Responding with Compassion and Serving with Excellence Through Catalyzing Contexts for Universal Access to Antiretroviral Therapy: A Story of Long-lasting Love Shared in Many Households in Greater Masaka Region, Uganda
Picture Taken in 1987: Sister Ursula Sharpe, Medical Missionary of Mary (MMM), the Founder of Kitovu Mobile AIDS Organisation providing psychosocial support (PSS) to newly identified Persons Living with HIV in Kasensero, Rakai District.
Excerpt: This is a story given by Samuel Waliggo Ssegawa Who is the Executive Director of MOD Public Health Foundation Uganda, Worked as a Health Promotion Nurse from 2007-2017 at Kitovu Mobile AIDS Organisation (KM) in Uganda founded by the Medical Missionaries of Mary (MMM) from Ireland in 1987, which Pioneered Home Based Care Programmes for Persons living with HIV (PLHIV)
Interviewer (A Global Health Specialist):
TB, HIV, and Malaria Prevention have taken me to 25 African countries. There are several iterative interventional models that I can point fingers at but the one that embeds the Family-Based Therapy Techniques which in essence utilise the household as a healing space within familiar communities strikes me as relatable, one that fosters participation, is novel, cathartic, and durable. Samuel, I understand you’re one of those frontline health workers who treated people living with HIV and AIDS in Greater Masaka, Uganda in the second and third decades of HIV. Please share your own recollections and experience informed by HIV and AIDS in the Greater Masaka Region.
Interviewee (Samuel Waliggo):
In one sentence! This was a scary time for me. I did see with my own eyes families that were famous in the villages around where I grew up losing father, mother, bigger brother, bigger sister, the first, last born, uncle, auntie, elder, youth, child, and teenager. I know so well what it means to lose close people or people who made your toddler and childhood experiences memorable. A home where we would gather to play a banana fiber ball would become desolate by the end of the year. The home would be abandoned and a banana stalk left in the front yard as a reminder and a haunting symbol of death that took the entire family.
Interviewer:
The story of TB, HIV, and Malaria Prevention is a story of pain but also of resilience. Do you want us to stop a little while as you recollect your thoughts?
Interviewee:
No, I want us to go on because I am telling this story for many who are now silent, for many who braved the stigma and built systems of support, for many who left the comfort of their safe zones, committed time, and other resources to bring back the experience of humanity and joy to many parts of Greater Masaka Region which was HIV ground zero. I am telling this story because not all villages were decimated and not all people lost hope. I was fortunate, I went to school through my Primary in rural Uganda and managed to join the School of Comprehensive Nursing at Masaka.
Interviewer:
Wonderful! Please go on and share more about this.
Interviewee:
This college is part of the Masaka Regional Referral Hospital Campus and it is where the AIDS Health Foundation (AHF)’s Uganda Cares is also located. Uganda Cares was established as a clinic in Masaka in 2002. In close partnership with the Ugandan Ministry of Health, they are the ones who offered Anti-Retroviral Therapy (ART) outside the Capital City of Kampala. I got fortunate and was placed at the AHF for my clinical internship between 2002-2005. I witnessed the first enrollment of people who got ARV in the Greeter Masaka District without paying out-pocket money. The excitement and memories are still vivid in my mind and that alone brought psychological wellbeing to those who were suffering. Due to my willingness and exposure I got fortunate to remain after my internship had ended. I was mentored as one the first health workers who got robust HIV management training such as the Integrated Management for Adult and Adolescent Illnesses (IMAI) sponsored by the Ministry of Health and the World Health Organisation (WHO). In 2006 after graduation, I had the opportunity to offer to volunteer at Uganda Cares for 6 months since I was already knowledgeable in providing care and support to people with HIV who were suffering in pain from devastating opportunistic infections. I would have gone on to join another facility where I would have got a salary but chose to volunteer at Uganda Cares. This decision turned out to be a game-changer for me as a provider.
Interviewer:
Game-changer? Please explain.
Interviewee:
Yes, it was a game-changer for me in that I took up responsibilities and roles that increasingly made me so occupied with caregiving. In the process, I got the trust of my superiors and the community members. I used my time to foster ART Adherence practices and at the same time acquired the Community Navigator knowledge, skills, and attitudes that make any healthcare provider more accomplished. By accomplishment, I mean having the right temperament to be mentally, socially, and physically balanced at a personal level. But at the same time a dependable person at professional and productive levels.
