Hundreds of victims of ‘silent scandal’ pregnancy drug call for public inquiry

Hundreds of victims of a “silent scandal” involving a pregnancy drug linked to cancer are calling on the Government to launch a public inquiry.

More than 300 people have formed the group DES Justice UK (DJUK) for those affected by diethylstilbestrol, a synthetic form of the female hormone oestrogen, commonly known as DES.

DES was prescribed to pregnant women from 1940 to the 1970s to prevent miscarriage, premature labour and complications of pregnancy.

It was also used to suppress breast milk production, for emergency contraception and to treat menopausal symptoms in women.

In 1971, researchers linked DES exposure to a type of cancer of the cervix and vagina called clear cell adenocarcinoma, prompting US regulators to say the drug should not be prescribed to pregnant women.

However, DES, which is also linked to other cancers such as breast, pancreatic and cervical, continued to be prescribed to pregnant women in Europe until 1978.

The new UK 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 cancer.

Around 300,000 women in the UK are estimated to have been prescribed the drug.

Compensation schemes have been set up for DES victims in the US and Netherlands, but the UK does not have one.

Issy Taylor, 25, from Worcester, says her mother suffered fertility issues after her own mother took the drug.

Ms Taylor, a spokesperson for DES Justice UK, herself has experienced abnormal cervical cell changes.

She 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 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.”

DES, which was never patented, was cheap and easy to produce.

Hundreds of drug companies made it around the world and it was marketed under numerous brand names, which makes holding firms liable difficult.

Clare Fletcher, partner at the Broudie Jackson Canter solicitors, which represents the group, 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.”

The Medicines and Healthcare products Regulatory Agency (MHRA) told the PA news agency correspondence was sent by the Committee on Medicines Safety (CSM) in 1973 to inform UK doctors of a US study into instances of vaginal adenocarcinoma.

This advised that no similar cases had been found in the UK, and the letter did not explicitly contraindicate the use of DES in pregnancy and pre-menopausal women.

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.”

Later, 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 said its sympathies lay with those affected by DES, adding: “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.”

A Department of Health and Social Care spokeswoman said: “There are harrowing accounts of harm caused by the historic use of DES, with some women still suffering from the associated risks of this medication which have been passed down a generation, and not feeling adequately listened to or supported.

“The Secretary of State has been clear he has been looking seriously at this legacy issue and carefully considering what more the Government can do to better support women and their families who have been impacted.

“As a result, he has asked NHS England to urgently work closely with local cancer alliances to make sure that GPs are aware of the follow up guidance for those exposed to DES, so that those who could benefit from additional screening aren’t missing out.”

The new DES Justice UK group has been formed following a year-long ITV News investigation.