Stigma puts HIV+ mothers at risk

A lab technician draws blood from a patient for HIV testing at the Aids Information Centre in Kampala in 2014. Picture: Isaac Kasamani

A lab technician draws blood from a patient for HIV testing at the Aids Information Centre in Kampala in 2014. Picture: Isaac Kasamani

Published Dec 1, 2015

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London - When Juliet Nalumu, overjoyed at her first pregnancy, visited her local hospital in eastern Uganda for a check-up, it turned into one of the worst days of her life.

She found out she was HIV positive. “All the joy and happiness disappeared.”

Lonely, and terrified of telling her husband of two years, the 26-year-old decided to keep it a secret.

“I was his third wife, and the youngest, so by going home and telling him I was HIV positive, both he and his other wives would believe I'd brought the infection into the family.”

“They'd probably chase me out of the house. I depended on him entirely - he was the breadwinner. We would have had nothing to live on,” Nalumu said while on a visit to London ahead of World Aids Day on December 1.

Nalumu's story is not unusual in eastern Uganda - and in many parts of Africa - where women are entirely dependent on their husbands for food, shelter and medicine, and where stigma against Aids is common.

With only one month's supply of anti-retroviral drugs, and the hospital a two-hour bus ride from her village in Kamuli district, she did not want to raise suspicions by returning for more medication.

“I became very sick. They had to carry me to the hospital. I had tuberculosis and I was very wasted,” she said.

Even after giving birth while sick and very thin, she said nothing to her family. She was told by a nurse she had to exclusively breastfeed her twins to protect her children from the virus. Severely malnourished, she was unable to do so.

About 40 percent of infections from mother to child happen when babies are fed a combination of breast milk and formula milk or other foods. The combination irritates the intestinal lining making children more susceptible to the virus.

One of her twins fell ill at four months and died. Her other daughter developed similar symptoms at nine months but survived.

“This time I said for the sake of this innocent child I had to do my best. I did casual work for my neighbours, anything to raise money to get me back to the hospital.”

An estimated 7.3 percent of people in Uganda aged 15 to 49 years old have HIV.

Globally nearly 37 million people are living with the virus.

Nalumu's fortunes changed four years later when she started working as a mentor for mothers2mothers, an international charity helping mothers with HIV.

“I now had a voice, a salary,” she said.

But before she could start work, she had to tell her family she had the virus.

The whole family was checked for HIV. Her husband and one co-wife tested positive.

He was supportive, but some of her other relatives were less so.

One of her sisters asked her to hand over her assets, now that she was earning money, saying she would die soon.

Neighbours asked her why she was doing training, as they assumed she would die before the end of the course.

But her health improved, and armed with the medication and knowledge she needed, she went on to have two children who are virus-free.

She now helps other mothers struggling with the virus, and teaches them how they and their children can lead normal, healthy lives.

“HIV is just in my blood and that is all. I have a very normal life.”

Her eldest daughter Joelia, now eight years old, still struggles with her health.

Last year she demanded to know why she alone of all her siblings had to take medication every day.

Her parents finally explained she had been infected with HIV through breastfeeding.

“I felt so much pain, I could cry day and night,” Nalumu said.

Over the last 15 years, scale-up of treatment has been most dramatic in Africa where now more than 11 million people are receiving HIV treatment, up from 11 000 at the turn of the century, the World Health Organisation said on Monday.

Mothers2mothers reaches a quarter of all pregnant women in the nine countries in which they work.

Women are put on ARVs as soon as they test positive, and stay on the treatment for life.

This reduces the risk of transmitting the virus to their children and partners.

Babies are given a short treatment of drugs as soon as they are born, in case they were infected during childbirth.

And women are encouraged to feed their children exclusively formula milk - an expense many cannot afford - or breast milk.

As a result of these measures, mother to child transmission has been reduced to near zero, according to mothers2mothers.

Reuters

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