Mothers blame themselves and their children can never give up their antiretrovirals.
Tears stream uncontrollably down Samantha Benjamin’s* cheeks as she cradles her four-month-old daughter Francis* in her lap. “I know that it is because I was lazy that my child is HIV positive,” she mumbles softly. “I blame myself.”
The infant bundled in a starry yellow fleece blanket is her fourth child and her “surprise baby”. Samantha, a resident of the Karoo town of Beaufort West in the Western Cape, says she didn’t know she was expecting until the final stages of her pregnancy earlier this year “when I started feeling the life inside of me”.
She says she didn’t pay much attention to her irregular menstrual cycle as she was on a two-month contraceptive injection, which can also cause disruptions to the flow and can, in some cases, stop it completely.
Samantha was diagnosed with HIV during her first antenatal visit six months into her previous pregnancy in 2012 when she was expecting her third child, Mariette*. But because of the government’s prevention of mother-to-child transmission programme, which was introduced in 2002, Mariette received preventative treatment in the form of the antiretroviral drugs nevirapine and AZT.
Nevirapine is an antiretroviral drug given to babies born to HIV-positive women during childbirth and reduces a newborn’s risk of contracting the virus from its mother.
In government health facilities in South Africa, babies exposed to HIV are tested for the virus at six weeks and then again at 18 months. But, according to Carol Tait, a physician who specialises in the prevention of mother-to-child transmission of HIV at the nonprofit health organisation Anova Health Institute, “experience indicates that, in some areas, we may only be testing about a third to a half of HIV-exposed babies at 18 months”.
Now two years old and tested, Mariette is still HIV negative.
But Francis wasn’t so lucky: she is one of the 2.7% of South African children born to infected mothers, according to Medical Research Council data, who contract the virus from their HIV-positive mothers and live with it for the rest of their lives.
Stigma and HIV
The World Health Organisation estimates that there were 3.4-million HIV-positive children globally in 2011 and most of them “acquire[d] HIV from their HIV-infected mothers during pregnancy, birth or breastfeeding”.
Although Samantha used the prevention programme provided by the government for free to protect Mariette, she was “ashamed” of her pregnancy with Francis and kept it a secret, even from her own family. Her “shame” prevented her from going to hospital to give birth.
“It was just after 12 o’clock in the afternoon and I was sitting at home when I started feeling pains. I went to take a bath but just after I finished I realised that the pains were getting worse,” she recalls.
“I sent my neighbour to call the old lady who lives two houses from me and she helped me to deliver the baby. I had to work and I was shy of what people would say as this is my second pregnancy since I found out I am HIV positive.”
Tait says that HIV is “still associated with stigma and misinformation”. “HIV-infected women often feel to blame for their situation. They may be afraid to share their status and do not always have the support they need,” she says.
According to Tait, the prevention of transmission process “should actually start before a woman falls pregnant”. “Prior to pregnancy, it involves the prevention of HIV-infection and avoiding unintended pregnancies in HIV-infected women,” she says.
Family planning is “a vital step in the process on which we need to put renewed focus”, according to Tait.
Samantha did not go for any antenatal check-ups at her nearby clinic while she was pregnant with Francis, where she would have been given a three-in-one antiretroviral pill, in line with the 2013 government regulations, to take until after she stops breastfeeding, which would have significantly reduced the chances of transmitting the virus.
According to the national health department, nearly one in every three pregnant women who attended government clinics in 2011 is HIV positive. The department says that every pregnant woman who attends a state health facility is tested for HIV and about 90% who test positive receive treatment to prevent transmitting the virus to their babies, placing Samantha in the minority.
HIV-infected mothers should be given a combination of three antiretrovirals “as early as possible during the pregnancy”, says Tait. Studies have shown that this intervention can significantly reduce the chances of transmitting the virus to the unborn child. “The prophylactic regimen is taken during pregnancy and breastfeeding, and then may be discontinued depending on the health of the mother,” says Tait.
Instead, Francis was born at home where there were no doctors or nurses who could have tried to prevent infection by providing preventative treatment to the infant shortly after birth.
According to the Joint United Nations Programme on HIV and Aids, one in three babies born to HIV-infected women will contract the virus if there is no treatment provided.
A study recently published in the medical journal the Lancet estimates that the number of new HIV infections among South African children younger than five years old decreased from 56 000 in 2003 to 7 600 in 2013, largely as a result of the country’s prevention of transmission from mother-to-child programme.
Francis tested HIV positive at her six-week clinic check-up and will start paediatric HIV treatment soon.
According to the World Health Organisation, in 2012, 140 541 children under 14 years of age were receiving HIV treatment in South Africa. In the Central Karoo district, of which Beaufort West is a part, 2.5% of children born to HIV-infected mothers become infected with the virus compared with the national rate of 2.7%. The area also has comparatively high rates of antenatal bookings, with 67% of women booking appointments before 20 weeks into their pregnancy compared with the national average of 44%.
But even in fairly functional areas, where HIV and maternal health services are accessible, people like Samantha “still don’t benefit from the [prevention] programme”, says Tait.
Keeping women and children in care
“There are a series of interventions that can be seen as a cascade of steps through pregnancy and the post-natal period, and at every step there can be a fall-off or loss to follow-up of women and children,” she says.
“For example, HIV-testing rates are extremely high for pregnant women in our setting but not all of those who test HIV-infected access antiretroviral therapy and not all of those women continue treatment or bring the baby for testing,” she says. “There are multiple points in the cascade at which fall-off can occur, and the challenge of our scaled-up programme is to retain women and their children in care.”
