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Thread: A bitter pill

  1. #1

    A bitter pill

    01 October 2002 11:08 BDST

    A bitter pill

    01 October 2002

    "It was lust at first sight," says Janette Cooke, shooting her husband, Bob, a mischievous look. Janette wasn't supposed to get married or have an active sex life. Born with no arms or legs after her mother took the drug thalidomide for morning sickness, she was dismissed as having only months to live. But not only has Janette survived to the age of 40 - with every indication that she has many more years ahead of her - but she was also the first thalidomider with no limbs to give birth. Kelli-Anne, who was born by Caesarean section, is now a bonny 16-year-old.

    Forty years ago the world woke up to one of the biggest medical tragedies in history. Around 10,000 babies were born suffering from devastating affects of the drug, ranging in severity from a thumb with three joints to children who were deaf, blind, without speech, brain damaged and limbless. Many also suffered internal complications. It is believed that around 1,000 such children were in born in Britain, where the drug was prescribed from 1958 to 1961 for morning sickness, nervous tension, migraine headaches and as a general sedative. Half of the babies died.

    The drug was first mass-produced in Germany in 1957 by Chemie Grunenthal. The United States, with its more stringent drug rules, refused to license it. (The scientist who blocked the sale of thalidomide, Dr Frances Kelsey of the Food and Drug Administration, was subsequently given the President's Award for Distinguished Federal Civilian Service.) At the time, drugs were not routinely tested on pregnant animals. It proved a particularly harsh lesson.

    Chemie Grunenthal reluctantly withdrew thalidomide in November 1961 and Distillers, which manufactured the drug in Britain under licence from the German firm, followed suit the next month. The British government, however, did not issue a warning until May 1962.

    Hurt and furious, the parents started legal proceeding against Distillers. The first settlement was reached in 1968. An "averagely" disabled child was awarded between £10,000 and £15,000. All settlements were made out of court and Distillers never admitted liability. Some parents felt there had been too much coercion to get them to accept settlements that were far too small to accommodate the real needs of their children. A campaign was mounted and Distillers agreed in 1973 to additional financial support over 21 years under a covenant. The Thalidomide Trust was set up to administer the extra funds and money given by the government to offset tax liabilities. When the period was up, further campaigning in 1995 led to Guinness, then owners of Distillers, agreeing to extend the covenant to 2009. In 2000, Diageo, the company formed from the merger of Guinness and Grand Metropolitan, agreed another extension to 2022 in the form of a £32.5m covenant, paying out £2.5m a year. Since its inception, the fund has registered a total of 484 beneficiaries. Since 1974, 29 have died. The money is allocated according to the degree of disability, to be spent on such things as adapting homes and cars. The average annual allowance is around £11,000. No British government has ever compensated those affected, and Gordon Brown, the Chancellor of the Exchequer, has refused to pay the £6m tax rebate on the last extension.

    And yet still more victims are coming forward. The Manchester-based solicitors Pannone & Partners are currently representing 35 people who claim to have been affected by the drug and are seeking compensation. "We get about three or four new enquires every month, and I think it will carry on for some considerable time," says Patricia Noone, a partner at the firm. "Perhaps they didn't realise that compensation was available, or maybe their parents have died and they didn't want to make a claim while they were alive. Others, who didn't have a major disability, are now finding that as they grow older, the effects are more obvious and they are suffering deterioration."

    The scandal had wide-ranging repercussions in Britain. The government formed the Dunlop Committee, which defined new standards of drug testing. The Disabilities Act of 1970 was introduced, providing statutory obligations for disability access. The 1973 Consumer Protection Act afforded redress to consumers for faulty products. And the Mobility Scheme was set up to help provide the disabled with adapted cars.

    But what of the babies? Janette Cooke is typical of many thalidomiders. She lives in a pleasant home in Manchester, has a doting husband and daughter, and is largely content. With the aid of an electric wheelchair that she operates with her chin, Janette goes clubbing, does her own shopping, plays bingo, goes to the theatre and eats out in restaurants. Carers come in daily for up to six hours to do the housework and attend to her personal needs.

    Janette met Bob, who is able-bodied, in a respite unit where he was recovering from a severe bout of MS. She was 23 and he was 36 and separated. Almost two weeks later, Janette asked him if he wanted to go to bed with her. "I thought he was a bit of all right," she explains with a grin. "I thought he would be a one-night stand, but I'm still with him."

    Bob, now 53, is clearly still very much enamoured of his wife, who appears the dominant partner in the relationship. He remembers clearly the first time he saw her. "I took one look at her and thought: 'What the hell have I got to worry about?' It was her determination that attracted me. Nothing ever fazed her." The couple got engaged and married the following year when Janette was eight months pregnant.

