Tuberculosis the Silent Epidemic in Uganda s Greater Northern Region

Transcription

1 a not-for-profit company Briefing on Research Findings TB 01 June 2018 Tuberculosis the Silent Epidemic in Uganda s Greater Northern Region By Norah Owaraga I have Tuberculosis (TB)? For me I had TB and I was not even suspecting it. You know in this lifestyle of ours and also smoking. I would think that may be this cough off. is coming on and Sometimes there would be general body weakness, you are down, and you are coughing. About the author: Ms. Norah Owaraga, a cultural anthropologist, is the Managing Director of CPAR Uganda Ltd. Owaraga has a Master of Science Degree in Development Management from the Open University UK. Her first degree is a Bachelor of Arts in Communication Studies from Queen Margaret University, Edinburgh, Scotland, UK. Until I went for that diagnosis is when I was able to realise that it was TB. It is not simple for someone to stand up and say: I think I must be having TB. TB Survivor Respondent, Greater Northern Region CPAR Uganda Ltd Investigation

2 People infected with pulmonary TB (PTB) Testimonies that were shared by respondents in a CPAR Uganda Ltd (CPAR) qualitative investigation into PTB confirm that PTB prevails in the greater northern region of Uganda; a region which includes: Karamoja, Lango, Acholi and West Nile sub-regions 1. At least, two PTB survivors, in fact, were among respondents who participated in a focus group discussion (FGD) that was part of the CPAR investigation for northern region. During the FGD, the two survivors shared their personal experiences with the disease. Both of them, such as the respondent whose testimony is shared at the beginning of this brief, testified that they were taken by surprise when they found out that they had PTB. That people in the northern region get surprised when they find themselves infected with PTB is interesting; considering, for example, that all the respondents in the CPAR investigation for northern region expressed familiarity with the disease. Unlike the two PTB survivors, however, the experience with PTB for the rest of the respondents in the CPAR investigation for northern region was apparently through their interactions with persons confirmed infected with PTB; and or with persons suspected or presumed infected with PTB. Respondents in the CPAR investigation for the region were experts and community members, who participated in the investigation through one-on-one interviews or in a FGD. The depth of their interactions with PTB varied. Some were survivors. Others had had very close interaction with the disease and knew PTB patients or survivors, including: relatives, friends, clients, colleagues, and community members. Their close interaction with PTB can be deduced from their testimonies: At my home I had two people, my elder brother and my elder sister they suffered a lot from TB. Inside the ward there are six MDR (multi-drug resistant)-tb patients. Also we have some MDR-TB patients who have been discharged, they come and collect drugs and go home. The first patient in Uganda who has MDR-TB was from a district in this region. Yes, MDR-TB patient zero in Uganda was from a district in this region, the record shows. The patient is still alive, although the patient is not that healthy. I suspected one refugee had TB and it was confirmed from the government hospital. We had patients on our record that were diagnosed and not put on treatment. One of them has just been discovered, because I remember there were five. Just this morning I interacted with one (a PTB patient). Even some of our students had TB. Even in our homes, we have them in the villages. As I move to monitor health centres and hospitals, I interact with such groups (persons with PTB). Other respondents confirmed prevalence of PTB in the region, seemingly, doing so on the basis of folklore. Take, for example, one of the respondents who believed: there are people on the island that are unidentified and they are too many. Those are what we call, high chance of having TB people. 1 Details on the CPAR qualitative investigation into PTB are contained in its two reports titled: Research Activity Report on Qualitative Investigation into Tuberculosis in Uganda (2017), and Findings of Qualitative Investigation into Pulmonary Tuberculosis in the Greater Northern Region of Uganda (2018). PDFs of both reports are available to download free from the Tuberculosis page on CPAR s website Research Findings Briefing TB 01 Page 2

3 PTB epidemic The respondents in the CPAR investigation for northern region are of the view that the PTB scourge is widespread in their region. Several of the respondents expressed anxiety that something must be done urgently to handle the issues of TB, because it is on the increase, as one respondent asserted. And, moreover, TB does not have the boundary. It is not a poor person only who is dying of TB, even rich ones, even educated ones, they are dying, cautioned another respondent. From the CPAR investigation in northern region, a school of thought emerged, which postulates that, in the past, PTB was not common in three of the four sub-regions of the region; but that it is now wide spread throughout the entire region. One of the respondents, for example, explained thus: TB in the past was not common. When I grew up, TB was unheard of. They were telling us TB was common in Karamoja, because those people used to take milk directly without boiling. It was a rare case. In fact, in the village where I grew, I don t remember having any TB case. The thesis that PTB is now more widespread in the region was supported by other CPAR investigation respondents; some of whom testified as follows: In the TB ward, I find it always, the number is never reducing. The patients are increasing more and more. And when I try to interview where they come from, you find that they cover a greater area, not only of this district and even this sub-region. So, TB infection in my community is still high. By the way for your information, a district in this region has the second highest number of MDR-TBs in the country. Second to Mulago and yet Mulago is a national hospital. In government facilities, an overwhelming number of TB patients go there. Only that you are fortunate that you have not seen them, they always come here, saying am suffering from TB. The influx of refugees into the region from neighbouring countries is among the major reasons that precipitate the spread of PTB in the region, according to some of the respondents; of whom one explained: The situation in our neighbouring country is just cantankerous. When they come they come with their all sorts of diseases. All sorts of diseases are there, because there is no governance there. While we are doing immunisation, to them it is: to whom it may concern. So this peace is also a problem to us, because of bordering that country. While we are trying to kick polio out, they are still coming with their polio things there. So we are very vulnerable because of proximity to that country. Another major factor that contributes to the spread of PTB in the region, according to the CPAR investigation respondents, is HIV. Apparently, according to the respondents, most of the PTB patients in the region are coinfected with HIV. In the past, the issue of HIV was not so strong, but the situation now is that TB seems to have come with a friend, HIV; in fact, they are relatives. The HIV-TB association is to the extent that apparently people in the communities in northern Uganda now strongly believe that where TB is, HIV is or where HIV is, TB is; a perception that is apparently reinforced by medical best practice, which encourages medical personnel to take precaution and to always test for TB among HIV and AIDS patients. TB, after all, is considered a deadly opportunistic disease that hastens the demise of HIV and AIDS patients. Research Findings Briefing TB 01 Page 3