Interviewer:
If I got it so well, you mean that you were able to connect the local experiences to the national prevention policy, planning, and programming goals. I hope I am right.
Interviewee:
Yes, you have made the connection and it is spot on. Getting averages from several prospective cohort studies that measured the occurrence of new infections in a well-defined HIV-negative population followed over time and tested at regular intervals for HIV infection within Greater Masaka by different health units showed readings very much similar to those of the UDHS 1997-2007. These put the HIV prevalence to be about 18%. Yet, the National Average was 6.4%.
Interviewer:
I realise that meant that your units had to improvise local interventional models that suited Greater Masaka.
Interviewee:
Sure, we had to use local means to get as many people living with HIV on medication as possible. This meant a re-organisation at work. It also meant longer schedules that fit into the health-seekers needs. We would work over weekends, we had to open all through the day and had to have a shift arrangement which had to be sustained. We had to cut the coat according to the cloth available. I am so glad I persisted, was immensely involved in my work, and was able to figure out the trends.
Interviewer:
Right! You knew your epidemiologic nuances, your stats, your incidence, and your prevention needs. What other changes took place around that time?
Interviewee:
Around that time, the Kitovu Mobile AIDS organization (known as Kitovu Mobile or KM) put up a call for a Registered Nurse who had experience in administering ARVS. I applied because I wanted to experience their version of HIV Care culture. I had harboured the desire to work with Kitovu Mobile and was enamored by their Family-Based Therapy Model. This was one of the novel home care programmes providing psychosocial support (PSS) directly empowering household members to be involved in care. The households were provided support that ensured food security, housing stability, life planning counseling, and Orphans and Vulnerable Children (OVC) support to registered people living with HIV and cancer. When I was accepted to work with them, I literally hit the road running.
Interviewer:
This is a gripping narrative. Tell me what else comes to mind.
Interviewee:
I have many interesting moments but perhaps the history of Kitovu Mobile to me is a story of healing and resilience that resonates so well with many other people. I know so well, how people never wanted Four-wheel vehicles with big names emblazoned on the doors parked in their homes. Strangely enough, we did not get this kind of inhibition from all our health-seekers.
Interviewer:
How was that?
Interviewee:
In our case, we used to camp in an area for weeks. Our services were staggered across the entire Greater Masaka and each region was served on particular days. We provided enough supplies to take the households for a time. This meant that we were only in the area for a short while. This approach had its benefits and one of them was revolving around empowering Community-Owned Resource Persons (CORPs) to catalyse adherence. It is through these CORPs that we got to know what was on the ground. The regular trainings we provided the CORPs eventually turned out to build a critical mass of Volunteer Health Promotion Mobilizers most of whom are now the Village Health Team (VHT) members.
Interviewer:
You promised to share a little bit of the origins story of Kitovu Mobile (KM).
Interviewer:
Oh! Yes!
It was started in the late 80s by the Medical Missionaries of Mary (MMM) from the Republic of Ireland as an emergency response to provide counseling services to vulnerable children who had become orphans when they lost their parents and guardians by the rare disease which later came to be known as HIV and AIDS. By 2007, The organization had over 10,000 registered Persons Living with HIV in the programme on psychosocial support.
Interviewer:
I recall reading with fascination that in March of 1987, the Food and Drug Administration (FDA) approved a medication called zidovudine (AZT) as the first antiretroviral drug for the treatment of AIDS. When was the first ARV medication prescribed in Uganda?
Interviewee:
The ARVs did not arrive in 1987 in Uganda. It would be another 10 years that those with no money could access the ARVs. I would be amiss of the times if I did not mention the scenario in Uganda as far as medications went. Miracle workers sprung up here and there. Herbalists had their field day. They concocted mixtures that were bitter. The bitterness was meant to command belief in the herbs’ potency. The greener the better. Then later brown concoctions took the day. Many more people joined the list of those promising cures. It was also a time we had Nnanyonga of Lutunku in Ssembabule who claimed that a special soil cured HIV. There were several attempts to provide products on the market such as when Professor Dr. Ssali Charles claimed that his Mariandina Pill cured HIV. There were many other announcements of cure around that time including some Religious Denominations.