    "I couldn't ask for a better life or a better husband," says Janette. "It was a tragedy then, but it doesn't mean that it's got to be a tragedy for the rest of your life. I could sit here thinking 'poor me', but I'm not that type of person.

    I'm normal, but different. I joke about it, at night I say I'm going out legless and I'm coming in legless."

    Tomorrow night Janette appears on the BBC 2 documentary Thalidomide - Life at 40 with two other people affected, Gary Skyner and Kevin Donellon, who also lead happy lives. The media often portrays thalidomiders as chirpy "survivors" who drive cars, take flying lessons and whiz around in their wheelchairs. Indeed, Dr Martin Johnson, the director of the Thalidomide Trust, says: "The surprising thing is that so many people have coped very well. It's an amazing testimony to the power of the human spirit."

    But while their achievements should, of course, be celebrated, that's not the full picture, and a number of people affected by the drug find such blanket "happy families" portrayals intensely irritating. Forty-three-year-old Tina Gallagher lives in Bradford and studies sociology. "I get very cheesed off when people say how wonderful it is to be a thalidomide," she says, "and how wonderful it was to get compensation. Believe me, it wasn't. It was a help, but it wasn't a wonderful life. Nothing could compensate for the way certain people have had to live. I had a lot of friends who were just interested in what they could get out of me. Most people, when you mention compensation, just see pound signs. Part of the reason I've never married is because I didn't want someone to marry me for what I had. Sadly, I never met anyone who wanted me for me."

    Dr Johnson knows of at least two or three people affected by the drug who have committed suicide. And for others, the misery continues still. "We have beneficiaries whose appalling childhoods are casting a continual blight on their adulthood," he says. "I know of cases where children were sexually abused, physically abused and situations where parents took advantage of the funds. Most of the parents, after their initial shock, have been very loving and encouraging, but unfortunately there have been a few who have treated their child as the goose that laid the golden egg. The parents of one of our more disabled ladies plundered her funds when she was a child. She reached the age of 21 to discover they had used up her compensation money to set up their own business. She was put in her bedroom every time a visitor called round, and the father built a wall at the back of the house so the neighbours couldn't see her."

    Janette is sitting in her wheelchair at her dining-room table. A woman's magazine lies open on top of a briefcase laid flat in front of her. The case provides enough height to enable Janette to turn the pages of the magazine using her mouth. Her childhood was "crap", she admits. Her father "has never been around" and she felt her mother was largely unsupportive. In fact, the pair haven't spoken for 10 years, following a disagreement over Janette's compensation.

    When she was seven or eight, the local children in Wythenshawe, Manchester, would dress her up as Guy Fawkes and push her around the streets plying for money. "I thought they were my mates," she says, wryly. As a child, she was made to wear "rockers" to enable her to walk. Her "flipper" feet were inserted, and she would have to swing one foot in front of the other. One unkind shove and she was flat on her face. She felt equally uncomfortable when fitted with gas-powered arms and cosmetic legs, both of which she eventually discarded.

    Like a third of thalidomiders, Janette's body is beginning to wear from the unnatural movements she has to make to compensate for her disabilities. Her neck is so painful (she uses her mouth to write, type and operate the TV remote control) that she can no longer bend down far enough to eat from a plate on the table or turn pages.

    "I have thought: 'If I could just have one day with one set of limbs...'" she admits. "I would like to have legs so that I could wear a miniskirt to show them off. I would love to be able to hold Kelli-Anne for one day, rather than her cuddle me. I would like just to hold Bob's hand. I would love to know what sand feels like, or the waves on your feet. I wish I could wear my wedding ring on my finger instead of round my neck. It's silly little things. I did ask God one day, 'Why me?' but I didn't get any answer."

    Some people believe that the drug has affected their own babies. Nine children born of members of the group Thalidomide UK have thalidomide-like deformities.

    The vast majority of doctors, however, believe that a second generation is impossible. Dr Claus Newman, the Thalidomide Trust's medical adviser, and a world expert on the effects of the drug, says: "It's a complete fantasy. Their parents are not thalidomide, although for obvious reasons, they were mistaken for thalidomide people. It's all genetic, there is no evidence whatsoever that thalidomide causes mutations."

    And what of the parents? Most rolled up their sleeves, got on with the job and the babies thrived as a result. For a few, however, the shock, the stigma, the disappointment and the guilt were simply too much and they took their own lives.

    Marriages broke up. For some parents, the pain had a particular sting as the husband, a doctor, had prescribed the drug for his wife.

    "If there was a tendency on the mother's side, it was to be a bit over-protective," says Dr Johnson. "There's still an undercurrent of guilt with many mothers because they took the tablet. Some still nurse anger that it happened."