4 In addition to the protocol of testing for the two infections TB and HIV at the same time, the common practice at healthcare facilities is to locate the management of TB within the specialised HIV and AIDS clinics - the Antiretroviral Therapy (ART) Clinics. The CPAR investigator, indeed, did observe that the practice of locating TB management within ART clinics is a common practice in the northern region as well. The overt joint management of the two diseases, according to the CPAR investigation respondents, has caused people to believe that if you go to the hospital they are not only going to test for TB ; and also that it makes people to feel that whenever someone is diagnosed with TB that is automatic HIV ; a status quo which generates fear to go to hospital, because others will talk: you see that person now has HIV. Stigma apparently, therefore, is the underlying factor that stalks fear among presumed or confirmed PTB patients, which deters them from overtly and freely seeking PTB diagnostic. Because of the stigma attached to HIV and AIDS, the belief that where TB is, HIV is or where HIV is, TB is, puts on the defensive people who are presumed to be or confirmed as PTB patients and their caregivers. Apparently, such PTB victims then feel the need to clarify their HIV status and how they may have been infected, if they be infected. A testimony of one of the respondents beautifully captures the essence of how the where TB is, HIV is or where HIV is, TB is perception puts PTB victims on the defensive: The two TB patients, the first borne and the second borne, were staying together in the same house, but they contracted TB from different sources. This is because we found out that both of them they were HIV positive and they were brother and sister. No, they did not co-infect each other with TB. Obviously, the community around stigmatised my sister and my brother. Others, they blame you for getting TB, because they think that maybe you got that one through HIV. That is when they will push the blame on a patient that you don t stay safe; that you misbehave; that that is the profit you get. Just like that. I don t know how they can remove it from peoples minds that if you are having TB you necessarily have HIV. Conclusion and Next Steps As part of the University of St. Andrews led Tuberculosis: Working To Empower the Nation s Diagnostic Efforts (TWENDE) 2 Consortium, from January 2016 to December 2017, CPAR conducted an in-depth qualitative investigation into PTB in Uganda. This briefing is based on a second level analysis of the CPAR TWENDE qualitative data set for northern region; and, moreover, it contains the findings for only one aspect prevalence of PTB in the region. In a series of subsequent briefings that CPAR intends to author, it shall share its findings on other aspects of PTB in northern Uganda. All its briefings, including this one, CPAR will publish as PDF files that can be downloaded free from its website 2 The University of St. Andrews was the TWENDE Consortium Coordinator under the leadership of Professor Stephen Henry Gillespie, Professor of Medicine; Dr. Ewan Chirnside, Director of Knowledge Transfer Centre; and Dr. Wilber Sabiiti, Senior Research Fellow in Medicine. Research Findings Briefing TB 01 Page 4

5 Acknowledgements Prof. Christopher Garimoi Orach (PhD, MPH, MMed, DPH, MBChB, & Certificate in Health Emergencies) in his capacity as the CPAR Board Chair voluntarily provided direct technical supervision to the Investigator. Prof. Orach is a medical doctor; a professor of public health; and is currently (June 2018) the Deputy Dean of the Makerere University School of Public Health. Mr. Alex Bwangamoi Okello (MBA, BSc, DipEdu, DipPA, FCIS) in his capacity as the CPAR Finance Committee Chair voluntarily provided direct administrative supervision to the Investigator. Mr. Okello is an administrator who is currently (June 2018) serving in the highest position in the civil service of Uganda; serving as the Permanent Secretary of the Directorate of Ethics and Integrity in the Office of The President of the Republic of Uganda. CPAR was beneficiary in the Grant Agreement: CSA , between the University Court of the University of St. Andrews and the European & Developing Countries Clinical Trials Partnership (EDCTP) Association to implement TWENDE in Uganda. The EDCTP Association funded TWENDE under its second programme, EDCTP2, funded by the Horizon 2020 European Union Funding for Research and Innovation. Disclaimer: Whereas, the EDCTP Association and the European Union provided funding for the TWENDE Project, the views herein expressed in this brief, a product of the TWENDE project, are not necessarily those of the EDCTP Association or those of the European Union. Research Findings Briefing TB 01 Page 5