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.
鈥淲ith 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,鈥� says Patrick Terry, chairman of the advocacy group PXE International, based in Sharon, Massachusetts.
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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 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.
鈥淲e鈥檙e not interested in lining our pockets. We just want a cure,鈥� 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鈥檚 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.
鈥淲e want a spot at the negotiating table,鈥� says Terry. 鈥淭he voice of the patient has not been heard. It鈥檚 a matter of empowering communities to speak clearly and more vocally,鈥� 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鈥檛 rule out the idea of expanding the alliance to include charities focusing on more widespread illnesses such as cancer. 鈥淲e need to give attention to multifactorial diseases,鈥� he says.
鈥淲e hope to provide a new voice internationally to support the application of good science to alleviating problems of ill health,鈥� 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鈥檚 wrong to destroy a potential human being, Kent says: 鈥淚t鈥檚 a very theoretical future person they鈥檙e talking about, as opposed to a very real, living person who鈥檚 having to cope with a serious disease.鈥�
Animal testing
Similar arguments might be deployed against opponents of animal testing. Without research on animals, 鈥測ou鈥檙e putting the protection of the animal ahead of the cure for a human being鈥�, Kent says. Patients are 鈥渞eal people living real lives鈥�, 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鈥檚 Parkinson鈥檚 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鈥檛 stopped the Parkinson鈥檚 society backing the new alliance. 鈥淧olicy makers want to meet people with disease,鈥� Vines says. The society lobbied for patients last year when Britain was considering changing the law on stem cell research and therapeutic cloning.
