05-18-2002

LOBBYING: Patient-Lobbyists Divided Over Cloning

The pictures don't tell the whole story.				On
April 10, after announcing his position on a Senate bill that would allow
human cloning, President Bush stepped down from the podium in the White
House East Room and posed with wheelchair-bound patients. Weeks later, on
April 30, four senators declared their views on the same cloning measure
at a press conference, flanked by photogenic patients in
wheelchairs.


But the similarities stopped there, because the two groups of patients
actively oppose each other. Those at the Senate announcement said that
cloning is vital for medical research and that they are hoping for cures
for their diseases. Those who joined Bush, however, support the president
in opposing human cloning, seeing it as a waste of resources or as inhuman
treatment of human embryos.


The activists on both sides of the cloning debate are part of a burgeoning
corps of patients and patient-advocacy groups in Washington. The
membership list of the National Health Council, which represents many
voluntary health organizations, includes more than 50 such groups, many of
which have support from, or board members employed by, the high-tech
sector. These groups can be very effective in persuading legislators to
vote their way, said Ed Howard, executive vice president at the Alliance
for Health Reform, a Washington-based nonprofit that seeks to promote
health-related debate and expand health insurance coverage.


In recent weeks, patients and their advocacy groups have helped to win
Medicare coverage for Alzheimer's sufferers, lobbied for government
support for new anti-cancer pills, and helped persuade Health and Human
Services Secretary Tommy G. Thompson to run 10 miles to highlight the role
of fitness in fighting diabetes. The patient groups often work hand in
hand with universities and biotech companies.


Much of their work is devoted to noncontroversial, quality-of-life issues
or campaigns to alert people to the warning signs of, as well as the
treatments for, particular diseases. Many groups also raise funds to pay
for research programs, and most work closely with university-based
researchers to craft messages, identify priorities, raise funds, and lobby
Washington.


Some of these patient-advocacy campaigns have been highly controversial,
notably the 1980s protests by patients to press the government for
research into acquired immune deficiency syndrome. In the majority of
cases, however, patients do not openly clash with each other over research
priorities.


That's clearly not the case with cloning-related research.


The April 28 issue of The Detroit News published an article by paralysis
victim James Kelly criticizing former movie actor Christopher Reeve, who
is confined to a wheelchair and is the most prominent patient-advocate of
cloning for research and stem-cell transplants. Kelly argues that
paralyzed patients are "cutting their own throats" by urging
Congress to support cloning research because cloning will distract
scientists from pursuing cures that might be developed sooner based on
stem-cells stored within adults.


"I am very much against cloning," Kelly said in an interview.
"I'm convinced, after five years of studying research [through
government databases], that cloning research will result in the slowing of
cures becoming available, and will result in crucial funds being diverted
to an inferior research field," namely, the pursuit of therapies from
stem cells extracted from cloned embryos.


Kelly, 45, is a former railway electrician who lost the use of his lower
body in a 1997 auto accident in Montana. Now living in Texas, he uses the
Internet to keep in close contact with other paralyzed patients and to
read many of the latest medical studies on the NIH Web site. Last year,
Kelly called Richard Doerflinger, the associate director for policy
development for the U.S. Conference of Catholic Bishops' Secretariat for
Pro-Life Activities, to volunteer as an anti-cloning spokesman.


Asked if his opposition to cloning would stymie valuable research, Kelly
argued that the scientific community pressures scientists to focus on the
profession's favored research priorities rather than on near-term cures.
"All I am interested in is getting cures to patients-I don't care
about religion [or] abortion," he said.


Opposing Kelly's position is Kris Gulden, a former police officer in
Alexandria, Va., who was hit by a car in May 1998 while training for a
biking event to raise funds for AIDS programs. Since then, she has been
confined to a wheelchair. Gulden is a spokeswoman in advertisements for
the pro-cloning coalition, called the Coalition for the Advancement of
Medical Research, which includes patients groups, universities,
scientists, and businesses. Its president is Michael Manganiello, also a
senior vice president at the Christopher Reeve Paralysis Foundation. Reeve
declined to comment for this article.


