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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.

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 retina.

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.

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 British-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).

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 disease.”

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.