First CJD 'guinea pig' dies from reaction to drugs

December 3, 2001 The Independent (London) by Matthew Beard
A WOMAN who was the first "guinea pig" in the search for a cure for the human form of so-called "mad cow disease" has died.

Rachel Forber, 20, a former soldier from Merseyside who was diagnosed in June with variant CJD, died at home after suffering liver complications from taking the anti-malarial drug quinacrine. Miss Forber had initially responded well to the treatment, at the San Francisco clinic of the Nobel Prize winner Professor Stanley Prusiner. Within three months of taking the drug in August, she was able to get out of bed, walk unaided and swim without support. Her recovery raised hopes among scientists of discovering a treatment for vCJD. Experts at the University of California found that quinacrine could help to inhibit the formation of prions, the infectious proteins thought to damage the brain.

Miss Forber's progress prompted the Department of Health to ask the Medical Research Council to examine the effectiveness of the drug. Experts warned, however, that it was premature to talk of a cure for vCJD, which is linked to eating beef infected with BSE. The disease can only be confirmed after death, and tests using quinacrine on a second patient have apparently failed.

Miss Forber was diagnosed six months after showing signs of depression last Christmas. She was unable to feed or clothe herself and could not recognise relatives. Her father, Stephen, said he consented to the use of the drug, which had not been tested on animals, because he "had nothing to lose and everything to gain".

Only seven of the 106 victims diagnosed since 1996 are alive.

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