TASO: A pioneer in ending the AIDS epidemic through 30 years of quality service delivery in Uganda.

Mr. Christopher Kaleeba and his wife Noerine

November 11, 2017 marked 30 years since the founders of TASO formed the first support group for people living with HIV and AIDS in Uganda at the Mulago Major Referral Hospital, Kampala. In 1986/7, while Uganda was recovering from a war with a new Government in place, a group of people, some of whom were infected while others had lost friends and family to AIDS, came together to form a support group which was then registered in 1991 as The AIDS Support Organisation (TASO). The first clients were patients who had been abandoned by the relatives either on a hospital bed or laying on the grass in the hospital compound where not even health workers were willing to help them. While these patients had different faces, family history and cultural background, they had one thing in common, they had a disease which nobody could identify. 

The Ministry of Health HIV Testing Policy (November 1990), reported that all districts in Uganda had reported cases of AIDS by the end of 1989. In only 7 years (from 1982) the disease had spread from the first cases identified at Kasensero Landing site to the rest of the country. These statistics were collected from only women at the Antenatal clinics. The number of men infected could only be estimated. Cases of AIDS related death were reported in the communities either as death due to "witchcraft" or due to an unknown disease. It is upon this background that TASO founders decided not only to care for those infected, but also their family members who were affected by HIV and AIDS and facing very high stigma and discrimination.

Vision, Mission and Philosophy

Jason Bazzebulala (RIP) and David Lule (RIP) with Noerine Kaleeba

TASO was built on the philosophy of living positively with HIV and AIDS. This means that all people should have a collective and positive attitude towards HIV and AIDS and understand that; it affects everyone, regardless of age, race, religion or sex. TASO has a vision to see a world without HIV or AIDS and is on a mission to contribute to a process of preventing HIV, restoring hope and improving the quality of life of people, families and communities infected and affected by HIV infection and disease.

 

 

Then and now…. strides in the fight to end the AIDS epidemic by 2030

1980s This was a time of great fear, denial, mistrust and stigma in Uganda. It was very fertile ground for a group of friends to start a support group for people living with AIDS after one of them lost her husband on 23^rd January 1987, on what is now commemorated as Kaleeba day in TASO. On this day, TASO holds a memorial for all those who have lost the battle to AIDS and takes stock of strides made in the fight towards zero AIDS related deaths. 

Of the 16 people, some had met at the first AIDS Clinic in Uganda (started by Professor Elly Katabira one of the founders of TASO) where they were being treated for opportunistic infections. The other members of the group were; Christopher Kaleeba (RIP), Noerine Kaleeba, Mary Kakeeto Lukubo, Peter Ssebbanja,  Dr. Jane Mulemwa, Lydia Tamale, Colin Williams, Chanda Williams, Jason Bazzebulala (RIP), Rose Ojamuge (RIP), David Lule (RIP), Daniel Etole (RIP), Nestor Banyenzaki (RIP), Charles Sentamu (RIP), Nampologoma (RIP).

During this time, TASO extended its services to other districts in the country namely; Masaka, Tororo, Mbarara, Mbale, Jinja and Entebbe. These outreach units were set up within the hospital premises. This meant that not only was TASO collaborating with the Government hospitals to improve service delivery, but it was also reducing on the client load of these government hospitals. These units were specialized to cater for AIDS patients, without duplicating the services offered by the hospital itself. Today this collaboration still exists with TASO building the capacity of Public health facilities to offer TASO like services to their communities; thanks to funding from PEPFAR through CDC and USAID.

TASO began holding training workshops for AIDS counselors today referred to as HIV counselors. Counseling was not a recognised service in Uganda until people noticed the positive outcomes due to the HIV Counseling given to TASO clients. Currently, the TASO Training Center is expanding into a College of Health Sciences in Kanyanya along Gayaza road. 

Organisations such as ActionAid International offered financial support to TASO volunteers to attend training in AIDS Counseling and international conferences on HIV and AIDS. This enabled them to integrate professional counseling into their services, share accurate information during the sensitization workshops they conducted and also build the capacity of other smaller communities which took the initiative to care for their people.

1990s After the transition from an informal group into an organisation, the organisation was formerly registered in 1991. And as membership organisation, it held its first Annual General Meeting in 1992.

TASO recognized that people living with HIV and AIDS, were the strongest advocates they had. Since 7 of the founders were themselves living with AIDS and living positively with AIDS, TASO decided to employ them to offer services within their field of expertise such as finance and administration. After the visit of the late Philly BongoleyLutaaya (a famous Ugandan musician that openly declared that was HIV positive) to TASO, clients with skills in music, dance and drama formed drama groups. Today this is what is referred to as greater or meaningful involvement of People Living with HIV or active engagement of clients. It is for this reason that they are not referred to as patients but rather as clients seeking a service. 

