Pill that left a generation blighted by cancer: Women took it to prevent the agony of miscarriage, now their children are paying a terrible price
23:24 GMT, 12 March 2012
Victim: Heather's rare cervical cancer was linked to the drug DES
Heather Justice was just 25 when cervical cancer struck. To save her life, surgeons had to perform radical — and distressing — surgery to remove her womb and vagina, but unfortunately that wasn’t the end of her ordeal.
For Heather’s surgeon had been struck by the fact that hers was a particularly rare and aggressive type of cervical cancer only usually seen in post-menopausal women.
Further investigations led to the start of one of Britain’s longest-running and most shocking drug scandals. Heather, now 59, was the UK’s first confirmed case of DES-related injury.
DES, or diethylstilboestrol, was prescribed to pregnant women — including Heather’s mother Gladys — from the Fifties to the Seventies in the mistaken belief that it prevented miscarriage. Instead, it left behind a hidden legacy of damage to the foetus.
The drug is now making headlines in Britain because a leading American compensation lawyer, Aaron Levine, has announced that he plans to coordinate a UK-wide hunt for women like Heather Justice — ‘DES daughters’ — to launch a class-action claim.
Up to 300,000 Britons may have been exposed to the drug, but the vast majority will be unaware of this risk to their health. DES was discovered in 1938 by British researchers and developed as a cheap, super-strong form of the female hormone oestrogen.
It was given widely to women at risk of miscarrying, as it was thought to bolster their reproductive systems. But by the Fifties, studies showed DES did not improve the chance of a successful pregnancy. Then scientists found it could even be dangerous and might cause breast tumours.
However, GPs prescribed it until 1971, when the drug’s makers finally admitted it could have a profound impact on the health of those exposed to it in the womb — causing cancers and gynaecological abnormalities in women and testicular problems in men.
Heather’s mother, Gladys, was put on DES pills in the early Fifties because she had miscarried once, before becoming pregnant with Heather. No one thought any more of it until Heather was 25. She had just given birth to her second son and had a routine smear test.
‘They found something suspicious,’ she remembers. ‘Doctors did more tests and found I had a form of cervical cancer normally only seen in post-menopausal women.’
GPs prescribed DES until 1971, when the drug's makers finally admitted it could have a profound impact on the health of those exposed to it in the womb
The cancer, called clear-cell adenocarcinoma, was so invasive that surgeons had to perform a hysterectomy and partial vaginectomy. Heather, a mother-of-two from Jarrow, Tyne & Wear, said: ‘I was only 25 — so young to be going through all of this. It was late December when the doctors discharged me, and my husband, David, wondered if they were letting me out to have one last Christmas.’
Instead, thanks to the doctors’ skill, Heather has been cancer-free for more than three decades. ‘The hysterectomy left me very ill and weak for three months,’ she says. ‘I felt lucky, however, that I’d had my two boys when I was so young. I needed a lot of help initially, but you can’t be ill for long with two under-fives around. If I hadn’t had my sons, I’d have been a lot more depressed.
‘My mother was quite upset about it, though. She did not want to have done anything to harm me. She was only doing what the doctor told her. Like me, she has always blamed the drug companies.’
It was only by chance that her surgeon, John Monahan, had worked with American experts who had discovered the link between her rare cervical cancer and maternal exposure to DES. Mr Monahan rang the hospital where Heather was born and got her mother’s case notes, which confirmed that Heather’s mother had been prescribed DES.
It was a rare find: NHS hospitals used
to keep obstetric records for only 25 years before they were destroyed.
The records of countless other DES victims’ mothers have been lost this
way. But crucially — as is
typical with the vast majority of surviving case notes — Gladys’s record
does not say which company had made the drug she was prescribed.
