Living with HIV

Human immunodeficiency virus (HIV) has claimed more than 32 million lives and it continues to be a major global public health issue. However, with increasing access to effective prevention, diagnosis, treatment and care, most people with HIV are now able to live long and healthy lives. Three people from different parts of the world reflect on what HIV means to them.

Supporting mothers

HIV had a devastating impact on maternal and child health when it came to Zambia, more than 30 years ago.

In one urban community in Lusaka, a quarter of mothers tested positive for HIV. They had many complications during pregnancy and their babies were often premature and small. More than a third of these mothers passed on HIV to their infants. This caused high levels of childhood illness and malnutrition, and many children died. It was an extremely difficult and painful time.

We set up several projects including a large, countrywide HIV awareness and prevention campaign. Over time, this resulted in a drop in HIV among mothers to less than 12 per cent. Routine testing in antenatal clinics and treatment of HIV in pregnancy and after delivery brought the mother-to-child transmission rate down to less than ten per cent.

We faced big problems of stigma. Mothers were afraid to tell their partners that they had been diagnosed with HIV, even though it was often the partner who had infected them. We established caring and confidential counselling and support, and the proportion of mothers accepting treatment steadily increased. Last year, over 80 per cent of mothers who needed long-term antiretroviral therapy (ART) took it regularly.

All of this required a massive increase in laboratory testing, skilled staff and ART medicines. Fortunately, we were supported well by our government and international agencies. Management of HIV in pregnancy is now incorporated into the Zambian government’s national maternal and child health programme.

Dr Lackson Kasonka, University Teaching Hospital, Lusaka, Zambia

uth.gov.zm

Love in action

It was our first gathering and among the guests was six-year-old Livia. Both of Livia’s parents had died from AIDS-related illnesses and Livia had acquired HIV through her mother’s milk.

I was serving refreshments and from the kitchen I saw that Livia was playing with my daughter, who was four years old. At that time, and I don’t know why, I had the urge to stop my daughter from playing with her. It took me a few long seconds to react and realise that my fear was unfounded.

I am a Patsida facilitator in Sucre, Bolivia, and I am also the pastor of a small church. The Patsida programme trains church facilitators to speak about sexual health in their congregations, schools, colleges and the wider community. The aim is to break down barriers of silence and discrimination and open the way for the most vulnerable in our communities to seek help and support.

I had been speaking in a church about HIV when someone quietly asked me if I would visit a girl in hospital, to pray for her. The next day we went to see her. Livia was in an isolated room, very thin and with an infection that would not leave her. The only relative willing to look after her was an elderly aunt.

This experience changed my perspective. I began to focus on the need that each individual has for love, acceptance and support. I spoke with my wife and some church friends and we decided to invite people living with HIV to a gathering every two weeks in our house.

Initially some people were very against this plan, and a few even left our church. However, we persevered and as a congregation we are now much more sensitive to the needs of our community, especially people living with HIV.

Livia is receiving the treatment she needs and is experiencing much better health. She plays with my daughter regularly and they have become good friends. We, as parents, are no longer afraid and we love and accept Livia, just as we do all our friends.

Pastor Eduardo Sotomayor, Patsida, Bolivia

The Patsida programme is run by Organización para la Educación y el Servicio a la Comunidad (OESER).

oeserbolivia.org

Hope and a future

It is so easy to fall into risky behaviour. Before you know it, you have put your family in danger. I used to inject drugs, and often used unclean injecting equipment. That was the start of our problems.

Several years ago, my wife became very sick. While she was in hospital she tested positive for HIV. I sought help from a group of local churches called NJSS (Nawa Jeewan Samaj Sewa: New Life Service Organisation). They supported my wife, and her health was restored. Later, I took my children for an HIV test and found out that they are also HIV positive. NJSS provided counselling, and we have all learnt to live with the condition.

My community did not want to know us and we became very poor. We found it difficult to get enough food. We lived in a small, temporary hut made of dry grass and mud that became uninhabitable, especially in the wet season. Sometimes we lived on a neighbour’s veranda.

I visited NJSS again and explained my family’s problems. Twenty-five members from a local church came and constructed a two-roomed house for my family. They collected construction materials by donation and did all the work themselves. That was real love in the name of Jesus. They also provided me with a rickshaw to help me earn enough money to support my family. My children now go to school and my daughter wants to be a doctor when she grows up.

I share my story with community groups and have seen neighbours change their attitudes towards people living with HIV and AIDS. I am thankful to NJSS, the church and God for giving my family hope and a future.

Raju, Nepal

umn.org.np/partners/njss

Human immunodeficiency virus (HIV)

HIV weakens the immune system and makes people more likely to suffer from infections, cancers and other diseases. The most advanced stage of HIV infection is acquired immunodeficiency syndrome (AIDS).

HIV can now be diagnosed through rapid tests with same-day results. This allows people to quickly receive the treatment and care they need. There is still no cure for HIV infection, but effective antiretroviral therapy (ART) can control the virus and help prevent transmission to other people.

HIV can be transmitted via the exchange of body fluids including blood, breast milk, semen and vaginal secretions. HIV can also be transmitted from a mother to her child during pregnancy and delivery. The risk of mother-to-child transmission can be almost eliminated if both the mother and her baby are provided with ART as early as possible in pregnancy and during breastfeeding.

Individuals cannot become infected through ordinary day-to-day contact such as kissing, hugging, shaking hands, or sharing personal objects, food or water.

Tuberculosis (TB) is the leading cause of death among people living with HIV. Early detection of TB and prompt treatment can prevent these deaths. TB screening should be offered at HIV care facilities, and HIV testing should be offered to all patients with TB.

Further reading

Helping children live with HIV
By Susan McCallister, Zoe Marinkovich, Todd Jailer

This guide is designed to help communities affected by HIV support the well-being and healthy development of children. Download free of charge from hesperian.org/books-and-resources Printed copies can be ordered by emailing [email protected] or writing to Hesperian, 1919 Addison Street, Suite 304, Berkeley, CA, 94704, USA.