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Last Updated: Thursday, 1 April, 2004, 14:40 GMT 15:40 UK
'They just didn't know what it would do'
By Caroline Ryan
BBC News Online health staff

Boy born after his mother took thalidomide
Thalidomide disrupted limb formation
Fifty years after the drug thalidomide was created, campaigners fear another baby could be born disabled in the UK.

Thalidomide was withdrawn in 1961 after around 10,000 babies had been born with disabilities such as the characteristic stunted arms or legs. Some babies were born with no limbs at all.

But the drug is making a comeback. It is being investigated as a treatment in around 100 illnesses including cancer, Aids, leprosy and arthritis, and 4,000 people are estimated to be currently taking thalidomide in the UK.

Freddie Astbury, whose mother took thalidomide, was born with all four limbs affected. He said: "The drug has come back to haunt us.

"But if the drug can help people, then so be it."

Freddie Astbury
One day, I know I'm going to hear that a baby affected by thalidomide has been born.
Freddie Astbury
The German scientists who developed the drug did not realise he was producing a mixture of two types.

One was safe, and an effective treatment for morning sickness and depression. But the other had a catastrophic effect on the development of the baby in the womb.

However, even if he had realised this, the tragedy would probably not have been averted, as it is believed that the safe version is converted into the dangerous one within the body.

Anne Horton, who considers herself "one of the lucky thalidomiders" because she was born with just one affected arm, says she would be happy if there could be a "positive" end to the thalidomide story.

But Anne, whose mother took just a couple of thalidomide pills during her pregnancy, said it was clear scientists couldn't offer a guarantee no more children would be affected.

It is feared women may take the drug before they know they are pregnant.

Scientists have put in place measures aimed at eliminating the risk to women of childbearing age.

Women themselves should be given a monthly contraceptive injection to ensure they do not conceive.

Men using the drug are also recommended to use condoms, as thalidomide is present in semen.

Living with guilt

Anne and Freddie both say their families had to deal with guilt that their babies were born disabled.

THALIDOMIDE TIMELINE
1953 - Drug created in Germany
1957 - Marketed to the public as a 'wonder drug' for insomnia, colds, coughs and headaches
1958 - Licensed in the UK
1961 - William McBride, an Australian doctor , wrote to the Lancet after noticing a sudden increase in the number of deformed babies born at his hospital - all to mothers who had taken thalidomide.
The drug was withdrawn from use in November that year.
1968 - First UK compensation settlements reached with manufacturers Distillers Biochemicals Limited
1998 - Approved by the US's Food and Drug Administration as a treatment for a complication of leprosy
2004 - Thalidomide available on a named patient basis and as part of clinical trials in the UK
Their mothers were two of thousands of pregnant women who took thalidomide for morning sickness.

Only around half of the affected babies survived - 455 of them in the UK.

Freddie, now 43, said: " Like many parents, mine felt guilty for taking a drug during pregnancy that had that effect.

"But they didn't know what the drug was going to do."

Anne was born in 1962, two months after thalidomide was banned in the UK.

She said: "It was terribly upsetting for my parents when I was born. My mother didn't see me for two days, and they were told that I probably wouldn't make it.

"They were dealing with guilt. I think my mother felt better while I was at home because she could look after me there.

"But I think it was a great relief to my father when I began living independently."

It took seven years after the drug's withdrawal for the first compensation settlements to be reached with Distillers Biochemicals Limited, which marketed the drug in the UK.

Sixty-two children benefited from the first payouts, but many families continued to have to fight for compensation throughout the 1970s.

In 2000, Diageo-Guinness. which took over Distillers in the 1980s, promised to continue paying 2.5m a year to the Thalidomide Trust, which oversees payouts, until 2022, when the average age of thalidomide people will be 60.

'Monitoring is key'

Dr Siow Ming Lee, a lung cancer specialist at University College London Hospital, is using thalidomide as a treatment for advanced lung cancers.

He said: "Thalidomide is a very controversial drug. But we are talking about incurable cancers, and we haven't made real progress in treating this disease in recent years.

"Thalidomide stops blood vessels growing in the limbs of developing foetuses. Therefore, we decided to look at whether it could stop cancer from growing by blocking blood vessel development."

He added: "We do have a lot of stringent controls to ensure women who are, or might be, pregnant do not take the drug - even though most of our patients are past child-bearing age.

"But I think the concerns raised by people affected by thalidomide are genuine."

Anne and Freddie say they have both watched the reintroduction of the drug with some trepidation.

Anne said: "It would be really good if it could be used positively. But I have grave doubts that it could ever be used totally safely.

"And so far, it hasn't been proved to be a lifesaver."

Freddie, who is chairman of the campaign group Thalidomide UK, added: "Thalidomide is no wonder drug. And for many of the illnesses it can be used for, there are other drugs which are as effective, and which don't have the same side effects.

"But if it is going to be used, it must be monitored properly."

After recently being able to buy thalidomide over the Internet directly from the pharmaceutical company which makes it, he said the existing safeguards are just not strong enough.

He added: "I fear this is a tragedy waiting to happen.

"One day, I know I'm going to hear that a baby affected by thalidomide has been born."


SEE ALSO:
Thalidomide: 40 years on
07 Jun 02  |  UK News


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