By Michael E. Miller
By Allie Conti
By Keegan Hamilton and Francisco Alvarado
By Jake Rossen
By Allie Conti
By Kyle Swenson
By Chris Joseph
By Michael E. Miller
As my father began to have trouble breathing, my family made a pilgrimage to Johns Hopkins in Baltimore, the temple of cutting-edge stem cell science. The doctor who spoke with us, a man with the bedside manner of a coat rack, told us that my father would never live to see stem cell treatment.
But ALS groups and chatrooms were alive with rumors about doctors, somewhere, who were working with stem cells that could cure ALS, now. One name in particular kept appearing: Dr. Mitchell Ghen.
Ghen, an osteopath, was infusing umbilical cord blood into patients with ALS in Atlanta. Operating without permission or oversight from the FDA and without any evidence that the procedure would work, Ghen was offering the dying a stem cell miracle. The cost of the procedure was $25,000.
My parents didn't blink. Six months after my father's diagnosis, they flew down to Atlanta in January of 2003, where, over the course of several days, Dr. Ghen injected several bags of umbilical cord blood into my father's bloodstream. Now thin and silent, his voice entirely destroyed, my father sat quietly for days while the thick red liquid, collected from ten different babies by a private Florida cord blood bank called Cryobanks International, flowed into his veins.
A month later, FDA agents raided Ghen's Atlanta clinic and informed him that his operation violated federal regulations. Two months later, Cryobanks International stopped selling Ghen the cord blood, and the transfusions ceased.
My family lost track of Ghen after that. Only a month after the stem cell treatment, tests came back showing that my father's breath strength was disintegrating. His only means of communication was a keypad that slowly sounded out words in a robotic voice. One early morning in July, we awoke to find him sitting bolt-upright on the couch, his mouth hooked up to a breathing machine that made his chest continue to rise and fall, even though he was dead.
Two more of Ghen's patients had, like my father, watched their ALS follow its course unabated. The fates of the rest of the 43 patients he treated are said to have been varied, but today, three years later, there's no way to know what happened to them.
In February 2003, just about the time we realized his transfusion was ineffective, Cryo-Cell International, Florida's largest cord blood bank, opened a Mexican office in Guadalajara. Today, on the Cryo-Cell Mexico website, are several articles describing the promise of umbilical cord blood in Spanish. One article quotes an expert who says that "patients with the transplant can improve their innate capacities to heal and increase their immune response."
The doctor's name? Mitchell J. Ghen.
When I told Gerald Maass about my family's bad experience with Ghen, he didn't seem to know the name.
"You hear about people doing it in Tijuana and other places," he said. "That appears to be what attracts desperate people. 'Buyer Beware' applies to a lot of things."
Science and law have conspired in recent years to make it more difficult for operators like the Biomark duo or Mitchell Ghen to fleece the desperate. The FDA is keeping a closer watch on disreputable operators, for example. And scientists are learning that the uses of umbilical cord blood are more limited than previously believed.
Cryo-Cell, meanwhile, isn't waiting for that information to reach the masses. The company, with the help of Zafran, is now moving away from cord blood entirely. The webcast of Emily Simmons' birth in June, in fact, was the world debut of a new medical hope that Cryo-Cell expects will be even bigger than cord blood ever was: placental stem cells.
In 2005, scientists at the University of Pittsburgh discovered that some cells from the human placenta, another byproduct of birth, seem to act like embryonic stem cells. Since then, a number of companies have been racing to patent placental cell technology and corner the newest development in the stem cell market. One, a North Carolina company called Plureon, has patented something it calls "Plureon Placental stem cells" and has signed a contract giving Cryo-Cell exclusive access to collect them. Plureon scientists (the company has not made their names known) claim that they have cured diabetic mice using the cells, but the study, which will be peer-reviewed by Dr. Zafran, has yet to be published. Still, Plureon, Cryo-Cell, and Zafran planned the June webcast as the launch of an advertising campaign aimed at convincing parents to store their placentas with Cryo-Cell.
Standing near Rosa Simmons' sliced-open abdomen, Zafran narrates as several pairs of hands deliver a large red organ Rosa's placenta.
"Dr. Plunket and Kathy are going to put things back together," Zafran says to Rosa as he holds the placenta in a plastic bowl, "and I'm going to demonstrate the collection of the Plureon Placental stem cells, if I might."
With a camera following him, Zafran carries a plastic bowl to a corner of the operating room. As Emily squalls in the background, he addresses the camera.
"The placenta is a magical creation of nature," he says. "It is this area... from which we will obtain the Plureon Placental stem cells. This life-giving property, and life-preserving property, will be obtained and sent to the laboratory, and we will demonstrate that method."