EDITORIAL: OREGON: Rethink Restrictions: Stem Cell Research Funding Needs To Be Expanded
A Register-Guard Editorial

May 26, 2004

Anti-abortion absolutists don't mince words in their characterization of embryonic stem cell research: They call it
murder. They believe human life begins at conception, and embryonic stem cell research destroys human embryos that are
three to five days past conception.

But outside that closed-minded camp, a growing group of abortion opponents is willing to acknowledge that the potential
life-saving benefits of stem cell research should not be dismissed out of hand.

Despite his essential agreement with the strict anti-abortion position, President Bush deserves credit for trying to
strike a compromise three years ago on federal funding of stem cell research. Bush acknowledged the promise of stem
cell research to yield groundbreaking treatments for devastating ailments such as Alzheimer's, Parkinson's disease,
diabetes, muscular dystrophy and cystic fibrosis.

He agreed to let federally funded researchers study 64 embryonic stem cell lines created before his August 2001 cutoff
date. The policy drew criticism from scientists who feared its constraints would hamper U.S. efforts, but there was
ample support from experts who believed the lines would be enough to get started on basic research.

Embryonic stem cells can be cultured to create any type of tissue in the human body. By studying how these master cells
differentiate into muscle, brain and other tissues, researchers hope to learn how to grow cells that will treat
diseases.

Unfortunately, Bush's initial projections of stem cell availability didn't materialize. Today, there are only 19 usable
lines created before the 2001 cutoff date, and that number is never likely to rise above 23, according to the National
Institutes of Health.

But the number of cell lines available to researchers worldwide who don't receive U.S. government funds is up to at
least 51 and could rise to more than 100 over the coming year. Non-American scientists have seized the momentum in stem
cell research, with laboratories in Singapore, Israel, Sweden and Finland announcing recent breakthroughs.

Reports of U.S. stem cell researchers leaving to work in more supportive environments overseas prompted Senate Majority
Leader Bill Frist to say it's time for Bush to review the policy. No less a GOP luminary than former first lady Nancy
Reagan has publicly joined 206 members of Congress, including some longtime abortion opponents, who are pressing the
president to revisit his 2001 decision.

The moral line drawn by Bush was originally meant to prevent the government from creating new embryos that would be
destroyed in subsequent research. But that line is blurred by the fact that fertility clinics simply discard or freeze
far more human embryos in the normal course of treating patients than researchers ever would. In-vitro fertilization
creates multiple embryos in a laboratory in the hope of successfully implanting just one. Most of those surplus embryos
will die.

So government restrictions are actually having no impact whatsoever on the largest source of discarded embryos. Faced
with the choice of throwing unwanted embryos in the garbage or using them to advance research that could alleviate
untold human suffering, even staunch anti-abortion advocates are lobbying for looser federal funding rules.

The federal government plays a vital role in this delicate scientific arena. The strings attached to federal funding
include rules and monitoring that minimize the self-interested motives of private sector research. Proposals to use
embryos from fertility clinics include requiring informed consent from donors and prohibiting donors from being paid.

President Bush found the courage to craft an appropriate compromise in 2001. It's time for him to summon that courage
again and provide U.S. researchers with federal funds to study embryonic stem cells discarded by fertility clinics.

SOURCE: The Register-Guard, Oregon
http://tinyurl.com/2fo64

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STUDY: OREGON: Parkinson's Caregivers At Risk For Deteriorating Health
Public release date: 26-May-2004
Contact: Jonathan Modie
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503 494-8231
Oregon Health & Science University

Parkinson's caregivers at risk for deteriorating health
OHSU study also finds increased strain among spouses of people with disease

PORTLAND, Ore. - An Oregon Health & Science University study shows the health of family caregivers should be as top of
mind as that of Parkinson's disease patients.

The study by researchers at the OHSU Parkinson Center of Oregon found that people caring for spouses with Parkinson's
disease, either at home or in a care facility, are at heightened risk for deteriorating health and well-being, as well
significantly increased strain.

The investigators studied spouse-caregivers from early in the diagnosis of their spouses' Parkinson's disease and again
10 years later. The goal of the study was to identify early warning signs in families that would predict who is at
greatest risk of caregiver strain, and the negative effect on health and depression.

The study of more than 150 spouse-caregivers of early-stage Parkinson's patients found that physical and mental health
declined and strain increased dramatically over 10 years. The investigators also found that there were predictors early
in the course of caregiving that might identify who was at greatest risk.

"As an example, caregivers who had bad health and depression to start with were more likely to have worse health and
depression at the end of care giving," said study investigator Julie H. Carter, R.N., M.S., A.N.P., associate professor
of neurology in the OHSU School of Medicine and associate director of the Parkinson Center of Oregon.

The findings suggest the health of family caregivers is paramount to the well-being of Parkinson's disease patients.
And they may help researchers identify potential areas of early interventions to improve the health of both patients
and caregivers.

"Families are an invisible part of health care. They provide tremendous support in delivering care and if something
happens to that vital link, it makes the person with Parkinson's disease more vulnerable," Carter said. "So being
concerned about the health of families ends up having incredible social and economic implications."

The study, "Family Caregiving in Parkinson's Disease (PD): A Ten-Year Follow-Up," was presented recently at the annual
meetings of the Parkinson Study Group and the American Academy of Neurology.

The study is an eight-year follow-up to an assessment of more than 300 Parkinson's disease caregivers between 1992 and
1994 in what was called "The Parkinson's Spouse's Project." Using the project's data, the recent study aimed to predict
changes in caregiver strain, depression and physical health from 1992 to 2002, and describe changes in caregiving and
their connections to strain, depression, physical health, the quality of the relationship, and optimism and pessimism.

The recent study surveyed 156 of the original project participants: 105, or 67 percent, continued to care for spouses
with Parkinson's disease at home; 11, or 7 percent, had spouses in a care facility, such as a nursing home; and 40, or
26 percent, were bereaved.

The study found that the health, strain, optimism and pessimism, and quality of the relationship - mutuality -
deteriorated "significantly" over 10 years among the 105 caregivers with spouses at home.

"How depressed you are in 1992 explains a lot about what happens to your mental health long term, as does optimism and
pessimism," Carter said. "If we identify caregivers early who have depression, we might be able to intervene early to
treat their depression. Another option may be to teach people to be more optimistic."

Another notable finding is that mutuality is a risk factor for declining health.

"Mutuality is the quality of relationship itself between the patient and spouse - how much time they spend together,
how much they enjoy each other, care for each other, how easy it is to be with each other," Carter explained. "We think
high mutuality is protective against experiencing a lot of strain."

Carter said the lesson to be learned from the study is that families of Parkinson's disease patients suffer, too.

"It's not just the patient who has the disease. It's the family that has the disease," she said. "People with
Parkinson's disease aren't isolated from their environment. Their environment is primarily their families and,
therefore, the health of the family becomes critical in providing good health to the patient.

"We're interested in looking at the family experience as an interactive unit, as a dynamic thing. It's even having
clinicians think about their patients from a family caregiving approach."

Carter's collaborators at the OHSU School of Nursing were: Karen S. Lyons, Ph.D., assistant professor of population-
based nursing; Barbara J. Stewart, professor of population-based nursing; and Patricia G. Archbold, R.N., D.N.Sc.,
FAAN, professor and director, John A. Hartford Center of Excellence in Geriatric Nursing. The study was supported by
the Medical Research Foundation and the Parkinson Study Group.

###

To access all OHSU news releases, visit http://www.ohsu.edu/news/

SOURCE: EurekAlert, DC
http://www.eurekalert.org/pub_releases/2004-05/ohs-pca052604.php

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