17 November 2000

Expert Group Meeting on
"The HIV/AIDS Pandemic and its Gender Implications"
13-17 November 2000
Windhoek, Namibia


Positive living: the situation of women living with HIV/AIDS

in Uganda

Prepared by*

Beatrice Were
National Community of Women Living with HIV/AIDS

*The views expressed in this paper, which has been reproduced as received, are those of the author and do not necessarily represent those of the United Nations.

POSITIVE LIVING: The situation of Women Living with HIV/AIDS in Uganda

Background: As a woman living with HIV, a community worker, a mother and activist, I feel that this is a great honour to be part of this important meeting.

I am particularly pleased to have this rare opportunity to share this distinct honor with highly distinguished world leaders and experts on AIDS and Gender.

The AIDS epidemic has been with us for almost 20 years. A number of us have spent many years working at the community level.

Our hope is that we would contribute to successful efforts which would check the spread of the epidemic.

The hard facts today

The situation of Women Living with HIV/AIDS in Uganda

Who decides when, where and how to have sex

Who makes key decisions in a home e.g how to spend house hold income, property ownership etc

The desire by an HIV positive woman to bear children is perhaps stronger than that of an uninfected person whose ability to have children is not hampered by the complexities of HIV.

In our culture young girls grow up with the knowledge of the importance of having children.

Children are a symbol of wealth, investment and social security in the African context

A woman is therefore expected to bear children and if she does not, then she is not a respectable woman. We need to bear in mind that in Africa, the idea of marriage in our culture was to have children. With these kinds of expectations from society and from within herself as woman, the question is; How does an HIV infected woman hope to cope with the challenges and barriers that arise as a result of being HIV infected and the desire to have children.

Unfortunately today there seem to be no alternatives or practical solutions due to the complexity of the matter.

The challenge of MTCT

Science and research has confirmed beyond reasonable doubt the risk of MTCT. While in the developed countries HIV positive mothers have the benefit of eradication of MTCT through new treatments (ARVs) in Uganda like most of Africa HIV positive mothers have no options. The drugs (ARVs) are very expensive.

This situation is worsened by the lack of information on the available alternatives for infant feeding and the high cost for formula. The clear message sent to HIV positive women has been, forget about motherhood if you are HIV positive.

Where therefore is the measure of success as per societal norms?

It is also important to note the changing messages. Hence from "breast feeding for all" to "no breast feeding for HIV positive women" to "exclusive breast feeding". What should we as HIV positive women do? On the other hand culture expects us to breast feed all our babies.

This issue raises a lot of stigma and pressure for an HIV positive woman.

The Role of Men

The AIDS epidemic and its overwhelming impact on families calls for the involvement of men more that ever before.

Women infected with HIV are faced with such challenging issues like safer sex (condom use),

disco-dance, to breast feed or not, caring for their infected children, husband and fending for the family when one’s spouse is sick and after his death. Experience form Uganda demonstrates that women come to terms much easier and are more keen to seek medical care, counselling, information and support. On the contrary men shy away from the reality of HIV/AIDS and are not very enthusiastic about counselling and testing.

This situation complicates decision making in a family and is bound to curtail positive living.

For women especially, this could easily lead to blame, stigma, rejection and violence. The reality however is that most women are often infected by the single partner they have.

The burden of care:- Most HIV positive women in Uganda find themselves in a position where they are burdened by caring for their partner/spouse, HIV positive baby, having to provide care and support to the sick and to orphans.

Normally the HIV infected woman is forced to ignore her own health needs due to her traditional role as a woman, she is obliged to provide care to her family.

The Rights of an HIV positive Woman:

While there has been a lot of advocacy and sensitisation a lot of cultural practices and beliefs have not yet been changed in Uganda. This situation is more prominent in the rural areas where the majority of women are illiterate and are under customary law. In the rural areas of Uganda women are still subjected to disinheritance or loss of property to their in-laws or relatives. This situation renders a number of HIV positive women destitute, desperate and vulnerable to re-infection due to poverty.

NACWOLA’s response

This has been done through:-

Through this we have enhanced their self-esteem and confidence in their families, communities and society.

Thus facilitating their ability to cope as heads of house holds.



re-infection and further spread of HIV.

Special attention to the Girl and Boy child:- Enactment and reinforcement of Gender sensitive laws that protect and promote equal rights of the Girl child in terms of education so as to prepare her for a better and meaningful future. A future where she can take charge of herself.

On the other hand the boy child needs sensitisation and education to acknowledge and appreciate his role and responsibilities in society with a gender sensitive out look

Sensitisation and Advocacy on Gender equality:- There is need for communities, governments and the international community to sensitise grass-roots on Gender equality. This will call for a clear understanding of communities, their specific challenges and needs to enable them acknowledge the need for Gender equality

Regional Forums: O.A.U, SADAC, COMESA, ADF, Great Lakes region, E.A.C should be lobbied to incorporate a gender Agenda and AIDS as an urgent issue.


The AIDS epidemic has affected us in a very devastating way. It has clearly revealed the imbalance of power between men and women. We can not say that we have fared well in our efforts. This is because the epidemic continues to rage on. We need to utilise the knowledge, diversity of experiences and expertise to support men and women take up their responsibilities and acquire the power to protect themselves from HIV infection. For each new infection should concern us.

Ladies and gentlemen, money counts in the fight against HIV/AIDS.

This virus is spreading out of control because those it affects most lack money and resources to put in place workable interventions.

We therefore need to speed up our efforts without further delay.

Thank you.