October 7, 2015

Dorothy’s story: living with HIV and unmet family planning needs

Written by Sarah Nakimbowa, Key Correspondents

2015-10-07_561520fd5f3e7_Dorothy-with-her-son-on-one-of-the-trainings.jpgDorothy Mirembe, from Nsambya a suburb of Kampala in Uganda, is a smiling, energetic woman who is full of life. It’s hard to imagine that ten years ago she was pale and thin, and hid herself from the world.

“I used to cover myself like Muslims so that no one would recognise me,” she says. “I was so thin that the wind blowing could push me down. I avoided contact with people and spent most of the time indoors and lonely. Not even my relatives could come near me. I was in self stigma, I was traumatised and living in discrimination.”

At age 18, Dorothy had fallen pregnant. The pregnancy was not intended, and she was very weak. When she attended an antenatal clinic at Mulago Hospital, she tested HIV positive.

Preventing unintended pregnancies among women living with HIV is one of the World Health Organization’s four cornerstones of preventing mother to child transmission of HIV. However, according to the Uganda Demographic and Health Survey, the fertility rate in Uganda has remained persistently high at 6.7 per cent and there is a high maternal mortality rate of 438 per 100,000 live births.

Contributing factors could include a low contraceptive prevalence of 26 per cent and a high unmet need for family planning of 34.3 per cent. Unmet need is the percentage of women who want to space their births, or do not want to become pregnant, but are not using contraception.

Support to live positively

Dorothy was identified as needing support by the International Community of Women living with HIV in East Africa (ICWEA). This association supports women living with HIV to plan for the future and live positively.

“When a counsellor gave me the results, I knew death had knocked on my door,” she said. “I went back home and cried behind closed doors. I didn’t disclose my status because of the fear and humiliation I expected from people around me.”

In fact, Dorothy’s family had guessed she was living with HIV but were afraid to speak to her about it. “Anyone mentioning HIV was an enemy to me,” Dorothy says.

“I was pregnant and contracted tuberculosis, so I was bed ridden for three weeks. The only thing I was thinking of was my unborn baby. At Mulago, I was offered care and counselling from different volunteers at the hospital. They visited and assisted me and gave me food and moral support. After I was discharged, the volunteers continued to support me until I finally recovered.”

When Dorothy returned home, an ICWEA volunteer in her neighbourhood approached her. The woman was also living with HIV and was taking antiretroviral drugs.

“She advised me to go to the family planning clinic in Mulago Referral Hospital and receive counselling and treatment,” says Dorothy. “I joined the group where I learnt many things. If it were not for them, I would be dead. They supported me and I gave birth to a baby boy who was free from HIV. This was for what I had been praying, for my kid to be safe.”

Preventing unintended pregnancies

After giving birth, Dorothy received family planning advice at Mulago Hospital. She was given a long-term contraceptive implant to prevent her falling pregnant again.

Through continuous engagement, Mulago Hospital identifies and refers mothers with HIV to services to prevent transmission of the disease to their child. Peer educators living with HIV identify clients in need of family planning. They are then trained in long term and short term contraception methods.

This approach aims to increase uptake of long term methods such as contraceptive implants and intrauterine devices to prevent unintended pregnancies. It also promotes short term methods where appropriate, including condoms, pills and injectable contraceptives.

Mapping people living with HIV

In 2014 Uganda passed a law which criminalises HIV transmission. According to Lillian Mwoleko, executive director of ICWEA, many women do not want to disclose their status, fearing their husbands will use the law against them.

“The law tells us about the mandatory testing, which is not bad, but the way it is carried out is not favorable for women,” she says. “Each woman is supposed to test for HIV as soon as she visits an antenatal clinic, so you will find that the woman will be the first to know her HIV status and will fear to disclose it to her husband. If she discloses, her husband will think she infected him and that’s how the law comes in of who infected who.”

She adds: “We have 7,630 members from five countries, with many members from Uganda. We map these women from village health facilities, especially young women. We counsel and guide them and then we refer them to main hospitals for family planning services and further medication and treatment. We train women to identify others who cannot come up to identify themselves.”

Dorothy has been volunteering with ICWEA for nearly a year and uses her experience to reach out to other people living with HIV.

“I visit at least two clients in a day and give them moral support,” she says. “Because we are many volunteers with a schedule, we always know who is going to the hospital visits or home visits. I have managed to reach 20 households and 20 people, which is a good achievement.”

Sarah Nakimbowa lives in Uganda and is a member of the Key Correspondents network which focuses on marginalised groups most at risk of HIV and people living with HIV, to report the health and human rights stories that matter to them. The network is supported by the International HIV/AIDS Alliance.