By Anna Pulley
By Erin Sherbert
By Chris Roberts
By Erin Sherbert
By Rachel Swan
By Joe Eskenazi
By Erin Sherbert
By Erin Sherbert
From the standpoint of a research agency receiving public tax dollars, there is a downside to this kind of work: It makes no promises. So-called basic research into the science of stem cells involves the steady accrual of knowledge, much of which may never make its way beyond the syllabus of an advanced biology course. Whatever the voters who supported Prop. 71 think of the use of their money to support adult stem-cell cures for relatively pedestrian ailments, they would almost surely be angered if the ballot initiative's billions of dollars have bought, after a decade, only a sheaf of much-lauded studies in the journal Cell.
Even angrier, no doubt, would be the people who suffer from the diseases stem cells might one day cure. Their voices, more than any others, persuaded a majority of the state electorate to support Prop. 71. Today, those voices speak with decisiveness about the controversies surrounding the pace of research.
Roman Reed is a 34-year-old Fremont resident who suffered a devastating spinal injury on Sept. 10, 1994, while playing football for Chabot College in Hayward. In the aftermath of the accident, he was incapable of movement, except to shrug his shoulders; today, he is still paralyzed from the chest down. Reed evinces an admirably sunny outlook on life, but harbors no illusions about what he's missing. He has two sons, and his wife is eight months pregnant with their daughter. Coaching his boys' sports teams, he said, would be a lot easier with the use of his legs. "I would be right there next to [my sons] doing everything alongside [them], if I could," he said. "I would love to be playing with my children, picking my baby up and holding her high."
While Reed lacks the name recognition of stem cells' celebrity advocates, his case is well known in California among those at the intersection of politics and science. Prior to Prop. 71, the state law bearing his name marked an early effort to fund embryonic-stem-cell research; both he and his father, Don Reed, continue to be active in advocacy efforts. Reed says he would eagerly participate in a clinical trial involving stem-cell therapies, provided he had faith in the caliber of the doctors and researchers.
"Obviously, my goal is always translational," Reed says, using the doctorly term for research that translates science into medical therapies. Of the safety question, he says, "If you're with the right doctors, you're going to be okay." He says he has no objections to the idea of less severe diseases being first in line: "I'm against people suffering. If we have to start with low-lying fruits first, that's fine with me."
Implicit in Reed's statement, of course, is the notion that there are fruits higher on the tree. Since 2004, there has been no shortage of dissecting and temporizing over the promises of the Prop. 71 campaign by both the initiative's supporters and its opponents. A lifetime could be lost parsing the public statements of such stem-cell advocates as actor Michael J. Fox and former first lady Nancy Reagan in search of false promises. (Fox is a Parkinson's sufferer; Reagan said stem-cell cures could have helped her husband, who had Alzheimer's.) But it is difficult to deny that Californians were left with the overwhelming impression, despite cursory efforts to leaven Prop. 71 campaign materials with caution about the field's uncertainty, that stem-cell research would have a direct impact on many of humans' intractable diseases.
This was not simply due to overheated TV commercials. The introductory text of the ballot initiative read, in part, "Millions of children and adults suffer from devastating diseases or injuries that are currently incurable, including cancer, diabetes, heart disease, Alzheimer's, Parkinson's, spinal cord injuries, blindness, Lou Gehrig's disease, HIV/AIDS, mental health disorders, multiple sclerosis, Huntington's disease, and more than 70 other diseases and injuries. ... The cure and treatment of these diseases can potentially be accomplished through the use of new regenerative medical therapies including a special type of human cells, called stem cells. These life-saving medical breakthroughs can only happen if adequate funding is made available."
The inability of science to deliver on the expectations raised by the initiative, despite such a major infusion of cash from state taxpayers, has left some patients openly exasperated. Davis Brown is a 74-year-old Santa Rosa resident who was diagnosed with Parkinson's in 1997. He takes pills every three to four hours to avoid uncontrollable body contortions — anything from a slight tremor to bouts of full-force kicking. To manage his illness, he has had electric wires implanted inside his brain that administer a therapy known as deep brain stimulation. The wires are connected to a battery-operated controller implanted under his collarbone.
Brown knows all about stem-cell research. He knows about the promise it offers him and the 1.5 million other Americans who suffer from Parkinson's: that embryonic stem cells might be able to generate tissue in their nervous systems to replace that which was corrupted by the disease. But after more than a decade of hype, he's tired of waiting.
"I think we wish that they had found the cure yesterday or the day before," Brown says. "It's really hard after 12 years of being told, 'Well, if we get enough financing, we'll be able to have a cure in five years.' You don't know what is real and what is wishful at this point."