MED/SOC: "Patient Power"

From: Greg Burch (
Date: Thu Mar 01 2001 - 05:39:22 MST

[I don't know if this item's already been forwarded here, since it came
across my desktop while I was in digital suspended animation. This looks
like a promising kind of political and cultural organization with an interest
in forwarding key parts of the transhumanist agenda.]

Patient power

People with inherited diseases are preparing a
global challenge to pro-lifers over the future of
medical research

Exclusive from New Scientist magazine

Patient power is getting a global voice through a new
movement to represent people with a range of hereditary
diseases. The grouping will support, and may ultimately control
medical research into these illnesses. Its backers also aim to
challenge anti-abortion, animal rights and other lobby groups
that oppose some forms of biomedical research.

The movement will have teeth to back its arguments. One
group of supporters has applied for patents on a gene which
causes the distressing disease pseudoxanthoma elasticum.

"With the heavy stick of holding a patent on the gene, we can
accelerate the research process, control royalty and licence
fees, and eliminate turf wars between researchers," says
Patrick Terry, chairman of the advocacy group PXE
International, based in Sharon, Massachusetts.

Empowering patients

People with PXE accumulate calcium in their tissue, which
gradually sags, cracks and loses its elasticity. Many sufferers
go blind by the age of 30 or 40 because of damage to the

Terry, who has two children with the condition, worked with
other sufferers to finance a patent application on ABCC6, the
gene which causes PXE when faulty. It was identified last year
by Charles Boyd of the University of Hawaii and other
researchers backed by PXE International.

"We're not interested in lining our pockets. We just want a
cure," says Terry. He sees holding the patent as a way of
empowering patients, the people who have most to gain from
research into the condition. In the long term, PXE International
may also be able to influence, and to some degree control, the
direction of research into the disease.

Political influence

The idea of patients applying for patents is just one new
strategy for what could become one of world's most powerful
political lobbies. Earlier this month, at the BioVision meeting on
biotechnology in Lyon, France, Terry combined with delegates
from other groups representing patients with rare hereditary
conditions to form a global alliance.

Founders include the UK-based Genetic Interest Group (GIG),
the Genetic Alliance in the US, plus patient groups from the
Netherlands, Belgium and Iran.

"We want a spot at the negotiating table," says Terry. "The
voice of the patient has not been heard. It's a matter of
empowering communities to speak clearly and more vocally,"
he says. Terry says the idea will be taken forward at a
meeting in Vienna in May of the European Alliance of Patient
and Parent Organisations for Genetic Services and Innovation
in Medicine (EAGS).

Moral high ground

Terry doesn't rule out the idea of expanding the alliance to
include charities focusing on more widespread illnesses such as
cancer. "We need to give attention to multifactorial diseases,"
he says.

"We hope to provide a new voice internationally to support the
application of good science to alleviating problems of ill
health," says Alastair Kent, director of GIG and president of
the EAGS.

The new alliance will attempt to win the moral high ground
from anti-abortion and antivivisection groups, he says. It
could, for example, challenge the absolute opposition by
anti-abortionists to research on human eggs or early embryos.

To opponents of embryo research who say it's wrong to
destroy a potential human being, Kent says: "It's a very
theoretical future person they're talking about, as opposed to
a very real, living person who's having to cope with a serious

Animal testing

Similar arguments might be deployed against opponents of
animal testing. Without research on animals, "you're putting
the protection of the animal ahead of the cure for a human
being", Kent says. Patients are "real people living real lives",
says Terry.

The new alliance will be looking for consensus among its
members when developing its global policies. That may be
difficult to achieve in some cases, says Greg Vines, a
spokesman for Britain's Parkinson's Disease Society. He says it
could be difficult to reach a unified position on embryo
research, for example, if patient advocacy groups are divided
along religious lines.

This hasn't stopped the Parkinson's society backing the new
alliance. "Policy makers want to meet people with disease,"
Vines says. The society lobbied for patients last year when
Britain was considering changing the law on stem cell research
and therapeutic cloning.


       Greg Burch -
     Attorney::Vice President, Extropy Institute

    "We never stop investigating. We are never
      satisfied that we know enough to get by.
   Every question we answer leads on to another
      question. This has become the greatest
          survival trick of our species."
                -- Desmond Morris

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