A Life of Struggle

Do you remember the drug thalidomide?  It was first launched in 1957 by a German company, Grunenthal.  It was sold in 46 countries and marketed to pregnant women around the world as an anti-morning sickness pill.  The drug was banned in the early 1960’s after it was found to cause deformed limbs in the children of women who took it in early pregnancy.  Around 10,000 babies around the world were born with defects caused by the drug, ranging from malformed limbs to no arms or legs.  An estimated 3,500 survive worldwide, and 31 of these are in Ireland.

Thalidomide sufferers are a tenacious bunch of people. They have lived all their lives  with pain and disability and now as they enter their 40’s and 50’s, they are noticing a sharp deterioration in their physical condition and want the government to improve their ‘meagre’ compensation. In 1975 a settlement was made with the Irish government which comprised of a lump sum and a monthly pension for life to supplement the compensation awarded by the German government, which eventually accepted liability.  While Irish authorities never accepted liability for the tragedy, the Department of Health was the regulatory authority for drugs when it was on the pharmacy shelves. The lump sums at the time, when those affected were around 12 years old, amounted to a few thousand euro.  Depending on the level of disability, the pension now ranges from €16-€35 per day.  A lot of sufferers are now in crisis and are having to leave work or are struggling on in jobs they can’t afford to leave.  They are facing difficult life choices and need financial security as they struggle against rapid decline.

Governments all over Europe are sitting down with those affected by thalidomide to sort out a proper financial package and Irish survivors are hoping that the Department of Health will look sympathetically on their case.  The Irish Thalidomide Association hasn’t gone back to the government for support in 33 years.  Surely it’s not too much to ask that they should now be afforded the dignity and justice they so rightly deserve?

With thanks to Roisin Ingle of the Irish Times, for her informative article on this topic.

13 Responses to A Life of Struggle

  1. Deb Acle says:

    The plight of these people is yet another awful tragedy in a very long line created by profit-making companies. I feel for them.

    Of course they need proper compensation. And dignity and justice. And the big drug companies can afford shedloads more than these poor people get.

  2. Baino says:

    Steph why is it the Irish Government’s responsibility, surely it should be the drug company that pays their compensation. We had a class action over here for many years against Hardys who produced asbestos in the day. Consequently many of their old workers are now suffering with asbestosis. It took years but they are finally receiving compensation from the real culprits.

  3. Steph says:

    Debacle – Well said!

    I was lucky enough to be born just before the arrival of this drug into Ireland but as the victims are only a few years younger than myself, I really feel for them in their present plight.

    Baino – you’re quite right in what you say but having looked into the history of the Grunenthal company, I find that the court proceedings at the time found that “Grunenthal could not have predicted the effects of thalidomide on pregnant women and had therefore not been remiss”. This would have given them protection against legal challenge for compensation..

    In response to the tragedy, the German state brought in a law in 1972 to set up a foundation to “to provide assistance to all children with disabilities, not just those damaged by thalidomide. The purpose of this foundation was, firstly, to provide benefits to thalidomide victims, and secondly, to promote people with disabilities through institutional facilities and research projects. Money from the foundation was used to pay thalidomide victims a one-off capital sum in compensation and a life-long pension”.

    How does Grünenthal support the victims today?

    “Grünenthal supports the political initiative of the government fractions in the Bundestag (Lower House of the German Parliament) of doubling the thalidomide pensions because as adults these people need more help and medical care than is covered by current position. Grünenthal GmbH and associate shareholders are currently deliberating concepts regarding what voluntary contributions may also help the victims”.

    Well, I suppose at least they acknowledge that the problem exists 😐

  4. Grannymar says:

    I know a thalidomide victim, and yes I will call him that. I have followed his progress all his life so far. His physical deformity was in his hands. He had five fingers and no thumbs. Surgery was used to force a more ‘normal’ shape in the hope he could be trained to use his hands as we do.

    This young man is now a broad shouldered, heavy set 5′ 10″ high. Unable to speak and with some damage to his brain. He was never allowed to go to a special school or for training, his parents devoted their lives to doing everything for him. Now they have both died and extended family have had to up sticks from the UK and move back to Ireland to look after him. There is no way he can live alone and at this stage residential care might prove a disaster.

    I know he has received a settlement and am told he will never be short of money for his care… but…!

  5. Steph says:

    Thanks Grannymar.

