Page last updated at 08:26 GMT, Thursday, 3 April 2008 09:26 UK

Thalidomide: a curse and a blessing?

By Clare Murphy
Health reporter, BBC News

Thalidomide bottle
Thalidomide has shown promise in some cancer treatments

It is 50 years since thalidomide was first introduced on to the UK market as a cure for morning sickness. Those affected by the drug are still fighting for compensation - while others are fighting to access the drug.

Some 10,000 babies were born with deformities after their mothers took the drug - sometimes just once - while pregnant.

The majority were born in Germany, where the pill was invented. Apparently a wonder drug, it was initially seen as a good news story in a country rebuilding itself after the devastation of war.

But the high was short-lived. By 1961, it had been withdrawn from sale after evidence of severe side-effects. The company involved, Grunenthal, paid just over 100m deutschmarks - the equivalent of about 100m in today's money - into a compensation fund for those affected.

You try decades of using short limbs to get about, to open cupboards - it takes its toll. Many of us have managed to lead independent lives - but we want to be able to continue doing so
Guy Tweedy
Thalidomide campaigner

Nothing has gone in since: for many decades the firm argued that it had paid more than its dues and was, back then, operating in a completely different scientific and regulatory climate.

It is however currently in talks to make a new, "voluntary" payment to survivors - mainly the German ones who were exposed to the drug supplied directly by the company. It says it has no responsibility for those whose mothers bought the pill from other firms who at the time held the licence.

But an international coalition of thalidomide victims, including some of the UK's 457 survivors, says this is not good enough. They want one million euros (around 750,000) each from Grunenthal and the German government, to be paid out over 10 years.

At no time did Grunenthal market or sell thalidomide in Great Britain...Grunenthal acknowledges no basis for such demands
Grunenthal statement on claims

"It's what we need to guarantee our future," says UK campaigner Guy Tweedy. "No-one expected us to live this long. But we've done just that, and our bodies have paid the price - we're in pieces.

"You try decades of using short limbs to get about, to open cupboards - it takes its toll. Many of us have managed to lead independent lives - but we want to be able to continue doing so."

More please

The UK victims have in fact been separately compensated by the company which held the UK licence for the distribution of the drug, following a major campaign, and receive on average around 18,000 each year.

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

But this is barely enough, they say, to buy a new wheelchair when the need arises.

Nonetheless, they freely admit they are in a better situation than many of their contemporaries.

While there is a similar compensation agreement in place in Sweden, where again a different company was involved in distribution, in Italy, Spain and Austria, there is nothing at all.

The numbers of victims are not known, and in fact it is only recently that the Spanish government even acknowledged that the drug was used there between 1959 and 1961

There are payments in Germany, where 2,872 survivors - the majority - live, but they are significantly less than those for their British counterparts. People receive a maximum of 545 euros a month, from a fund created by Grunenthal and since topped up by the German government.

Moves are afoot to increase this amount - perhaps double it - and Grunenthal says it too would make a further contribution, although it stresses this would be a gesture on its part, rather than an obligation.

Taking care

And while this generation of thalidomide children fight for more help, a new one has been born.

Ama Sumani
Deported Ghanaian Ama Sumani needed thalidomide to prolong her life

At least three children have been born in Brazil in the past three years after their mothers took the drug while pregnant. There have also been reports of thalidomide defects from Mexico, India, and Africa.

Because while the drug was taken off the market in the early 1960s as a cure for nausea, it was not long before researchers found it was remarkably effective in treating other conditions. By the mid-1960s, an Israeli doctor was using it for ENL, a complication of leprosy.

Grunenthal had by the start of the new century provided nearly 4m tablets - for free - around the world for ENL, although the World Health Organisation has subsequently advised against its use for this because of the risks.

But dozens of other conditions have also appeared to respond well to thalidomide where others have failed - from HIV/Aids to ulcers. It is now increasingly used as a treatment for multiple myeloma, a cancer of the bone marrow.

But it is supposed to be used only under strict supervision. Women taking it are advised to use a monthly contraception injection, or two forms of barrier contraceptives, while men are recommended to use a condom - as thalidomide is present in semen.

That children are being born with defects is testament to the fact that such safeguards are never universally applied.

But it is perhaps ironic that the drug which was once so freely - too freely - available is still not accessible to those who could well benefit from it.

Last month, a woman who was controversially deported back to Ghana from the UK while in the middle of cancer treatment, died.

The drug she needed to prolong her life was not available. It was thalidomide.

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