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close this bookNutrition and HIV/AIDS United Nations Administrative Committee on Coordination, Sub-Committee on Nutrition. Nutrition Policy Paper #20. Report of the 28th Session Symposium Held 3-4 April 2001, Nairobi, Kenya (UNAIDS - UNSSCN, 2001, 85 p.)
View the document(introduction...)
View the documentForeword and Acknowledgements
View the documentNutrition and HIV/AIDS
View the documentOverview of the 29th Session Symposium - Nutrition and HIV/AIDS
View the documentKeynote Address
View the documentAchievements of the AIDS Support Organization (TASO) in Uganda
View the documentHIV/AIDS and Development: Unsolved Challenges for Africa
View the documentHIV/AIDS, Food and Nutrition Security: Impacts and Actions*
View the documentNutrition and the Care Package
View the documentPanel Discussion on the Implications of HIV/AIDS for Nutrition Programmes
View the documentDr. Abraham Horwitz Memorial Lecture - Infant Feeding Options for Mothers with HIV: Using women’s Insights to Guide Polices
View the documentAnnex 1 - The facts about nutrition and HIV/AIDS
View the documentAnnex 2 - Effect of breastfeeding on mortality among HIV-infected women
View the documentList of abbreviations
View the documentNutrition Policy Papers Series

Achievements of the AIDS Support Organization (TASO) in Uganda

Sophia Mukasa Monico Director, TASO

AIDS or slim disease was first recognized as a possible new disease in Rakai district in Uganda in 1982. In 1986 a national AIDS control programme was established and the government called for collective action against the epidemic. By 1990, an estimated 1.5 million adults and children were infected with HIV; 16% of military recruits were sero-positive by 1992. However, by June 1995, the incidence of HIV in Uganda was already falling, and the prevalence started to fall by 1997. By July 2000, out of a total population of about 23 million, an estimated 820,000 people were living with HIV/AIDS. Half a million people have died from AIDS related illnesses. About 1.7 million children under the age of 14 have lost their mother or both parents to HIV/AIDS.

The good news is that HIV/AIDS infection rates are declining in antenatal clinics in Uganda. In 1992 the infection rate was around 30% in Nsambya, Rubaga and Mbarara (see Table 1), which are the major hospitals in Uganda. By 1998 the rates for antenatal attendees had dropped by one half. The median for women attending antenatal care clinics in major urban areas was 13.8%, while it was 7.7% outside the major urban areas. For the country as a whole, the infection rate has declined from an estimated 24% in 1992 to 8.3% by the end of 2000. The decrease was particularly evident in youth between the ages of 15 and 25 years. The decline in infection rates in this age group is due mainly to abstinence and staying with one partner, although condom use also played a part.

Table 1 - HIV infection rates (%) in selected antenatal clinics in Uganda

Site

1992

1993

1994

1995

1996

1997

1998

Nsambya

29.5

26.6

21.8

16.8

15.4

14.6

13.4

Rubaga

29.4

24.4

16.5

20.2

15.1

14.8

14.2

Mbarara

30.2

18.1

17.3

16.6

15.0

15.0

10.9

Jinja

19.8

16.7

16.3

13.2

14.8

11.0

10.5

Tororo

13.2

11.3

10.2

12.5

8.2

9.5

10.5

Mbale

14.8

8.7

0.2

7.8

8.4

6.9

6.3

Kilembe

-

7.0

6.7

11.1

10.4

8.5

-

Pallisa

7.6

5.0

1.2

-

-

3.2

2.6

Soroti

-

9.1

-

8.7

7.7

5.3

7.7

Matany

-

2.8

7.6

-

2.0

1.6

1.3

Hoima

-

-

-

-

12.7

9.0

5.4

Kagadi

-

-

-

-

-

10.3

11.5

Mutolere

-

4.2

-

3.6

2.6

-

2.5

Moyo

-

-

-

-

-

-

3.2

Despite the successes, the number of new infections is still high and those living with AIDS is still increasing. The demand on health care services remains very high. Caring for people who are infected and affected by HIV is an indispensable part of the response to the HIV/AIDS epidemic and that is where our organization, The AIDS Support Organization (TASO), plays a role.

The history of TASO

In 1986, a group of 16 individuals and family members affected by HIV/AIDS began meeting together in each other's homes to offer mutual support and fellowship. In the same year, this group, made up mainly of medical personnel, began sensitizing hospital staff about the needs of persons with HIV/AIDS. This was at the height of ignorance about HIV infection and hospitals were not very receptive to HIV/AIDS patients.