    Your story is so sad. It’s an excellent example though of the struggle faced by so many of the families who were affected by thalidomide.

    The Irish Thalidomide Association is busy collecting hard evidence at the moment to prove to the government that those affected by thalidomide are facing greater challenges than ever as they age. Now 50 years on, many of the more severely disabled are faced with the issue of death of their primary carers.

  6. I was at school with a girl who was a victim of thalidomide. She was one of the sweetest and most tenacious people I ever met. I wonder, given what you say that now they are older, what has become of her.
    It also always makes me wonder about all the drugs that continue to be produced, drugs, which we inevitably don’t discover until after the event, also lead to all sorts of problems. I’m off for a bone density scan next week having recently been told “well, if you’ve been on corticosteroids you’re at risk for osteoporosis”. The medical and pharmaceutical industries are far too keen on supporting each other and making money – managing illness, rather than curing illness – to worry about patients’ real long term health.

  7. Steph says:

    Well-said! AV

    I was only joking with Baino the other day about glancing around my GPs surgery to see if I could spot any ‘Yakult’ promotions, after he highly recommended the product to me for the nth time!

    I insisted on being referred for a bone density scan about 3 years ago as my poor mother is quite literally, crippled with osteoporosis and therefore I know I’m genetically predisposed to the condition. The GP um’d and ah’d about whether a scan was really necessary but I persisted and blow me, if he didn’t ring back a week later to say that my hips are already osteopenic (early stage of osteoporosis) and to prescribe a calcium supplement.

    We are the lucky generation who have the technology at our fingertips to prevent/lessen these degenerative conditions so we should be using it!

    Good luck with the results of your own scan. I can tell you that the best preventative measure against developing osteoporosis is to take regular weight-bearing exercise – lots of walking!

  8. virtualnexus says:

    Called in from Vanilla’s – I met a girl who had been affected by thalidomide at Durham Uni while I was there. Determined and tenacious, she was taking a degree in biology despite having no arms. Strangely, she is the only person I have ever met, despite being of that generation myself. Good post.

  9. Steph says:

    Cheers! Virtualnexus and welcome!

    Me too! I’m of a similar age and yet I’ve never known anyone affected by thalidomide. When you consider that only 31 survivors remain in Ireland and that the number is only ever going to decrease, it’s hardly a huge volume of people for the government to support. I really feel they’re entitled to much greater support than they presently receive.

  10. Dr.JaneDoe says:

    Yet another argument for the introduction of a similar system to New Zealand’s ACC (Accident Compensation Corporation) and an automatic system of no fault compensation so patients don’t have to be able to afford lawyers and go through all that hassle.
    The system here is fantastic, it ensures everyone that has been harmed by anything from medical negligence to recognised complications or incidents where no one is at fault, gets an appropriate amount of financial compensation from the Government as well as free access to any support services that are needed for as long as needed.
    Remember though, for Ireland to have that it is quite likely that taxes would need to increase. No tax breaks in NZ! I am taxed at a flat rate of 40% on ALL my earnings! quite the shocker at first.

  11. Steph says:

    Hi! Jane

    NZ has it so right! I know it’s tough on people on the bottom rung of the ladder but it makes so much more economic sense to tax everyone at a high flat rate so that a decent health service can be provided along with an automatic system of no fault compensation.

    Just look at the mess by comparison in Ireland with tribunals and medical negligence claims and a health service that no one is happy with 😦

    Jane – I saw an apt placard at the health protest in Dublin last Saturday…

    HSE = Harney’s Sick Experiment! 😀

  12. Bendy Girl says:

    This is an awful situation Steph, thanks for letting us know about it. Re osteoporosis, it’s not supposed to be linked to eds, but it really does seem more common at earlier ages for us. I’m due for my (years late) dexa scan in the next couple of weeks, dreading it! BG x

  13. Steph says:

    Bendy Hi!

    I presume when you say you’re dreading the scan, you mean you’re dreading the results as opposed to having the scan. From what I remember of it, you simply fill out a questionnaire and they then weigh you to work out what your bone density mass should be for your age. The scan itself takes quite a long time so make sure that you’re in a comfortable position before the start.

    I know that weight-bearing exercise is a problem for you so that’s all the more reason to find out if your bones are maintaining the correct density and if not, to implement treatment to reduce deterioration. You don’t need fractures on top of everything else!

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