When Irene Nkosi took to the stage at a glossy Moms+SocialGood event in New York recently, it was hard to pair the confident woman in a striking, Swazi-inspired dress with her tragic story: “By the age of 16, not really even a woman yet, I was a parent. I was also a victim of rape and my attacker was never jailed,” Nkosi told the stunned audience.
She went on to say how – after the birth of her second child – she was diagnosed with HIV.
“Now I was sure no one loved me – not even God.”
Nkosi, from Bronkhorstspruit, on the border between the Gauteng and Mpumalanga provinces in South Africa, said the clinic didn’t educate her about HIV “or how to prevent my baby from infection”.
“I was heart-broken and frustrated. I feared for my life and the baby I was carrying.”
Hoping for support after sharing her status with family and neighbors, she was instead isolated and called names. Although she gave birth to an HIV-negative baby, it died after being smothered by a blanket. Nkosi believes crèche staff neglected her baby because of her own positive status.
Nkosi’s story took me back to 2005, to Chris Hani Baragwanath Hospital in Soweto, South Africa, where I was researching the challenges faced by HIV-positive, pregnant women for a Media Fellowship on HIV at Wits University’s Journalism School.
The stories those women told were just as heartbreaking.
Most of the women I interviewed were following the correct antiretroviral regimen to prevent HIV transmission to their babies, but for some it was too late. Almost all of them carried the terrible burden of stigma and rejection by their families, partners and communities. Often, they were “outed” after feeding their babies the free government-issue formula milk in its distinctive orange tins to prevent HIV transmission. They would tell elaborate lies to explain why they were not breastfeeding.
“My grandmother forced me to breastfeed. I told her my breasts were dirty, the nipples were cracked. Then I just take a razor blade and then I just cut… and I tell her that there is blood in my breast, it is not good to breastfeed,” one woman told me.
Another I interviewed had been hounded out of the house by her mother and sisters and forced into a shelter. One frightened young mom said she had been too scared to disclose her status at a hospital in KwaZulu-Natal and now had an HIV-positive baby. Several told me that their partners had rejected them and blamed them for “bringing the disease into the house”.
I can only hope that the lives of those women and their children have improved since then. But, more than a decade later, what are the prospects for the HIV-positive women who are pregnant now?
The big picture is hardly rosy, with an estimated seven million South Africans living with HIV (according to 2015 figures). And it is women and young girls who still carry the greatest burden, with HIV prevalence in women almost double that in men, and with the rate of infection in young women aged 15-24 almost four times higher than in males of the same age bracket. Among certain vulnerable groups like sex workers, HIV rates are sometimes as high as 40-88%, according to the Human Sciences Research Council.
But without a doubt, massive strides have been made in putting people who need treatment onto it (now 48% of all those infected in the country are on antiretroviral treatment) and in reducing HIV transmission from mother to child. According to UNAIDS, more than 95% of the country’s pregnant, HIV-positive women are accessing antiretroviral treatment to prevent transmission to their babies.
In 2011, UNAIDS and PEPFAR (U.S. President’s Emergency Plan for AIDS Relief) launched the Global Plan to lower mother-to-child transmission by 90%. After four years, six priority countries – South Africa, Swaziland, Botswana, Mozambique, Namibia and Uganda – had met this target. Mother-to-child transmission rates in South Africa currently stand at 4%. If the rate of infection is under 5%, the UN considers mother-to-child transmission to be virtually eliminated, since 100% elimination cannot be achieved.
Over the years, the guidelines and treatment for HIV-positive mothers and babies have changed too. Now, the World Health Organization recommends that all pregnant and breastfeeding mothers begin lifelong antiretroviral treatment. And in 2011, the South African government phased out supplying free formula milk in public hospitals and clinics. Unless medical conditions dictate otherwise, breastfeeding is now recommended.
But what of the people behind the statistics, people like Nkosi, and the mothers I interviewed? Nkosi says her life changed dramatically when she came into contact with mothers2mothers, an organization that deserves much credit for helping to reduce transmission rates to babies as well as for improving the health and emotional states of HIV-positive mothers. The organization employs HIV-positive Mentor Mothers to help women access treatment and health services for themselves and their families and bring them out of isolation.
When Nkosi signed up as a mentor for mothers2mothers, her confidence grew daily. Now she is happily married to an HIV-positive man and together they have a four-year-old daughter, Nothando, who is HIV-negative. Their status is out in the open and the children compete to give their parents their daily medication, she laughingly tells me later.
Nkosi ended her short, powerful speech with the following words: “(My children) have a mother who they can be proud of, a woman who was once a victim. But now I can strongly say I’m a survivor.”
Stigma, she tells me, is gradually diminishing. “Even though some people still lack knowledge, in the support group sessions we share our challenges and fears, the problems we encounter in our households. We find out how best we can help each other.”
A mothers2mothers press release captures the organization’s simple but highly-effective approach: “The epidemic may be global but the solution is local.” When marginalized HIV-positive mothers are trained to be healthcare workers in understaffed health centers, and paid for their work, they become role models and leaders in their communities.
The results of this formula have been astounding. Studies showed that women who received two or more mothers2mothers visits were seven times more likely to test their babies for HIV at six weeks, than those who only received one visit. Among their clients, the rate of transmission is only 2.1%. A recent external study in Uganda also showed the model to be a huge money saver by avoiding treatment costs.
Launched in Cape Town in 2001 by Dr Mitch Besser, an American gynaecologist and obstetrician who fell in love with South Africa as a high school exchange student and returned to work there, mothers2mothers started out with five Mentor Mothers. Now it services 860,500 women and families in eight sub-Saharan countries and is partnering with both the South African and Kenyan governments.
In South Africa, mothers2mothers had by 2015 reached close to 51,000 HIV-positive women and 27,800 babies exposed to HIV. The organization also offers early childhood services and HIV counseling, testing and sex education for adolescents, through a peer mentorship program.
Robin Smalley, Co-founder and Director of mothers2mothers U.S., explains why the model is so successful. “If you empower women to take control of their health and their families’ health, they’ll move mountains to do this. We give them the tools to succeed and they do. We are not coming in as outsiders and telling them what they should be doing. We give them the information and employment and let them do what comes naturally, which is to support one another and their children.” Mentor mothers are employed for two years before they phase out, and let others take over.
Smalley’s own involvement with mothers2mothers came about when, in a grief-stricken state, she visited Besser after his sister (her close friend), died unexpectedly after minor surgery. Smalley was so taken by the work that Besser was doing in Cape Town, and the invincible spirit of the HIV-positive mothers she encountered, that she immediately persuaded her family to join her there and began working to grow the organization. Years later she moved back to the US to look after her ageing father and to keep building mothers2mothers’ financial base by lobbying US donors.
Since then, she has been working 24/7 to keep up with the organization’s expansion. Although mothers2mothers has had requests from India, Thailand, Haiti and Central American countries to open up branches there, it is staying focused on sub-Saharan Africa, where the need is greatest. – Written by Philippa Garson