In early 1987, the group formed the organization TASO, and ActionAid, a nongovernmental organization doing development work, provided initial funding and on-going support to this new organization. In November 1987, TASO was legally incorporated as an NGO to provide care and support for persons with HIV/AIDS and their families at Mulago Hospital, the biggest referral hospital in the capital city of Kampala. TASO was therefore founded to contribute to the process of restoring hope and improving the quality of life of persons and communities infected and affected by HIV/AIDS.

Assistance offered

TASO offers support at the personal, family, community, national and international levels, as follows:

At the personal level

· One-to-one counselling which empowers people living with HIV and AIDS to make informed decisions that improve the quality of life and facilitate the balance between rights and responsibilities;

· Sensitive and compassionate care which provides early diagnosis and treatment of opportunistic infections and enhances living positively and dying with dignity.

At the family level

· Counselling for family members which dispels their fears of contracting HIV through casual contact;

· Facilitating care of the infected and affected persons, preparing the family for and supporting them during bereavement and afterwards;

· Facilitating provision of home nursing care and nutritional materials and education.

At the community level

· Community counselling to empower the community to organize an appropriate response to the problems generated by the HIV/AIDS epidemic;

· Facilitating community-planned responses, community evaluation of the responses and mobilization of community resources.

At national and international levels

· Advocacy for better access to treatments and vaccine development;
· Training appropriate personnel for service delivery;
· Mobilizing resources to achieve the set organizational and national goals;
· Joining of international efforts for the total defeat of HIV infection and disease.

Those who come to TASO are encouraged to live positively with HIV/AIDS. In practical terms, clients are encouraged to:

· Accept their diagnosis
· Promptly seek medical care
· Practice safer sex
· Continue to earn an income
· Plan for their families and dependants
· Seek counselling
· Maintain a balanced diet
· Have adequate sleep and exercise
· Continue with normal social activities
· Avoid harmful habits such as drinking alcohol and smoking

Since 1987, TASO has provided counselling, medical care and social support services to over 63,000 HIV-infected people in Uganda. Today TASO operates seven counselling centers along the East African highway, the first area that was badly hit by HIV/AIDS and one that still has the highest infection rates. The services are also available in a hospital-based AIDS project in Arua.

The majority (68%) of TASO clients are women. In 1997, there was a decline in the registration, however, in 1998 and 1999 there was a slight increase compared to previous years. In 2000, again there was a drop in client registration which could be attributed to other organizations coming in to share the responsibility, more provision of services by government hospitals and, we hope, a decline in HIV transmission rates in Uganda.

Community involvement

By 1990, TASO realized that clinic-based services were inadequate to meet clients’ needs for care and communities’ needs for education on prevention and stigma reduction. Previously, TASO had delivered all of the services at the clinics, but this was becoming impossible because of the ever growing number of clients coming for services, especially medical care and food assistance. In 1991, TASO Community Initiatives began which involved working with selected sites within 35 km of the TASO centers. The TASO client became the entry point to the community.

In order to get communities involved, TASO had to find innovative methods to stimulate and captivate the communities' interest. It is not an easy task to stimulate interest in the care and support of people infected and affected by HIV, and in the prevention of further spread of HIV in the community. These methods have included equipping community volunteers with basic counselling and nursing skills, AIDS education, and using food to give a tangible value to the services that are offered. In 1991 TASO received an award from NORAD through their award programme “It Works”.

In 1996, TASO started building the capacity of districts where AIDS services were either limited or non existent. By the end of 2000, there were 22 districts which did not have TASO centers but could still deliver TASO-like services satisfactorily. TASO has trained over 120 counsellors for countries in Sub-Saharan Africa, 450 counsellors in Uganda and 150 for its own programme. By the end of 2000, TASO had worked in 94 communities and trained over 3800 community volunteers.

The volunteer counsellors are community-based people who might not have even high school education but who are committed people. They raise awareness in their communities of HIV/AIDS, sexually transmitted diseases (STDs) and family planning. They managed to reach 86,150 people in 1999 and nearly 140,350 people in 2000. These are large numbers of clients for volunteers who are not receiving a salary but who are doing a job in their communities affected by HIV/AIDS.

Social supports and concerns

Stigma

Where stigma levels are low or non-existent the TASO centers have shown that “it works”. Communities can really do a good job and clients can get services from their communities. Where stigma levels are higher and there is no well-established support, denial levels are a problem. New clients are not willing to share their positive sero-status with the community. Because some clients desperately need food, they often trade places and receive food assistance from communities other than their own. Stigma can easily lead to discrimination and might lead to violence. There was a case in South Africa where a South African woman started talking about her positive sero-status in her community and, as a result, she was beaten to death.

