May 17, 2004
My father is dying from an American political disease. In a nation divided evenly between red and blue states, governmental policies have long been distorted by the gravitational pull of the extremes of the two parties.
For President Bush, policies often have been shaped by his fundamentalist and conservative religious base. While controversial, many of these policies are largely symbolic, such as his unheeded call for an amendment to ban gay marriage. The president's policy opposing stem-cell research, however, presents a far more deadly concession — one that might secure votes, but at a prohibitive cost of human life.
Stem-cell research is back in the news after former first lady Nancy Reagan's call this month for Bush to drop his opposition to fully funded research. Former president Ronald Reagan has advanced Alzheimer's disease and may benefit from stem-cell research. More than 200 members of Congress (including nearly three dozen abortion-rights opponents) responded to the call and asked Bush to lift his extreme limitations on federal funding in some instances. Former presidents Gerald Ford, Jimmy Carter and Bill Clinton have also joined the chorus.
Such a change may come too late for my father. The immediate threat to him is an advanced-stage Parkinson's disease that is sapping his strength, reducing his mobility and robbing his mind. However, it is not Parkinson's, but politics, that has proved the greatest burden in our fight for his life.
In his self-described "compromise," Bush said stem cells (microscopic clusters of cells often discarded by hospitals) must be protected as potential human life. The White House recently reaffirmed that Bush would not allow research to "cross a fundamental moral line." Bush has yielded to groups such as the American Life League, which sees such research as a "deadly use of ... human beings who are currently in their embryonic stage of development."
The president has restricted federally funded researchers to using a small number of existing "stem-cell lines," created before Aug. 9, 2001. From the outset, the compromise was a bit odd, because if the microscopic cells are "human beings ... in their embryonic stage," Bush adopted the ultimate split-the-baby solution.
If they are embryonic humans, it should hardly matter whether they were created before or after August 2001. If Bush accepts that they are not human lives, as some abortion-rights opponents accept, then the restriction is a callous political decision at the potential cost of 130 million Americans with cancer, heart disease, diabetes, Parkinson's, Alzheimer's, multiple sclerosis and other diseases potentially treatable — even curable — by advances from stem-cell research.
At the time of his compromise, Bush said there was an ample pool of stem-cell lines for research demands. He insisted that there were about 70 such cell lines, even though many researchers immediately denounced that number as overstated. They have been proved correct. The National Institutes of Health reported last week that there are only 11.
Bush's policies have proved disastrous for American research that once led the world in this field. Vital federal stem-cell funding has been reduced to $17 million a year, forcing states to take the lead in funding research. (In comparison, the Senate has approved $50 million to build an indoor rain forest in Iowa.) The loss of federal support has forced some states to try to make up the difference despite crushing debts. Now, top researchers in the USA are moving abroad, where they can fully pursue their research, find breakthroughs and let European companies reap the profits.
In the end, however, the economics and the politics are matters for presidents to ponder. Most of us are left as the ultimate single-issue voters. My single issue has a name: Jack Turley.
An accomplished architect and one of a handful of students trained by the famed Ludwig Mies van der Rohe, he now struggles to maintain his dignity against a disease that first robs you of every ounce of dignity and only then takes your life.
As my father sits in Chicago, 400,000 spare embryos sit in freezers across the country. They could be used to radically speed up research in Parkinson's and other diseases, but because of the president's policies, these embryos are likely to be destroyed — a perverse result of protecting "embryonic humans" by discarding them.
Ultimately, every person can elect to accept or reject drugs based on this research. However, the effective bar on federally funded research imposes the president's religious views on all of us.
I have become blind to Iraq, environmental laws, civil liberties and taxes. I have the myopia that comes with desperation. I cannot see beyond a chair in Chicago where a man sits who once carried me on his shoulders and protected me against every danger.
Part of me resents that suddenly politicians are scrambling for a change
in policy because Ronald Reagan has Alzheimer's and needs help. My dad
is one of millions of towering historical figures known primarily to their
families. They didn't beat communism; they did something far more incredible
and important: They raised families. They now sit, like Dad, helplessly
monitoring not the progress but the politics of disease.
Copyright © 2004, USA Today