Strategic HIV/Public Health And Strategic Human Rights Defenders’ Activism: Who is Best Suited To Fight Against HIV ? My Ugandan Experience 1999-2019


Why I am Involved:

The year is 1999. It was a cold night around 2:00 am, the fisher-folk of Kkome Island in Lake Victoria are preparing their nets and the kerosene lamps are hissing ferociously. They have to do this unfurling of nets, placing bait, buoys and all the while labelling them before they cast off. We were a team of health workers from the MoH residing in a large log shelter a distance away and had come to conduct a planned HIV Prevention and Care activity. I had been here earlier and as the harbinger had mobilized 521 members and prepared them through health education drives. By the time the larger MoH team came, the islanders were willing to participate and within another week we were winding up our work here.  When the team had left, I stayed longer to ensure that the three males I had identified for follow up took their medication to completion. I used all forms of placating borrowed from the book of reassurance. They were diagnosed with anal gonorrhea and were part of a larger network of males engaged in commercial sex-work (CSW). That was the term then and this is in the late 90s, when all sorts of apocalyptic narratives are traded by communities. We later left Kkome and went to Mukono Government Hospital where I talked to an In-charge and the three males were booked for further examination. Mukono happened to be the birth home of one of them and he had a place all three could stay. We arranged to meet after a week. Alex (19), Jaffa (21) and Martin (20) then became my first key informants of larger networks of Male Commercial Sex-Workers spread across Congo, Uganda and Kenya. I had time on me and we devised mechanisms to visit as many as time would allow me. I came up with what I called an STD/First Aid travel kit which I used for basic medical care. That is how I became the HIV/Public Health Activist. Along the way, I helped attach many others to HIV Prevention and Care Services. I remember then, Septrin/Cotrim was a basic pack medication and made sure I had many tins with me. I was introduced to more numbers who had acquired HIV and did the needful by linking them to care as well as support them as best I could. Since then, I have never looked back and have never abandoned the Ugandan LGBTIQQ Community at all. 

HIV/AIDS:

In June 1981, scientists in the United States reported the first clinical evidence of a disease that would later become known as acquired immunodeficiency syndrome, or AIDS. Its cause, the human immunodeficiency virus (HIV), was identified in 1983. Since the start of the epidemic around 78 million have become infected with HIV and around 35 million people have died of AIDS-related illnesses. In 2017, there were 36.9 million people living with HIV (UN).


Activism: The desk versus grassroots:

Activism has its characteristic triad: The initiators; adaptors; sustainers. In early 2000s, there happened to be two arms: Human Rights Defenders and the lesser acknowledged HIV/Public Health Activists. I was both. I have many skills and one of them is Community organization so I made sure I passed on skills freely.  Most especially organization development, community diagnosis, visioning and participatory planning. I donned a humility so down to earth that at one time, I was even denied admittance at one big organization’s offices. I was asked by one of the Activists then to meet the other Activists so that we form a unified force. When we reached the gate, this one Activist who was to introduce me to the others asked me to stay outside.  After sometime, this one activist returned and told me I was not welcome to that organization’s headquarters ever. It was there and then that I made up my mind to stick to HIV/Public Health where dedication does not require permission from powerful leaders of organizations. It is human nature to despise humility in people even when that person is highly educated. I forgave them. The issue of working behind a desk and doing grassroots work divides Human Rights Defenders from HIV/Public Health Activists. These are the images the two sustain. The desk versus grassroots. It is these that become the oil on which the two themes run. But both are Human Rights Activist themes!


