Man dying of rare disease starts petition

Feb. 15, 2013 at 3:48 PM
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LONDON, Feb. 15 (UPI) -- A British man who is dying from a terminal disease says he is looking to change a law to allow terminally ill people to volunteer to become human guinea pigs.

Les Halpin, who was diagnosed with motor neurone disease two years ago, has started a petition with the Department of Health, calling for terminally ill patients to be allowed to take experimental drugs that may prolong their lives, The Daily Telegraph reported Friday. In return, those patient would give up the right to sue if they experience side effects.

There are about 3.5 million people in Britain suffering from a number of rare diseases that major drugs companies say are too uneconomic for research.

In his petition, Halpin calls for "earlier and improved access to new and existing drugs which includes the legal right to choose to try drugs at an earlier stage in the development process."

If nothing changes, Halpin said, "I will be dead in any time between this afternoon and a few years off. I already can't move my arms and legs and I have limited breathing."

Meanwhile, Michael Rawlins, president of the Royal Society of Medicine and head of the National Institute of Clinical Excellence, said a change in the law is not necessary.

"The problem is not a requirement to change the law. The problem is the difficulty in getting permission from the [National Health Service] to do this sort of research," Rawlins said, adding that "bureaucracy is impeding clinical research."

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