Interviewer:
The period from 1986 to 2006 was an interesting epoch as far as HIV Prevention and Care went. But perhaps that can be best dealt with in another interview. But briefly, around 1992, the Joint Clinical Research Council (JCRC) in Uganda had pioneered the use of Anti-Retroviral Therapy (ART) in sub-Saharan Africa. This was made possible through a research project to determine the lowest effective dose of Zidovudine. Did you come across Persons Living with HIV who were also part of the Clinical Trials then?
Interviewee:
As far as I am concerned so much was going on at that time. I never knew any individual who was on any ART Trial. It was a blinded approach. However, I recall that it was the JCRC that set up a network model to increase access to ART treatment in the Uganda. But, this is moving so fast into the times when people had ART. I want to tell you that before ARVs were universal, Kitovu Mobile in collaboration with Hospice Africa, Uganda provided palliative care to 700 people with HIV-related cancers mainly Kaposi's Sarcoma, Cervical Cancer, and other painful conditions that needed full observation in a hospital setting due to Pneumonia and Cryptococcal Meningitis.
Interviewer:
I am sure those were busy times for many in the healthcare field and in the households where People Living with HIV resided.
Interviewee:
Yes, if one were to use the idiom: “having one’s hands full,” this was the right time to say it. The scenario at Kitovu Mobile was to care for health-seekers in over 111 community settings through planned outreaches. Our venues were mainly on verandas of the different Catholic Churches in the extensive networks of parishes; sometimes we camped under tree-shades; Local Council (LC)1 Leaders’ homes; or at the homes of Village Health Workers (VHWs).
Interviewer:
I know that around the time between 2000-2005, ARVs were only provided at select health facilities under Clinical Trial limitations. Later when they were approved for use, ARVs were accessible to those who could afford them. There were concerns that treatment was too expensive, too complex and that drug resistance would be promoted by the existing or non-existent and inadequate programmes. I recall it was said that ART would not be cost-effective and that prevention interventions were to be prioritized.
Interviewee:
Sadly, these were the debates! A positive HIV diagnosis was a death sentence. But unlike in the Western world where all signs pointed toward HIV becoming a disease to be treated as a chronic ailment, it would be a different scenario for many Low-Medium Industrialised countries. A call to have the ARVs subsidised rose up in many corners of the world. It made sense for us to join the ranks of activists and advocates. So, we picketed, made noise, and asked governments to call on pharmaceutical companies not to hike the ARV prices. Before we were able to provide ARVs to registered programme participants, we witnessed people dying from wasting syndrome (Slim disease), Tuberculosis, Meningitis, Depression, Suicide, and Malnutrition in various households.
Interviewer:
What kept you going now that there were so many deaths around you?
Interviewee:
We had self-care protocols that addressed burn-out built in the Prevention and Care services we provided. Also, my earlier connections with Uganda Cares came in handy. The Uganda Cares Medical Director, Dr. Francis Ssali, and the next in charge Dr. Florence Tugumikiriza are colleagues with whom I had cultivated a friendship outside of the clinic. We continued interacting and sharing lessons. It was at one event when we were sharing about mapping the most at-risk zones that I was told of the new policy of rolling out the ARVs. Uganda Cares was provided a larger quota of ARVs to be distributed in the Greater Masaka region. This change in policy meant a change in posts at Kitovu Mobile. I became a Patient Navigator and Advocate.
Interviewer:
Did this make it any easier? If so how?
Interviewee:
Yes, it contributed to better service delivery and Quality of Life (QoL) for our programme participants. The protocols included providing a transport means for all health-seekers to Uganda cares so that they start ARVs. The second protocol provided that once they got their medication, then they had to be returned to their home communities. The third protocol was that Kitovu Mobile committed to following up with the participants for any reaction, shock, and toxicity. We transported 1000s of programme participants to Uganda Cares to be enrolled on ART and then we were allowed to follow them through our 111 community outreaches that were found in rural communities of the Greater Masaka Region and beyond. We served a catchment that stretched from Rakai, Kalangala, Bukomansimbi, Ssembabule, Lyantonde, Masaka, Gomba, and Kyotera districts.
