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SELLING SCIENTIFIC PROMISE

A desperate injection of stem cells and hope

February 20, 2005|Alan Zarembo | Times Staff Writer

Vinings, Ga. — Alone at his computer, drool sliding down his chin, Tom Hill searched the Internet for anything that could save him.

His 55-year-old body was gradually shutting down. His muscles twitched uncontrollably. He could no longer talk, so he scribbled notes to communicate with his wife, Valerie.

Seven months earlier, he had been diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease -- an incurable deterioration of the nervous system that spares the cognitive parts of the brain, leaving its victims sharply aware as they slowly die.

The doctors told him there was no way to reverse the disease -- no drugs, no surgeries, no other therapies.

Tom refused to listen.

He had been a successful real estate developer in Atlanta, a hard charger who always got things done his way.

Now, he spent most of his time in a makeshift study above the garage, searching hour after hour.

Valerie could hear Tom's muffled movements. She rarely interrupted him. After nearly 29 years of marriage, it pained her to see him like this.

She knew there was little hope, but there was no point in arguing. She threw herself into the final preparations for their daughter's wedding and left Tom alone to search.

In the spring of 2003, he found www.biomark-intl.com.

BioMark International offered a stem cell injection for a variety of illnesses, including Parkinson's disease, muscular dystrophy, depression and ALS.

"All ALS research now cites the promise of stem cells as the only answer," the website said.

Tom had been reading about stem cells for months and knew them to be the next frontier of medicine, the primordial cells that could become unblemished tissue of any type. He was convinced they could replace the deteriorating nerve cells in his body.

He pored over BioMark's material, dozens of pages of patient testimonials, scientific references and news reports on the vast promise of stem cells.

Could this be his chance to be reborn?

Valerie could hear her husband's printer churning out page after page.

"It is worth a try," he scrawled in the margin of one printout.

ENTREPRENEURS ON SCIENCE'S FRONTIER

Tom Hill was just the type of patient BioMark was looking for.

The company was launched in the summer of 2002, less than a year before Tom found its website. It began small, in a rented condominium shared by its founders, Laura Brown and Steve van Rooyen, just a few miles from Tom's house.

At first, the company survived patient to patient, each paying as much as $21,000 per treatment.

Word was spreading. It was a good time for a stem cell business.

The once exotic science was in the news almost daily. In August 2001, President Bush allotted federal funds for stem cell research but said they could not be spent on the study and development of new lines of cells from human embryos. It was a compromise to address the concerns of religious conservatives and others who opposed any destruction of human embryos.

The restrictions came under attack from high-profile figures, including former First Lady Nancy Reagan and actor Christopher Reeve, fomenting a national debate that turned "stem cell" into a household term.

Reports of each new scientific advance circulated rapidly -- in the media and on Internet message boards for people with incurable diseases. Stem cell clinics began popping up in China, Ukraine, Barbados and other places.

Brown and Van Rooyen built their business on the idea that science had already proved the therapeutic power of stem cells. BioMark was simply making it available to the world.

The company had a scientific advisory board, a professional-looking website and doctors to administer the therapy in Atlanta.

"When something this powerful, this beautiful, is laid in your hands, in your path, you give everything you have to it," Brown said in an interview with The Times last fall.

At least 220 patients had received BioMark injections, she said.

The therapy, as advertised, was simple: an injection of 1.5 million stem cells in the abdomen. Everybody got the same type of cells, regardless of their disease.

"Once in the body, cells migrate to the site of the disease and begin producing the needed cells," explained a BioMark information packet.

BioMark cells, Brown told patients, were free from the "right-to-life issues" slowing the development of stem cell cures in the U.S. The cells did not come from embryos, but from blood harvested from umbilical cords after childbirth.

One BioMark brochure carried a disclaimer that the treatment was not approved by the Food and Drug Administration.

But some patients saw that as a badge of honor. Someone was working to help them, even if that help ran afoul of the government.

It infuriated Tom that politics had trumped science.

"People suffering from disease are told they have to wait for their cures," he wrote in a letter to his U.S. senators. "Many of these patients do not have time to wait and a research delay could be a death sentence."

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