Max
08-12-2001, 07:47 AM
Stem-cell news deflates hope for cures
PATIENTS WELCOME FEDERAL AID BUT FEAR IT WILL COME TOO LATE FOR THEM
BY ANU MANCHIKANTI AND BARBARA FEDER
Mercury News
When an injury has left you to live your life in a wheelchair, or your hands shake from Parkinson's disease, this week's biggest political choice is also the most personally felt.
Around the Bay Area, people living with incurable illnesses greeted President Bush's decision Thursday to allow some federal funding for stem-cell research with a mix of disappointment and cautious optimism. Patients with spinal-cord injuries, Alzheimer's disease and other conditions that might eventually be helped by the research said Bush's decision hit at the very center of their worlds.
Any actual treatments or cures arising from stem cells are still far in the future, a fact patients and doctors know all too well. But for those with illnesses beyond current medicine, the promise of stem-cell research still offers some small hope. Now, Bush's announcement raises concerns that those hopes will take longer to realize.
``It seems that a lot of people use an intellectual argument and put this into an abstract environment, where people with these diseases are living in the real world,'' said Leonard Ke, 58, a Parkinson's patient who lives in San Francisco and runs a Daly City support group for people with Parkinson's. ``This decision affects millions of Americans.''
Bush's choice allows for federal funding of limited research using existing lines of stem cells made from discarded human embryos. His decision banned funding for any research that would require further destruction of embryos.
Stem cells are tiny fragments of tissue that can multiply almost indefinitely and form into more than 200 types of human tissue. Researchers argue that these flexible cells offer the most promise for treating ailments that have, until now, seemed impossible. But religious leaders and some conservatives had pushed to cut off stem-cell funding, saying the research results from the destruction of potential human life.
By straddling the middle ground, Bush's decision satisfies nobody, said Leon Rosenthal, a 75-year-old retired businessman from Hillsborough who was diagnosed with Parkinson's six years ago. The degenerative neurological condition can severely impair motor functions, and scientists are researching therapies in which stem cells could be implanted in the brain to stop or even reverse its effects.
``I'm extremely disappointed,'' he said. ``Those of us with various diseases where stem-cell research could help are going to have to wait a lot longer for a cure.''
Laura Daener, a 19-year-old junior at Stanford University whose brother Chris has muscular dystrophy, said Friday that Bush's decision seemed heartless.
Chris, 16, is only expected to live about four more years, she said. Now in a wheelchair, he will eventually be bedridden and may face heart failure, a common cause of death for people with muscular dystrophy, Daener said.
``Bush does not appreciate the horror of living with someone who's dying from a disease,'' Daener said. ``My family and I live in a box. There are so few doors out. When someone shuts a door by limiting research, it becomes that much more hopeless.''
Others, though discouraged by the limited scope of the research, felt that Bush's decision could still be a first step.
Richard Patterson, a peer-support coordinator at the spinal-cord-injury center at Santa Clara Valley Medical Center, said the decision will motivate those with neurological conditions to work harder to stay healthy longer.
``There is certainly a sense of optimistic hope, that we'll be able to take this a little bit further,'' said Patterson, 38, who has been a quadriplegic for 20 years. ``I think he could have done more, but I appreciate what he did.''
Steven LaBarbera, a 22-year-old computer-science major at San Jose State University, said he had been concerned that Bush might block future stem-cell research. LaBarbera, who has been a quadriplegic since a skateboarding accident three years ago, hasn't ruled out research from stem cells helping him.
But he harbors no false hopes, and relies on the advice of a friend who has been a quadriplegic since the 1960s: ``Don't put your hopes up,'' the friend tells him. ``Don't put your eggs in one basket.''
Pleased that at least some research might be possible, physicians and researchers voiced a kind of resigned acceptance of Bush's policy.
Dr. Lawrence Shuer, neurologist and chief of staff at Stanford Hospital and Clinics, called Bush's decision a ``wise'' one, but acknowledged ``it was somewhat of a compromise.''
``Sometimes you do have to take small steps when you have so many people with such highly charged emotions on this issue,'' Shuer said.
The reality of the situation, said Dr. Gary Steinke, chief of geriatrics at Santa Clara Valley Medical Center, is that we don't know where stem-cell research will lead. Still, he said, stem cells hold promise.
``We're going to, in 20 years, have more than 30 million people with Alzheimer's disease,'' he said. ``Without a major treatment, the quality of life for a significant number of people will be pretty devastating. Not that stem-cell research is going to cure this, but its potential holds more promise than drugs.''
``Yes, it's limited, but it's a start,'' Steinke said. ``It's not a closed door.''