Of Symbolism And Dullness:

I am an HIV/Public Health Activist. If ever there is an award waiting, I want it to read like that. There are two other equally resourceful medical doctors I recall who were passionate about helping people living with HIV. We met and shared notes. We were bound by the Hippocrates Oath of doing no harm and this meant avoiding certain venues and arrangements which were popular among other Human Rights activists. While we cautioned that lifestyles should embrace the holistic and careful normative, we were ridiculed as old fashioned. The norm was to go full throttle, no protection and after all there was no literature pointing to HIV transmission via multiple partners engaging in vagina-vagina sex or penile-anal sex. Those of us who cautioned protection and holistic life were sidelined from core meetings. This was not helped by the fact that once one embraces HIV/Public Health grassroot work it takes one away from street glitterati. The sequence of events are different. And this is when the dissimilarities of the two different approaches were further concretized in my case. Human Rights Defender Activism thrives on extrinsic symbolism, has vibrancy, thrives on groups, flamboyancy, has much fire, galvanizes many and is delightful only when there are fireworks. The right to assemble is visible and requires many to partake of that claim. HIV/Public Health Activism on the other hand is dull, routine, medical, confidentiality-heavy and as delightful as a tortoise falling from the sky!


What Public Health Is And Is Not:

I have worked in many countries now and have read widely too. Public health succeeds and survives within a milieu of motivated organizations and coalitions who are ready to set aside the glitterati and embrace the grassroots as they are. Frieden (2014) , illuminates us further on  6 key  Public Health areas and these are: (1) Innovation to develop a system to connect real time needs to interventions known simply as evidence base for action; (2) having the readiness and mental preparation to make quick intervention-related decisions i.e., a technical package of a limited number of high-priority, evidence-based interventions that together will have a major impact; (3) have the team motivated enough and committed to achieve a goal i.e., effective performance management, especially through rigorous, real-time monitoring, evaluation and program improvement; (4) involve those concerned and aware of their pains to those who can address the pains i.e., partnerships and coalitions with public- and private-sector organizations; (5) communication of accurate and timely information to the health care community, decision makers, and the public to effect behavior change and engage civil society; and (6) political commitment to obtain/provide resources and support for effective action. 


I have always used these lenses and critiqued the Ugandan lay of the Human Rights Activism land. From 2002-2018,  funding for Human Rights Activism only went to Strategic Litigation and none to Strategic HIV/Public Health Activism. This pushed those of us who were into HIV Prevention area off the grid.  

Even the one drop-in centre that was providing services was hampered by provider bias. Honestly, we were pushed to using our own incomes to keep paying office space, caring for  those living with HIV and others in need (from now on referred to as Key Populations-KP). Yet, Strategic Litigation organizations were awarded billions. 10+ years of funding is not something one jokes with. With consistent funding, organizations thrive fully within 5 years. After 5 years they become supersonics. You may ask why HIV spiked among Key Populations in Uganda and I can give you one simple answer. Funding for Strategic HIV/Public Health was denied, under-used, cut off or if it ever was there it was shipped on a tortoise! We missed motivating the critical number of HIV Prevention Activists with a developed right temperament and attitude to commit to HIV Prevention and Care. My humble prayer is that PEPFAR Funding from now addresses this aspect.


A Case For Strategic HIV/Public Health:

It connects the person with the need to intervention. It is client-centered or person-centered therapy. The individual’s subjective experiences are what informs interventions. It is phenomenological. It facilitates the provider to really understand people by sitting down and talk with them, share their experiences and be open to their feelings. It encourages persons to explore themselves from the needs they have. Needs being: all those entities sought simultaneously in an intense and relentless manner, as an emergent collection of human development essentials such as recognition, shelter, identity and security. These are non-negotiable issues, cannot be traded, suppressed, or bargained. It maintains a focus on fulfilling peoples' unmet needs. It is facilitative and empowers one to engage in a whose person psychological attitude. It lays open the human rights of one living with HIV: 
.