Food

Food assistance has attracted people living with HIV/AIDS to access services. TASO has found that in areas where food is distributed, numbers of clients will increase significantly, and management and distribution of food assistance becomes a problem. Food is a great incentive when providing care services. In Uganda, when you visit a sick person you do not visit empty-handed. If you take something you are adding value to what you are doing, especially when you are offering counselling.

TASO has relied on food donations from well-wishers. Most of our traditional donors, as well as TASO itself, feared the magnitude and implications of tackling the social needs of people living with HIV/AIDS. Food was provided sporadically by International Care and Relief and InterAid. This was at most twice a year and rations were provided only for clients. As a result of TASO’s lobbying, USAID have agreed, starting later this year, to provide substantial food supplements of corn soy blend and cooking oil for five years for clients and their families.

However, in dealing with HIV/AIDS, a lot more is needed than just mere provision of food. As TASO has observed right from the beginning, most clients present with severe problems of malnutrition on their first visits. Even in the absence of opportunistic infections, HIV/AIDS is very much a disease of the gut. Malabsorption is one of the frequent earliest clinical signs. This may worsen during the course of the disease aggravating complications caused by inadequate intake of nutrients as a result of anorexia, nausea, vomiting and fever. The high metabolic rate during fever contributes to the malnutrition and increases the need for energy and protein.

Therefore, for TASO clients, nutrition becomes an issue of cardinal importance in achieving the core objective of living positively and improving quality of life. Food and feeding take on new connotations. One no longer eats for the sake of reducing hunger; one eats to fight the disease and to marshal energy to maximize the effects of medication. Hence nutrition counselling and education are very important components in the TASO package of care services.

Education

TASO offers education to the care providers (mostly women) and the clients themselves. They include the mothers, sisters, daughters and spouses. In most cases, spouses are also mothers or grandmothers or aunts. Thus, our biggest target group for education is the women, even though most of these women do not earn a living and they have a very low education level.

Education entails changing adults' paradigms in the way they eat, which is not an easy thing to do. This entails teaching clients to use the foods that are available locally, and to use them in a balanced way. TASO also encourages clients to eat new foods or even foods they have never heard of. So TASO tries various ways to help clients increase their food intake so that they meet their protein and energy needs.

Approximately 75% of TASO clients have primary education or less. For them, getting a job, especially a well-paid job, is very rare. About 85% of clients who are employed earn less than US$ 50 per month and 60% of these earnings are spent on caring for people living with HIV/AIDS in the home.

Most male clients (65%) are in a marital union compared to only 34% of the women. Most clients do not bring their partners for TASO services. The high proportion of female clients not in a marital union suggests that these clients have greater needs for social support. They do not have jobs and they are the care providers in their families. They also have their own small children to take care of. Almost all of them have children below 15 years of age.

When we talk about poverty, when we talk about all the social issues, we begin to discuss issues that are bigger than TASO's mandate and pocket. TASO’s ability to manage this social component, which includes school education support and food distribution, depends on luck because TASO has never actively looked for funds to finance it. Since 1991, education support was funded by individuals, e.g. a former British High Commissioner's wife and her friend, Lady Sally March. They still fund secondary school education for 15 children at any one time. The Catholic Association for Overseas Development (CAFOD) also provided funding for primary schooling for 369 children.

In 1999, members of the US Congress contributed one million dollars to TASO for the child support initiative. The money is used on top of educational assistance to support children from the time they learn that their parents are sero-positive, through child counselling and assisting parents to record their family histories and wishes for their children. This is done by writing a “memory book” for the children. Starting this year USAID is giving TASO more funds to scale up this activity. So far, only the US government has funded this activity, as a government.

Until 1999, TASO had not planned comprehensively and proactively to address issues like poverty, food security, the looming tragedy of destitute children affected by HIV/AIDS, and the provision of drugs for clients, especially expensive drugs for treatment of complicated opportunistic infections or anti-retrovirals. However, TASO “builds the ship while sailing”. We are now involved on a small scale in the social concerns of people living with HIV/AIDS at the local, national and international levels.

TASO shares the national outlook of the “good enough care” strategy for people living with HIV/AIDS that Uganda has adopted. This strategy includes management of opportunistic infections using readily available and affordable diagnostic and treatment strategies. The care guidelines set out in Uganda’s strategy are based on the premise that “good enough care” can be achieved with

· minimal diagnostic tests
· limited therapeutic modalities, and
· promotion and practice of positive living including good nutritional habits.

TASO’s view is that people have more control over their diets than nearly any other factor affecting their health. However the reality in Uganda, especially among the majority of people living with HIV/AIDS, is that this control is ruled by cash at hand. Consequently most clients have little choice over what they eat.