Gulden has little experience as a lobbyist. She first agreed to testify on
behalf of CAMR at a February 5 Senate hearing. She knew nothing of CAMR
until she met with Tricia Brooks, associate director of government
relations for the Reeve Foundation, she said. Asked to comment on the
claims of cloning opponents-that, for example, the technology will be used
to develop and test custom-designed babies-Gulden declined, saying,
"I only know what I read and what I hear on CNN."


"At the risk of sounding callous, I'm looking out for my quality of
life," she said after the April 30 press conference.


One of Gulden's allies at the press conference was Doug Wick, a Hollywood
director whose daughter has diabetes. With the help of the New York
City-based Juvenile Diabetes Research Foundation International and three
other Hollywood executives, he quickly raised more than $600,000 for a
publicity campaign in support of cloning for therapies and for research,
but not for birth. Wick's group is advised by such prominent scientists as
Nobel Prize winner Paul Berg, who is a professor at Stanford University
and a board member of Affymetrix, which sells devices used in
cloning-related research.


Like Kelly and Gulden, Wick is focused on getting cures rather than on the
possible deleterious impact on society, saying that scientists should be
allowed to use cloning for any commercial purpose if it speeds the
development of cures. "We need the commercial people incentivized....
They've got to make a living," although government support for
cloning would help regulate it, he said.


"There are a lot of people on the patient side that don't understand
the business side of it," said Susan Pendleton, the wheelchair-bound
leader of Maryland Walks, which successfully lobbied the Maryland
Legislature to fund research into cures for spinal paralysis. However,
Pendleton added, "I've met [medical research] chief executive
officers, and most of them don't get into this business for the
money." Pendleton, who was paralyzed in 1992 following a stroke,
supports cloning to find cures but is wary of using cloned embryos for
other research. "I'm pro-choice [on abortion] ... but to experiment
on something when we don't know if it is feeling pain, and especially when
the idea is to make perfect people [with embryo-tested genetic upgrades],
that I have problems with."


However, like Wick, Reeve, and other pro-cloning advocates, Pendleton is
scathing in her characterizations of cloning opponents. For example,
Pendleton calls Doerflinger "an agent for a foreign government
because he is basically pushing the Holy See's agenda" against human
cloning. And Wick calls opponents of cloning research
"fundamentalists" who will be swept aside by the unstoppable
march of technology. "Today, 100 million Americans suffer from
serious or chronic incurable diseases," Reeve said at a March 5
Senate hearing. "Our government is supposed to do the greatest good
for the greatest number of people."


But if that were so, "he'd be euthanized, because it costs tens of
thousands of dollars [per year] to maintain him," said Joni Eareckson
Tada, wheelchair-bound since she broke her neck in a diving accident 35
years ago. Eareckson Tada was one of the activists who met with Bush on
April 10. At a press conference before the meeting, she argued that
"for me, and tens of thousands of people with disabilities, the
security of human dignity and respect for human life is paramount to
securing a cure.... The disabled would be the first to be threatened in a
world where eugenics and the biotech industry set the moral agenda."
Eareckson Tada heads a group called Joni and Friends, based in Agoura
Hills, Calif., which works in the United States and other countries to
promote a Christian perspective on disability.


Because of his opposition to cloning, Kelly gets much flak from other
disabled and sick people, reflecting the desperate desire of patients for
a cure. "Because the [patients] have so much emotionally tied into
their researchers, they trust doctors, scientists.... For them to conclude
that they are being lied to by their doctors is much more than their
comfort zones can tolerate," Kelly said. Unless scientists are pushed
to focus on near-term therapies, rather than on science, "we'll be
sitting here till hell freezes over," he concluded.


Reeve's perspective is 180 degrees different. "Without the ability to
use my own DNA, without [cloning-enabled] somatic-cell transfer, I'm out
of luck," he said at the March 5 hearing. "If you don't have the
combination of therapeutic cloning and embryonic stem cells, you're going
to be condemning a lot of people to unnecessary suffering and to
death."


Neil Munro

National Journal