REINVENT: A Conference on Neglected Diseases
BY AYLIN MANDURIC, with contributions from CHEYANNE REED.
On October 2nd, the REINVENT conference on neglected diseases (NDs) took place at the University of Toronto. Eschewing the traditional focus on purely biomedical solutions, the interdisciplinary conference deconstructed notions that neglected diseases can be resolved with basic science research and donor generosity alone. Panelists from diverse backgrounds explored the social, structural, economic, and historic causes of neglect.
The opening panel, “Theorizing Neglect”, introduced several of the conference’s recurring themes: the core problem of some lives being undervalued; the legacy of historic structures of inequality; and the problem of using charity to fill disparities that are built into global economic structures. Through the example of 19th century colonial Sierra Leone, Deborah Neill, a York University historian, discussed the colonial roots of modern approaches to addressing disease in Africa. She urged listeners to look deeper into historical patterns of development that has led to current circumstances, emphasizing that their legacy still affects society. Our legacy of healthcare provision in Africa, according to Neill, is rooted in the colonial context – including the extractive industries that strove to keep their workers alive at the lowest possible cost.
Marieme Lo, a Women and Gender Studies and African Studies professor from the University of Toronto echoed some of these ideas. She touched on women in the informal economy, and the differences in material conditions and norms that exclude women from access to health care services. If healthcare and research structures are not built in the public interest by the state, external entities, with different agendas, come into play:
<blockquote class="twitter-tweet"><p lang="en" dir="ltr">The disengagement of the state opens up the space for other external actors like foundations and celebrities - Marieme Lo - <a href="https://twitter.com/hashtag/ReinventNDs?src=hash&ref_src=twsrc%5Etfw">#ReinventNDs</a></p>— Juxtaposition Global Health Magazine (@juxtamagazine) <a href="https://twitter.com/juxtamagazine/status/649946415842623488?ref_src=twsrc%5Etfw">October 2, 2015</a></blockquote> <script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
The panel also included John Pringle, a nurse with experience working with Médécins Sans Frontières/Doctors Without Borders (MSF) in Eritrea, Nigeria, and Sierra Leone. Pringle referred to humanitarianism as a mere stopgap, often having the perverse effect of reducing pressure on local governments to build infrastructure. He highlighted aspects of the economic and geopolitical system that maintain structural inequality.
<blockquote class="twitter-tweet"><p lang="en" dir="ltr">"Diseases of poverty fall outside the neoliberal agenda" - John Pringle <a href="https://twitter.com/hashtag/ReinventNDs?src=hash&ref_src=twsrc%5Etfw">#ReinventNDs</a></p>— Juxtaposition Global Health Magazine (@juxtamagazine) <a href="https://twitter.com/juxtamagazine/status/649943129009823744?ref_src=twsrc%5Etfw">October 2, 2015</a></blockquote> <script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
Other speakers addressed a number of issues related to neglect from a variety of different perspectives. Concurrent sessions included “Deconstruction a Century of Tropical Diseases” with Deborah Neill and Anne-Emanuelle Birn; “Indigenous Health and Neglect” with Anna Banerji and Earl Nowgesic; “Bringing Issues of Neglect into Public Discourse” with Brian Simpson; and “Environmental Change & Neglect” with Ben Brisbois and Harris Ali.
The second panel, “Free Trade at What Cost? R&D for Neglected Diseases” discussed ways in which the pharmaceutical industry yields heavy influence in limiting access to drugs and how the R&D structures in place do not address neglect. Rachel Cohen, Executive Director for DNDi North America (Drugs for Neglected Diseases Initiative) discussed her organization’s model of research that has resulted in 6 new treatments since 2007.
<blockquote class="twitter-tweet"><p lang="en" dir="ltr">Panel discussion with amazing thinkers on globalization and R&D for neglected diseases. <a href="https://twitter.com/hashtag/ReinventNDs?src=hash&ref_src=twsrc%5Etfw">#ReinventNDs</a> <a href="http://t.co/VxgGXSDyb8">pic.twitter.com/VxgGXSDyb8</a></p>— Michelle Lee (@michlee_) <a href="https://twitter.com/michlee_/status/650018653816135681?ref_src=twsrc%5Etfw">October 2, 2015</a></blockquote> <script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
Jamie Love, an economist, and Director of Knowledge Ecology International shed light on how economic structures allow high drug prices, and prevent investment in R&D for neglected diseases. He brought into focus the recent secret negotiations that has led to the Trans-Pacific Partnership:
<blockquote class="twitter-tweet"><p lang="en" dir="ltr">The US gets 600 corporate executives to review trade deals - not the people. <a href="https://twitter.com/hashtag/ReinventNDs?src=hash&ref_src=twsrc%5Etfw">#ReinventNDs</a></p>— Juxtaposition Global Health Magazine (@juxtamagazine) <a href="https://twitter.com/juxtamagazine/status/650009833903489024?ref_src=twsrc%5Etfw">October 2, 2015</a></blockquote> <script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
Anne Pollock, an associate professor of Science, Technology and Culture at Georgia Tech brought a very interesting persepctive on how researchers in the “global South” perceive their identity and the role such discourses play in international partnerships.
Isabel Altamirano-Jiménez, known for her work connecting gender, indigeneity, colonialism, and the market, closed the conference with a compelling keynote on neglected indigenous populations in North America and around the world. She explored the meanings behind the “indigenous” classification, and the repeated structural and economic oppression under neoliberal expansion and trade deals like NAFTA (North American Free Trade Agreeement). That the legacy of colonialism continues in Canada, can be seen in the differences between indigenous and settler populations; unequal health outcomes are just one product of these differences. Land grabs, externally-imposed definitions of who is or isn’t indigenous, neglect and exclusion from care are all fruits of unequal valuations of human life.
Neglect comes from abandonment, from those in power failing to or choosing not stand in solidarity with those who lack it; from states offloading responsibility for poor or marginalized citizens onto the private sector; and from a failure of those working within the system to question the structures that favour abandonment. REINVENT challenged narrow conceptions of neglected diseases and raised fresh questions about the structures that allow for populations to be neglected while other benefit.
A Student’s Perspective
You can read more about the ideas that led to the REINVENT conference on its blog, Defining Moment.