The Human Rights of one living with HIV: 

Physiological: medicine, water, food, bed rest, warmth, companionship

Safety: ARV supply secured, ARV Adherence assured

Belongingness: Support groups, home, address, location

Esteem: Activities engendering participation; Anti-stigma; Anti-discrimination in all spaces; Anti-violence; demand for warm, genuine and understanding the contexts within which to work

Self awareness/maturity: Empowered to execute quality life improving activities, subject matter experts, use self-understanding; use self-concept, attitudes and self-directed behaviour to engage in self care


Temperament and attitude to commit to HIV Prevention and Care:

It is a process through which one understands the unique enablers/barriers to pre-exposure prophylaxis (PrEP), uptake and retention and their critical roles to successful viral load suppression.  Through it one gains skills to identify and motivate those eligible to start PrEP, increase uptake rates, ensure that those who started PrEP are retained. It ensures attendance rates in the initial four-week follow-up are adhered to. The activist is empowered in risk assessment, that way it is possible to predict patterns supporting or subverting prevention. One would be in position to deal with the facets HIV presents. One gains the right temperament and attitude to commit to HIV prevention and care. This person will be a navigator able to refer those who self-refer, will have the awareness that some cases arise after making outreaches, home visits or Community Health Campaigns. This person is conversant with the cost of doing HIV Prevention work which may include being called out of bed late in the night, working the entire weekend or attending vigils.  This is the person with a laid down plan for distributing Home Based Testing kits. This person is aware that distance to clinic, weather difficulties, transport affordability, housing conditions, nutrition and state of health can interrupt one’s ARV-supply. This means it can interrupt ARV adherence and suppression of viral load.  The HIV/Public Health Activist grows into the work. This person knows and fulfills the potential  of those served. It is important that they are valued as themselves. It is about deep and genuine caring for the client. Do not place the same emphasis on robotic schedules, routine, boundaries of time and techniques. One has to explore contexts within which humans gain full potential, enables them engage in pursuance of life as conscious beings capable of thought, reason and language. It is this person who understands human related incongruence and makes sure to reassure the beneficiary. A person’s ideal self may sometimes not be consistent with what actually happens in life and experiences of this person. The difference may exist between a person’s ideal self and actual experience, is called incongruence.

A Case For Improving Strategic Litigation As An HIV Prevention Medium:

Lawyers are community leaders. They are well schooled in social order, law and organization. Without organization, laws and order we would lose these 6 benefits. People would spend so much time in conflicts, they would not be incentivized to follow conventions or group norms, There would be no agreed upon source of authority to resolve issues, there would be no institutional cultures rewarding good deeds and deterring or punishing dangerous ones.

Care and commitment to beneficiaries is so important in the HIV care continuum. It requires continued awareness and recognition that HIV Care is long term and takes over. These are core values one has to adhere to. But, there are tendencies of some to fall victim of deindividuation, where people lose this awareness they neglect their charges and that is where HIV Prevention is derailed. If there is to be effective commitment, let it be planned and sustained. Less on fancy  neck-ties, liveried dinners, wine glasses, office overheads and more on the support of people living with HIV that way they experience the necessities to bring down viral load. 

Human rights are rights inherent to all human beings, regardless of race, sex, nationality, ethnicity, language, religion, or any other status. Human rights include the right to life and liberty, freedom from slavery and torture, freedom of opinion and expression, the right to work and education, associate and  many more. Everyone is entitled to these rights, without discrimination (UN).

Put on the hat of the human rights of one living with HIV. There is need to recalibrate away from the one shoe-fits-all deterministic, unconscious and instinctive forces determining human thought and behavior. These dehumanize the person living with HIV. Behaviorist perspectives characterized as deterministic, tend to follow scripts not relevant to the person in need. They focus on reinforcement of stimulus-response behavior and deny one of initiative. When one follows the human rights list of people living with HIV, one supports their self-actualization concerns, psychological growth, fulfillment and satisfaction in life. This means that each person, is seen in the unique ways they present. This person is allowed to seek quality health services which lead to growth psychologically and continuously enhance themselves. The  person's subjective perception and understanding of the world is enhanced too. Strategic HIV/Public health and strategic Human Rights Defenders’ Activism are both suited to fight against HIV if they are fairly facilitated, allowed equal opportunities and given goals to meet. These goals should then be basis for allocations.  

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