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Stilbestrol: Top medic accused of ‘head in the sand’ attitude to screening for deadly cancers

© PAChief Medical Officer Professor Sir Gregor Smith.
Chief Medical Officer Professor Sir Gregor Smith.

Politicians are calling for Scotland’s Chief Medical Officer to stop passing the buck as gynaecologists warn new screening programmes are required to protect victims from “silent killer” drug Stilbestrol.

Gynaecologists here are calling for annual screening for the thousands of women and their children exposed to the powerful synthetic hormone Stilbestrol.

It comes after Professor Sir Gregor Smith, Scotland’s Chief Medical Officer (CMO), insists it is down to England to lead the way.

The synthetic hormone was used on hundreds of thousands of women to prevent miscarriage and other maternal conditions, and on forced adoption victims to dry up their breast milk when their babies were taken for adoption.

Government adviser Dr Wael Agur says Scotland needs to adopt screening protocols like those in Australia where anyone exposed to the Stilbestrol is screened yearly, for the rest of their lives.

He said: “The most effective way of detecting the rare but aggressive and spontaneous cancers linked to Stilbestrol is by colposcopy of the vagina and cervix.

“Other countries are screening at risk patients for the rest of their lives with yearly examinations.

“Unless a clinician has been made aware that a patient has been exposed to Stilbestrol, how can we ensure we identify them when programmes like national cervical screening ends at age 65 for women in Scotland, and the gaps between tests can be up to five years?

“An expert team should be looking at drawing up new protocols so we can make the public aware of the risks of exposure to Stilbestrol, and doctors need to get better at questioning medical histories so we can properly protect patients.”

Wael Agur

In Scotland, cervical screening is done every three years between ages 25-49, and every five years for ages 50-65. Millions of women around the world were given Stilbestrol until the drug was withdrawn in the early 1970s after proven links to rare cancers in those who took the drug and any children exposed in the womb, as well as other life-changing conditions in up to two generations of their offspring.

Stilbestrol was widely used across the US, Australia, Europe and the UK to treat all kinds of conditions, but it is now known to trigger rare and aggressive cancers such as clear cell carcinoma, breast cancers and other deadly conditions. Some experts believe around one in every thousand exposed to the drug will develop cancer.

It is also known to cause infertility and deformities of the reproductive system in up to two generations.

Dr Agur said: “This drug was withdrawn over 50 years ago. But while older doctors will have some knowledge of Stilbestrol and what to look for, we also need to ensure younger doctors can identify rare cases when they see them.

“The fact this drug is now known to affect two generations, and the risk is lifelong, we need to increase awareness with doctors and the public.

“I believe international co-operation is needed if we are going to stay on top of this issue.

“It’s certainly not going to go away. We need to tackle it.”

Last week we revealed that while US Stilbestrol campaigner Caitlin McCarthy flew thousands of miles to give evidence to a Holyrood roundtable, the CMO said he was too busy to attend.

But MSP Miles Briggs, who headed the Holyrood round table, said: “This is woefully inadequate. The Chief Medical Officer needs to stop passing the buck to England and do his job.

“People in Scotland were exposed to this drug. Sir Gregor Smith needs to get his head round that and do something about it. He can’t put his head in the sand and pretend this is not happening.

“Unless we provide adequate screening, training and awareness of the dangers people were exposed to, we are looking at a public health scandal which could be prevented.

“We cannot turn the clock back for those exposed to the drug, but we can ensure our screening programmes are adequate.

“If Australia is doing annual checks during a patient’s lifetime, why do we think our far less rigorous programmes are acceptable.

“We should be embracing international co-operation and setting up a taskforce at the very least.

“The Chief Medical Officer has had almost two years to do something about this scandal, and so far, I’ve seen little or nothing from his office.”

MSP Miles Briggs. © Andrew Cawley
MSP Miles Briggs.

The Scottish Government said: “Medicine licensing is the responsibility of the UK Government and any investigation of Stilbestrol would ultimately be a matter for them to consider.

“The most recent guidance advises routine cervical screening is appropriate for those who believe that they were exposed to Stilbestrol in utero, and we would encourage all women to attend breast and cervical screening appointments.”

Drug manufacturer has been settling claims for millions in American courts

The Australian Cancer council recommends annual and indefinite tests and colposcopic examination of both the cervix and vagina in women exposed to the drug which is also known as DES-diethylstilbestrol.

US lawyers say drug makers have been settling claims for millions of dollars and gagging claimants. The drug was widely used by clinicians around the world.

It was even used by farmers to fatten up livestock.

The hormone was developed by British scientist Edward Charles Dodds in 1938, and legal cases for damages have been settled in the US and Europe. Although cancers were linked to the drug for years, it was 1978 before the US medical watchdog the FDA banned the use of the drug to suppress women’s breast milk.

In the US, around 15 million women and their children were exposed to Stilbestrol.

Medical specialists there say daughters of the women who were exposed to the drug can have an up to 40% increased risk of developing the deadly cancer clear cell carcinoma of the lower genital tract.

They also have twice the risk of developing breast and pancreatic cancer and they have a 53% higher risk of having premature births. Males who were exposed to the drug while their mothers were still pregnant can also suffer deformities of their sexual organs.

The Medicines and Healthcare Products Regulatory Agency, the UK’s medical watchdog say they do not have any records on Stilbestrol.