What's happened to Thalidomide babies?

 
Thalidomide-affected man

Fifty years ago, the sedative Thalidomide was withdrawn after thousands of mothers gave birth to disabled babies. That ageing Thalidomide generation now faces rising care bills - but some hope a possible Nazi link to the drug could bring more compensation.

In November 1961, I was five months old. My family had no idea why their otherwise healthy baby boy had been born with short arms, twisted hands and no thumbs.

But by the end of that month, the truth was finally out in the open.

After a German newspaper reported that Thalidomide was the likely cause for the mysterious spate of disabled babies born in Germany since 1958, the drug's producer, Chemie Gruenenthal, caved in to growing pressure, and on 26 November withdrew all products containing Thalidomide from what had been very lucrative, over-the-counter sales.

A few days later, Thalidomide's British licensee, Distillers, followed suit in the UK. But by then, the damage was done.

Thalidomide has strong sedative properties and many women in the early weeks of pregnancy had taken it to ease their morning sickness, utterly unaware its effect on the unborn child can be teratogenic, or "monster-forming".

Frederick Dove

Fred Dove
  • Born in Hamburg, West Germany, in June 1961
  • Thalidomide-affected hands and hips
  • Five hip operations as a child
  • Grew up in Germany, Nigeria, Netherlands, UK
  • Taught in Sudan 1985-89
  • Joined the BBC World Service in 1989
  • Presented Outlook from 1998-2008 and now occasionally hosts World Briefing
  • Former captain of England's Disability Cricket XI

Limbs can fail to develop properly, in some cases also eyes, ears and internal organs. No-one knows how many miscarriages the drug caused, but it's estimated that, in Germany alone, 10,000 babies were born affected by Thalidomide. Many were too damaged to survive for long.

Today, fewer than 3,000 are still alive. In Britain, it's about 470. Among the nearly 50 countries affected are Japan (approximately 300 survivors), Canada and Sweden (both more than 100), and Australia (45). Spain's government only recently acknowledged the drug was ever distributed there. No-one knows how many Spanish survivors there are. It could be hundreds.

After 1961, the drug didn't disappear - medical researchers discovered it can be extremely effective in certain treatments. Stringent precautions should be taken, particularly with women patients of child-bearing age. But sadly, in Brazil, where the drug has been widely used in treating certain leprosy symptoms, there is now another, younger generation of disabled Thalidomide survivors.

Just as the drug's effect in the womb seems totally random, so too was the compensation received. In recent years, UK survivors have won concessions from the government, the tax authorities and Distillers' successor company, which has boosted current average compensation pay-outs in the UK to around $63,000 (£40,000) a year.

Start Quote

There is overwhelming circumstantial evidence that it was tested as part of their [Nazis'] search for an antidote to nerve gas”

End Quote Martin Johnson UK Thalidomide Trust

But elsewhere, survivors still get nothing, or very little. Of today's 6,000 estimated survivors around the world, nearly half fall under the compensation deal in Germany. That currently provides a yearly maximum of about 13,500 euros (£11,840), which does not cover the needs of those with multiple limb deficiencies. Many have no independent income and require constant care.

Campaigns for higher compensation are gaining support - in Germany and elsewhere. Progress has been slow, but that could change dramatically, if proof is found that it was not Chemie Gruenenthal which discovered Thalidomide, as has always been claimed, but scientists working for the Nazi regime.

Gruenenthal patented Thalidomide in the mid-1950s. But investigations in the past two years have confirmed that the German brand-name - Contergan - was owned by the French pharma-company, Rhone-Poulenc, during the early 1940s, when it was effectively under Nazi control.

It's also now becoming clear that Gruenenthal was part of a post-war network of German scientists and businessmen who had played leading roles during the Nazi era. Immediately after the war, for example, Gruenenthal employed Dr Heinrich Mueckter as chief scientist, who was sought in Poland on charges of war crimes after conducting medical experiments in prison camps, during which hundreds of prisoners may have died.

