Originally created 07/11/01

Stem cell debate: The view from disease sufferers



WASHINGTON -- Adam Singer has fought diabetes for 23 years. Ron Heagy has spent two decades in a wheelchair because of a spinal cord injury.

Both men look to the day when science can cure them of their ailments. But the current debate over embryonic stem cell research divides them.

"It seems to me that it's an easy choice to make - take a shot at saving lives and making life easier for people," said Singer, a 41-year-old commercial real estate agent from Potomac, Md., near Washington.

"I never want to hear of anyone giving up an embryo so that I can get out of a wheelchair," said Heagy, a 39-year-old motivational speaker from Albany, Ore.

The moral questions over stem cell research are hardly easy for anyone.

At issue are embryonic master cells that can generate all the other tissues of the body. Scientists believe that if doctors could learn how to control stem cells, they possibly could cure diseases like Alzheimer's, diabetes or Parkinson's or even repair spinal cords.

Abortion opponents find it unacceptable because harvesting the stem cells requires the death of an embryo, which many regard as human life.

Since 1996, the government has banned federal funding of research that would harm, damage or destroy human embryos. But the Clinton administration decided in 1999 to allow federal money to pay for stem cell projects as long as the cells were extracted by researchers not receiving federal funds.

President Bush soon will decide whether to reverse the Clinton administration's compromise. Aides said he is hearing from scores of people with poignant stories like Singer's and Heagy's.

White House spokesman Ari Fleischer hailed stem cells as an area "where there is so much potential for health and for breakthroughs." At the same time, he declined several times Monday to state Bush's view on when human life begins. The White House later released a portion of a 1999 interview in which Bush said he believes life begins at conception.

"I can't tell anyone that they're wrong for how they feel on this issue," said Singer, a volunteer with the Juvenile Diabetes Research Foundation. The disease robbed him of the ability to open a jar of juice for his young sons. He knows the disease can kill him, so he hopes stem cell research will be cleared for federal funding and some day be used to cure him.

"It's a brutal little disease," he said.

Heagy, a quadriplegic who runs an Oregon camp for disabled youth, tells everyone - including Congress last year - that he opposes federal money for embryonic stem cell research even if that research means the eventual repair of his spinal cord, damaged in a surfing accident when he was a teen-ager.

"I sat there as a voice for the embryo," he said. "I've got my challenges. I'm not opposed to walking again. I'm just opposed to the process."

Scientists believe that embryonic stem cells, more flexible than those extracted from fully developed humans, could renew ailing organs or prevent ailments, once researchers study them enough to figure out what causes certain cells to become abnormal and cause maladies in the first place.

Joan Samuelson was a trial lawyer with a busy practice until Parkinson's disease hit in her 30s. The brain disorder caused her left hand to shake so badly in court that she'd sit on it to keep her tremors from influencing juries against her clients.

Samuelson, now 51, has taken regular doses of synthetic dopamine for a decade. She dreams of a day when stem cells could be developed into replacements for the failed neurons in her brain that no longer produce enough dopamine, a chemical that translates information into movement. Roughly 1 million Americans have Parkinson's disease.

"What I need is brain repair," said Samuelson, of Healdsburg, Calif., now a full-time Parkinson's activist. "The medication is believed to accelerate cell deterioration. So you're making a bit of a deal with the devil."

She disagrees with assertions that an embryo - a pencil dot-sized clump of cells - should have full individual rights and therefore be shielded from the research. But she says moral questions carry some weight and any decision on stem cell research deserves careful debate.

Says Samuelson: "I'm sick and desperate and in need of rescue, but I'm also an ethical person."

On the Net:

National Institutes of Health information: http://www.nih.gov/news/stemcell

Juvenile Diabetes Research Foundation: http://www.jdf.org/

Ron Heagy: http://www.goron.com/

Parkinson's Action Network: http://www.parkinsonsaction.org/index.html