STRIDES AMIDST PAIN AND UNCERTEINITY
The story of decades of search for decent cancer care for the poor in Uganda (13/03/2020)
The history of cancer care in Uganda can be traced back to the pioneering work of missionary doctor Sir Albert Cook, who is regarded as the father of Western medicine in Uganda. His meticulous case notes made between 1897 and 1904 were compiled and reviewed in 1954 by Dr. J.N. Davies . From this review, it was concluded that a number of cases he saw were actually cancers, thus suggesting that cancer was present in the Ugandan population right at the outset of Western practice in the country. This is contrary to the contemporary view at the time.
To further substantiate this observation, the Kampala Cancer Registry was set up to collect systematic population data on cancer. This is by far the oldest cancer registry in Africa. The operation of the registry required a well-developed pathology service, which was realized through the establishment and consolidation of the department of histopathology at the Makerere Medical School. The landmark description of Burkitt’s lymphoma in1958 by Denis Burkitt was an immediate result of the atmosphere of medical curiosity and descriptive research created at the time. This inspired cancer research into three paths; first epidemiology, which looked at possible environmental causes, especially malaria and viruses. Second, linked to this was the involvement of laboratory sciences in the field of virology and immunology, strengthening the disease link with malaria which was key in the discovery of a viral cause of Burkitt’s lymphoma, namely the Epstein-Barr virus. Thirdly was a development of cancer care by showing the cure of Burkitts lymphoma with chemotherapy alone. The news that African cancer was potentially curable received the attention of cancer researchers throughout the world. The US National Cancer Institute saw it as an opportunity for more discoveries hence spearheaded the establishment of the Uganda Cancer Institute (UCI) as a partner agency in 1967.
Many ground breaking work came out of the UCI at the time such as the use of combination chemotherapy, the treatment of cancer spreading to the brain, the principle of tumor debulking(surgical reduction) and controlling complication of cancer treatment( tumor lysis syndrome). The institute also started postgraduate training program in clinical and investigative oncology, provided a consultative oncology service for local and upcountry hospitals and lastly carried out multidisciplinary studies of common cancers in Uganda. In addition to Burkitt’s lymphoma, other cancers were described this included childhood Hodgkin’s disease, endemic Kaposi’s sarcoma, liver cancer (hepatocellular carcinoma). Given the challenge of the availability of chemotherapy in developing countries at the time, the Institute proposed the concept of essential drug list for cancer therapy, which has since been accepted and adopted by the WHO as a key component of the global cancer control effort.
However all these achievements came to a crashing end due to an abrupt policy change to merge the institute to Mulago hospital in 1982. The merger marked the beginning of the breakdown of the nascent cancer service in the country that was far ahead of many countries in Africa. The merger of the institute was a result of a decision of Ministry of Health (MOH) and concurrence by Makerere University. Although the main reason was the high cost of cancer care, Makerere University was of the view that all important research questions on cancer had been answered and it was time for implementation, which was the purview of ministry of health. The ministry of health on the other hand was convinced that cancer was not a major health problem in Uganda hence no need for costly intervention and relevance for continued independent operation of the Institute. Politically the institute was viewed by the government of the time as a success story of Idi Amin. This was because Idi Amin was so proud of the institute that he gave it direct budget for research and would showcase it to visiting heads of states to see advances in cancer treatment research only found in Uganda. Hence the merger decision was multifactorial influenced by national politics, uninformed ministerial policy and lack of academic foresight.
Meanwhile as the institute was being relegated the situation on the ground was different, there was the emergence of HIV and the upsurge of HIV related malignancies such as Kaposi’s sarcoma, cancer of the cervix and nonhodgkins lymphoma. This was to be the trend for the next three decades. In addition, other infection related cancers Burkitt’s lymphoma, liver cancer, and gastric malignancies were noted on the increase. The cause of the rise in cancer was multi-factorial ranging from environmental agents, population explosion, lifestyle such as smoking and alcohol. Most patients presented with late stage disease and high rate of mortality. With the increase, burden of disease and lack of a functional dedicated institution for cancer there was recourse to palliative care or hospice concept as the only affordable option for Ugandans. This became the preferred policy option by ministry of health albeit through civil society since government did not have resources to spend on comprehensive cancer treatment.
With the situation getting out of hand, the increasing cases of cancer and appalling status of the facility caught the attention of a section of influential members of the society notably from the Kampala club. The members of the club led by Dr. Ben Mbonye organized a fundraising drive for the institute with the precedes meant for a special ward. At the time one of their members was attending the Institute.