Interviewer:
I can note innovative models such as Family Based Therapy, Community Based Healthcare Services, and Community Health Outreach Services that meant you must have trained a critical mass of stakeholders to participate in the Prevention and Care continuum.
Interviewee:
Yes, and it is interesting to note that Kitovu Mobile had the concepts such as Resilient and Sustainable Systems of Health (RSSH); Integrated Service Delivery (ISD); Differentiated Service Delivery (DSD); Public-Private Mix (PPM); Social Protection (SP); Community Systems Strengthening (CSS); and Communities of Practice (COP) embedded into her community prevention and care structures. We had over 750 trained community workers (CWs) whose roles were mainly to coordinate the linkage of programme participants to mapped and designated outreaches and catalyse continued demand including seeking care for Opportunistic Infections, TB, and Malaria. When ARVS were introduced in 2006, through working with Uganda Cares, we trained 120 Persons Living with HIV who were certified as Experts and over 10 counselors who were named HIV Prevention and Care Medics by Uganda Cares. We made sure that each outreach had at least one such trained Subject Matter Person Living with HIV to mobilise other Programme participants, follow up, visit, monitoring, and support adherence practices for each programme participants enrolled in ART.
I remember, the Ministry of Health teams visiting us every month. We introduced quality improvement teams and improved our HIV data management, we then started using Health Management Information Systems (HMIS) called Open Medical Research Statistics (MRS) which was a collaborative HIV Systems Strengthening by the Ministry of Health and University of Liverpool UK. We worked with local community networks and through stakeholder Population-Based Community Structures (religious leaders, Traditional Leaders, VHTs, Schools, and Local Council leaders). We established the critical Prevention and Care structure that won the accolade of a Center of Excellence that was used to benchmark other such entities.
Interviewer:
Thank You. Can you please tell us more about that? What do you mean by a center of Excellence?
Interviewee:
I will try to tell this in just simple terms. From around 2006-2012, monitoring of patients was just by clinical classification. What I mean, classifying various opportunistic infections (OIs) depending on severity into stages one, two, three, and four together with other parameters such as functionality status, monitoring adherence, and Retention in care. At that time, access to CD4 count monitoring was very rare. Our service protocol went beyond clinical interventions but addressed the whole human being. We also used to carry blood samples of the luck patients from the various outreaches to Uganda Cares and sometimes to the Medical Research Council (MRC) and Rakai Health Science Programme for CD4 counting especially for those patients who needed a switch to second-line treatment containing LPV/r. We were trained in HIV clinical management, assessment to monitor the progress of those on ART, and using parameters to assess early warning indicators of HIV drug resistance (EWI). Therefore, Kitovu Mobile HIV Clinic became the clinic with the highest treatment outcomes in terms of adherence retention and survival for those on ART in the Greater Masaka Region.
Interviewer:
Tell me more about the bench-marking.
Interviewee:
Various stakeholders, CSOs, and Government ministries such as the Ministry of Gender Labor and Social Development came to Kitovu Mobile to learn from our HIV and OVC Home-Based Care model. We then received various funding from partners such as CAFOD UK, Steven Leos Foundation, Gorta Ireland, and Medical Missionaries of Mary to scale up ART service to all our entire outreaches in the Greater Masaka Region. Our community model is a proto-type of the new funding models of the Global Fund. We provided capacity strengthening to over 1000 community volunteers, our staff supported over 250 government ART health facilities to assess early warning indicators for ART drug resistance, and our outreaches became a one-stop center for ART services, Palliative care, Psychosocial Support (PSS) including socio-economic strengthening for People Living with HIV and their households. Since we had established a strong support network of community workers and Subject Matter Experts at each outreach, they supported programme participants to overcome HIV-related stigma, access anti-TB medications, Antimalarials and treatment for Opportunistic Infections. Most of our programme participants would freely talk about their HIV status. This quickly facilitated an update of HIV Testing and Counselling services in all our catchment areas. This and many other outcomes qualified us as a Center of Excellence.
Interviewer:
I am so happy to hear about your contribution to the provision of HIV medicine to people who were suffering in those hard days. Can you please now tell us what was your motivation to serve vulnerable people?