TASO expert clients have travelled across the globe to speak to high level decision making bodies and give a face to HIV and AIDS. Notable among these were Olivia Nantongo (RIP) who addressed the US Congress, Mohammed Kalyesubula and Agnes Nyamayarwo who addressed Senators in the White House. Many have made presentations during the various International AIDS Society (IAS) Conferences and International Conference on HIV/AIDS in Southern Africa (ICASA). 

As the world works towards achieving 90% of those living with HIV attaining viral suppression, this would be a major breakthrough for all TASO clients. Once it is recognized that HIV does not define who a person is, it becomes easier to understand that someone living with HIV has a life beyond the virus and has a right to the basic rights of life including the Right to health. 

TASO encouraged the setup of peer to peer support groups known as AIDS Challenge Youth Clubs (ACYC) in which members were equipped with skills on basic counseling, knowledge about how to prevent HIV transmission as well as skills in reproductive health.  This was a brainchild of adolescents who had witnessed the effects of HIV related death and were therefore willing to support each other. These were greatly supported by the PIASCY programme rolled out to encourage HIV prevention amongst primary and Secondary school children. Such interventions target girls and young women, whom today we see as the most vulnerable group in the HIV response. 

2000s The earlier years of this period saw the onset of antiretroviral therapy into Uganda. This is the time when more and more people with typically non-medical training began serving more in the medical field. For example, TASO trained family members as medicine companions, it recruited and trained social workers to deliver ARVs to bedridden patients and to conduct HIV testing and counseling together with clinicians. 

For a number of years, TASO partnered with World Food Programme and ACDI/VOCA to provide food supplements to its clients. Having realized that this was not a sustainable intervention, TASO developed an exit strategy and introduced the sustainable livelihood programme. Under this programme, clients were equipped with different income generating and entrepreneurial skills because they were not going to survive on food supplements forever. 

Today, the funding environment has changed to favor projects and TASO is part of several projects and consortiums including; Soroti Region (CDC), Masaka Region (CDC), SOCY/DREAMS Project (USAID/Catholic Relief Services, HIV/Health Initiatives in Workplace Activity (USAID/World Vision),RHITES EC (USAID/University Research co.LLC), SUSTAIN (USAID/University Research co.LLC), RHITES - E (USAID/IntraHealth),RHITES-SW (USAID/EGPAF), Grants Management Unit (Global Fund), PACK-Karamoja (Irish Aid), TEAM Project (IDI/UAII), USAID Defeat TB Project, Support to OVC - TASO Tororo (Friends of TASO US), SPART Project (Friends of TASO Germany), Mugongo Music Project (The Uganda-Baltimore Alliance (TUBA) and TASO College of Health Sciences. 

Looking at the history of TASO and comparing it to the service delivery models and principles in the national and global response to HIV, TASO has curved a niche for itself in the HIV response. But the war is not yet won. There are still battles to fight, hurdles to jump and interventions to implement. It has been 30 years now, and TASO continue to ask what we all could do differently to ensure that by 2030, HIV and AIDS are no more? As TASO we are still strong and are working towards ensuring that our job is done and done right as we embrace the UNAIDS fast track initiative which Uganda became a signatory to. We also support the Presidential fast track initiative on ending HIV and AIDS in Uganda. 

Hope at the end of the tunnel

The good news is that the national HIV prevalence has dropped from 7.3 (Uganda AIDS Indicator Survey 2011) to 6% in 2016 (Uganda Population based HIV Impact Assessment 2016). According to the Uganda AIDS Commission, after the rigorous implementation of the HIV combination prevention approach, the number of new infections dropped from 99,000 (2010) to 52,000 (2016). But before we celebrate, we need the prevalence at 0% by 2030.

Appreciation

TASO would like to express its sincere and heartfelt appreciation to all its donors past, present and future who have enabled it to keep the candle of hope burning. Appreciation goes to the members from all walks of life who through their regular membership subscription contribute to the wellbeing of TASO clients. No contribution is too small. Appreciation also goes to all the founders and governance structures (past and present) for the invaluable advice, support and insights into how a dynamic organisation can continue to position itself to win one of the toughest wars known to mankind. Appreciation goes to all the staff (past and present) who made this happen. And finally, appreciation also goes to the clients who have shown resilience, strength and a need for a better life. Three decades is a long time for a battle and yet it is such a short time for the results yielded so far. . Happy 30th Anniversary.

Compiled by: Matovu Sylvia

Input from: Dr. Kenneth Mugisha, Mr. Livingstone Ssali, Mr. Dick Muhwezi, Ms. Elizabeth Najjemba.