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the Stem Cell Page time and ignorance are the enemies |
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Breaking the time barrier |
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April 25, 2006
I embarked upon my stem call journey in the same manner so many others have. It began with a family member – my younger brother, Tom. Tom and I are only 22 months apart. Growing up, we shared a room, roughhoused, competed in neighborhood sports and laughed together as we incessantly teased each other. As the older sibling I had the upper hand in most physical conflicts, but it was well known by everyone in the neighborhood that though we maintained that right of sibling pugilism, such domain was exclusively ours. Any outsider who dared to pick on my little brother would have to deal with me. In retrospect, I suppose that merely qualified us as typical brothers. Things changed, however, when we became adults.
At 27 Tom was diagnosed with Multiple Sclerosis. From this enemy I could provide my little brother no protection. Over the next quarter century I watched helplessly as MS ravaged his life, robbing him of his mobility, his speech, his cognitive skills, his memory and his independence. Now 53 years old, he’s wheelchair bound, requires 24/7 care and has begun experiencing random bouts of dementia caused by scarred brain tissue, a result of his MS.
In his younger days as a news reporter, research was Tom’s forte. He approached fact gathering about his illness with the same precision and depth as if he was on to a major news story. He learned that patients with his particular variety of MS had an anticipated lifespan of only 55 years so he had a vasectomy almost immediately after learning his diagnosis. Tom told me he didn’t want to leave behind any dependent children for whom he couldn’t properly care, and he didn’t want to burden children with the responsibility of caring for him. I’ll never forget that conversation in which he explained his rationale and, the good and gentle soul that he is, I’ve often thought about what a marvelous father he’d have been had he retained the opportunity that reasonably normal health would have afforded him.
There has been very little I could do to help Tom over the years, though I always admire and marvel at his spirit. How often he struggled to verbalize a joke just to make me smile. Whenever I thought life was throwing me a curve, I thought of Tom. Suddenly my problems, no matter how enormous they had seemed a moment earlier, immediately dissolved to miniscule. The thought of my brother’s deterioration was invariably followed by, “I have no problems.”
Eventually I heard about embryonic stem cells and how they could be grown into diseased tissue so that researchers could study how diseases developed. The relative magnitude this bears in solving the enigma of MS cannot be overstated. Scientists have long known what MS does, but they don’t know why. They’ve never been able to identify the root cause, the critical first step to finding a cure. Could stem cell research provide the answer?
Better still, it was demonstrated that embryonic stem cells could be coaxed into forming new, healthy cells to replace damaged cells. Any kind of cells. Perhaps the myelin cells destroyed by MS? Or the scarred brain tissue which resulted in Tom’s case? At long last, there’s genuine excitement in the medical community about what this could mean for Tom and the many like him. Finally, there’s a chance, genuine hope that he can regain his faculties, regain his speech and walk again. But despite that hope there’s still one major caveat, that monumental hurdle Tom must clear: He has to live long enough.
I do my best to pay close attention to the stem cell debate. I listened carefully as President Bush established our wholly inadequate embryonic stem cell policies. I’ve studied the sound bites of the embryonic stem cell opponents, the so-called “pro-life” faction. I’ve read everything I could find. I’ve spoken to doctors. I’ve written letters to politicians and letters to editors. But I still have much concern.
Living in Missouri is like straddling a border with each foot in a different world. In one world we have one of the nation’s foremost hubs of life sciences, biotech and medical research. Missouri is home to the world headquarters of agricultural giant Monsanto and just across the street the Donald Danforth Plant Science Center. There’s the Washington University School of Medicine - with its twenty or so laboratories engaged in stem cell research - and its association with Barnes-Jewish Hospital and the Siteman Cancer Center. The Stowers Institute, the second largest private medical research institution in the United States, is poised to invest in a new 660,000 square foot facility dedicated solely to stem cell research (though that project’s now suspended pending the outcome of the Missouri Stem Cell Research and Cures Initiative in November).
Add to that all those “ripple effect” enterprises and it manifests as quite the head of economic steam. In Missouri’s first congressional district, Congressman William Lacy Clay informs us that the life sciences industry in his district alone bears economic impact in the realm of thousands of jobs and billions of dollars. Statewide, the numbers escalate dramatically. According to the St. Louis Post Dispatch:
Already, the industry adds $23 billion to the state's economy and grows at an average annual rate of 6 to 10 percent. Missouri's more than 2,100 life science companies employ more than 183,000 people. Life science researchers attract more than $1 billion in federal grants every year.
Of course, then there’s that other Missouri world, the rural areas dominated by the religious right with their mere three issue, “anti” political agenda: Anti abortion, anti gun control and anti gay marriage. Pandering state representatives from these areas continue to push for criminalization of embryonic and SCNT research as they have for the last five years. For those of you old enough to remember Jack Lord in Hawaii Five-0, here’s their vision for a script of Missouri Five-0:
Are you a researcher engaged in embryonic or SCNT stem cell research? Book him, Dano: Stem Cell Felony 1!
Doctor, did you prescribe a treatment derived from embryonic or SCNT stem cells? Book him, Dano: Stem Cell Felony 1!
Are you the nurse or technician who dispensed that therapy? Book him, Dano: Stem Cell Felony 1!
Are you the patient who received treatment? Book him, Dano: Stem Cell Felony 1!
Are you the parent or guardian of a child you allowed to be cured that way? Book him, Dano: Stem Cell Felony 1!
In Missouri, the extreme right had come dangerously close to morphing that script into a reality show.