Thalidomide child in 1968 The severity of the condition varies

"Gruenenthal taking on someone like Dr Mueckter is one of the key factors we must highlight in the Thalidomide scandal," says Gernot Stracke, a leading spokesman for survivors in Germany.

He adds: "To my knowledge, no representative for the German government has yet made any public comments about Thalidomide's possible roots in the Nazi-era, or whether the government would accept greater liability and offer more help to survivors if proof of such a link were found."

Martin Johnson, director of the UK Thalidomide Trust, and Professor Ray Stokes, of the University of Glasgow, are preparing to publish a book after investigating Thalidomide's possible Nazi origins.

Mr Johnson says: "Although, at this stage, we cannot prove that Thalidomide was definitely developed and tested in prison camps by the Nazis, there is overwhelming circumstantial evidence that it was tested as part of their search for an antidote to nerve gas."

For the survivors, decades of coping with stunted, twisted or missing limbs has meant greater wear and tear on remaining joints and muscles, and virtually guaranteed the premature onset of arthritis and chronic pain.

Many who managed to go out and work have already been forced into early retirement, while others who used to rely on their parents for everyday care, can no longer do so. Every year, more and more are becoming totally dependent on other family members, on social benefits or health insurance payouts - or on charity.

Which is why, on 26 November - 50 years on - we, the German survivors, will march, waddle, limp or roll in wheelchairs from the Brandenburg Gate to the Federal Chancellery in Berlin.

To celebrate that we are still alive, and to remember those who never lived.

 

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  • rate this
    +3

    Comment number 203.

    What is this nonsense? "It was developed during the Nazi era so give us more money" ??

    What happened to victims is and was a terrible thing but this is a pathetic news article.

  • rate this
    +1

    Comment number 202.

    JRobson sum's it up precisely. My mother too was offered and declined to take this awful drug. I find it difficult to contemplate what might have been. My heartfelt sympathy to those who were less fortunate.

  • rate this
    +2

    Comment number 201.

    Cowardly newspaper editors- The Sunday Times somes to mind, refused to make public the facts obeying an injunction that, had they published before it was applied for by Distillers, would have limited the number of women who continued to take it. The second is our then Government who neither tested the drug properly nor refused the injunction.

  • rate this
    0

    Comment number 200.

    Thalidomide remains a useful drug in cancer treatment, and is effective as a treatment of morning sickness. The issues arose due to an error in scaling-up from the laboratory setting to an industrial one. The former created one optical isomer, the latter both. The s-enantiomer in the drug, present due to this oversight, is all that was wrong. Not everything the Nazis did was evil.

  • rate this
    +1

    Comment number 199.

    "196. rideforever
    The old fashioned way of having children has stood the test of time for 400,000 years - we don't need to be told how to do it."

    And how many people have died during pregnancy or childbirth? Like it or not, medicine has radically reduced mortality rates. And yes 'morning sickness' can kill.

  • rate this
    0

    Comment number 198.

    Sad and ironic. 20 years ago I worked for May and Baker, a pharmaceutical firm most famous for saving Winston Churchill with it's drug Sulphapyridine developed in 1939 for the treatment of bacterial pneumonia. After I left it was taken over by Rhone-Poulenc.

  • rate this
    +1

    Comment number 197.

    iN 1960'S I EXAMINED A 12 YR BOY - THALIDOMIDE VICTIM. legs stop just below knees. Arms below elbows. Could fully undress/dress faster than I - inc. doing his tie! Liked playing soccer on his stumps without his metal legs.
    he was bright & happy. One hopes he lived well - so totally able to act almost normal! Bright too. He was at a sp[ecial home for invalids.

  • rate this
    -2

    Comment number 196.

    Just goes to show that you shouldn't trust Doctors, Scientists and new fangled drugs.