    Agnes Turner-Bone, 73, who lives in Liverpool, took just two tablets containing the drug for severe morning sickness. A nurse offered her a cigarette before breaking the news that her son, Kevin Donellon, now 40, had "very short arms and legs".

    "I pulled back the blanket and I've never had such a shock in all my life," remembers Agnes. "I couldn't believe what I was looking at. A very, very small body, with feet attached to the buttocks, and two fingers on the left shoulder and two-and-a-half on the right. No arms or legs in sight. I just slumped back."

    The hospital told her that she could leave Kevin and forget all about him if she wanted to. One relative suggested that he be smothered. But Agnes was having none of it. Three or four months later, a paediatrician came to the house and asked her about the pregnancy. When Agnes told him the name of the drug she had taken, he informed her that it had been responsible for her son's disabilities.

    "That was worse than anything, because I thought that I had done it," says Agnes. "I felt guilty, sad, stupid and angry, and I wanted revenge. I was put on tranquillisers for three days to calm me down."

    At times, Frances Skyner, also from Liverpool, still cries herself to sleep. Her son, Gary, 42, a successful stand-up comedian, married with two children, was born with shortened arms. Frances also vividly remembers seeing her son for the first time. "I was like a lunatic. You just scream and get so upset.Something dies inside you.

    "My husband and I got divorced when I was 28. There was a lot of pressure, with Gary being the way he was. I don't think his father could accept it. He said he would never ride a bike or get married. But Gary's done brilliantly; I'm very proud of what he's achieved. But you see people looking at him, and you hear remarks, and if you're a mum you really do feel it."

    Many assume that thalidomide came, like many of its victims, to an untimely death. But not only is it being manufactured in Britain, it is being used around the world for an increasingly wide range of illnesses, such as immunological disorders including Behcet's syndrome and graft-versus-host disease, complications of HIV and Aids, cancer-related conditions including advanced myeloma, leprosy, lupus and rheumatoid arthritis. Cancer Research UK is funding some of the trials currently taking place in Britain. "It has been one of the greatest disasters of the 20th century," says Dr Newman, "but at the same time, it promises and achieves great benefits."

    Penn Pharmaceuticals in Gwent has been manufacturing thalidomide since 1988, supplying doctors in the UK on a named-patient basis only. The firm, which does not permit female staff of a childbearing age to work with the drug, is not allowed to promote it. It also supplies Celgene, the US licence holder. "We are very open about the fact that we make it - there's no reason to be anything else," says Keren Winmill, Penn's director of pharmaceutical services. "We have a very constructive relationship with Thalidomide UK."

    Pharmion, a pharmaceutical firm based in Cambridge, has submitted an application for a European licence to market thalidomide for patients with multiple myeloma (a blood and bone marrow disease) and erythema nodosum leprosum, a serious inflammatory condition in patients with leprosy. Steven Slack, the firm's thalidomide product director, says: "We would put in place a strict distribution and prescribing programme to make sure it is used as safely as possible." Using the same controls as Celgene, the drug would be available on a prescription-only basis and doctors, pharmacists and patients would be registered. Female patients would have to agree to use two forms of contraception and undergo regular pregnancy testing. Male patients would have to use barrier contraception.

    The same care, however, has not been taken by some patients in Brazil, with disastrous consequences. It is believed that at least 75 deformed children have been born from mothers taking the drug for leprosy. Brian Gault, who runs an Isle of Man-based charity, Look, No Hands!, which raises funds for the new generation of thalidomiders, says: "Most of the mothers live in the shanty towns where leprosy is rife and most of them are illiterate. Even though the doctors give them warnings, they don't grasp the concept. Some misunderstand the label bearing a child in a womb with a big cross through it. Some people think that it's an abortion pill. There are also cases of girls whose skin has improved, so they have a party, show everyone the drug and it is passed around."

    Many British people affected by thalidomide accept that the drug has medical benefits, but believe it should only be used as a last resort. If enough care is taken, this country will avoid the acute trauma that a second generation of deformed babies would undoubtedly cause.

    'Thalidomide - Life at 40' is screened on BBC 2 tomorrow at 9pm

  2. #2
    The same care, however, has not been taken by some patients in Brazil, with disastrous consequences. It is believed that at least 75 deformed children have been born from mothers taking the drug for leprosy. Brian Gault, who runs an Isle of Man-based charity, Look, No Hands!, which raises funds for the new generation of thalidomiders, says: "Most of the mothers live in the shanty towns where leprosy is rife and most of them are illiterate. Even though the doctors give them warnings, they don't grasp the concept. Some misunderstand the label bearing a child in a womb with a big cross through it. Some people think that it's an abortion pill. There are also cases of girls whose skin has improved, so they have a party, show everyone the drug and it is passed around."
    So sad.

  3. #3
    Agreed, very sad.

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