Hundreds of victims have called on the government to launch a public inquiry into a pregnancy drug linked to cancer.
DES Justice UK is made up of more than 300 people affected by diethylstilbestrol, a synthetic form of the female hormone oestrogen, commonly known as DES.
It was prescribed to pregnant women from 1940 to the 1970s to prevent miscarriage, premature labour and complications of pregnancy.
The drug was also used to suppress milk production, emergency contraception and to treat menopausal symptoms.
But in 1971, researchers linked DES exposure to a type of cancer of the cervix and vagina called clear cell adenocarcinoma.
That led US regulators to say the drug should not be prescribed to pregnant women.
But DES, also linked to other cancers including breast, pancreatic and cervical, continued to be prescribed to pregnant women in Europe until 1978.
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It is estimated around 300,000 women in the UK have been prescribed the drug.
DES Justice UK is made up of women who took the drug – along with their daughters, sons and granddaughters who have suffered medical issues including infertility, reproductive abnormalities and increased risk of cancer.
There are compensation schemes set up for DES victims in the US and Netherlands, but not in the UK.
‘Lambs to the slaughter’
A woman who suffered fertility problems after being exposed to diethylstilbestrol while in her mother Sylvia Bennett’s womb has described events as a “cover-up” and claimed those affected were “poisoned”.
Michelle Taylor, 63, said women who were given DES were “like lambs to the slaughter” and their maternal instincts were “exploited”.
When Mrs Bennett died of bowel cancer at 55, Mrs Taylor – who was 15 at the time – and her sister Christine Holt, then 21, were called to Birmingham Women’s Hospital.
Mrs Taylor said: “We were told they had found the children may be affected by a rare cancer, clear-cell adenocarcinoma. My sister was examined and she was showing early signs.”
While her sister was treated for the rare vaginal cancer, Mrs Taylor was monitored. She attended the clinic from the age of 15 until she was 43.
At 23, a newly-married Mrs Taylor had a near-fatal ectopic pregnancy, followed by another four months later.
According to Mrs Taylor, these were caused by DES exposure, as her fallopian tubes were congenitally narrowed.
Between the ages of 23 and 37, Mrs Taylor and her husband went through six rounds of IVF, which at the time was in its infancy. They finally had a daughter, Issy, now 25.
Issy Taylor, who is now a spokesperson for DES Justice UK, has suffered abnormal cervical cell changes.
‘For 24 years I believed I wasn’t affected until recently’
Issy Taylor said: “The impact of this drug, not only on my family but countless others, has been devastating, both emotionally and physically.
“For the victims, there has been a breakdown of trust towards the government and medical institutions who have lied to us and treated us with contempt.
“My mum was lied to by professionals who assured her there was no possibility the drug could affect me, even though they had no research to support that claim.”
She added: “For 24 years I believed I wasn’t affected until recently, when I learned that wasn’t true.
“What frustrates me most is that the drug companies and institutions responsible for this devastation profited and covered it up while families like mine have paid the ultimate price – with our health, fertility, and peace of mind.”
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DES was never patented and was cheap and easy to produce.
Clare Fletcher, partner at the Broudie Jackson Canter solicitors, representing the group, described the situation as a “silent scandal”.
The Medicines and Healthcare products Regulatory Agency (MHRA) said agency correspondence was sent by the Committee on Medicines Safety (CSM) in 1973 to inform doctors of a US study into instances of vaginal adenocarcinoma.
This advised no similar cases had been found in the UK and the letter did not contraindicate the use of DES in pregnancy and pre-menopausal women.
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‘We apologise for this error’
A spokesman said: “We apologise for this error and for any distress caused to patients and the public.
“At the time of the communication in 1973, usage in pregnancy in the UK was considered to be much lower than in the US which, coupled with the lack of UK cases of affected children, led to the conclusion that communicating to doctors on the available evidence was sufficient.
“This position was supported by the September 1972 CSM minutes, which show the Committee agreed that no action was necessary beyond continued surveillance, as there was no evidence the US findings applied in the UK.”
Then in 1981/82, Association of the British Pharmaceutical Industry datasheets said DES was specifically contraindicated in pregnancy or for women who might become pregnant.
The MHRA added: “The committee’s work predates the existence of the MHRA, when medicines vigilance was only in its infancy and there were no electronic records or systematic monitoring of prescriptions.
“There has been a step change in reporting and record keeping since this time and today’s regulatory frameworks are significantly different.”
