HUNDREDS of birth defect victims will campaign for justice after their families were harmed by a drug given to pregnant women between the 1930s and the 1970s.
Members of the group DES Justice UK are calling for reparations for damage caused by the medicine diethylstilbestrol, known as DES.
The oestrogen replacement pill was prescribed to mums-to-be to prevent miscarriage, premature labour, and pregnancy complications.
Scientists later linked it to serious health problems and campaigners say patients and their children and grandchildren have suffered infertility and cancer as a result of taking it.
Around 300,000 women are estimated to have taken the drug and DES Justice UK has been launched by hundreds of victims.
They say people affected in the US and Netherlands get compensation, but not Brits.
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The group estimates thousands more people may be affected without knowing and are now calling for a full public inquiry into the issue.
Spokesperson Issy Taylor’s grandmother took the drug, which caused Issy’s mum, Michelle, 63, to have fertility problems.
Now, Issy, 25, has herself experienced abnormal cervical cell changes.
She said: “The impact of this drug has been emotionally and physically devastating.
“For 24 years I believed I wasn’t affected until recently, when I learned that wasn’t true.
“The government and medical institutions have lied to the victims and treated us with contempt.
“We were used as human guinea pigs and, decades later, we’re still being denied the proper healthcare, compensation and justice we deserve.”
Michelle described women who were prescribed DES as being “like lambs to the slaughter”, claiming their maternal instincts were “exploited”.
DES Justice UK is calling for answers from the Government, along with a redress scheme and a screening programme for those exposed to DES.
“Women who are infertile after being exposed to this drug have had their human right to have a child taken away,” Michelle said.
“One had a hysterectomy at nine years old after being diagnosed with rare cancer.
“They’ve poisoned us. We’ve fought this for so long, there’s no way we could have done this in the ’90s.”
‘A silent scandal’
The DES scandal has been labelled the ‘hidden thalidomide’ scandal.
Morning sickness pill thalidomide is the most famous in the UK, after women who took it gave birth to children with deformed limbs.
Epilepsy drug sodium valproate was banned in 2018 for women who might get pregnant, due to concerns about birth defects and learning difficulties.
It was not until 1997, when the sisters were part of a group called DES Action UK (DJAUK), that literature on DES started to emerge from the US.
There are now concerns that the abnormalities resulting from DES may have passed to the next generation.
Clare Fletcher, of law firm Broudie Jackson Canter, said: “This is a silent scandal, with victims suffering in pain for decades with limited medical support and no government recognition for what they have been through.
“It is one of the most devastating pharmaceutical failures in UK history.
“It is time that the government took some responsibility for the mistakes of the past and set up a statutory public inquiry to look into how this was allowed to happen and why it has been covered up since.”
Generational pain
Michelle’s mum, and Issy’s grandmother, Sylvia Bennett, received the drug during two pregnancies, having previously suffered two miscarriages and a full-term stillbirth.
DES was later linked to clear-cell adenocarcinoma, a rare vaginal cancer, in the 1970s, for which Michelle was monitored for decades.
However, the Worcester-based teacher and artist said she was never informed that the drug could damage the reproductive system.
When Sylvia died of bowel cancer at 55, Michelle, who was 15 at the time, and her sister Christine Holt, then 21, were called to Birmingham Women’s Hospital.
“We were told they had found the children may be affected by a rare cancer, clear-cell adenocarcinoma,” Michelle said.
“My sister was examined and she was showing early signs.”
Michelle said she was so traumatised by the process that she passed out and had to be screened under anaesthetic a few weeks later.
While her sister was treated for the rare vaginal cancer, Michelle was just monitored until she was 43.
‘Cover up’
At 23, a newly married Michelle had a near-fatal ectopic pregnancy, followed by another four months later.
These were caused by DES exposure, as her fallopian tubes were congenitally narrowed, she said.
She also said doctors told her husband they would never have children.
“I was never told, ever, that the drug could damage the reproductive system,” Michelle explained.
“We were never told our wombs were misshapen or there were abnormalities caused by the drug.
“All they concentrated on was clear-cell adenocarcinoma.”
Between the ages of 23 and 37, Michelle and her husband went through six rounds of IVF, which at the time was in its infancy. They finally had a daughter, Issy.
Issy says: “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.”
Issy has had abnormal cervical smears, while one niece has a misshapen womb and has been treated for abnormal cells on her cervix.
Another niece, 46, has been diagnosed with breast cancer – which has been linked to DES exposure – and has also been treated for abnormal cervical cells.
Michelle’s two nieces are also members of the wider DJUK group.
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Michelle says: “Other countries like the USA and the Netherlands have compensated the women and have screening programmes.
“We’ve done nothing. Because it’s a cover-up.”
Diethylstilbestrol (DES) explained
Diethylstilbestrol (DES) is a synthetic form of the female hormone oestrogen.
It was prescribed to pregnant women to prevent miscarriage, premature labour, and related complications of pregnancy.
The use of DES declined after studies in the 1950s showed that it was not effective in preventing these problems, although it continued to be used to stop lactation, for emergency contraception, and to treat menopausal symptoms in women.
In 1971, researchers linked DES exposure in the womb to a rare type of cancer of the cervix and vagina called clear cell adenocarcinoma.
Soon after, the US Food and Drug Administration (FDA) notified health care providers that DES should not be prescribed to pregnant women.
The drug continued to be prescribed to pregnant women in Europe until 1978.
DES is now known to be an endocrine-disrupting chemical, one of a number of substances that interfere with the endocrine system to potentially cause cancer, birth defects, and other developmental abnormalities.
Women exposed to the drug while in the womb are at higher risk of:
- Clear cell adenocarcinoma
- Breast cancer
- Pancreatic cancer
- Cervical cancers
Source: National Cancer Institute
