The Sunshine State has always been fertile ground for medical get-rich-quick schemes, and cord blood stem cell businesses that operate in much more questionable ways than Cryo-Cell have blossomed here for years. In 2002, a former model named Laura Brown and a slick South African named Steve van Rooyen started a cord blood company called Biomark in a condo in Miami Beach. The couple advertised that their supply of cord blood would cure a range of diseases and soon were filling orders from all over the country. Today, Biomark faces a 52-count indictment in Georgia for fraud, but the pair have fled to Europe, where they've started a company called Advanced Cell Therapeutics that treats patients with neurological conditions using cord blood, a practice that is illegal in the United States.
I learned to be wary of Florida's cord blood businesses the hard way. About the same time that Brown and van Rooyen were advertising cord blood as a cure-all, a different doctor was setting up a cord blood clinic in Atlanta stocked with blood from a private cord blood bank in Orlando. During the brief time it operated, the Institute of Cellular Medicine showed my family firsthand how easy it is to latch on to a cord blood dream.
In the spring of 2002, my father seemed to have a cold he couldn't shake. His rich voice had become rough and scratchy, but his normal workaholic schedule as a government lawyer had kept him too busy to worry much about a persistent sore throat.
Then he was diagnosed with ALS Lou Gehrig's disease. His failing voice, we were told, was the first sign of the full-body paralysis that would overtake him, whittling his limbs down to twigs and eventually freezing his lungs. Because the nerve cells controlling his throat muscles were the first to die, doctors told us he had a variation of the disease that would progress quickly.
There is no cure for ALS, a disease that causes the body's motor nerve cells to die inexplicably. As we frantically searched for information and hope, however, it became clear that stem cells would one day be the answer.
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."