St Helens mum continues birth defect pill campaign

Marie holds daughter Sarah, aged four months old.''Marie Lyon is a Thalidomide campaigner and chairperson of the Association For Children Damaged By Hormone Pregnancy Testing.
Marie holds daughter Sarah, aged four months old.''Marie Lyon is a Thalidomide campaigner and chairperson of the Association For Children Damaged By Hormone Pregnancy Testing.
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A St Helens woman has told how MPs debating allegations that a controversial hormonal pregnancy test given to one-and-a half million women throughout the 60s and 70s was responsible for birth defects in thousands of children has given her new hope.

This comes after years of campaigning from the Association of Children Damaged by Hormone Pregnancy Tests (ACDHPT), which represents hundreds of alleged victims of the drug Primodos.

Marie Lyon

Marie Lyon

Primodos became available in the late 1950s as a simple method of pregnancy diagnosis before the days of urine-based testing.

It was packaged as two pills in a green packet and administered over two consecutive days.

The drug acted by inducing menstruation in women who were not pregnant in order to indicate a negative result.

In women who were pregnant, it was believed the artificial hormones norethisterone and ethinylestradiol in the pills would be absorbed with no effect.

Sarah,  aged eight, pictured with her brother Stuart

Sarah, aged eight, pictured with her brother Stuart

Marie originally made public her campaign in 2014. Full story here

However these were packaged in such high concentrations that today, they would be equal to the strength of 13 morning after pills and 40 contraceptive pills.

The implications of this began to emerge in the late 1960s and throughout the 1970s.

Studies concluded an association between Primodos and a number of congenital birth defects including missing limbs, heart abnormalities and brain and internal organ damage, as well as increased risk of miscarriage.

An association between Primodos and spina bifida was observed as early as 1967.

The Committe on Safety of Drugs, which later became the Committee on Safety of Medicines (CSM) began its own study in 1972 and published its findings in late 1975.

The findings showed there was a statistical significance between Hormone Pregnancy Tests and birth defects in children, but a causal link had yet to be proved.

Even with this suggestion of a possible link, the Committee chose only to issue a warning to GPs, advising against the use of Primodos as a pregnancy test and providing a written cautionary on its packaging.

Marie Lyon, chairman of the Association of Children Damaged by Hormone Pregnancy Tests, who lives is from St Helens, said: “I want to know why it took so long for any action to be taken, and even then, it wasn’t enough.”

Even after 1975, Primodos continued to be given to women, with some claims estimating a further 500,000 prescriptions were made in the years following.

Marie became involved in the association around its inception in 1978, following one woman’s observation of the warning on a packet of Primodos she had been given.

This prompted the surge in publicity of its adverse effects and the congregation of a number of families who believed they had fallen victim to the drug.

Marie herself took Primodos in 1970. She recalls: “I was pregnant with my first child and went to visit the doctors expecting to do a urine test.

“I was told I could just take these tablets and if I was not pregnant, then I would bleed.”

Marie’s daughter Sarah was born in the same year with no left arm below her elbow.

“There were difficulties for Sarah while growing up because of her disability, but she’s never let it stop her from doing anything,” Marie says proudly.

It wasn’t until eight years after Sarah’s birth that Marie received a telephone call from the association asking her if she’d taken any pills during her pregnancy.

She says: “At first I was adamant that I hadn’t taken any pills, until I remembered that I had been given Primodos.”

Marie took over the chairmanship in 2012 and has done much to advance the campaign in recent years.

In 2011, she joined forces with MP for Bolton South East, Yasmin Qureshi and the camaign has also been backed by Yvonne Fovargue, MP for Makerfield, who said there were concentrations of families she was aware of affected by birth defects linked to Primodos, which suggested the drug could be linked to individual practices.

She said some of the conditions linked to Primodos included badly deformed feet, congenital heart problems, epilepsy and severe problems swallowing. Doctors had said it could be a genetic condition passed down from the child’s father, but the issues are now being linked to Primodos, said Ms Fovargue.

Marie says: “We want all evidence to be reviewed and for a possible link to be established.

“We are not focused on compensation right now. We want answers.

“It’s time for some accountability from the regulatory authorities and manufacturers who should have acted better.

“It makes me so angry to think profits may have been placed above safety.

“Many of those born in the Primodos era are now in their 30s and 40s and many will require full-time care for the rest of their lives.

“It would be fulfilling to know that these families have a cushion, to ensure their children are looked after once they are gone.”