Copyright 2005 Copley News Service  
Copley News Service
February 24, 2005 Thursday
SECTION: CALIFORNIA ONLY
LENGTH: 1409 words
HEADLINE: ALS patient pushes for stem cell research
BYLINE: Sandi Dolbee Copley News Service
DATELINE: SAN DIEGO

Robert Carter's words are punctuated with his tears. "I'm hoping that Proposition 71 and stem cells will help me," he says, sitting in his wheelchair in front of a quiet audience.

"I don't want to die."

Carter has amyotrophic lateral sclerosis, better known as Lou Gehrig's disease for the baseball player who also had ALS. Like a voracious Pac-Man, ALS attacks motor neurons, destroying the brain's power to control muscle movement. Patients lose the ability to walk, to talk, to swallow, to breathe.

There is no cure.

"I'm hoping I've got two to three years left," says Carter, a 49-year-old former postal worker whom friends call Bobby. "I'm hoping by then something will happen."

It had been a week since his brief talk. His testimony was part of a presentation on ALS before the start of an early February meeting in San Diego of the new independent oversight committee. The committee, which is charged with implementing California's $3 billion, 10-year stem-cell initiative, wants to highlight a disease before each monthly meeting as it begins its quest to fund stem-cell research and find cures.

It's late morning, and Carter is sitting in his Del Mar town house in denim shorts, a long-sleeve shirt and white socks. Next to him is a walker, which he uses for getting from room to room, except for when he goes up the stairs. "I have to pull myself up the stairs," he says.

Carter supported Proposition 71, which voters approved in November to pave the way for this initiative. Now, he wants to be part of the solution.

"I know it may not work, but if I can help move the research forward, that's my contribution to life," he says.

WAITING GAME

For Carter, this is a race against time.

The California Institute for Regenerative Medicine, the organization created by Proposition 71, is just getting started. The oversight committee is wrestling with issues such as where it will be headquartered and finding a president to head the staff. Carter is anxious for the awarding of research grants to begin.

"While they're still talking, I'm still failing," he says. "That's the frustrating part."

The most promising research is with stem cells from days-old embryos. Because these cells have not yet been programmed, they have the potential to become any cell in the body. Conjuring images of the cavalry coming to the rescue, these embryonic stem cells could conceivably replenish diseased organs and tissues - offering the promise of curing everything from Alzheimer's to ALS.

Carter leans down and touches his atrophied left leg. "Once they get stem cells, my muscles will come back."

But the science is far from certain. And so are the ethics.

Morally, opponents liken it to abortion because extracting the stem cells destroys the young embryos, knowns as blastocysts. For Joni Eareckson Tada, a quadriplegic who leads a Christian ministry for the disabled in Agoura Hills near Los Angeles, that means destroying a human life.

"The severity of my disability and the extent to which I am in need of a cure is not the issue," is how Tada put it in an interview with The Church Report magazine. "To kill human life in order to harvest its usable parts makes life a commodity, and that is an affront to God's creative authority. No cure is worth that."

When Pope John Paul II met with President Bush four years ago,embryonic stem cell research was on his agenda. He called it one of the "evils" that America should shun.

Carter doesn't see it that way. "It's not a life until the blastocyst gets into a womb," says Carter, who was raised a Presbyterian and considers himself a religious man.

He compares using donated embryos to using donated organs to save the lives of transplant recipients. "I think it's meant to help us."

A legal fight also appears to be looming. Earlier this week, two petitions were filed with the state Supreme Court to block the initiative over constitutional questions.

These arguments aside, Carter is convinced God had a hand in his coming here from Missouri in 1994, four years before his left leg went limp.

"Something just told me to move," he says. "Little did I know I was going to come down with this neurological disease right here where they're working on it."

Even before the new statewide stem-cell research initiative, San Diego has been a hub for research on potential ALS therapies. Carter's doctor, neurologist Richard A. Smith, is active in this research and optimistic that one of these drugs could be available for trial next year.

"There's a lot of exciting work, which should lead to a new day for ALS therapies," says Dr. Smith, who is the director of the Center for Neurologic Study in La Jolla and a Skaggs clinical scholar at Scripps Institute.

But whether treatment will come in time to save Carter is another issue. "Things are looking better than ever for the future, but for any one patient, at this moment, we don't have that therapy in hand," Dr. Smith acknowledges.

As for stem cells, it'll probably take several years before researchers are ready to conduct clinical trials (remember, Proposition 71 sets up a 10-year program). And even when those trial therapies get under way, Smith cautions that there are no guarantees.

"How do you know that these cells aren't going to do something bad like turn into a cancer?" he asks. "We don't understand the basic biology well enough to really guarantee that when we put them in the brain that they're going to become what we think they're going to become."

Carter says he's willing to take the chance. "I'm just hoping I can hang in there," he says.

The good news is that Carter has a slow-moving form of ALS, and his breathing and voice remain strong. Still, however, his left leg is useless, his left arm is weak, and he can feel the other leg beginning to fade. "It's like you got somebody else inside of me attacking me, and there's nothing you do about it."

His ALS also is the hereditary kind. He says he has a cousin who has it and a sister who may have it. He believes his mother and grandmother died because of it, though they apparently were not formally diagnosed. Carter, who lives alone and has no children, sees himself as a piece in a puzzle that could ultimately save his relatives - and others.

"I often wonder if that is my purpose in life," he says. "He (God) has got a plan. I'm just hoping I'm going to finish what I started."

SETTING PRIORITIES

When the committee begins awarding grants later this year, Carter would like ALS to be at the top of the list.

Because it's fatal and so aggressive, Carter thinks it warrants priority. So does Fred B. Fisher, executive director of the greater Los Angeles chapter of the Amyotrophic Lateral Sclerosis Association.

"We think there are some unique opportunities presented in ALS that may not be present in other diseases," Fisher says, noting that the brain in ALS patients remains alert and so they can be a more active participant in the treatment research.

"The grant selection process is going to be a very difficult process," he adds, "and we will all be looking closely at how the criteria for selection is developed."

But David Serrano Sewell, who is on the oversight committee, doesn't want to start putting one disease ahead of the other. "We all recognize that people are suffering and dying, and we need to do something now," Sewell says. "But we have to adopt the best policies and the best procedures to award these grants."

As with several other committee members, Sewell, a deputy city attorney in San Francisco, has a personal stake in this research. He has multiple sclerosis and was appointed by Lt. Gov. Cruz Bustamante to represent both the MS and ALS communities.

"I want to get this stuff out of the door today, yesterday, but you've got to be realistic. I tell myself, 'David, you're not doing this for (yourself). You're doing this for someone 15 or 20 years from now."'

On a shelf in Carter's living room are testimonies of another lifetime. There are tennis trophies and a photograph from a scuba-diving trip. Now he worries about when he'll lose his driver's license (he drives with the help of hand controls) or when he'll no longer be able to speak.

He prays each night for a cure. And while the future is uncertain, he says he knows one thing: Someday he won't have ALS. "Either I'll be in heaven or they're going to find a cure. Either way, it'll be gone."