Gal’s Miracle Steps,” crowed the New York Post in November 2004, while a New Zealand newspaper proclaimed, “Miracle Cure for Paralysis.”

The breathless pronouncements were accompanied by photographs of the 37-year-old South Korean woman who, just as in the cliche, was smiling through her tears.

Today there are only the tears.

Hwang is back in the wheelchair, where she has largely been since falling off a bridge as a teenager. She said the purported miracle treatment -- which entailed injecting umbilical stem cells into her damaged spine -- had only fleeting benefits that wore off after a few weeks. A second procedure in March 2005 caused an infection and left her in constant pain.

“I was like an animal they used for testing,” a bitter Hwang said.

The procedure on Hwang had nothing to do with cloning but took place in the giddy atmosphere that followed purported cloning breakthroughs.

Over the last two years, a collective euphoria pervaded South Korea over stem cells. The too-good-to-be-true claims by scientist Hwang Woo Suk of producing cloned stem cells turned the international spotlight on South Korea and spawned a boom in all kinds of other biotechnology ventures. Dozens of companies offering everything from cancer treatments to anti-aging potions raised money on the over-the-counter stock market.

“The Korean government made biotechnology a kind of national mission,” said Han Jae Gap, an investigator with South Korea’s National Assembly.

More than $1.3 billion was earmarked by the South Korean government to make the country an international contender in biotechnology research. Regulations were eased in mid-2004 to allow experimental procedures with stem cells to be performed on what were loosely defined as “emergency cases.”

About 150 such procedures have been carried out since then. Dozens of biotech companies raised money on the stock market. Patients flew to Seoul from Europe and the United States to undergo stem cell treatments that were untested and, in some cases, illegal in their own countries.

But in the wake of the disclosures about Hwang Woo Suk, the bubble has burst.

With much of the human cloning research proving to have been fabricated, other purported achievements in biotechnology are coming under scrutiny. A three-judge Seoul district court panel in December ruled in favor of 10 patients who said they were misled into undergoing expensive and ineffective stem cell treatments for chronic liver ailments.

“They were telling us about one patient who was in a coma and then after the procedure she was climbing Mt. Halla,” said Choi Mi Ae, a 54-year-old liver patient, referring to the most famous peak on Cheju, an island off the southern coast. Choi said she was so convinced by claims of a cure that she almost removed her name from a waiting list for a liver transplant.

“If I had done that, I wouldn’t be alive today,” she said. “There was no effect from the procedure, nothing at all. I was lucky that six months later I was able to get a new liver.”

The court awarded Choi a refund of half the $40,000 she spent on the treatment.

The verdict against the Halla Hospital on Cheju and a private company, Histostem, is being appealed. Histostem, which is based in Seoul, said Choi and the other patients knowingly chose a highly experimental treatment at their own risk.

“Stem cell products are not conventional medical drugs,” the company said in a statement. “It was impossible for Histostem and the medical institution involved in the therapy to guarantee complete recovery.”

Histostem was also involved in the surgery for Hwang Mi Soon, the subject of all the publicity about the “miracle cure.” The firm acknowledged the complications in her second operation but said the company was not to blame because it only supplied the stem cells.

Jeong Yeong Seon, a neurosurgeon at Bundang Cha Hospital who is now Hwang’s doctor, said the process of injecting stem cells into his patient’s spine probably relieved some of the pressure temporarily but did not lead to meaningful improvement.

“The problem in Korea is that these therapeutic tests were conducted as much for public relations as for the patients,” Jeong said. “There should have been more clinical testing on animals before they tried these procedures on people.”

By the time Hwang Mi Soon decided to try stem cell therapy in 2004, she had been paralyzed for two decades, making the prognosis for a cure unlikely. But with nothing left to lose, Hwang figured she would try something experimental. The procedure involved injecting stem cells that had been extracted from umbilical cord blood into the site of her spinal injury.

Hwang said she was speaking out about her case, albeit reluctantly, so that others would not make the same mistakes that she did.

“I don’t want to disgrace Korea’s image, which has already fallen because of the [cloning] case, but at the same time, I don’t want there to be another victim,” she said.

At least one other person was sufficiently inspired by Hwang’s case to come all the way to South Korea from Leesburg, Va.

Michelle Farrar, 36, was paralyzed after she fell asleep at the wheel driving home from a birthday party in 2003. Last year, a relative gave her a newspaper clipping about the supposed success of Hwang’s treatment, according to a website that Farrar’s family set up to help her raise the tens of thousands of dollars needed to pay for the operation.

“This was the first-ever procedure that had been successful at repairing damage to a spinal cord,” Farrar wrote in capital letters on the website. Upon reading the article, she recalled, “at this point I was almost afraid to ask aloud, ‘Could it be possible that I could walk again?’ ”

“I know for sure that I could not move any part of my lower extremities before the stem cells. My hips seem to move more freely as well,” she wrote in an e-mail to The Times. “I am trying to stand up every day.”

Stem cells are undifferentiated cells that are extracted from umbilical cords, bone marrow or embryos. They are believed to hold great promise for treating paralysis and otherwise incurable diseases because they can help regenerate damaged tissue. Although some treatments are by now well accepted, such as the use of bone marrow stem cells to treat leukemia, others remain highly experimental.

Jim Pitts, a 52-year-old Colorado resident with a congenital form of cirrhosis, had been told by leading experts that previous attempts to treat cirrhosis with stem cells had failed. But, stuck on a long waiting list for a liver transplant, he too went to South Korea late last year for one of Histostem’s treatments.

He says he has seen some improvement but is not sure yet whether the stem cell procedure helped him.

Pitts, who financed the procedure by working as an editor and translator for Histostem for three months, said his only complaint was that the firm was asking patients to spend large sums of money for, in essence, participating in experiments.

“The bottom line is making money,” Pitts said. “I think it is too much to ask anybody to spend $100,000 or more for stem cell therapy that is still really a clinical trial.”

Others are more critical.

“They are selling desperate people a story that just one injection of stem cells will be like a magic pill to cure them,” said Lee Sang Ho, a biotechnology expert at Korea University in Seoul.

The South Korean Food and Drug Administration said it was conducting a review of the estimated 150 stem cell procedures that have been conducted since mid-2004, when the rules concerning “emergency treatment” were relaxed.

Jang Yong Uk, an official at the agency, says there are no plans to change the law because patients are still clamoring to try even the most experimental of treatments.

“These are people who are fighting for their lives and don’t have much other hope,” Jang said. “We are motivated out of humanitarian concern for them.”

Susan Howley, director of research for the Christopher Reeve Foundation, the late actor’s fund to support research into paralysis, says there is a need for clearer guidelines and standards internationally so that patients can make educated decisions before embarking on risky treatments.

“Everything about these treatments is anecdotal. You hear that so-and-so went somewhere and got this treatment and got better. Or that nothing happened or that there were complications and it got worse,” Howley said. “That’s why there is such a crying need for guidelines.”

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Jinna Park of The Times’ Seoul Bureau contributed to this report.