By Laura Mecoy -- Bee Los Angeles Bureau
Copyright © The Sacramento Bee
Published 2:15 am PST Sunday, January 9, 2005

MALIBU - Anne Dumphy was dying and believed Malibu physician William C. Rader was her last hope for a cure.

But she didn't find a cure - just an improved immune system.

Her niece said Rader's Dominican Republic clinic charged Dumphy $30,000 for stem cell treatments that helped fight off colds but not the fatal disease that ended her life.

"Dr. Rader has a responsibility to tell people that is all they'll get," said Dumphy's niece, Regina Rear. "He is taking advantage of the most desperate of people."

Rader declined to comment, but his overseas operation is one of several outside the United States marketing and selling stem cell therapies using aborted fetuses, umbilical cord blood or a patient's own stem cells.

From the Ukraine to Tijuana - where another California doctor refers patients - these foreign clinics advertise varying claims of success, ranging from making the blind see to erasing the signs of aging.

Scientists say these stem cell entrepreneurs, which use the Internet and word of mouth to market their therapies, are selling desperately ill patients treatments that are costly, unproven and potentially risky.

"They have no scientific credibility. They don't even aspire to acquire scientific credibility," said Evan Snyder, a leading stem cell researcher.

Some patients said the treatments produced remarkable improvements in their health. Without independent verification, scientists say they don't know if the patients' health improved or the patients enjoyed a "placebo effect" that made them feel better.

U.S. regulators monitor the effectiveness of treatments in this country but said they can't vouch for the foreign therapies because they have no control over them.

Snyder and other supporters of California's newly created stem cell research program believe the program could help eliminate such "fringe science" by establishing clear-cut guidelines for state-funded scientific studies.

They expect implementation of Proposition 71, the stem cell initiative Californians approved Nov. 2, to make desperately ill patients and their families more aware of what constitutes a legitimate human trial.

"The field will advance, and it will become very clear who are the legitimate scientists and who are not," Snyder said.

In the meantime, Rader and Mission Viejo osteopath David Steenblock appear to be the only California physicians marketing foreign stem cell treatments.

Steenblock, who's been sanctioned for past medical practices, lists stem cell therapy as one of several on his Web site.

He said he sees patients before and after another doctor provides injections and transfusions of umbilical cord blood stem cells in Tijuana.

Steenblock said he's documenting the results and found that about a third of the cerebral palsy symptoms disappeared in 10 patients he has examined.

Rader, a psychiatrist who previously ran eating-disorder clinics, advertises widely on the Internet, promising "remarkable physical and psychological improvements" through stem cell treatments at his Medra Inc. clinic.

Snyder said he has offered to verify Rader's claims by testing and evaluating Rader's stem cells, but that Rader has refused.

Dr. Alexander Smikodub, director of Ukraine's EmCell stem cell treatment center, said he also tried to work with Rader. He said Rader trained at EmCell but never followed through with promises to invest in the clinic.

Rader advertises embryonic stem cell injections and transfusions using cells from aborted fetuses - the same process EmCell says it uses.

But their definition of embryonic stem cells differs from the one used in California's and the National Institutes of Health's stem cell funding programs.

Those programs define embryonic stem cells as cells that come from days-old embryos created at fertility clinics. These so-called master cells can transform themselves into any cell in the human body, leading to claims that embryonic stem cell research could produce treatments and cures for about 70 diseases.

Smikodub said the fetal stem cells he uses have the same transformational abilities. Based on studies of its patients, EmCell said the fetal cell transfusions have lowered diabetic patients' blood sugar readings and improved vision in those losing their eyesight.

It claims to have improved immune systems in AIDS and HIV patients and to have given a greater range of motion to the limbs of patients with arthritis, multiple sclerosis and amyotrophic lateral sclerosis.

"Patients ... continue living because they are treated with stem cells, and they want and decide to come again and again," Smikodub said.

But the Amyotrophic Lateral Sclerosis Therapy Development Foundation, an organization representing those with ALS, also called Lou Gehrig's disease, investigated EmCell and found no "verifiable reports of improvement."

Jamie Heywood, the foundation's director, said he knows at least 40 ALS patients who have undergone stem cell treatments at various clinics, and none has seen a "radical change."

Snyder, the San Diego stem cell researcher, said he's also known families who "hocked everything" to pay for foreign stem cell treatments and were disappointed.