    The old fashioned way of having children has stood the test of time for 400,000 years - we don't need to be told how to do it.

    The medical industry is certainly extremely corrupt rushing into production money making drugs with as little testing as possible, to maximise profits.

    Stay well away.

  • rate this
    0

    Comment number 195.

    If the drug was released, with a warning that it had not been tested on pregnant women, then the people prescribing/buying the drug are responsible for not heeding the warning. Nowadays in the UK the NHS would foot the bill if it had been prescribed.

    Regardless of all this, we should all have the compassion to see that these people are adequately provided for.

  • rate this
    0

    Comment number 194.

    I don't follow, irrespective of a possible Nazi connection, there appears to have been a non sinister purpose in its development. It may have been tested in concentration camps, very wrong, but to those victims not to the subsequent thalidomide victims.

    One disastrous drug amongst so many that have brought relief. As noble as this is, is it a case of pin the compo on the german tax payer?

  • rate this
    0

    Comment number 193.

    I don't think the nazi argument works, but...
    Was there an organisation that had to approve a drug before it could go on sale? If so, was this a government body? In that situation you would expect the government to be responsible for paying adequate compensation to cover the expenses incured by the victims. (Btw, for many this is likely to be much more than £40k a year.)

  • rate this
    +1

    Comment number 192.

    This might be heresay, but I thought it was only due to a simplification in the manufacturing process after release that was the cause of the problems. It was trialled with only one optical isomer of the drug, but eventually made in a process that didn't discriminate between the two isomers. One isomer is teratogenic. Whoever changed the process would be to blame, probably not the Nazis.

  • rate this
    +1

    Comment number 191.

    To me, Thalidomide emerged as the most thoroughly under-tested drug. Its certain 'planned' medicinal properties were obvious - and there was an urgent clamour for it. Its other devastating properties just weren't recognised quickly enough. Its legacy is tragic but I don't think any single source can be held accountable for compensatory payments this long after its gone. Certainly not the Nazis.

  • rate this
    0

    Comment number 190.

    This will be quite chilling for those who do not know how the pharmaceutical industry really works and how corrupt the whole system is when it comes to which Billion Dollar"miracle"drugs are released on an unsuspecting public and where the majority of the research originates.
    There is endless documentation showing various companies have continued to sell damaging drugs and nothing has changed.

  • rate this
    +1

    Comment number 189.

    @rnt20 as a chemistry student studying the effects of Thalidomide, it would not have mattered if the only gave the right molecule to the patients as a process in the body makes both of the molecules from this single molecule including the poisonous one. The real problem was the inadequate testing done by all chemical companies on the matter.

  • rate this
    0

    Comment number 188.

    I was born in 1947. A gradeschool (1-6) classmate had a Thalidomide short arm so the effects were showing up before the '50's.

  • rate this
    +1

    Comment number 187.

    The work of Frances Oldham Kelsey (Administrator for the U.S. Food & Drug Administration, in 1960) should be noted here. Unlike officials in other countries, she refused to bow to pressure from the manufacturer to approve the drug. During this delay, word of the first deformed babies came out. Her insistence on further safety testing meant that there were NO Thalidomide babies born in the USA.

  • rate this
    +1

    Comment number 186.

    # 12. rnt20

    This is a common myth.
    Thalidomide changes between the left and right handed forms in the human body anyway so the "pure" form wouldn't have made a difference.

    In addition this difference between left and right was only observed in rabbits. It didn't occur in humans, both forms caused birth defects to a similar degree.

  • rate this
    -1

    Comment number 185.

    Lol, the BBC still writing stories about Nazi's.

  • rate this
    -4

    Comment number 184.

    "That it was developed by German scientist during the Nazi time is irrelevant...It was not developed to damage or to kill"

    How do you know? The Nazis had an interest in things which could damage and kill people, millions of people. They could have paid, or forced, this doctor to develop the drug for un-ethical purposes, even if he was not doing it of his own free will.

 

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