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Breaking the Cycle of Uganda’s Tuberculosis Burden

“Twenty five years ago, I woke up early in the morning, around 05:00 a.m. and I went to the spring well to fetch water. It is good to fetch drinking water very early in the morning. As I tried to draw water from the well, I slid and fell into the well. I stayed in the water for a long while and I lost consciousness before I was rescued. About three years after I fell in the well, I started to experience chest pains and I began to cough. I received treatment for chest pains and for cough, but

the pains and cough persisted. Shortly after, my husband passed away; and moreover he passed away during the hunger season. I had no help. I decided to return home to my parents. I came home together with my young children – three girls; my only son died as a baby. My parents allocated to me a plot of land on which I have built my home. I have built two grass thatched huts at my homestead – one is where we sleep and the other is a kitchen and store.

When the chest pains and cough persisted, I was referred to a government hospital in the neighbouring district. At that government hospital I was tested and it was confirmed that I had been infected with tuberculosis (TB). I was admitted together with other TB patients in isolation in a separate ward. I was put on treatment, injections. It was very difficult because I had to beg for help for someone to inject me and so my injections were irregular. I was far away from home and it was difficult for my people to come and see me and to care for me in hospital. While at the hospital in the neighbouring district, my fellow TB patients and I had to find our own food and firewood; and to cook food for ourselves.  Life was so difficult. I was not able to complete the injection treatment. I decided to come home.

My cough and chest pains did not go away and so I went back to the government hospital in the neighbouring district. I was put on eight months treatment – swallowing tablets. This time around I was able to access the tablets from the government regional referral hospital that is located in my home district. The medical personnel at the government hospital in my home district monitored my treatment. I was required to visit the hospital on a regular basis for check up and to collect more medication. I was able to complete the eight month medication and I improved. I am no longer on treatment. At the government hospital in my home district, however, a scan of my internal organs revealed that I have chronic soars in my chest. During the cold season the intensive coughing sometimes returns.

By the way, my youngest child also got infected with TB. I think I am the one who infected her. We got to discover that she was infected when she vomited blood while she was hospitalised at a hospital in another district. When we discovered this, we went back home to the government regional referral hospital where I was treated. My daughter was successfully treated and she is fully cured of TB. She is now happily married with children.”

This testimony, as narrated in February 2016, is of a 50+ year old woman, a TB survivor, a widow, who lives in a village in the rural area of Eastern Uganda. Sadly, her testimony is not unique in the context of Uganda. Experts at the National TB and Leprosy Programme (NTLP) of Uganda  estimate that there are 60,000 patients living with TB in Uganda. Uganda in 2014, according to the WHO Global Tuberculosis Report 2015 , was among the 22 high TB burden countries in the world – those which have a high number of TB cases. An estimated 4,000 Ugandans die of TB per year, according to experts at the NTLP. Doctors working in Uganda  find that a major challenge in tackling TB in Uganda is how to cure ignorance about the disease.  The doctors note that “people don’t know what the symptoms of TB are so they don’t seek appropriate healthcare so they don’t get treated and they die.”

The doctors’ observations of ignorance of symptoms of TB are indeed deducible from TB survivors’ testimonies. Also deducible from TB survivors’ testimonies is the stigma that is attached to TB. In the testimony above, a TB survivor shares that while at a hospital she had to beg people to inject her. Last, but not least, deducible from TB survivors’ testimonies is poverty as a determinant for successful treatment or not of TB. In her testimony, a TB survivor narrates how while at a government hospital she and her fellow patients had to fend for themselves, food wise. The long distances from home likely made it difficult for their families to afford the costs to travel to and from the hospital in order to care for the patients. In her testimony, a TB survivor shares how she gave up and went back home before the treatment was completed.

The costs for TB treatment are huge. According to experts at the NTLP it costs US$ 4,000 (12 million shillings) to treat one patient with multi drug resistant TB; and US$ 80 (240 thousand shillings) to treat one who is drug susceptible. The annual Uganda national budget allocation for medicine, lab reagents and operational costs for the effective diagnosis and treatment of TB should be to the tune of at least 11 billion shillings, experts at the NTLP estimate. For the year 2013, for example, the Government of Uganda (GoU) provided less than six billion shillings for TB control and medicines, according to experts at the NTLP. Insufficient funding for the diagnosis and treatment of TB arguably facilitates the vicious cycle that has sustained the disease in the Country. Uganda’s TB burden, moreover, exacerbates the Country’s HIV and AIDS burden. Researchers have found that if you are a TB patient in Uganda you are seven times more likely to have HIV and AIDS than when you don’t have TB.

