Hunting the Pharmaceutical Okapi
Prof Julie Parle - historian and thalidomide survivor - on her quest for evidence of thalidomide damage in Africa.
Last year, I undertook a three week trip across the world to Canada, a country which prides itself on decency, tolerance, and on its extensive public health system. I had been invited to be a visiting scholar at Queen's University in Kingston and Carleton University in Ottawa. I also met up with colleagues, and friends old and new, and in Montreal managed to connect with Thalidomide Victims' Association of Canada's Mercedes Benegbi and Arlene Vachon.
Meeting and spending some time with more thalidomiders than I'd met since I was eleven years of age was a transformative experience. It was easy to bond; to speak from the heart; and to share tips, gadgets and advice. And laugh. It was both liberating and hilarious when, in a fancy French restaurant, four women whipped their dressing aides out of their bags and wielded them aloft like swords!
But, all my Canadian contacts were under enormous pressure, just weeks away from TVAC's Taskforce going public with a hard-hitting media-driven campaign following extensive networking with policy-makers.
The campaign shocked the Canadian public, for hidden in plain sight were victims of the infamous drug, struggling to make ends meet, let alone live with dignity or ease. What seemed especially astonishing was that no previous Canadian government had treated the nearly 100 living survivors well.
The public united around the thalidomiders and on 1 December 2014 opposition parties united in Parliament to vote 256 - 0 in favour of a package that would give thalidomiders "full support". As I write, the details are being thrashed out, and Canadian thalidomiders are mobilising once more to keep the government to its word.
Re-discovering my Roots
But, why was I there? What is thalidomide to me?
To step back a little. I was born in the UK in 1962. In 1974, my family emigrated to KwaZulu-Natal in South Africa. I'm a historian and until the end of 2013, I held the post of associate professor of History at UKZN, where I am now an Honorary Professor. I have researched all sorts of things, but am mostly interested in histories of health and medicine in the part of the world where I live. I write mostly about tricky stuff - insanity, emotions, suicide, seduction, medicine (good and bad), witchcraft, hysteria. My book States of Mind: Searching for Mental Health in Natal and Zululand, 1868-1918 ends with the 1920s just in sight.
I am also a thalidomider who, to my enormous surprise, is researching the history of thalidomide and similar drugs in my adopted continent. This was the last topic I had thought I'd ever get involved in. I had no interest in making thalidomide any more a part of my life than it had to be. In fact, I had worked hard my whole life to make sure thalidomide had as little to do with me as possible.
So, as of three years ago, I had no expertise in the history of 'the world's greatest drug disaster'; or the time period; or the history of modern pharmaceuticals. Besides, from the time I arrived in South Africa, aged nearly 12, I'd been told that there were no thalidomiders who had been born in the country and that both the drug's manufacturers, Chemie Grünenthal, and the British company, Distillers Biochemicals Ltd (the licensed distributors in many Commonwealth countries), have consistently denied having sold it here.
When approached in 2011 by Professor Susanne Klausen of Carleton University - an expert on the history of eugenics and abortion in South Africa - to work with her on the impact of thalidomide in South Africa, I said that there wasn't any such history to be written. Instead, we began to research thalidomide's "shadow histories" - how it had impacted on South African legislation and regulation of medicines, contraception and abortion. We anticipated that this would be a one-off article, published in a journal of African or medical history.
But, suddenly, this was no longer an abstract academic exercise and instead I was catapulted into an exciting, perplexing and important research project with many unexpected consequences. These include the gift of friendship, generosity, and a passion for social justice shared with many people. Most are not academics, lawyers or journalists, and are people I've never met, except on Facebook or email.
Locating the Okapi
One such email correspondence (whom I actually did meet in Toronto) took place with Dr Opiyo Oloya on 1 March 2013. Now resident in Canada for several decades, Dr Oloya is originally from Uganda. In an online column published in 2012 he claimed that in 1962 several African women had had babies with the disabilities characteristic of thalidomide. I asked Dr Oloya what proof he had. He wrote back immediately. Unfortunately, the women who had contacted him some years previously could no longer be traced, but he likened the quest of identifying the definite presence of thalidomide in Africa to that of the nineteenth century British explorers' often baffling hunt for the 'African unicorn', the okapi.
