The Sunday Times 5 May 2013
SIR BRADLEY WIGGINS is backing a campaign for the terminally ill to be given access to unlicensed drugs after being inspired by the bravery of a five-year-old boy.
The cyclist, who was awarded a knighthood after winning the Tour de France and a gold medal at the Olympics last year, lives in Eccleston, Lancashire, not far from Jack Johnson, who has Duchenne muscular dystrophy (DMD), a condition that causes muscles to weaken.
Jack’s father, Andy, is a retired rugby league player whose clubs included Wigan Warriors, Wiggins’s favourite team.
Wiggins, along with Professor Stephen Hawking, the theoretical physicist, Tom Parker Bowles, the writer and son of the Duchess of Cornwall, and other celebrities, politicians and respected medical figures, has signed a letter to The Sunday Times backing Empower: Access to Medicine, an organisation seeking changes to the rules on prescribing experimental drugs.
The campaign was set up by Les Halpin, a millionaire businessman who is dying from motor neurone disease (MND), a degenerative neurological disorder. He argues that the terminally ill should be allowed to volunteer to become guinea pigs for unlicensed drug treatments. Even if the treatment is unsuccessful, he says doctors would secure important information about the drugs and the condition.
Jack Johnson is among the one in about 3,500 male children afflicted by DMD, which is caused by a defect on the X chromosome that makes a muscle-sustaining protein called dystrophin. Most sufferers are wheelchair-bound by the age of 10 and dead by the age of 30.
“How on earth do you deal with something like that happening to your child? You would move heaven and earth to find some kind of treatment, but there seems to be a real problem with the time it takes for new drugs to get to people who could benefit, especially for people with rare conditions,” said Wiggins, as he prepared for the start this weekend of the Giro d’Italia, cycling’s second-biggest event.
“The Empower campaign is a very welcome effort to speed things up.”
Wiggins and his wife Catherine, herself a competitive cyclist, have been helping to train Andy Johnson and 10 of his friends for L’Etape du Tour, an 81-mile stretch of the Tour de France course, which is ridden by amateurs. The group is riding to raise money for Joining Jack, a charity for research into DMD.
Andy Johnson, who is now a signwriter, said: “Brad and Cath have been fantastic. The more interest we can get in the disease and the more money we can raise, the better.”
His wife, Alex, said: “There are drugs that can help and these DMD boys need access to them now. We are losing one of them every day because there’s no access to treatment. Doing nothing is definitely fatal for Jack, but if we do something, we might be able to save him and the other boys.”
Pharmaceutical companies are reluctant to provide patients with access to experimental drugs for fear of being sued if they contribute to or cause death or serious side effects.
However, the Empower plan would entail patients and their families waiving their right to take legal action.
The group also wants the drug companies to be obliged to make any trial data publicly available, allowing other teams conducting research on the same condition to benefit from the findings.
Scarlet Higgins is another child who could potentially benefit from such a system. The three-year-old is among 150 people who are being denied access to Eculizumab, a new drug with proven benefits in treating atypical haemolytic uraemic syndrome, a rare kidney disease they all have.
Despite a recommendation by an expert committee that the treatment be approved, the government has asked for further investigation from different experts, which could take up to a year.
Toni Leyland, Scarlet’s mother, said: “Her doctor battled for her to have this drug. They didn’t want to give it to a child, but we said it can’t make her any worse.”
Eculizumab improved Scarlet’s condition but future supplies of the drug are in doubt. Many other patients have never received it.
James Hargrave, a spokesman for Empower, said: “Although Les knows he won’t live to see the benefit, he is delighted by the gathering support and he really hopes that it will give other people in similar situations, the chance to live.”
As well as Wiggins, Parker Bowles, a patron of the Duchenne Children’s Trust, and Hawking, who also suffers from MND, the campaign has the backing of Lord Saatchi, the former advertising tycoon.
Earlier this year, he introduced the Medical Innovation Bill in parliament following the death of his wife, the novelist Josephine Hart, from untreatable ovarian cancer. Bill has the same aims as Empower but mentions only terminal cancer. However, Saatchi told a meeting at the Royal Society of Medicine last week that once the legal principle that dying people can receive experimental drugs was established, he was confident Empower’s aims would also be met.
Another backer, Brad Drewett, executive chairman and president of the Association of Tennis Professionals, died last week. He was suffering from Lou Gehrig’s disease, a form of MND.