He said patients should never have to pay because legitimate experiments usually are financed by someone else.

Lucie Bruijn, the ALS Association's scientific director, also said she can't recommend embryonic stem cell treatments marketed abroad because none appears to be conducted with the proper controls and long-term studies needed to determine its effectiveness.

Steenblock, who refers patients to Tijuana for stem cell therapy, said he's trying to conduct that type of study and hopes to gather enough data to get approval of a clinical trial at a California hospital, possibly with Proposition 71 funds.

But Steenblock said he's battling the stigma of sanctions by California's Osteopathic Medical Board.

The board placed Steenblock on five years' probation and fined him $10,000 in 1994 for gross negligence and incompetence in the treatment of a teenager who subsequently died and in the colonoscopy of another patient.

Steenblock signed a stipulation agreeing to the charges but said he believed he was admitting only poor record-keeping.

He said he settled the case to avoid further action by prosecutors he believed were biased against him.

Steenblock also came under the board's scrutiny in 1994 after a door blew off a decompression chamber he uses to treat stroke patients. Three people were injured.

A judge found no wrongdoing on Steenblock's part, but a jury determined three of his employees were providing physical therapy without a license.

"They are going out of their way to make me look bad," Steenblock said.

Linda Bergmann, the board's executive director, said the board has treated Steenblock the same as other doctors it investigates.

She said the board is aware of Steenblock's role in the Tijuana stem cell treatments but wouldn't say whether it is investigating him for that.

Despite Steenblock's disputes with the state, at least one of his stem cell patients calls Steenblock one of the best doctors he's ever had and says stem cell treatments helped him.

Jim Haverlock, a 65-year-old furniture dealer who's had multiple sclerosis for 21 years, said Steenblock's staff arranged two stem cell treatments for him in Tijuana in the past two years.

The injections and transfusions of umbilical cord blood stem cells made him feel so much better that he said he's planning to undergo a third round of treatments later this month.

Scientists said measuring improvement in multiple sclerosis patients is difficult because the symptoms can vary widely from one day to the next.

But Haverlock is convinced the stem cells improved his balance, speech and immune system.

He said his only problem was a bad reaction to an experimental medication Steenblock prescribed in April to help the stem cells work.

"I almost died from it," Haverlock said. "I know some people may have wanted to sue him. But that doesn't change anything. He was doing it with the best of intentions."

Haverlock said he has tried several experimental treatments and considers himself a "pioneer" exploring the boundaries of science in the hope of finding cures.

Juanita Reaves, a 48-year-old Benicia resident, said she also thinks she should play a role in testing new treatments for ALS, the incurable disease that is slowly robbing her of her speech and ability to walk.

She spent five months in Argentina and $115,000 for experimental treatments with her own stem cells and T-cell vaccinations last year.

After a break for Christmas, she said she decided to halt the experiment because she'd seen little improvement, and she missed her family.

Even so, Reaves said she has "no regrets" and went into the experiment with "my eyes wide open. It wasn't someone taking advantage of me."

Rear, the niece of the ALS patient who received treatments at Rader's clinic, has her doubts.

"Dr. Rader, for Anne, was hope," Rear said. "Even though some of us in the family felt it was not the thing to do, no one was willing to take away her hope."

She said her aunt couldn't afford the treatments. Her relatives were financially strapped, too, because Dumphy and Dumphy's sister, Eileen Dumphy-Rear, were diagnosed with ALS within six weeks of one another.

Rear, Dumphy's niece and Dumphy-Rear's daughter, said both patients required expensive equipment, round-the-clock nursing care and a $70,000 home addition to accommodate them.

Dumphy's friends and relatives raised $38,000 for her two stem cell treatments and travel. Even after she'd spent that, Rear said the clinic's staff urged Dumphy to fly to Germany for additional therapy.

"By that point, she was just too sick to go, thank God," Rear said.

She said her aunt received no follow-up care from Rader or his associates after her treatments.

Dumphy died in June, about two years after her last stem cell transfusion.

Although Rear believes Rader did little to help her aunt, she still worries about dashing the hopes of other ALS patients who "have no hope."

When they seek her advice about Rader's treatments, she tells them to go to his clinic if they're independently wealthy and wish to spend their money that way. But if they're not wealthy, Rear said she urges them to "take that $30,000 and enjoy an awesome vacation while you still can."