I first found out about the Uganda Cancer Institute while sitting in a library in Philadelphia. 2008. It was my first semester of graduate school. I was going through the papers of American research scientists. I came to graduate school wanting to write about the histories of HIV and AIDS science in eastern Africa. I knew that many Ugandan physicians, nurses, laboratory technicians, patients, and public health officials created much of the knowledge and many of the practices regarding HIV prevention and care on the continent. But I did not know that Ugandan physician-researchers were so involved in cancer research and care in the 1960s and 1970s in Uganda.
From a distance I started to do more reading and made travel plans to come to the Institute.
I learned that in the 1960s, Americans and Ugandans established this small cancer research hospital to study the treatment of a variety of cancers that were common in eastern Africa but rare in Europe and America. Of particular importance was a cancer called Burkitt’s lymphoma. A rapidly growing, grossly disfiguring tumor that manifested itself in the jaw, this pediatric cancer was also highly responsive and often cured by chemotherapy agents. Eyes that bulged and wept were salvaged by harsh drug regimens. Jaw tumors would magically reduce in a matter of days. These dangerous chemicals restored lives and faces. Research conducted at the Lymphoma Treatment Center in the 1960s and 1970s, what John Ziegler called a “hospital built from scratch,” continues to shape the treatment protocols for Burkitt’s lymphoma in the present.
When I finally arrived at the Institute for the first time in 2010 I was immediately struck by the hustle and bustle of the place. Everyone was on the move. Lab techs were running blood samples down to Mulago hospital for further tests. Patients were arriving on the backs of boda bodas clutching washing basins and referral notes. Nurses arranged drips, gave reassuring counsel, and went through a seemingly endless queue of cannula insertions. Oncologists ran from the Solid Tumor Center to the Lymphoma Treatment Center in a hurry.
The people were not the only objects in motion. Buildings, tents, and containers were erupting across the campus on the top of Mulago Hill. I soon found out that the original foundation of the Uganda Cancer Institute—the Lymphoma Treatment Center was going to be bulldozed to make way for a new outpatient treatment center and research facility by the end of 2012 or the beginning of 2013. The Ugandan government also had plans to build a new in patient cancer hospital. The forty beds that provided accommodations for research subjects in the 1960s and 1970s, and later on respite for patients in extremely late stages of illness from the 1980s onwards are either being repurposed or discarded. A combination of more and more prominent Ugandans suffering from cancer or taking care of relatives with cancer, as well as renewed interest from international researchers has remade the Institute.
Dr. Jackson Orem, the Uganda Cancer Institute’s current director, encourages his colleagues to think big. In a decade, the number of oncologists in the country grew from one to eleven. The number of patients greatly increased at the UCI—from less than 500 a year to more than 35,000. There is a tremendous amount of vitality and energy on the wards about research and care. It is perhaps no wonder that the UCI’s current slogan is, “Research is Our Resource.”
--Marissa Mika, Excerpt from Staying Alive: documenting the Uganda Cancer Institute
As part of the UCI@50 celebrations, historian Marissa Mika and photographer Andrea Stultiens are pleased to announce the recent publication of Staying Alive: Documenting the Uganda Cancer Institute. In 2012, Marissa Mika received a gigantic box of photographs and archival materials from John Ziegler and took them back to Kampala. Mika is a historian and anthropologist from the US who has worked at the Uganda Cancer Institute since 2010, reconstructing the history of Institute and documenting the site’s extraordinary transformation by piecing together oral histories, archival documents, secondary medical literature, ethnography, and photographs. She reached out to History in Progress Uganda, to see whether or not there would be interested in using Ziegler’s collection of photographs to create an updated portrait of the Uganda Cancer Institute in 2012. Dutch photographer and researcher Andrea Stultiens, who is one of the founders of the ‘archival platform’ accepted Mika’s invitation. They felt that this was especially important, given the fact that the original building of the Institute, the Lymphoma Treatment Center, was slated for demolition to make way for a new research and outpatient treatment center. Today, Staying Alive captures a double archive of the Uganda Cancer Institute’s past— including the materials from Ziegler between 1967 and 1973, medical illustrations made on Stultiens’ invitation by Mulago’s department of medical illustration and the photographs made by Stultiens between 2012 and 2016.
‘Staying Alive’ is the seventh book in a series of eight with the overal title ‘Ebifananyi’. Each book is based on one photocollection encountered in Uganda. It activates this collection through dialogues that partly take shape in and through pictures, and partly in words. Other, mainly Ugandan picture makers and authors contribute to these dialogues. Each book has been accompanied by at least one exhibition in Uganda. The books are available in Kampala at the Uganda Society (@the National Museum) and AfriArt Gallery in Kamwokya.
There were two important reasons for me to accept Marissa’s invitation to work with the historical photo collections related to the UCI. The first one being my general professional interest in photographs related to Ugandan pasts. The second one was a personal history with cancer. This history makes me, just like former UCI patients, a cancer survivor. I asked my oncologist in the Netherlands what would have happened had I lived in Uganda. He described in rather graphic terms how the cervix cancer I was diagnosed with would have developed if it had not been found during a general health screening as it was. It would have been painful. I would have been dead. This makes me an insider to the story of the UCI in one sense, and shows how privileged I am in another. It makes global inequalities painfully present.
The history of the UCI is infested with both good intentions and inevitable and this inescapable inequality on the other. With ‘Staying Alive’, both book and exhibition, I hope to contribute to open discussions about health and cancer care. About taboos and misunderstandings that prevail around the various types of cancer. About the necessity of transparent communication on the balance between research and treatment. About priorities set by national government and international health research and their consequences.
Join us for the opening reception of the exhibition at AfriArt Gallery in Kamwokya (Kenneth Dale Drive) on August 18th, 6pm. The exhibition is on show from August 19th through 26th, 9am-6pm. The book ‘Staying Alive’ is available at the exhibition.