Interviewee:
Gladly! We had strong teams that were empowered and passionate to serve those who were vulnerable. We picked this spirit from the medical missionaries of Mary (MMM). We would go out every day in teams of 3 or 4 in different Land cruisers and after work, we would have a mini-picnic to celebrate the end of day. I think all of us who participated in the rollout of free ARVS were motivated by knowing that the ARVs were timely and lifesaving medications. We enjoyed initiating ARVs. This reduced the number of hospitalizations, and catastrophic costs at the different households, and were thrilled to see many thriving to full health. We were able to conduct home visits to track those left behind and were unable to come to outreaches due to transport failure. This also was an opportunity for ARV adherence monitoring. These were wonderful experiences that allowed us to observe the different support networks in their families and households. Lastly, we were motivated by the founders-Medical Missionary of Mary (MMM)’s slogan “If you lacked something or Kitovu Mobile lacked funding, please tell the patients to pray.”
Interviewer:
Are there any turning moments you remember in your care and support for People Living with HIV and AIDS in the Greater Masaka Region?
Interviewee:
Lots of them. The one that sticks out strongly is the introduction of ARVs. However, the other important milestone was that Kitovu Mobile programme participants became research participants in Cotrimoxazole and Fluconazole studies that were conducted by the medical research council (MRC) and Uganda Virus Research Institute (UVRI); as well as the circumcision study as a combination HIV infection prevention approach by Rakai Health Science Program (RHSP). When Cotrimoxazole prophylaxis was introduced, significant opportunistic infections including Pneumocystis jirovecii pneumonia, Toxoplasma gondii, and Isospora belli, and Cryptococcus meningitis reduced among People Living with HIV. We also conducted HIV stigma index surveys among our clients and provided results to stakeholders for service planning and programming. Lastly, the introduction of Task Shifting Approaches allowed Nurses to prescribe ARV for HIV patients and this allowed more health workers to play a catalytic role fostering demand for ARVs in Uganda.
Interviewer:
Please explain more about that.
Interviewee:
When ARVs had just been introduced, It was only medical doctors who were supposed to prescribe ARVS to eligible and assessed clients. Now remember we were in the movement of scaling up HIV treatment. Around that time, Organizations had their own internal processes like First in First Out (FIFO) meaning one provided ARVs to those who were registered first regardless of the clinical status of other eligible patients. People living in rural areas already had poor access to basic and quality healthcare services. Uganda still has so much going against her as far as healthcare services are concerned. Seventy (70%) of doctors practicing are based in urban areas, where only 20% of the population lives; the coverage in rural areas is much worse: one doctor is for every 22,000 people[1]; health-seekers are faced with long waiting times at the health facilities; poor attitude by health workers; lack of drugs, medical and laboratory equipment; and an uncoordinated referral system coupled with long distances to health facilities, means that there are low health-seeking practices. Many people still die because they do not have a chance to see a doctor for a correct diagnosis of HIV related Opportunistic Infections, and further aggravated mortality of already hopeless HIV patients, single-headed families, Orphans, and Vulnerable Children (OVCs), school dropout increase in every household.
Armed with the above evidence, we called upon Governments, development partners, and Civil Society Organisations (CSOs), communities, and client representatives e.g., Subject Matter Experts and HIV Medics to raise their voices so that policymakers could allow registered nurses, Comprehensive Nurses, and Midwives to prescribe ARVs under the direct supervision of Medical Officers at the different health facilities. We also conducted and participated in task-shifting research with organizations like Population Council, US that provided evidence on the need for task-shifting roles to enhance service quality experience given the health-seeker workload that existed in all HIV health facilities. Our movement was successful. Now trained nonclinical people like HIV medics can prescribe, deliver, and monitor ARVS to eligible programme participants.
Interviewer:
I can imagine, the cost of running HIV outreaches under your home-based care programme was high. How did you manage the situation?
Interviewee:
You just reminded me of something. You're right the cost was high and that is why we had support funding from donor agencies such as CAFOD UK and Gorta Ireland to support our home-based care program for over 20 years. Institutions such as The Ministry of Health (MOH), World Health Organisation (WHO), and Medical Access Uganda were responsible for staff and organization capacity building in quality of care including ARV supply chain management. Between 2010-2013, funding trends for HIV in Uganda reduced dramatically due to global pressures such as climate change, war, and conflicts. There was an immediate need to rethink our programming and embrace the organization systems strengthening movement. I received insights into this global trend from the various HIV International conferences I was part of in Bangkok, Vienna Austria in 2010, and Melbourne Australia in 2012. At the same time, I acquired new knowledge on public health programming to advance health outcomes while I pursued a Masters in Public Health at the University College Cork, Ireland. Presentations from these conferences and various master classes made it clear to me that soon our historical Kitovu Mobile HIV Home-Based Care Programme might not be sustainable. We had over 10,000 clients on HIV/ART through community outreaches and the question was, if current funding from CAFOD stopped today, what were we going to do with all these programme participants we interfaced with under trees, verandahs, and various community safe spaces?
