Scandal victims 'poisoned' by pregnancy drug call for end to 'cover up'

Victims of a scandal involving a pregnancy drug linked to cancer and infertility are demanding an end to the “cover up”.

Michelle Taylor, 63, has told how her family suffered devastating health consequences after her mother Sylvia Bennett was prescribed the drug diethylstilbestrol (DES) during two of her pregnancies. More than 300 people have formed the group DES Justice UK (DJUK) for those harmed by the synthetic form of the female hormone oestrogen.

DES was prescribed to around 300,000 pregnant women from 1940 to the 1970s to prevent miscarriage, premature labour and complications of pregnancy. A link with cancer was discovered in 1971 but it continued to be prescribed 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.

Michelle, a teacher from Worcester, said: "Women who are infertile after being exposed to this drug, their human right to have a child taken away. 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.”

When her mum 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. Michelle 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. I was already traumatised from my mum's death. To be honest, that never left me."

Michelle says she was so traumatised by the process that she passed out and had to be screened under anaesthetic a few weeks later. She attended the clinic from the age of 15 until she was 43 to be monitored for cancer but was not told of possible fertility problems.

At 23 and newly married, she had a near-fatal ectopic pregnancy, followed by another four months later. Michelle was told her fallopian tubes were congenitally narrowed. She said at that point doctors told her husband they would never have children. She said: "I had never been told that the drug could damage the reproductive system. We were never told our wombs were misshapen or there were abnormalities caused by the drug."

Between the ages of 23 and 37, Michelle and her husband went through six rounds of IVF, which back then had a much lower success rate. They finally had a daughter, Issy, now 25.

Issy, also from Worcester, has now been diagnosed with 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. 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."

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.

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 consequences for Michelle and Issy’s family have been profound. One niece has a misshapen womb and has been treated for abnormal cells on her cervix while another niece, 46, has been diagnosed with breast cancer linked to DES exposure.

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."

DES was also used to suppress breast milk production, for emergency contraception and to treat menopausal symptoms in women. It was cheap and easy to produce so hundreds of drug companies made it around the world. Because it was marketed under numerous brand names it has been difficult to hold firms liable.

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 MHRA 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."

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."