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Contact Anu Manchikanti at amanchikanti@sjmercury.com
PATIENTS WELCOME FEDERAL AID BUT FEAR IT WILL COME TOO LATE FOR THEM
BY ANU MANCHIKANTI AND BARBARA FEDER
Mercury News
When an injury has left you to live your life in a wheelchair, or your hands shake from Parkinson's disease, this week's biggest political choice is also the most personally felt.
Around the Bay Area, people living with incurable illnesses greeted President Bush's decision Thursday to allow some federal funding for stem-cell research with a mix of disappointment and cautious optimism. Patients with spinal-cord injuries, Alzheimer's disease and other conditions that might eventually be helped by the research said Bush's decision hit at the very center of their worlds.
Any actual treatments or cures arising from stem cells are still far in the future, a fact patients and doctors know all too well. But for those with illnesses beyond current medicine, the promise of stem-cell research still offers some small hope. Now, Bush's announcement raises concerns that those hopes will take longer to realize.
``It seems that a lot of people use an intellectual argument and put this into an abstract environment, where people with these diseases are living in the real world,'' said Leonard Ke, 58, a Parkinson's patient who lives in San Francisco and runs a Daly City support group for people with Parkinson's. ``This decision affects millions of Americans.''
Bush's choice allows for federal funding of limited research using existing lines of stem cells made from discarded human embryos. His decision banned funding for any research that would require further destruction of embryos.
Stem cells are tiny fragments of tissue that can multiply almost indefinitely and form into more than 200 types of human tissue. Researchers argue that these flexible cells offer the most promise for treating ailments that have, until now, seemed impossible. But religious leaders and some conservatives had pushed to cut off stem-cell funding, saying the research results from the destruction of potential human life.
By straddling the middle ground, Bush's decision satisfies nobody, said Leon Rosenthal, a 75-year-old retired businessman from Hillsborough who was diagnosed with Parkinson's six years ago. The degenerative neurological condition can severely impair motor functions, and scientists are researching therapies in which stem cells could be implanted in the brain to stop or even reverse its effects.
``I'm extremely disappointed,'' he said. ``Those of us with various diseases where stem-cell research could help are going to have to wait a lot longer for a cure.''
Laura Daener, a 19-year-old junior at Stanford University whose brother Chris has muscular dystrophy, said Friday that Bush's decision seemed heartless.
Chris, 16, is only expected to live about four more years, she said. Now in a wheelchair, he will eventually be bedridden and may face heart failure, a common cause of death for people with muscular dystrophy, Daener said.
``Bush does not appreciate the horror of living with someone who's dying from a disease,'' Daener said. ``My family and I live in a box. There are so few doors out. When someone shuts a door by limiting research, it becomes that much more hopeless.''
Others, though discouraged by the limited scope of the research, felt that Bush's decision could still be a first step.
Richard Patterson, a peer-support coordinator at the spinal-cord-injury center at Santa Clara Valley Medical Center, said the decision will motivate those with neurological conditions to work harder to stay healthy longer.
``There is certainly a sense of optimistic hope, that we'll be able to take this a little bit further,'' said Patterson, 38, who has been a quadriplegic for 20 years. ``I think he could have done more, but I appreciate what he did.''
Steven LaBarbera, a 22-year-old computer-science major at San Jose State University, said he had been concerned that Bush might block future stem-cell research. LaBarbera, who has been a quadriplegic since a skateboarding accident three years ago, hasn't ruled out research from stem cells helping him.
But he harbors no false hopes, and relies on the advice of a friend who has been a quadriplegic since the 1960s: ``Don't put your hopes up,'' the friend tells him. ``Don't put your eggs in one basket.''
Pleased that at least some research might be possible, physicians and researchers voiced a kind of resigned acceptance of Bush's policy.
Dr. Lawrence Shuer, neurologist and chief of staff at Stanford Hospital and Clinics, called Bush's decision a ``wise'' one, but acknowledged ``it was somewhat of a compromise.''
``Sometimes you do have to take small steps when you have so many people with such highly charged emotions on this issue,'' Shuer said.
The reality of the situation, said Dr. Gary Steinke, chief of geriatrics at Santa Clara Valley Medical Center, is that we don't know where stem-cell research will lead. Still, he said, stem cells hold promise.
``We're going to, in 20 years, have more than 30 million people with Alzheimer's disease,'' he said. ``Without a major treatment, the quality of life for a significant number of people will be pretty devastating. Not that stem-cell research is going to cure this, but its potential holds more promise than drugs.''
``Yes, it's limited, but it's a start,'' Steinke said. ``It's not a closed door.''
--------------------------------------------------------------------------------
Contact Anu Manchikanti at amanchikanti@sjmercury.com