Interviewer:
What did you do about this crucial question?
Interviewee:
We held various meetings with the programme staff, management, and board of Kitovu Mobile to discuss the need for embracing health systems and strengthening synergizing with both Government and Masaka Diocesan Health Centers at level three (III). For instance, Kitovu Mobile was under the Catholic Church of Masaka Diocese which had a well-established health center at level three (III) providing medical services across the Greater Masaka Region. Through our community mapping exercise, we found out that none of them provided HIV care services. I remember these were tough meetings but finally, we agreed to the paradigm shift. With funding from CAFOD UK, we decided to facilitate the healthcare facilities to offer Integrated Services Delivery by firstly providing staff institutional capacity in HIV care and Management, infrastructure including HIV data development to all health centers (III) under the Masaka Diocese. Between 2013-2014, Kitovu Mobile successfully transferred out and linked 80% of her programme participants to the health centers under the Catholic Church of Masaka Diocese which is now accredited by the Ministry of Health, and 10% were transferred out to Government health facilities. We worked within our networks (community workers, CSOs, expert clients, religious leaders, and local government chairperson) to ensure that all referred programme participants were well received at the various entry points. At the same time, we established a static health facility at Kitovu Mobile and returned program participants in the vicinity which also kept the face of care. Just after one year of transitioning our HIV programme, Kitovu Mobile traditional donors circulated an exit notice that they were no longer able to provide funding for the home-based care programme and requested the organization to collaborate with Government and other private health facilities. Already we had completed our transition. We adjusted but this still remains a great programme success story that cannot leave my mind.
Interviewer:
What message do you have for the global community to enhance efforts to the end the HIV/TB and Malaria by 2030?
Interviewee:
It is important to note that as a country we have made significant progress in the fight against HIV and AIDS. There are noticeable success stories and achievements towards Universal Health Coverage in HIV care, treatment, and support. However, if we are to achieve UNAIDS' global goal of ending HIV, TB, and Malaria by 2030, we don't need to forget the history of the HIV epidemic in Uganda. Even with advances in HIV care, treatment options, and related technologies, I ask myself whether we are still on course of having the epidemic under control. We are continuously losing the community connectivity, linkages, structures, and movement that were built for cohesion among PLHIV and played a big role in reducing HIV stigma in Uganda. We are observing that as we make ARVs more available e.g., PrEP, Test and Treat Strategy that gives allowance for stable people on ART to return for follow-up after 6 months; Government, CSOs, and Health facilities should put in place robust mechanisms to monitor adherence, retention of patients on ART. Otherwise, the country may be on a rough road to risks of HIV multi-drug resistance. For instance, in my recent engagement to support the Ministry of Health and Uganda Virus Institute (UVRI) to track Early Warning indicators for HIV drug resistance, we conducted an assessment in over 34 health facilities in the Greater Masaka Region between January-March 2020 before COVID-19 pandemic, and approximately 10-40% of registered clients who started ART under the Test and Treat programme were lost to follow up. What could be the post covid-19 situation when all community structures and linkages were disrupted? I don’t remember losing even more than 2% of clients during our days of Home-Based Care HIV Programmes that were implemented by Organisations such as Kitovu Mobile and The AIDS Support Organizations (TASO). We had built strong systems and structures including community-referral and linkage mechanisms, and engagement of households to track and follow up programme participants. We are now embracing interventions across the three (3) diseases; synergy with UHC and Pandemic response, recovery, and resilience; Climate-change countermeasures; crises; and unmet needs arising from chronic and non-communicable diseases as people live longer. I can see our country's strategy for information, education, and communication not aligned to developing crises.
