Honored Organizer for Improving Patient Safety

A mother who says she was affected by hormone pregnancy tests said her award in the King’s Birthday Honors was an “acknowledgement” of an injustice by many.

Marie Lyon, president of the Association for Children Affected by Hormone Pregnancy Tests (ACDHPT), has been campaigning for decades for justice for people affected by hormone pregnancy tests, including Primodos.

The 77-year-old, from Wigan, was awarded the British Empire Medal (BEM) for championing scientific research and improving patient safety for women.

She said the award was “a huge milestone” and proved the affected mothers had “done nothing wrong”.

Primodos maker Schering, now part of Bayer, has always denied a link, and last year a Court judge ruled there was no new evidence linking the tests to fetal harm.

Pregnancy tests were carried out on more than a million women from 1958 to 1978, but Ms Lyon said many were never told about the risks and were instructed to take the drug, which is 40 times the strength of a birth control pill orally, by their family doctors. as a way to find out if they were pregnant or not.

Hormone pregnancy tests were withdrawn from the market in the late 1970s, and manufacturers faced claims that such tests led to a range of adverse outcomes, including birth defects and miscarriages.

“Shocked”

Mrs Lyon herself took a hormone pregnancy test in 1970. Her daughter Sarah was born with a severe limb deformity, in which half of her arm was missing just below the elbow.

He joined ACDHPT in 1978 and has been president since 2012.

Ms Lyon said she was “shocked” but delighted to be awarded the BEM.

“I think that’s why I couldn’t believe it because I spent so many years from 1978 until now being told there was no connection,” she said.

“People have been saying how can I be turned down for so many years and suddenly there’s an honor that explicitly states ‘children harmed by’ so I’m baffled and I just hope no one has lost their job because he let it go. .”

“I felt guilty”

Ms Lyon said she took the tablets her GP gave her as Sarah was her first child and “thought nothing of it”.

But when Sarah was eight, she got a phone call asking if she would join the ACDHPT.

“That’s when we found out that the tablets contained 40 times the strength of an oral contraceptive,” she said.

“I immediately felt guilty and thought, ‘Why the hell didn’t I ask?’ and “if he had been to another doctor.”

Campaigning efforts led to a report by the Commission’s Expert Working Group on Human Medicines in 2017, but the report was called a “whitewash” after it concluded that the scientific evidence available at the time did not support a “causal association” between the tests and congenital defects.

But a further review in 2018, led by experts at the University of Oxford, concluded that “the use of oral hormonal pregnancy tests during pregnancy is associated with increased risks of birth defects”.

In 2020, the first Do No Harm review of Primodos, pelvic mesh implants and the anti-seizure drug sodium valproate, found that avoidable harm was caused by healthcare and regulatory failures affecting tens of thousands of lives .

Despite this, families affected by hormone pregnancy tests were left out of a review by the Patient Safety Commissioner into compensation for victims of health scandals, which was published earlier this year.

Dr Henrietta Hughes wanted to include in her review patients who suffered “avoidable harm” as a result of hormone pregnancy tests, but the Department of Health and Social Care (DHSC) told her they would not be included.

At the time, the DHSC said that while it sympathized with the families, the government’s position remained that “the available evidence does not support a causal association between the use of hormone pregnancy tests and adverse pregnancy outcomes”.

“So much support”

ACDHPT, which represents approximately 400 families, continues its fight for justice.

“Many, many times the blows have come thick and fast and I know so many people say, ‘give it up, there’s no point, just let it go,'” Ms Lyon said.

“Well, how can I? It’s not just the safety of our families, it’s the safety of women in the future.”

On receiving the award, she added: “We’ve had so much support from members, MPs, scientists, academics and that goes to them too.”

Listen to the best BBC Radio Manchester on Sounds and watch BBC Manchester on Facebook, Xand Instagram. You can also send story ideas to [email protected]

More on this story

Related Internet Links