Positive and pregnant in Asia - How dare you

Extreme discrimination, abuse and abandonment during delivery by maternal health professionals against women with HIV can be  murderous. Susan Paxton reports on a rigorous study conducted in six Asian countries

"  I was so sad because I think my babies would have lived if they had gotten proper treatment.  But I didn’t say anything because I didn’t want to hear more harsh words directed at me. "  ( Navi, Cambodia)        

Today antiretroviral medication (ARVs) can make HIV transmission from a mother with HIV to her child history. Treatment is so advanced it is possible for over 99% of women with HIV to have babies HIV-free, even with normal vaginal delivery. In response to these advances, UNAIDS developed a "Global Plan" to “eliminate vertical pediatric HIV transmission”. The plan has four "prongs": to stop new HIV transmission to women; to stop unwanted pregnancies among women living with HIV; to stop HIV transmission from mothers with HIV to their children; and to stop AIDS related maternal deaths.

Since its launch last year, the Global Plan has led to a massive increase, globally, in HIV testing of pregnant women and putting those with HIV on ARVs. However this issue is very complex. Without eliminating discrimination towards pregnant women with HIV it will be impossible to realise the Global Plan.

A study by the Asia Pacific Network of People living with HIV (APN+), "Positive and pregnant: How dare you" indicates that because of discrimination women face from maternal health staff during pregnancy, many pregnant women with HIV avoid health services. Consequently they and their babies miss out on treatment and care - which is their right - that could keep them healthy and their babies free of HIV.

APN+ conducted this rigorous peer-led study among over 750 women living with HIV who had been pregnant in the past 18 months in six Asian countries: Bangladesh, Cambodia, India, Indonesia, Nepal and Viet Nam.

Most women were diagnosed before their recent pregnancy (56%) and had pre-test counselling (73%). The importance of pre- and post-test counselling with HIV testing is widely accepted as necessary because of HIV-related stigma. However, in India, where the vast majority of women were diagnosed during pregnancy, only 50% received pre-test counseling. Often test results were given to husbands, parents and parents-in-law but not to the woman herself.

“I was not counselled, only informed that the routine tests would include HIV.  I picked up the blood report from the laboratory and opened it on the way to the doctor’s office.  I had heard of HIV when I was in school, but did not understand what it was, and was not sure what the test result meant.”  (Muskan, India)

Most women (64%) were on ARVs, which can successfully prevent HIV passing from a mother to her child, however most started when their immune system was depleted and only 7% started before their CD-4 cell count dropped below 350, the level recommended by WHO for treatment initiation.  Almost one in three women in the study use outdated ARV regimens no longer recommended by WHO.

More than one in three pregnancies (37%) were unwanted, yet women said condoms are the only contraceptive promoted among women with HIV. Women have little control over condoms and many said they want contraceptives under their control such as Intra-Uterine Devices, hormonal contraceptives and female condoms.

Of 420 women who delivered by the time of the study, 63% had vaginal deliveries and 37% had caesareans.  Many (30%) were encouraged to undergo sterilisation and these women were significantly more likely to also have had a caesarean.

Many women spoke about misinformation they received from health care workers regarding HIV and pregnancy. Women said they want greater investment in counselling services from other women with HIV and up-to-date and accurate information about HIV and pregnancy, infant feeding and ARVs.

Women frequently faced judgmental attitudes from health care staff and were generally discouraged from continuing the pregnancy.

"When I went to the obstetrics department the staff were afraid of me and said, 'How dare you have a baby. Aren’t you afraid to die?' The doctor said, 'You are already positive so your health is not good so you should have an abortion'... I said to the doctor that I have a right to have a baby under the law." (Kieu, Viet Nam)

At delivery, women invariably faced discrimination in government hospitals.  Many women were verbally abused and many spoke of abandonment during delivery.

"During delivery of my baby the doctor wanted to put on two sets of gloves. He had put on one set but the baby was already coming out and the doctor tried to push it back in so he could put on another set of gloves."  (Saru, Nepal)

“The first thing they asked me was why I was having a baby when I knew I was HIV-positive.  One person asked me why I had not had an abortion.  Then I was told to lay down with my feet up [in stirrups]. I was left alone for hours in labour… nobody came to check on me.  The first baby came out and fell directly into the rubbish bin under my feet.  I could not do anything because the second baby was coming out so quickly.  When someone finally came to check on me, the first baby was black and blue, and dead, and the second one was halfway out.  They did not want to touch the baby because they did not want to touch my blood.  I heard the second baby cry.  He was a real person.  But they took him away before I could properly see him and put him on oxygen for five hours, and then told me that he died.  I never saw him except for five seconds.  I was so sad because I think my babies would have lived if they had gotten proper treatment.  But I didn’t say anything because I didn’t want to hear more harsh words directed at me.”  (Navi, Cambodia)

Unless the extreme discrimination which pregnant women with HIV face from maternal health care workers is addressed, women will not make optimal use of health services and efforts to reduce HIV transmission to infants will be ineffective. Women deserve respect for their right to freely choose the number and spacing of their children, and the same human right to the best available health care that all women have. 

This is one of a series of articles that openDemocracy 50.50 is publishing on 'AIDS, gender and human rights' in the run up to, and during,  the AIDS 2012 conference in Washington DC,  July 22-27.