Primodos, paternalism and the fight to be heard (14 February 2024)

Summary

Wellcome Collection long read on two women who battled through decades of medical paternalism: Marie Lyon, who took Primodos, and Dr Isabel Gal, the scientist who first raised the alarm.

Content

When, in 1959, a quick new pregnancy-testing drug replaced the time-consuming methods available previously, doctors happily prescribed it. But an unusually high number of babies with disabilities were born to mothers who took the drug. Despite increasing safety concerns, Primodos wasn’t withdrawn until 1977 and attempts to uncover the truth about the drug, and get justice for those affected by it, continue today.

In February 2024, Patient Safety Commissioner Henrietta Hughes publicly launched a report calling for compensation for victims of two other women’s health scandals: sodium valproate and vaginal mesh. Primodos was glaringly absent. 

“The PSC’s role is to oversee patient safety, yet not one member of our Primodos families has been contacted to ensure their patient safety needs are met,” says Marie. 

“Our families have sole responsibility for the cost of medication and devices necessary to prevent physical and mental health deterioration. Shameful.”  

Further reading on the hub:

• Reflections on The Hughes Report: Pelvic mesh, sodium valproate, hormone pregnancy tests and options for redress
• Patient Safety Spotlight interview with Marie Lyon, chair of the Association for Children Damaged by Hormone Pregnancy Tests