Hundreds of women who were exposed to a pregnancy drug linked to cancer - dubbed the ‘hidden thalidomide’ - have launched the DES Justice UK campaign, calling for a public inquiry into what they are calling a 'silent scandal'.
More than 300 victims have formed the group DES Justice UK in a bid to get answers from the government. The group is also seeking a redress scheme and a programme of screening for those affected by Diethylstilbestrol, a synthetic form of the female hormone oestrogen, commonly known as DES.
The group is made up of women, who took the drug, but also their daughters, sons and granddaughters, who have suffered medical issues such as infertility, reproductive abnormalities and increased risk of a rare cancer. The drug appears to pass on health issues through the generations.
Approximately 300,000 women were prescribed what was believed to be a ‘wonder drug’ between 1938 and the late 1970s to prevent miscarriage and early labour, dry up breast milk and treat menopausal symptoms.
While compensation schemes have been set up for DES victims in the USA and Netherlands, there has been nothing in the UK where many medical professionals are not even aware of complications caused by DES and NHS resources do not mention its existence. This means there could be thousands of people potentially affected who do not even know about DES and its side effects.
Issy Taylor, whose mother suffered fertility issues after her own mother took the drug and is a spokesperson for DES UK, 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. 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. We were used as human guinea pigs for profit, and decades later, we’re still being denied the proper healthcare, compensation, recognition, and justice we deserve which is why we have launched this campaign.”
The group was formed after ITV News Social Affairs Correspondent Sarah Corker exposed the DES scandal in a year-long investigation.
DES was created by a government scientist using publicly funded research and as a result, it was never patented, leading to its manufacture by hundreds of pharmaceutical companies. This has made it difficult to make a claim for product liability.
Despite peer reviewed research into its harm, DES continued to be prescribed without any control or regulatory oversight.
Clare Fletcher, partner at Broudie Jackson Canter and founder of DES Justice UK, said:
“This is the 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 and the people whose lives have been marred by it deserve answers.
“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. It is a national disgrace that victims have been ignored, disbelieved and humiliated when all they wanted was fair treatment. It is crucial that these sufferers are finally given the truth and afforded access to the compensation they deserve.”
Members of the group will met at Westminster Hall in the Houses of Parliament at 10am on Tuesday 4 November to officially launch the group and meet some of the 30 MPs who are lobbying government to take action.