Young people no longer have access to targeted information on the prevention of HIV and AIDS, and the post-covid-19 pandemic worsened the situation amidst the changing global and country priorities to infrastructure development, security, and climate change impacts, yet funding from global partnerships such as PEPFAR, Global Fund is also reducing over years. Most young People now don’t even have a picture of the HIV history and there is general normalization of HIV in communities. For instance, this week, I received a call in the morning from one of the community members from Kigalama, and Kassanda districts requesting me if our organization still had any behaviour change programmes for the young people. His concerns were increasing risky behaviour such as “Young people are indolent, busy in sports betting, alcoholism, increasing number of young girls with unplanned for pregnancies coupled with gender-based violence, the gap between parents and children is increasing and there are few role models”. We have lost our robust HIV prevention message campaigns and that is why new HIV infections are on the rise. Many organizations we call Community Based Organisations are not at the grassroots anymore. The Kitovu Mobiles and The TASO of old are slowly disappearing from the HIV struggle. With the changing donor dynamics, many Organisations are failing to embrace the principles of universal health care coverage such as integrated services delivery (ISD), and active involvement of communities of practice (COP) e.g., during a short interview with previous programme participants of historical Kitovu Mobile, many previously established community structures such as the historic community workers and other stakeholders were abandoned and yet this was a strong resource to strengthen community-referral linkage for services. Such resources would even support the implementation and follow-up of Government programmes such as the Parish Development Model (PDM), Operation Wealth Creation (OWC), and health promotion programmes to improve health and well-being for everyone in those vulnerable communities. Priorities for development Partners/Donors such as the rationalization process have also disoriented organisations from the grassroots principle. One can find an organisation located in Kampala being the one implementing in Nebbi and Arua Districts leaving out the indigenous CSOs/CBOs that are close to Programme participants and know better those problems affecting people within their communities. Strategically grassroots and positioned CSOs/CBOs such as the MOD Public Health Foundation still suffer hand-me-down effects whereby collaborating implementing Partners (IPS) only subgrants and use them to deliver results without providing organisation systems strengthening support and after a particular project ends, such an organisation is dropped. Many of these organisations that are dropped off the list continue to suffer with basic or recurrent office management costs such as rent, mobility challenges to communities to meet programme participants, and consequently close when they became overwhelming.
Therefore, for purposes of planning, programming, and organisation policy development, it is important to support the localization agenda that aims to strengthen local CBOs, CSOs, and NGOs to develop resilience and sustainable systems and structures for organizations to align with the international aspirations of good health and wellness for all and all age groups. This is one of the principles of Universal Health Coverage (UHC). That is why in order to enhance CSOs' capacity to embrace principles of One health, preventing diseases, prolonging life, and promoting health including eco-conservation, we came up with the Public Health Steering Team-Uganda (PHSTU) whose Fiscal Agency is the MOD Public Health Foundation-Uganda/Public Health Consultants-Uganda to advance an agenda of interventions mainstreaming the broader Public Health contexts that impact general wellbeing, TB, Malaria and HIV prevention, care, and treatment.
We are aware that peripheral-based organisations may be overwhelmed, for instance, by the changing landscape of TB, HIV, and Malaria Prevention and it translates into neglect which increases the disease burdens and unmet healthcare needs. Therefore, there is a need for well-wishers to support our work that continues to enable people to engage in health-seeking practices, demand and advance TB, Malaria, and HIV prevention, treatment, and eradication through ensuring availability, acceptability and access to medicines, laboratory services, psycho-social support, information, and care.
We call upon the different African governments, line ministries, and development partners e.g., PEPFAR and the Global Fund, CSOs, NGOs, FBOs, and CBOs to strategically position themselves to create the critical mass of services contributing to the end of TB, HIV, and Malaria. This will contribute to the saturation of services fostering optimization and maximization of health-promoting services with a range of resources from family planning; countering malnutrition; ensuring housing stability; food security; sexual reproductive health; mental health; TB, Malaria, and HIV Prevention; Persons With Disabilities (PWD), Persons With Chronic Infections/Diseases, Mother, Child, Adolescent, Youth, Adult and Seniors' health; Climate-smart action; Livelihood projects; and considering future pandemics.
Interviewer:
Samuel, this is a noble interview, are there people you would like to acknowledge for contributing to your passion, professionalism, and productivity growth?
