‘Time Out’ for Bush, Maybe Death for Me : Transplants: Suffering Americans are begging him to allow fetal-tissue research.
The President has a decision before him that may decide whether millions of Americans are rescued by an advance of medical science or continue to suffer and die. He will decide whether to join Congress in lifting a ban on federal support for fetal tissue transplant research, or to veto Congress’ action. His decision may save, or condemn, my life.
In the past few years, scientists around the world have discovered transplanted fetal cells to be a potentially valuable source of rejuvenating material for a wide variety of debilitating conditions. They include Parkinson’s disease, deadly pediatric disorders, diabetes, spinal-cord injuries, epilepsy, Alzheimer’s and many more.
These transplants use the tissue that remains from abortions. On the unsubstantiated theory that the transplants would encourage more elective abortions, a small but vocal minority opposes any productive use of the remains. For that reason, four years ago, President Reagan imposed, and President Bush has maintained, a so-called moratorium on federal support for this research.
The Administration defends the ban by saying that it provides a “time out,” presumably allowing a breather during which the political controversy can calm down.
It is a clever choice of words; it sounds so innocuous, so harmless, so insignificant. Four years into the moratorium, with no end in sight, it is far from harmless.
In about the amount of time the moratorium has been in place, I have lived with a Parkinson’s diagnosis that has taken away my ability to run, hike, backpack and play the piano. Walking a short distance, even walking with a cane, has a grueling challenge. But the worst is yet to come. I now see signs that the basic physical skills necessary to conduct my daily life are starting to slip from me.
As I write this at my computer, my hand (my right hand, which more than a year ago took over all typing functions from my stiffening left) is starting to shake, to ache and stiffen. I saw the first slip in my handwriting last week, as I signed my name to a credit-card slip. Last month, I first noticed my tongue begin to slip in mid-sentence, forcing me to concentrate on forming my words for the first time.
I know where this leads. I know people who still carry a vital, vibrant intelligence inside, but it is blocked from the world by an external shell that no longer allows movement at will. Now they present a blank stare and a frozen body in a wheelchair. This is my future.
For the millions of Americans like me with incurable, progressive diseases, life is the equivalent of sand slipping steadily through an hourglass. Time is our enemy, and we have no time for a “time out.”
Eventually, inevitably, the research will succeed. Tiny steps forward are being taken by small, privately financed efforts in the United States and limited programs around the world. Someday, one of them will provide the necessary discovery that will save millions of American from further suffering. But it will come too late for the millions of Americans who need help now.
As my clock ticks, I have no luxury of patience. For now, I can still walk into a room, shake hands and talk with the leaders who control this policy. As I watch my limbs stiffen, my walk become more and more tortured, my speech begin to falter, though, I know that, in a few months or years, I may not. I know that soon my hope for salvation will dim, if medical science is stalled further. As each month passes with no action, it is safe to assume that I will join the millions of other Americans slipping further into disability, losing their jobs, losing their dreams, losing life itself.
So I wait for Bush’s decision. Someday the cure will come. But at the President’s pace, it will not be in my lifetime--my shortened, imprisoned life. His “time out” may, in effect, be my death sentence.