At the commissioning of the ward the chief guest was the Prime Minister The Rt Hon. Apolo Nsibambi who was appalled by the situation, the overcrowding, the number of patients, scarcity of drugs few staff and lack of facility. He was further shocked to find a member of parliament Hon. Yepusa Okullo Epak in the que waiting to see a doctor at the Institute in the overcrowded environment. It was the habit of Hon. Okullo Epak to wait patiently for his turn in the que. He would not accept to be seen ahead of an ordinary patient who came earlier than he did. However on that day he had to wait much longer than usual because the same doctor taking the guest around was the only oncologist who would have to come back and continue seeing patient once the visit was over. Disgusted the Prime Minister immediately requested for a cabinet paper on the situation at the institute from the ministry of health represented at the function by the director general health services Dr. Sam Zaramba. He also directed the minister of finance in charge of general duties (present at the tour) Hon. Fred Jachan Omach for direct funding to be given to the institute. Back in parliament Hon. Okullo Epak became an ardent advocate for improved cancer care and proposed a direct tax on tabacco to be channeled to the UCI. He was further supported by his colleagues for the creation of an independent vote status for the institute with a separate budget from Mulago National referral Hospital which came into effect in 2009 two years after his death. However as fate would have it didn’t take long the system created by the directive of the Rt. Hon. Nsibambi and advocacy of Hon. Epak would mature to provide decent care for Rt. Hon. Nsibambi during his own battle with cancer. Just like his contemporary Professor Nsibambi would patiently wait in the que until it was his turn to be seen. Albeit the environment at the institute now much better than at the time of Okullo Epak.
With the momentum created by the intervention of the Prime Minister an effort to create an integrated and comprehensive cancer service by government of Uganda was set in motion first by re- established the semi-autonomous status of the Uganda Cancer Institute and eventually enactment by an Act or Parliament UCI ACT 2016. This fell in line with the WHO recommendation to adopt a planned response to the cancer crisis by initiating Comprehensive National Cancer Control Program (CNCCP). The key components of this being Cancer Prevention, a comprehensive Cancer Service network, Collaboration and partnership and finally a strong national policy. HE President Museveni made this clearer in a guidance during the commissioning of the modern outpatient and research building from the Fred Hutchison Cancer Research Center and USAID. He stated the need to have cancer prevention activities in all health center threes (Gombolola), need for regional cancer treatment centers and the development of center of excellence to focus on research, training and treatment of difficult cases.
The Government of Uganda engaged the WHO/IAEA joint program on cancer control to conduct a full-scale assessment mission. Meanwhile the government kick started transformation of the institute by major investment in infrastructure ; a six level cancer building was completed, construction of a new radiotherapy block adjacent to the completed six level wards is near completion. Renovation of the old radiotherapy building was completed, overcoming a major crisis created by the breakdown of radiotherapy machine in 2015. Now we boast of two functional machine with a third in the process of installation. This will be an ultra-modern Trubeam LINAC machine, the first of a kind in East Central and Southern Africa. Increasing treatment capacity from no machine to three within two years.
At population level cancer awareness has increased from near zero to 7% in ten years, there is increase access to care from 4% to 10%, meanwhile drug availability has gone up from 30% to 90%, survival of common childhood cancers has increased from 45% to 75%. The waiting time for radiotherapy has reduced from 3mnts to 3 weeks.
Internationally and regionally, Uganda Cancer Institute is once more visible as a renowned center for collaborative research once again. It has attracted premier academic research institutions such as Fred Hutchinson Research center (mentioned earlier), University of Cambridge among others. Most important the Institute is now the East African Centre of Excellence in Oncology.
The early lessons from the curiosity generated by research brought out initial need for a comprehensive approach to cancer in Africa from Uganda. The danger of impulsive policy reversal for a delicate area has been shown, leading to increase burden of cancer triggered by HIV and demographic factors unmet need led to recourse to hospice care for all cancers. The current policy strategy which reinstated the autonomy of the institute to focus on the ever-increasing cancer disease burden and need to be sustained to maximized benefit, which are already evident. This include increase funding, new infrastructure, increase collaboration, decentralization of services through regional cancer centers and becoming the East African Centre of Excellence in oncology. With this in place, the focus should be on maximizing the institute’s stature as a Centre of research, innovation and capacity building on cancer to meet the need of Uganda and beyond.
Dr. Jackson Orem,
Executive Director Uganda Cancer Institute,
Upper Mulago Hill Rd,
P.O.Box 3935 Kampala,
Phone: +256 414 540410,
Email: [email protected]