Ignorance, stigma and insufficient funding aside, according to the World Health Organisation (WHO), a major challenge for controlling TB in Uganda is insufficient reliable data or information which can be utilised to inform policy. It is against this background that a team of academics and researchers have joined together in a consortium to contribute towards breaking the cycle of the TB burden in East Africa. They include research scientists, clinical researchers, pulmonologists, microbiologists, immunologists, paediatricians, physicians, public health specialists and cultural anthropologists from Uganda, Kenya, Tanzania and the United Kingdom (UK).The academics and researchers have partnered under the project: Tuberculosis: Working to Empower the Nations’ Diagnostic Effort (TWENDE). The TWENDE consortium consists of seven institutions – two from Uganda - Makerere University Kampala (MUK) and CPAR Uganda Ltd; one from Kenya – Kenya Medical Research Institute; two from Tanzania – National Institute for Medical Research – Mbeya Medical Centre and Kilimanjaro Research Institute; one from the UK – University of St. Andrews, which is the leader of the consortium; and the East African Health Commission of the East African Community.

TWENDE is operating within a theory of change (TOC) that is based on the assumption that empirical data can be collected which documents the barriers that hinder up-take and the opportunities that accelerate up-take of successful TB diagnostics. The logic of the TWENDE TOC follows that such empirical data once collected, documented and analysed can be a sound basis on which to engage policy makers with the view of influencing policy makers in a conciliatory manner that will encourage the translation of research innovations into policy and practice; thus improving access to TB diagnostics and medication. The TWENDE consortium, therefore, successfully designed and proposed a research study that has been awarded grant funding by the European & Developing Countries Clinical Trials Partnership (EDCTP) . The two year study (2016 to 2017) will be conducted in three East African countries – Uganda, Kenya and Tanzania.

In Uganda, under the leadership of Prof. Moses Joloba and of Dr. Alphonse Okwera, both of the School of Biomedical Sciences of MUK , during the second half of 2016, the TWENDE study will conduct a countrywide survey targeting as respondents the 113 District Health Officers (DHOs) of all the districts of Uganda. It is expected that the survey data will give an overview of the general state of TB diagnostics and treatment in the Country. As part of the TWENDE study in Uganda, using as a case study the WHO approved Xpert MTB/Rif and Line Probe assays, researchers of MUK, led by Prof. Joloba and Dr. Okwera, will conduct field audits of 59 health care facilities (HCF) that are located in 41 districts that are spread out in all regions of Uganda and that host 52 percent of Uganda’s population.

Qualitative data collection for the TWENDE study in Uganda shall also be done during the second half of 2016. It shall be led by Ms. Norah Owaraga of CPAR Uganda Ltd with support from Prof. Christopher Garimoi of the School of Public Health of MUK  Qualitative data shall be extracted from the completed survey questionnaires of DHOs and from the completed field audits of the HCFs. Additional qualitative data shall be collected through interviews and focus group discussions (FGDs). Interviews in Uganda shall be conducted  with 280 respondents who will include Resident District Commissioners, District Chairpersons, Sub-County Chairpersons, Village Chairpersons, District Health Officers, HCF administrators, GenEXpert  Unit in-charges, out-patient nurses in charge, doctors in private practice, TB patients and TB patient care givers. The interviews shall be conducted in 20 districts that are spread over all regions of Uganda and that host 27 percent of Uganda’s population. Nine FGD sessions shall be conducted in Uganda with a total of 225 participants (25 per session). The FGD participants shall include village residents as the majority, village level politicians, GenExpert technical staff and other medical personnel. The FGD sessions shall be conducted in nine different districts – one in each of the nine regions of Uganda. The districts in which the FGD sessions shall be held, host 13 percent of Uganda’s population.

Following data collection and starting from the second half of 2016 through to the first half of 2017, TWENDE researchers will analyse and process the data and will use it to author research reports, articles and opinions for publication in academic journals and in the media. TWENDE researchers will also use the data to author policy backgrounders and policy briefs, which documents will form the basis for TWENDE’s engagement with Uganda’s policy makers and implementers – policy dialogue sessions are planned. The media shall be utilised for targeted advocacy for policy development and or revision; or for good policy implementation.

 

TWENDE is confident that its TOC will hold true and that its research study project shall significantly contribute to bridging Uganda’s gap of insufficient availability of reliable data on TB for policy making and implementation. Importantly, also, TWENDE’s aspiration is to contribute towards increasing accessibility to TB diagnostics and treatment for the people of Uganda; thus breaking the cycle of Uganda’s TB burden.

 

By Norah Owaraga, Managing Director, CPAR Uganda Ltd

 

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