Currently, public sector patients qualify for free lifelong treatment when they have a CD4 count – a measure of the strength of the immune system – of 350 or less. Pregnant women qualify for treatment regardless of their CD4 count but treatment is discontinued a week after they stop breastfeeding unless their CD4 count is lower than 350.
Health Minister Aaron Motsoaledi announced during his budget vote speech in Parliament in May that South Africa’s HIV treatment programme, already the largest in the world, will be expanded from January 2015. He said that HIV-positive people with a CD4 count of 500 or less will qualify for treatment, in line with World Health Organisation guidelines, and that all pregnant women, regardless of their CD4 counts, will qualify for HIV treatment for life.
“I believe the new policy will simplify the programme, helping to ensure women know what to do once they start treatment. It will also emphasise the practice of starting and remaining on treatment, as for non-pregnant people. It will also help to ensure women are already on treatment before their next pregnancy,” says Tait. “This may have helped the woman described above.”
Expanded ARV programme needs careful implementation
But Tait warns that increasing access to HIV medication doesn’t mean that all pregnant women will benefit. “I do feel, however, that changing the guidelines does not automatically equate to decreased loss to follow-up. There will be more people on treatment that will need to be looked after by the health service. If the service is put under further strain, people on treatment might not get the care they require, or have longer waiting times, which could contribute to defaulting treatment.”
The new guidelines will have to be implemented with a “consideration of human resource availability”, according to Tait. “Alternative methods of care and task-shifting can work well in our setting to achieve effective implementation,” she adds.
This includes a heightened drive to get pregnant women to report to their local clinics at an earlier stage of their pregnancy and undergoing mandatory HIV testing so that interventions could be made before the baby was born, she says.
But because of her self-admitted “negligence”, Samantha missed these crucial steps and her baby is HIV-infected. Reseach has shown there is a high mortality in HIV-infected infants and children without antiretroviral therapy, according to Tait. “Previous data suggested that approximately half of these children will die by the age of two years if they are not on antiretroviral therapy,” she says.
Yet all is not lost.
The life expectancy of HIV-infected children who are diagnosed and started on antiretroviral therapy early has risen and, according to Tait, children on treatment can live well into their adolescence and adulthood. “The main difficulty is ensuring that older children continue to take their treatment, and adolescence is a challenging period in this respect,” she says.
Treatment gives hope
According to the World Health Organisation, “between 2005 and 2011 in South Africa as a whole, the average life expectancy at birth increased from 54 to 60 years, a gain largely attributed to the roll-out of antiretroviral therapy and programmes for preventing the mother-to-child transmission of HIV”.
“Despite the success of the prevention programme, counselling, support, partner testing and continued efforts to decrease the stigma associated with HIV will still be vital to ensure that people remain in care,” says Tait.
Samantha’s tears have dried as she clutches the yellow fleece blanket with her daughter tucked inside.
“I knew that there was a chance that I would infect her with HIV but I was just hoping for the best,” she sniffs. “Even though it was a big shock, she is looking healthy and will be starting treatment soon.”
* Not their real names
The battle to sever the mother-to-child HIV chain
• 2001 – The high court in Pretoria orders the health department to make the antiretroviral nevirapine available to pregnant woman and HIV-exposed babies after a law suit is brought against the department by the Treatment Action Campaign (TAC). The health department challenges the ruling.
• 2002 – The Constitutional Court rules in TAC’s favour, forcing the state to make nevirapine immediately available to HIV-infected pregnant women and their babies.
• 2008 – The guidelines are amended, adding another antiretroviral, AZT, to the regimen. Mothers are given AZT from 28 weeks of pregnancy until birth and a single dose of nevirapine during labour. The infants are given a single dose of nevirapine after birth and a seven-day course of AZT.
• 2010 – New guidelines are introduced by the health department requiring a mother-to-be to have a CD4 count of 350 or lower to qualify for lifelong treatment. In such cases where the CD4 count is higher than 350, prophylaxis is started from the 14th week of pregnancy.
• 2011 – Health Minister Aaron Motsoaledi announces that the state will no longer provide formula milk to HIV-infected mothers. The department adopts a policy of exclusive breastfeeding: a baby is only fed breast milk for the first six months of life. To prevent transmission of the virus through the breast milk infants are given nevirapine.
• 2013 – With the introduction of the three-in-one antiretroviral pill in the country, Motsoaledi announces that all HIV-positive pregnant women will be put on ARVs regardless of their CD4 count, and will stay on the treatment until a week after breastfeeding stops, unless their count drops below 350.
• 2014 – During his budget vote speech in May, Motsoaledi announces that from January
• 2015 year all HIV-positive pregnant women will be started on antiretrovirals for life.
– Source: Treatment Action Campaign, department of health, Anova Health Institute
Is it working?
It is estimated by the Joint United Nations Programme on HIV and Aids that, without interventions, one in three babies born to infected mothers will test positive for the virus (32%).
• 2009 – Seven years after the introduction of a prevention of transmission from mother-to-child treatment programme, South Africa’s transmission rate drops from an estimated 25% to 8%.
• 2010 – It drops further to 3.5%.
• 2011 – 2.7%.
– Source: UNAids, Medical Research Council, department of health
• One in three pregnant women who use government clinics is HIV positive.
• All pregnant women who visit a public clinic are tested for HIV but only 90% of those who test positive actually receive treatment.
• Only 63.3% of HIV-exposed children are tested for the virus.
• Only 54.4% of children eligible for treatment actually receive it.
– Source: Department of health