Fifty years of creativity, crisis, and cancer in Uganda

Abstract

This article tells the story of the Uganda Cancer Institute over the past 50 years. I discuss the fundamental dynamism of research collaborations and the ways in which they bring vital yet partial investments in improving the capacity of medical facilities in sub-Saharan Africa. I explore the ways in which patient populations and the needs of caretakers themselves shape research collaborations. I also show how extreme oscillations in the capacity to conduct oncology research and provide care were (and are) tied not only to shifting international research priorities, but also to broader upheaval and periods of stability in Uganda since independence in 1962. Rather than dwelling on the debris, ruins, or an emptying of capacity in the health sector in Africa, this article highlights how this experimental infrastructure in East Africa not only survived, but also fundamentally shaped a culture of care and oncology practice that lived on.

Résumé

Cet article revient sur les 50 dernières années de l’Institut du cancer ougandais. Je traite du dynamisme fondamental des collaborations de recherche et de la manière dont elles entraînent des investissements essentiels, quoique partiels, dans l’amélioration des capacités des établissements médicaux en Afrique subsaharienne. J’examine comment les populations de patients et les besoins des soignants eux-mêmes déterminent les collaborations de recherche. Je montre également comment les fluctuations extrêmes de la capacité à conduire des recherches en oncologie et à dispenser des soins étaient (et sont) liées, non seulement aux changements des priorités de recherche, mais aussi aux bouleversements, dans un sens plus large, et aux périodes de stabilité en Ouganda, depuis l’indépendance du pays en 1962. Plutôt que de s’attarder aux débris, aux ruines, ou à l’évidement des capacités du secteur de la santé en Afrique, cet article souligne comment cette infrastructure expérimentale en Afrique de l’Est a non seulement survécu, mais a aussi déterminé, de façon fondamentale, une culture du soin et de la pratique de l’oncologie qui a perduré.

Keywords:

• Cancer
• Uganda
• capacity
• survival
• infrastructure

Mots Clés:

• Cancer
• L’Ouganda
• capacité
• survie
• infrastructure

Acknowledgements

The author wishes to thank all who made this research possible, especially the current and past directors of the Uganda Cancer Institute, Dr. Jackson Orem, Dr. Edward Katongole Mbidde, Dr. Charles Olweny, and Dr. John Ziegler, and Dr. Corey Casper at the Fred Hutchinson Cancer Research Center. The University of Pennyslvania, the Social Science Research Council, and the Wenner-Gren Foundation financially supported this work. She also thanks the two anonymous reviewers, and P. Wenzel Geissler, and Noémi Toussignant for generous feedback on the various iterations of this article. Steven Feierman, Robert Aronowitz, Adriana Petryna, Sara Berry, Randall Packard, Julie Livingston and many others provided invaluable suggestions and generous feedback on the broader project.

Notes

1. These estimates come from conversations with current Uganda Cancer Institute staff.

2. This information is current as of August 2016 and verified in informal discussions with UCI staff. See also: Dana Benson, “Baylor and Texas Children’s Hospital partner to bring fellowship training in oncology and hematology to East Africa,” Baylor College of Medicine Press Release, September 20, 2016, https://www.bcm.edu/news/pediatrics/training-oncology-hematology-east-africa. Accessed December 9, 2016.

3. Denis Parsons Burkitt Papers, Answers to Aide Memoire, Mss. Afr.s. 1872/20, Rhodes House, Oxford, United Kingdom.

4. Interview with John Ziegler, June 2012.

5. These patient records and research materials are still available in the Uganda Cancer Institute’s institutional archives, which are not formally cataloged. I thank Dr. Jackson Orem and Dr. Victoria Walusansa for granting me the permission to review these materials.

6. Interview with Moses Asiimwe, * February 2012.

7. Ibid.

8. Interview with Charles Olweny, May 2012. Olweny did not further elaborate what he meant by “capacity building.” It is hard to know if he was applying this gloss retrospectively, or if that was the actual language being used by colleagues in the late 1960s and early 1970s.

9. Ibid.

10. Ibid.

11. ”Letter to the General Manager, Food and Beverages LTD, from Professor Charles Olweny, April 20, 1976,” Uganda Cancer Institute Archives.

12. This account is derived from interviews and fieldnoted conversations with staff who worked at the UCI in the 1980s, 1990s, and 2000s. They are anonymized here to protect their privacy.

13. Interview with Tony Owor,* March 2012.

14. Ibid.

15. Joyce Namutebi and John Odkyek, Oyam South MP Okullo Epak dead,” New Vision, April 25, 2007 Accessed August 17, 2015 http://www.newvision.co.ug/D/8/13/561892. Charles Mwanguhya, “Uganda: Faire Thee Well Dr. Okullo Epak,” Daily Monitor May 2, 2007 Accessed August 17, 2015 http://allafrica.com/list/aans/post/full/day/20070502.html. Fieldnoted discussion with Dr. Casper, June 2012, Interview with Tony Owor,* March 2012.