Challenges of TASO

One of the biggest challenges for TASO is maintaining community commitment and momentum for local response. The large number of AIDS volunteers we have trained work because of their personal commitment and receive no remuneration. It is a very big challenge to keep these volunteers interested and motivated. Many of them are sero-positive themselves. Another challenge is the upward trend in the percentage of TASO clients who are female. This impacts on types of services offered by TASO. Concerning the locus of TASO’s work, most TASO centers are in the urban areas, where the problem has been greatest. TASO will need to expand into the rural areas in future. Clients are concerned about breastfeeding and mother-to-child transmission, also about access to anti-retroviral drugs. It is a challenge for TASO to keep abreast of policy developments in these areas and to continue to enhance and maintain quality counselling services. Finally, sustainability is a challenge. Right now TASO is funded by the government of Uganda, USAID, DANIDA, Sida and the European Union.

Lessons learned

· Caring for people living with AIDS helps to prevent the transmission of HIV. The two go hand in hand.

· A comprehensive program including counselling, medical care and social assistance is needed.

· Integrated services for AIDS care, family planning and sexually transmitted diseases are feasible, beneficial and necessary.

· Data-based decision making is the most effective way to make decisions.

· Communities can be mobilized to share the responsibility for AIDS care and HIV prevention at the local level. In TASO, people living with HIV/AIDS are not just service recipients. They are also partners in community work. They use their skills through music, dance and drama. They go into communities to raise awareness about HIV and prevention and care for people living with HIV/AIDS.

· Collaboration is critical among all stake-holders.

· Personal commitment to a positive response to the epidemic is essential among TASO staff, clients, volunteers, donors and governments.

· Sustainability of services or interventions is higher in communities where it is deeply integrated into the existing community infrastructure.

· By taking services to the community, we have managed to demystify HIV and AIDS. This helps to reduce stigma in the community and facilitate access to services.

· Community care and home based care reduce costs like food, transport and bedding.

· The dignity of people living with HIV/AIDS is preserved, upheld and promoted in the communities where TASO services exist.

Discussion

Chair What TASO has done illustrates grassroots reality. TASO brings hope and gives people confidence to come forward and get counselling even if there are no physical assets for them in care packages. TASO also helps to educate and mobilize communities. TASO encourages testing and sharing experiences in communities. Finally, TASO disseminates knowledge so that people can do better with the resources they have.

Question from the audience We have a lot to learn from TASO. You talked about nutrition counselling and challenges for the future, one of which is clients’ concerns about breastfeeding. What is TASO doing now as far as counselling on breastfeeding and infant feeding is concerned?

Question from the audience One major challenge in this region is maintaining momentum in a mobilized community when community health workers are working for free, without any token of appreciation. What is TASO doing to maintain momentum?

Question from the audience Please comment on the disparity between the percentage of men and women who avail themselves of TASO services. Sixty-eight percent of TASO clients are women. This is a large proportion. And why do men not bring their partners?

Sophia Monico TASO is not involved with counselling on breastfeeding apart from giving information to clients. We refer most of our clients to antenatal clinics, which are doing a good deal as far as infant feeding is concerned. The message given by antenatal clinics is: breastfeeding, but no breastfeeding if you can get alternative feeding. There is a lot of stigma associated with formula and other alternative feedings. At TASO, we are not really doing a lot apart from giving information through counselling.

Concerning motivating field workers, we recognize in Uganda, in TASO especially, that a community worker does not look for the same remuneration as an employee. If you are given counselling skills and the community recognizes you as a community counsellor, then it is very difficult to refuse to counsel your neighbour. The people who come to you for counselling are actually your own community members and you give counsel without realizing it. You might be given a hen or some bananas. The first remuneration is given by the community members themselves through social recognition. This motivates some community members to become community health workers. They use it to climb socially into the political arenas in their communities as well.

Another motivation is education. The certificate that TASO offers is a selling feature. Refresher courses are also offered. We also give incentives like bicycles to facilitate travel of community workers. However, at the end of the day, the volunteers often come back and ask if TASO can give them some money, which unfortunately, we cannot. We have integrated the costs of these kinds of incentives into the district HIV/AIDS budget. The district then gives incentives to their district members.

About the disparities between men and women, one big factor might be that men can afford to go elsewhere for services. TASO services are practically free. When you come to TASO, you are ready to tell the whole world “I am living with HIV”. Not everybody would like to disclose their sero-status, especially men. Women are often poor and need free services. For those men who do seek TASO services, why do they not bring their women? Maybe they are not prepared to disclose their sero-status within their own families.

Editor’s Note: Further discussion of Sophia Monico’s presentation can be found on page 28, at the end of the discussion of Oliver Saasa’s presentation.