Thalidomide: maintaining a public profile in the pursuit of justice

The allegedly safe drug thalidomide, developed by German firm Chemie Grünenthal (CG), affected large numbers of children in developed countries from the late 1950s until 8-9 months after its withdrawal from sale in most countries in November 1961. Images of these children, many with shortened limbs or other visible birth defects, abound in the popular media.

Research undertaken between 2010 and 2018 by Professor Ray Stokes and his collaborators exposed of the full extent of CG’s culpability, as well as the complicity of the German federal and state governments. It has re-ignited campaigns for justice for the survivors of thalidomide in the UK, Australia and beyond. The research has refocused public attention onto this injustice, including CG’s role and the suspension of the trial of company executives in 1970. This has led to demands for a German government inquiry, more sustainable levels of support for thalidomide survivors in the UK and in other countries, and a unanimous resolution passed by the European Parliament in 2016.

The Research

Despite sustained attention to thalidomide over several decades, a comprehensive historical account of the drug remained outstanding until the publication The Thalidomide Catastrophe: How it Happened, who was Responsible and why the Search for Justice Continues after More than Six Decades (Exeter, 2018), researched 2010-2018 by Ray Stokes and his co-authors from the third sector. The research utilises newly available sources and provides the first full account of the history of this devastating drug from its origins to the present.

Key findings include:

  • New evidence drawn from legal documents, discovery in relation to lawsuits in Australia and the United, and government archives in Germany of the true extent of the company’s misbehaviour between 1954-1961.
  • The first reliable estimate of the full extent of the thalidomide catastrophe, including stillbirths and miscarriages as well as survivors, by country. Crucially, the estimates indicate how many deaths and injuries could have been avoided, had the drug been withdrawn earlier than autumn 1961 in response to widespread notification of the drug’s effects from 1958 onwards.
  • The complicity of the West German government and the state of North Rhine Westphalia’s Justice Ministry with CG and its attorneys to establish the framework and resources for an eventual paltry settlement offer to survivors in Germany. The settlement was inextricably related to the suspension of a trial of CG executives in December 1970, even though settling a criminal trial through a financial settlement was not at that time legal in Germany.
  • Evidence of CG’s continuing role after 1961 in the development and production of thalidomide. The catastrophe of the late 1950s and early 1960s did not stop this firm – and later others – from continuing to market, distribute and develop the drug, seeking new uses for it into the 21st This led directly to a 2nd-generation thalidomide disaster in the past decade, mainly centred in Brazil.

Ray evaluated historical evidence from archival and other primary sources and refined the contributions of co-authors for scholarly integrity. He also carried out archival research into the criminal trial of CG executives and the problematic involvement of the West German and North Rhine Westphalian governments in arranging for the trial to be suspended.

The Impact

Worldwide, approximately 123,000 babies are thought to have been stillborn or miscarried due to thalidomide, and 24,000 more were born with thalidomide-induced birth defects. Around 5,000 thalidomide survivors worldwide today form a well-connected community, with very strong links between the German and British ‘thalidomiders’ (a term of self-identification) and others in NW Europe. Despite the time elapsed, there remains a need for further justice, not least because survivors, born mostly in late 1950s-early 1960s, are aging, and their disabilities have caused their needs to increase substantially over the years.

The research came about through Ray’s collaborations with Dr Martin Johnson, former director of UK Thalidomide Trust; Tobias Arndt, a Brussels-based researcher and director of EDRIC (the European Dysmelia Reference Information Centre); and Sir Harold Evans, a journalist and long-time campaigner for thalidomide justice. In his Foreword to The Thalidomide Catastrophe, Evans described the research as “carry[ing] conviction by its scientific rigor, its energy in tracking evidence, its restraint in reaching conclusions and the cool clarity of the writing”.

 The research has had two key sets of impact:

  • Keeping thalidomide and lessons learned from the tragedy and the long and ongoing fight for justice in the public consciousness through widespread media coverage, including documentary films made in the UK, Canada, and Germany, with a major positive impact on the thalidomide-affected community tody.
  • Supporting effective campaigns for political awareness, justice and compensation that resulted in additional payments to survivors, including from the UK Government and Diageo in the UK and Australia. (Diageo is the legal successor to The Distillers Company, the British and Commonwealth thalidomide licensee of CG). Evidence from the research also formed the basis for UK Parliamentary questions and a Resolution passed in December 2016 by the European Parliament calling on the German Government to ensure all survivors’ health needs are adequately funded.