Implications of Funding Trends on Community Based Programmes

The current HIV prevalence in Uganda is estimated at 6.4% among adults and 0.7% among children. HIV prevalence rate declined from 25 per cent in the early 1990s to five per cent in 2000 but has crept higher to between six and seven per cent. The number of new HIV infections is 100,000 a year and worrying. HIV prevalence is higher in urban areas (10% prevalence) than rural areas (6%). Women are disproportionately affected, accounting for 57% of all adults living with HIV.

The National Strategic Plan 2006/7-2010/11 outlines goals to provide universal prevention, treatment and support services for all Ugandans by its completion. Prevention continues to the thrust of Uganda’s HIV/AIDS campaign. Targets have been set of 240,000 people on treatment by 2012, and 342,200 by 2020. When setting treatment targets Uganda must think about sustainability, as 95% of the ARV programme is currently donor funded, mainly by PEPFAR. This support is under threat; PEPFAR funding has flattened, and the US government plans to cap funds to Uganda until at least 2011. However, announcements made by Dr. Zainabu Akol, the head of HIV programming in the Ministry of Health, in February 2010 forecast substantial government funding towards the supply of ARVs.

In 2006, the Civil Society Fund was established under the Uganda AIDS Commission (UAC) to support the objectives of the National Strategic Plan for HIV/AIDS and the government of Uganda National Action Plans for HIV/AIDS and OVC services. The goal of the Fund is to streamline and harmonize civil society participation in the national response to HIV, tuberculosis, and malaria and support for orphans and vulnerable children, with a focus on underserved areas.

Implications for NGOs

With the establishing of the Civil Society Fund, however, access to finances has become more competitive, with big and well established organisations having advantages over small ones. Community based organisations find it difficult to write “professional” and fundable proposals with the necessary management and monitoring systems, and many of their proposals have been rejected. Most programs who get financial support from the Civil Society Fund are national programs.

Many community based program can’t sustain their activities due to lack of funds. They had to scale down their programs and even close their doors. Some of them were downsizing the number of volunteers, as there was no more money to pay for their training, for a bicycle to reach the village or for providing lunch. The cost burden is transferred to people living with HIV and AIDS (PLWHA). The existing inequity in access to health care in general is widened.

Many of the benefits of community based AIDS response can no longer be sustained. A community based AIDS response reaches the neediest people at grass roots, and by their voluntary support, they reduce the cost for PLWHAs. At the same time, community ownership is promoted and people are empowered. For community resource persons, it is easier to facilitate the communities as they understand the community dynamics in the AIDS response.

With the waning of funds for grass root organisations and other NGOs, such successes are undermined. The present and continuing rise in new infections may be the result of it. The success in the AIDS response registered so far will be watered down. The rise in incidence 100,000 new infections annually may be an indicator.

Best practices, the case of TASO

TASO, The AIDS Support Organization, is an indigenous HIV and AIDS service organisation in Uganda founded 23 years ago (1987) by a group of 16 volunteers who were either infected or affected by HIV/AIDS (www.tasouganda.org). TASO is a national NGO and a community based organization with the vision to see “A world without AIDS”.

TASO’s mission is to contribute to a process of preventing HIV infection, restoring hope and improving the quality of life of persons, families and communities affected by HIV infection and disease. The primary goal of TASO is to empower people to live positively with AIDS. Their programmes include AIDS education and prevention to help those not infected to protect themselves from exposure to the virus, as well as care components for those already infected. Community involvement has been a key strategy in TASO's success. In times of shortage of funds, the involvement of the community and the family becomes even more pertinent.

The family centered approach in supporting persons living with AIDS provides several benefits. It reduces the costs for transportation on the side of the patient (client and care giver) who would have to travel to the health units. In Uganda in particular and in Africa in general, where the income of a poor family is meant for subsistence (food), people seek alternatives to health care which are affordable.

Family centered support enhances disclosure of status of the person living with HIV to the family. Sometimes there is what we call “supportive disclosure counseling“ which is provided to the PLWHA who finds it difficult to disclose to family members. After counseling, the family members are encouraged to support the PLWHA in the family. In addition, the family members and especially the care givers are trained in how to protect themselves from contacting HIV from the PLWHA and also how to support the patient better.

Because of shortage of drugs, there is a danger that poor families share the drugs among themselves. Family centered support helps to minimize the risk of drugs sharing through home based HIV counseling and testing of the family members. Those found to be having HIV are refereed for comprehensive care and can receive their comprehensive package as “index PLWHA”.

Innovative and cost effective models

The creation and implementation of community drugs distribution points is a new service delivery model that TASO designed as an alternative to supplying drugs at a central health clinic. This is a very cost effective strategy as costs for transportation can be reduced and shared. In addition, this strategy enhances community disclosure and builds up a strong peer support system for PLWHA in the community. TASO trains some of the beneficiaries (PLWHA) to become “expert clients“ and involves them in the handling and provision of care. These expert clients are given basic training so that they can monitor their fellow PLWHAs in their area. They report to the service provider (say TASO) any need for serious handling in terms of medical need such as drugs interactions and side effects. They also get support from TASO when there are people with serious drugs adherence problems and other counseling issues that the PLWHA needs. (Picture)

TASO has also formed a drama group to sensitize and mobilize the communities through music, dance, and drama. The drama group comprises of PLWHA and it is a powerful strategy to fight and reduce stigma. The members give personal testimonies and share their life experience living with the virus and how they have coped with it. The drama group mobilizes communities for HIV counseling and testing (VCT) hence scaling up demand for VCT among the masses. Normally the drama group targets the hard to reach population or most at risk population such as the fishing community. Due to the nature of their work, the fishing community is considered as a population which is most at risk and therefore HIV and AIDS information is very vital for them in order to access care and service when ever the need arises.

Social interventions to reach the community

Community based interventions reflect the experience and conviction that if the community is targeted and empowered, they can survive. These sayings are true: “Safe the parents and you will have saved 5 children from becoming orphans” and “empower the mother; you will have educated the children.”

Food shortage is a major problem in many rural communities, which consequently makes ARV treatment ineffective. The Social Support and Sustainable Livelihood and Agriculture Project aims to help clients support themselves through sustainable livelihood activities through outreach awareness and sensitization as well as educational workshops and seminars. Community outreach and trainings are held on topics such as farming, agriculture, crop rotation, livestock rearing, and other vocational skills. TASO hopes to lessen the dependency syndrome among clients by promoting knowledge and tools that they can use to sustain themselves independently with healthy food production. TASO also provides seed grants to community volunteers to improve their welfare as a measure of sustainability. Supplementing family income and nutrition may also serve as an exit empowerment strategy when funds dry up.

Recommendations

Based on theses experiences, I would like to conclude with the following recommendations in order to sustain and improve the AIDS response:

• Community based programs need to be strengthened and scaled up to reach the target beneficiaries
• Advocate for, and mobilize additional resources both from health initiatives and government
• Deal with poverty among PLWHAs, e.g. with sustainable livelihood programs
• Innovate new interventions and service delivery models
• Strengthen and increase social support services
• Integrate AIDS work into other health care programs
• leverage resources and improve on efficiency

AIDS work now needs more resources than ever before. The disease is matured and more accommodative; complacency is setting but remember! “AIDS is still deadly”. Communities have got to be awakened and strengthened to respond to AIDS, we need concerted efforts to win the battle and realize a world without AIDS.

*Florence Ajok Odoch Florence joined TASO nine years ago and presently is the the Centre Manager Mulago. Contact: ajokflora@yahoo.com http://www.tasouganda.org/