Events | 2010.01.15
Thalidomiders win apology, 50 years on
Government issues long-awaited apology and a new £20m compensation package to 466 thalidomiders
Fifty years after the one of the worst disasters in medical history, hundreds of survivors of the thalidomide scandal today got an apology from the government and a new £20 million compensation package.
There are 466 thalidomiders, as they call themselves, all of them in middle-age, born between 1958 and 1961 to mothers who unwittingly took the drug Distaval for morning sickness in the early months of pregnancy. The babies suffered a variety of deformities, mostly to both arms, both legs, or all four limbs. Some also suffered damage to their internal organs.
Today Mike O\'Brien, minister of health, announced a new funding scheme that will help survivors cope with the changing needs of age. He also offered what campaigners said they wanted even more – an apology.
"The Government wishes to express its sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the drug thalidomide between 1958 and 1961," he told the House of Commons.
"We acknowledge both the physical hardship and the emotional difficulties that have faced both the children affected and their families as a result of this drug, and the challenges that many continue to endure, often on a daily basis." He knew, he added, "that a lot of thalidomiders have waited a long time for this".
"The apology is just as important as the financial settlement," said Guy Tweedy, one of the thalidomiders leading the campaign for a better deal.
"It is important not only to thalidomiders but also to parents of thalidomiders and the parents who lost thalidomiders. It should have happened 45 years ago. No minister has ever really stepped up to the plate and said the right thing."
The money will help people to buy wheelchairs and adapt their houses and cars for a phase of life they were never expected to see. "They didn\'t think we would be alive today. They thought we would all be dead by 2007," he said.
Thalidomiders already receive support from a fund set up by Distillers, manufacturer of the drug, and continued by Diageo which took over the company and has honoured the commitment. But the payments are not sufficient and not flexible enough to meet people\'s changing needs. Many of the thalidomiders have found ingenious ways to overcome their disabilities, using feet and hands which appear to grow straight from the trunk in unusual ways so that they can move around, write, paint and live fulfilling lives. But these adaptations have sometimes caused new physical problems.
The extra money "will help to meet their complex and highly specialised needs, and to reduce further degeneration in their health," said Mr O\'Brien. The £20 million will pay for a three-year pilot scheme, which will be run by the thalidomide trust – administrator of the existing fund. "It will use its considerable expertise and knowledge of its members needs to distribute money to survivors. They, in turn, will invest the money in adaptions and other preventative measures that are likely to reduce long-term demands on the NHS," said Mr O\'Brien.
Mr Tweedy said he was happy with the funding, although "you can\'t put a price on disability – on a person with no legs and no arms".
The thalidomiders have been campaigning for government support for some years, backed by former Sunday Times editor Sir Harold Evans, whose paper championed the cause in the 1970s. The government should bear its share of responsibility for what happened, they said.
They blamed the government for allowing the drug onto the market without tests to ensure it would not harm the foetus, following assurances from the manufacturer that it was safe. In the United States, a staff member of the government\'s Food and Drug Administration, Dr Frances Kelsey, refused to grant the drug a licence without further proof of safety in the womb.
In 1957, the World Health Organisation had warned the UK that its lack of adequate pharmaceutical regulation was courting disaster. It took the thalidomide disaster to reform the system, bringing in the sort of regulation we have today. The Medicines Act 1968 laid down stringent standards that had to be met for the safety and efficacy of drugs.
For more information, please visit
http://www.guardian.co.uk/society/2010/jan/14/thalidomide-apology-government