That effort to ban and criminalize embryonic and SCNT stem cell research has culminated in Missouri’s pending showdown. The Missouri Coalition for Lifesaving Cures was formed to propose a state constitutional amendment to ensure that researchers could continue to seek treatments and cures - and that patients would be guaranteed access to those treatments and cures - to the full extent of federal law. And the initiative goes a couple of steps further. It will ban and criminalize any attempt to clone a human to create a baby, and provide a mechanism for state oversight with guaranteed public access to that oversight information.
Much that comprises the Missouri initiative is the direct result of the leadership shown in California as well as the lessons inevitably learned from those who preceded us. As I’ve said many times, Missouri, and indeed much of the nation, owes its gratitude to our western colleagues who paved the way for the rest of us.
So I joined the Missouri Coalition for Lifesaving Cures. I volunteered to collect signatures on their petitions. I volunteered as a Coalition public speaker. I helped secure their first endorsement from a military related organization. I launched this web site dedicated to stem cell research advocacy. I tell you this not because I seek recognition but because I want to put all this in clear perspective: To my brother, Tom, none of that may matter one iota.
It’s certainly not because he’s an ingrate. To the contrary, Tom has always been a very appreciative individual. But my brother’s case is a microcosm of the crux of this issue, the very heart of the matter: While politicians debate, people’s lives are at stake. Tom is rapidly approaching that aforementioned statistical barrier of 55 years of age, scheduled to arrive in 2008. God willing, I believe he’ll beat the odds and live longer, but long enough for that cure to be found, tested and available? That takes time.
Time and ignorance are the most insidious of enemies. Joan Ruschman of Cincinnati summarized her battle with MS by explaining, “The clock’s ticking for me. It’s basically always a race against time.” Time never relents for our convenience and our only option to counteract it is to be relentless in our efforts to increase the velocity of seeking therapies and cures for the ill and injured – and just as relentless finding and creating funding to support the quest.
Ignorance, however, presents a different problem. I’ve often quipped that our attempts to “idiot-proof” the world are futile because the idiots mutate into new strains with ever increasing resistance to intelligence. Like the proverbial horse and water, you can lead the ignorant to information but you can’t make them learn, so I’ll cut to the chase.
Over time, most of us have come to accept the phrase “pro-life” as representing an anti-abortion position, but you’d best be prepared to duck if you deploy that characterization to veil an anti-stem cell research position in proximity to me.
Pro-life? Choosing to not attempt to save lives using cells slated for incineration - or those specifically created for treatment or cure - should never be characterized as “pro-life.” Doing so simply manifests as a verbalized incongruity; misdirection shrouded by political label.
Pro-life? The notion that humanity is better served by these frozen cells becoming trash instead of triumph, biohazard material rather than potential medical miracles is an offense to the infirmed. It must absolutely be rejected and overcome.
Pro-life? Excuse me, but what about Tom’s life? What about the lives that will be lost as you read this? And the lives that will be lost tomorrow? Next week? Next year?
Pro-life? Lloyd Levin of Chicago stated it very succinctly: Stem cell research is Pro-life for the living. Its high time our President and legislators stood up to the religious extremists, that “holier than thou” right wing that purports a cluster of cells cryogenically frozen in a petri dish - with no chance of ever becoming a baby - should have legal rights that supersede those of my brother’s life, or the lives of millions of other living patients.
Pro-life? Pardon me if I [dis]respectfully take exception. You who claim the label “pro-life” look my brother in the eye and tell him his rights as a patient – a living, breathing person among us – must be subordinated to those of cells in petri dishes. And I’ll be generously equitable in kind. I’ll look those cells in the petri dishes in the eye and tell them otherwise. Oh, sorry, I can’t do that. The cells in the petri dishes have no eyes – nor will they ever. But Tom has eyes, crying for want of a cure or at the very least the legal right of one to be pursued unfettered by ignorance or religious dogma.
Of course, the struggle between science and religious opposition to medical advancement is far from a novel phenomenon. It has a long and iniquitous history, even in our western civilization. Back in the 18th century, the Reverend Dr. Timothy Dwight IV, then president of Yale College, pronounced smallpox vaccination to be contrary to “God's will,” saying:
“If God had decreed from all eternity that a certain person should die of smallpox, it would be a frightful sin to avoid and annul that decree by the trick of vaccination.”
In 1772, a British theologian named Edward Massey published The Dangerous and Sinful Practice of Inoculation. Boston clergymen and devout physicians formed the Anti-vaccination Society, believing that "the law of God prohibits the practice." Many others of the era concurred that the practice was “unnatural and dangerous,” demanding that doctors who performed these procedures be placed on trial for attempted murder.
My, how far we’ve come! Or have we?
When our elected officials orate in legislative chambers that embryonic stem cell research constitutes “dismemberment of distinct human beings,” it’s clear we haven’t come far enough. For the record, my challenge to Mr. DeLay, who made that speech to the United States Congress, still stands: Produce a legitimate U.S. birth certificate which identifies the mother of a baby as “a Petri dish” and I’ll switch sides.
How far we’ve come may prove to be largely a matter of geography. England, Israel and other nations are moving more rapidly while we in the U.S. are struggling to keep pace. Zoom in on the map and you’ll find variations from state to state. Here in Missouri, we’ll know where we stand come November, though I must admit I have a very good feeling about this one.
The path has already been forged, indeed well lit, by our colleagues in California, and too many good people disagree that it’s “God’s will” for people like Tom to remain in wheelchairs. Rather, we view relentless and unfettered efforts to make him well again as “doing God’s work.”
So hang in there, little brother. Beat the odds, Tom, and live longer than those projections. Hope is here. And help is on the way.
- Jeff Eisen
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