DES daughters are 50 per cent more
likely to start the menopause early and have an increased risk of
auto-immune diseases such as lupus and rheumatoid arthritis…
DES was never patented in the UK. It was prescribed so casually that patients’ notes may record it only sketchily, if at all. Since then, the results of this carefree attitude have become terribly evident. Studies show that DES daughters face a 40-times greater risk of cervical cancer. And up to a third have suffered some form of abnormality of the cervix, uterus or fallopian tubes, resulting in an increased risk of infertility, ectopic pregnancies, miscarriages and premature births.
Furthermore, DES daughters are 50 per cent more likely to start the menopause early and have an increased risk of auto-immune diseases such as lupus and rheumatoid arthritis. And DES was not only used on women as a ‘pregnancy wonder drug’. It was also given to pubescent girls who were predicted to grow ‘too tall’. It is estimated that tens of thousands in Europe, almost certainly including Britain, were treated this way from the Fifties to the beginning of the Seventies.
But again, medical note-keeping is too lax for anyone to be certain.
Many doctors at the time believed growing taller than 5ft 8in should be considered a medical malady in young women because their ‘gawky’ size would make it hard to find husbands.
The pills were supposed to propel girls through puberty faster, giving their bones less time to grow. In fact, no one knows if the drugs even had that effect because no proper follow-up studies were performed. Last year, Dr Emile Hendriks of the Erasmus Medical Centre, Rotterdam, studied 239 women in the Netherlands who had been left growth-stunted by DES.
Her research published in the Journal of Clinical Endocrinology & Metabolism found the women were 15 per cent less likely to have successfully become pregnant and around 20 per cent more likely to have stillborn babies than women not been given the drugs.
Tests showed women given DES as girls were almost three times as likely to have failing ovaries. And it is not just women who have been affected: boys whose mothers took the drug while pregnant are also likely to pay a heavy cost because it may also damage men’s fertility. It was used in 1944 as the first ‘chemical castration’ agent, forcibly given to rapists and other male sex offenders to kill their sex drives.
Studies in the U.S. show that the sons of women who took DES while carrying them have a higher risk of genital problems, such as undescended or underdeveloped testicles, cysts on the back of the testes and lowered sperm count. However, because of poor NHS record-keeping, thousands of potential victims may never know for sure that their problems with cancer and fertility were caused by DES.
But even when people in Britain have discovered their mothers took DES during pregnancy, they have not been able to seek compensation through UK courts. Under Britain’s legal system, each victim is required to sue the exact drug company that made their mother’s pills, even though their NHS notes do not identify them. Similar victims in the U.S. and Australia have won compensation because their countries’ legal systems do not demand this information.
Law courts in California have pioneered a system called ‘market-share’, where victims don’t have to prove which company made their mother’s DES. Instead, all the companies that made it are each required to pay a percentage of the compensation awards, corresponding to the size of their share of the DES market. Britain should adopt a similar system, says Heather Justice. ‘It would seem fair and sensible for the pharmaceutical companies to accept collective responsibility,’ she says. ‘But drug companies won’t create a fund voluntarily.’
Heather and other victims set up the charity DES Action 20 years ago to lobby the Government to create systems to warn people whose mothers took the drug of the dangers that they may face, and to urge them to take early screening tests for gynaecological cancers and infertility. The charity also wanted the law changed to give victims a decent chance of compensation.
But despite politicians’ promises, she says the charity has been let down by empty pledges. A Department of Health spokesman says compensation is ‘a matter for the makers and/or the UK licensees of the drug’. The Association of the British Pharmaceutical Industry says: ‘We are not authorised to talk about individual medicines, their legal implications or effects.’
And now, after 20 years of campaigning, Heather and her dwindling band of fellow campaigners are closing down their charity. ‘I think the time has passed now,’ she says. And she is not optimistic about the high-powered American compensation lawyer’s chances.
‘I don’t hold out hopes for Mr Levine. More than ten years ago he came over to try the same thing and could not do anything then. I hope I am wrong, and I wish him luck. But I know how the British system works.’