Britain's most revered newspaper editor returned to the scene of his greatest triumph yesterday, joining thalidomide survivors to demand that the Government acknowledge its role in the world's worst drug disaster.
Sir Harold Evans accused the Government of "shirking its responsibility" to the men and women born with severe deformities, 35 years after he first secured compensation for them in a famous newspaper victory.
About 10,000 babies were born worldwide with missing arms and legs and similar defects after their mothers took thalidomide during pregnancy, which was marketed as a treatment for morning sickness.
When it was launched in Britain in 1958 the drug had not been subjected to the rigorous standards of testing which are applied to medicines today – and in America, the regulatory authorities even refused it a licence. It was withdrawn from the world market in 1961 after its catastrophic teratogenic effects – disturbance to the growth of the embryo in the womb – became clear.
As editor of The Sunday Times in the 1970s, Sir Harold led the campaign for justice for the thalidomiders, fighting court injunctions and risking jail. It was a legendary coup for investigative journalism, which culminated in 1973 when Distillers, the company that distributed the drug in Britain, agreed to pay £20m into a trust for the future care of those affected by the drug.
The needs of survivors have grown as they have aged. There are 462 thalidomiders in Britain, now aged in their late 40s, who receive on average £18,000 a year from the Thalidomide Trust, depending on their level of disability. Many struggle to pay for specially adapted equipment and are demanding that the Government, which has never compensated them for the disaster, double that sum.
Sir Harold, 81 – still wiry, bright and eager although physically frail – denounced governments of all hues for their failure to acknowledge their role in the thalidomide scandal.
Sitting beside survivors campaigning for improved compensation, he said: "This was a government responsibility. This was a drug disaster fathered by a lackadaisical drug regulatory system. It didn't happen in the US because they had a better regulatory system. It was propagated by every newspaper and the BBC that no one could have predicted then that a drug could cross the placenta. We proved that was a lie.
"The thalidomiders are now in the final third of their lives, and they are suffering increasing disability. Not a single government has recognised that with power they inherit responsibility. This was a shirking of responsibility again."
Sir Harold, who has lived in New York since the 1980s and is in Britain to promote his autobiography, said he had expected the thalidomide story to have a happy ending, but when he contacted a number of those whose cases he had taken up three decades earlier, he found that it had turned into a "very lurid story" instead. "The point of this is to press the Government and Parliament to finally acknowledge their responsibility," he said.
Nick Dobrick, 49, a thalidomider and an organiser of the campaign for more state help, said a survey commissioned by the Thalidomide Trust this year of 108 survivors had found that they had an average of six chronic health problems each, including arthritis, epilepsy, poor vision and palsy.
"Many are living in bodies 25 years older than their age. They suffer from high unemployment, high costs of disability. Those in work are being forced to retire early and they lack pension rights. This is not about entitlement, this is about putting a wrong right."
"The average thalidomider with no arms should receive an extra £18,000 a year to help meet their needs," he said. "The total costs will fall as thalidomiders die and in 20 years we expect the total cost to be no more than £3m a year. If we don't meet their needs today, they will cost the NHS a lot more later on."
Campaigners say that high inflation during the late 1970s eroded the value of the average payment, which fell by a third between 1973 and 2004. An improved settlement agreed by Diageo, which took over Distillers, restored the real value of the payment to its 1973 level but did not allow for the increasing age, infirmity and needs of the survivors.
The veteran disability campaigners Lord Jack Ashley and Lord Alf Morris back the campaign and 265 MPs have signed an early day motion in support. They point to support provided by governments in other countries. Italy has recently signed a settlement, and thalidomiders in Germany and Ireland have been receiving pension payments for years (Germany doubled their value last year). Canada and Sweden have paid lump sums and the Spanish government has opened negotiations with thalidomiders.
Lord Morris said: "What is morally wrong ought not to be legally permissible. People who have been grievously disabled for years have been given a thimbleful of practical help."
A Health Department spokesperson said: "We have the greatest sympathy for patients and families affected by Thalidomide... Representatives of the Trust have met Mike O'Brien, Minister of State for Health Services and are due to [meet again] to further discuss their concerns."
Single mother: 'I have to bend so much I have injured my back'
Mikey Argy, of East Sussex, is a single mother with two children aged nine and 10. Aged 47, she is one of the youngest thalidomiders, born with foreshortened arms.
"I live off the Thalidomide Trust fund of around £18,000 a year. It is not enough. I have a specially adapted car which cost £16,000 for the adaptations alone. I have raised the kitchen surfaces in the house but I need a new kitchen because I can't put things away in the drawers. I have to bend so much to reach things with my arms that I have injured my back and it is difficult to sit down.
"I really need to adapt the house completely to prevent any further collapse in my back. I was bending down to reach the fire the other day and I burnt myself. I need a lot of space because I have to bend to do anything. I really need light switches and electric points positioned both high and low so I can turn them on and off with my hands or my feet.
"My bedroom is too small for me to reach things so someone has to come in and put my clothes in the drawers. These are the challenges we face."
Living alone: 'My expenses are going to increase'
Lorraine Mercer, 48, born with no arms and legs, lives on her own in a specially adapted flat near the south coast.
"I have carers on a rota who come in to look after me. They have to do everything. Social services pay some of the cost. But I have to contribute to it too. It is hard. The carers come in for 32 hours a week but it is not enough. My needs are going to increase in the future.
"The equipment I need is very expensive. The minute you go in somewhere and they see you are disabled the price trebles. There is a big difference between what the Government provides, which is bog standard, and what people actually need. You may get a grant of £500 for an electric wheelchair which may end up costing £5,000.
"I live alone in a flat. It has electric doors so I can move around. But I really need more help. One indoor wheelchair I had to pay £18,000 for. I have a car which is an adapted Ford Transit van. It cost £28,000 for all the adaptations. I had to have an oxygen supply fitted, with space for the cylinders, because I get headaches. I had to find the money for the car myself. What price do you put on independence? If you take my mobility away you take away my independence."
Married couple: 'We should get what we need from the Government'
Darren and Louise Mansell, from Cheltenham, married last year. They met when they were teenagers in 1979 at a holiday home in Jersey. They went out together for three years but the relationship did not last. Later they each married somebody else, and each had two children. After both went through divorces, they made contact again, and rediscovered their old love.
Louise published her autobiography No Hands To Hold, No Legs To Dance On earlier this year. The title was taken from a Commons speech by Jack Ashley at the height of the 1970s battle for compensation. Louise, 48, said: "Darren sent me a Christmas card a couple of years ago. I had just had a kidney transplant and my marriage had broken up. It was a difficult time. Then we got together."
Darren, 47, added: "We are not the worst off among the thalidomiders. I have a job as a finance support manager with the police. I drive myself to work every day. If I didn't have a job we would probably struggle. But we are part of the campaign to win better support for other thalidomiders.
"Thalidomiders know what they need. We should be able to go to the Government and get it."Reuse content