And I have been conducting my own version of this hunt ever since. In this search, I have had to look more closely at the widely shared (but incorrect) assumption that there had never been much commercial interest in selling thalidomide to Africa.
As soon as I put out the word of what we were doing, pieces of information came in from other thalidomiders across the world, and their allies. Pointers to the online Rowe documents from Alexandra Niblock in Canada, and Kali Wilde in Australia were especially important in showing the intention of selling thalidomide in Africa, including South Africa, in the late 1950s.
But, there was no 'epidemic' of thalidomide-affected children. Why not? Perhaps the drug never made it to the continent in bulk quantities; perhaps it was not prescribed or given to pregnant African women, whom according to the racist medical science of the time claimed did not suffer during pregnancy as much as white women did? Where to look for this pharmaceutical okapi?
Connected via the then Director of the UK's Thalidomide Trust, Dr Martin Johnson, EDRIC's Geoff Adams-Spink and Tobias Arndt assisted me in beginning the search to answer these questions. In mid-2013, Tobias revisited the records of the Contergan Trial in Dusseldorf. He was the first to send me conclusive evidence that small quantities of Softenon (one of the German trade names for a preparation containing thalidomide) had definitely been exported to South Africa in the early 1960s. Even though really busy with their own campaign for acknowledgement and compensation, Spain's Jose (Pepe) Riquelme of AVITE, took the time to assure me that records discovered by their lawyers pointed directly to the presence of thalidomide in South Africa. The okapi existed!
Also very interesting were the export figures of other thalidomide-containing products to at least a dozen African countries. In most of these, the settler or expatriate communities were tiny, and so the markets were likely to be for Africans in newly independent countries. And their most urgent need was for cheap medicines for chronic health conditions such as dysentery and infections caused by parasites.
Thalidomide - a Treatment for Intestinal Parasites
Grünenthal had such products, including one of its best sellers: Entero-Sediv. In its original formulation, it contained thalidomide. For some time after the early 1960s, Grünenthal continued to sell Entero-Sediv, but now without the thalidomide component.
On a research trip on 'operation okapi' in mid-2014, along with a research colleague, we came across this package of Entero-Sediv in a pharmaceutical museum, in Johannesburg.
We both thought we had found the okapi, but on opening up the box found that it dated from the post-thalidomide period. Even so, the sight of the box had a striking effect on me. But the okapi had escaped again.
By then I had urgent reasons for wanting to push this research. In late 2013, two South African women, with whom I had been at school in Durban, but with whom I'd had little or no contact for the past thirty years, had contacted me via their lawyers. Both have thalidomide-like disabilities, but we have no documentary link to Grunenthal or Distillers. Their story appears on the DysNet blog. The story is written by Tony Carnie, himself a thalidomider, born in Kenya in 1962.
The hunt for the okapi in South Africa goes on, but the quarry remains elusive and tracking it will require extensive work in archives and places distant from where I live. My search has had to pause while I work on grant proposals. My goal is to work with a network of researchers who will address the global history of thalidomide.
A start was made in June 2014, when Susanne Klausen and I were joined by two other historians and a pharmacologist, whose advice and knowledge of the history of drug regulation and of pharmacy in South Africa is invaluable. It was carried further in September, with a day long meeting at Carleton University in Ottawa to discuss the transnational history of thalidomide, with two case studies: one of Canada presented by Alex Niblock and the second by me, talking on South Africa.
My trip to Canada convinced me that a full history of thalidomide across the world and right up to the present day will take many of us many years, but it will be worth the work. Every snippet of information can assist in bringing to light many "shadow histories" of thalidomide. Without the truth about the past, there can be no justice in the present or future. These networks that we have begun to form, whether formal or not, must be strengthened and expanded: then, slowly but surely, the okapi will be found.
Tags: Thalidomide Canada Africa Softenon Grünenthal Endero Sediv Article Article