Healthy Skepticism Library item: 5816

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Publication type: news

Milne J.
Drug test victim tells of despair
Stuff ( New Zealand) 2006 Aug 7
http://www.stuff.co.nz/stuff/0,2106,3756557a10,00.html

Full text:

Drug test victim tells of despair
07 August 2006
By JONATHAN MILNE and AGENCIES

New Zealander David Oakley has spoken publicly for the first time about how he “just lives day by day” after his violent reaction in a British drug trial and recent diagnosis of cancer.

“Now all I can do is sit and wait for it to develop. I can’t make plans,” the 35-year-old driving instructor said.

The London drug trial had turned him into a ticking time bomb.

He and his new bride, Katrina, planned to freeze his sperm so he could father children regardless of how the cancer progressed.

Mr Oakley was one of six volunteers paid £2000 ($NZ6100) to test the drug TGN1412, made by German firm TeGenero, in March.

He told Britain’s Mail on Sunday that he had entered the trial to get money for his wedding to Katrina, a fellow Kiwi he met at Canterbury University five years ago.

He gave his bride her dream wedding in June, but returned from his honeymoon two weeks ago to news that he had a rare form of cancer – lymphoid malignancy.

Mr Oakley was the first to be given the trial drug, designed to treat leukaemia, arthritis and multiple sclerosis, and fell ill within minutes.

“The pain just gripped my head. Then I got shooting pain in my lower back and doubled up in agony.”

Over the next few hours, his temperature rose to about 40 degrees celsius, his blood pressure plummeted and he shivered uncontrollably. At one point, he threw up a litre of green bile.

Doctors pumped fluids and steroids into the volunteers, but they suffered organ failure and their heads swelled, turning them into versions of a famously disfigured man dubbed The Elephant Man.

Mr Oakley was the first to arrive at Northwick Park Hospital for the trial. He had planned to be back at his London driver training school in three days.

He had taken part in two previous trials and had no adverse reactions.

“I thought it was a good way of getting a paid holiday. But what had seemed such a safe bet almost killed me.”

Because he was the first of the volunteers to be administered the drug, it was in his system the longest.

“I think that’s why I’m the one who’s developed cancer – because my immune system took the biggest battering.”

The swelling had gone from his body but pain still shot through his joints when he moved. He was constantly exhausted and could not concentrate, forcing him to give up his job.

TeGenero is in liquidation and the six men have each been paid £10,000 by its insurers.

Despite his condition, he had believed he would make a full recovery.

The diagnosis of cancer a few days ago was devastating.

“When I left hospital the doctors there told me that I should recover fully. They were very positive about the outcome.

“So you can imagine how shocked I was to learn that, along with the fear of developing multiple sclerosis, lupus, ME, rheumatoid arthritis and goodness knows what else, I have to contend with the big C.”

The six volunteers are now seeking £5 million each in compensation. TeGenero is in liquidation and the six men have each been paid £10,000 by its insurers.

The lawyer for four of the men, including Mr Oakley, commissioned an analysis of their conditions and prospects.

A British immunology expert, Richard Powell, concluded that the men faced a life of auto-immune diseases and that Mr Oakley was showing early signs of cancer.

The firm that ran the trials, Parexel, does not accept liability and will not pay the men’s medical costs.

“I try to stay calm, but sometimes I get really angry with the people responsible, especially because they have not paid our medical bills,” Mr Oakley said.

He first moved to Britain in 1995 but came back to New Zealand in 2001 to study commerce at Canterbury University, where Katrina was his tutor.

In 2004, the couple emigrated to England, setting up home in West London. They became engaged last year while on a diving holiday in Egypt.

Mr Oakley said he hoped the cancer could be treated and tried not to contemplate being in pain for the rest of his life. “The thought of not being able to play with my children or kick a ball with them in the park is unbearable