Interviewee:
There are very many, but for purposes of this interview/story, I would like to acknowledge the following people for their sacrifice that alleviated pain and suffering in Among PLHIV and those with Cancer in the Greater Masaka Region during the early years of the HIV Epidemic in Uganda:
a) The Medical Missionaries of Mary (MMM) particularly: Dr. Brigid Corrigan, Dr. Carla Simmons, Sis Ursula Sharpe (Founder of Kitovu Mobile) Dr. Moura Lynch (RIP), Dr. Anne Merriman (Hospice Africa, Uganda), Hon. Robina Ssentongo (RIP) and Mrs. Rose Nabatanzi (RIP). Thank you for humbling and emptying yourselves to serve and Save lives.
b) Professional Mentors: Prof. Ivan Perry (University College Cork, UCC Ireland), Dr. Francis Ssaali (Uganda Cares), Dr. Patrick Banura (UNICEF), Dr. Christine Watera (Uganda Virus Research Institute), Dr. Kibengo Musoke (Medical Research Council), Dr. Norah Namuwange (Ministry of Health, Uganda) and Dr. Musisi Stuart (World Health Organisation). Thank you for enabling me to contribute to improving the health outcomes and well-being of Ugandans through Preventing diseases, Prolonging life, and promoting health using adaptative public health approaches.
c) The Home-Based Care Staff of Kitovu Mobile AIDS Organisation (2007-2016)-You were such a great team, and you will be remembered for your professionalism and heart to service.
d) My Family: Honest Bukirwa Waliggo (Wife and Founder of Grace And Love Organisation-GALO), Mrs. Jacque Forde (Missionary, Guardian, and Director Windows of Children Ministry), Mr. Wesley Forde (RIP), Mrs. Nalubowa Margret (Mum) and Mr. Patrick Mwindike, Ronald W, Parks and Cynthia Garvin. Thank you for teaching me to be a servant leader.
e) Irish Embassy in Uganda for Full Sponsorship of My Master's Degree in Public Health (MPH) at the University College Cork, UCC Ireland.
f) Lastly, the noble team of MOD Public Health Foundation (MODPHF), MOD Public Health Consultants (MODPHC), and Public Health Steering Team Uganda (PHSTU). These written narratives shall be manuscripts for generations as a reminder of our history, culture, and Values.
[1] Kalibala, S., L. Vu, S. Waliggo, “Retrospective review of task-shifting community-based programs supporting ARV treatment and retention in Uganda,” HIV Core Final Report. Washington, DC: USAID | Project Search: HIV Core.
Picture was taken in 1987 of Sister Ursula Sharpe (Medical Missionaries of Mary-MMM, Ireland), the Founder of Kitovu Mobile AIDS Organisation to provide psychosocial support to patients confirmed with HIV at Kasensero, Rakai District.
“Sis Ursula Sharpe's Motto: If Kitovu Mobile Needed Any Form of Support including Funding for our Work, Always Tell the Patients to Pray”
Matthew 25:35-46 "For I was hungry and you gave Me food, I was thirsty and you gave Me something to drink, I was a stranger and you brought Me together with yourselves and welcomed and entertained and lodged Me, I was naked and you clothed Me, I was sick and you visited Me with help and ministering care, I was in prison and you came to see Me"
Pictures taken in 2006: Samuel Waliggo Participating in Advocacy Campaigns to Make HIV Medicine (ARVS) Accessible to Poor Communities.
Pictures Taken between 2007-2019: Caring for those Left Behind with HIV/TB/Malaria through Household Care and Management model in the Greater Masaka Region.
Working with Dr. Corrigan Brigid (MMM), and Dr. Carla Simmons (MMM) was a true story of love in caring for People Living with HIV (PLHIV) in the Greater Masaka Region.
A typical Home Visit to track PLHIV failing to come for drug pick up at the outreaches.
Collaborating With MOH/UVRI to track early warning indicators on HIV Drug Resistance in health facilities
Contact:
Samuel Waliggo, MPH
Executive Director
MOD Public Health Foundation, Uganda
P.O BOX 211, Plot 79, Bukoba Road,
Near Gaz, Masaka City,
Mobile: +256 772675563, +256 706472457
Office: +256 485660637
E-mail: samuel.waliggo@mod.or.ug
samuel.waliggo@gmail.com
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