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
Measles: Should Vaccinations Be Compulsory?
Following a measles outbreak in Rockland County in New York State, authorities there have declared a state of emergency, with unvaccinated children barred from public spaces, raising important questions about the responsibilities of the state and of individuals when it comes to public health.
Measles virus is spread by people coughing and spluttering on each other. The vaccine, which is highly effective, has been given with mumps and rubella vaccines since the 1970s as part of the MMR injection. The global incidence of measles fell markedly once the vaccine became widely available. But measles control was set back considerably by the work of Andrew Wakefield, which attempted to link the MMR vaccine to autism.
There is no such link, and Wakefield was later struck off by the General Medical Council for his fraudulent work. But damage was done and has proved hard to reverse.
In 2017, the global number of measles cases spiked alarmingly because of gaps in vaccination coverage in some areas, and there were more than 80,000 cases in Europe in 2018.
The World Health Organisation has declared the anti-vaccine movement one of the top ten global health threats for 2019, and the UK government is considering new legislation forcing social media companies to remove content with false information about vaccines. The recent move by the US authorities barring unvaccinated children from public spaces is a different legal approach. They admit it will be hard to police, but say the new law is an important sign that they are taking the outbreak seriously.
Most children suffering from measles simply feel miserable, with fever, swollen glands, running eyes and nose and an itchy rash. The unlucky ones develop breathing difficulty or brain swelling (encephalitis), and one to two per thousand will die from the disease. This was the fate of Roald Dahl’s seven-year-old daughter, Olivia, who died of measles encephalitisin the 1960s before a vaccine existed.
When measles vaccine became available, Dahl was horrified that some parents did not inoculate their children, campaigning in the 1980s and appealing to them directly through an open letter. He recognised parents were worried about the very rare risk of side effects from the jab (about one in a million), but explained that children were more likely to choke to death on a bar of chocolate than from the measles vaccine.
Dahl railed against the British authorities for not doing more to get children vaccinated and delighted in the American approach at the time: vaccination was not obligatory, but by law you had to send your child to school and they would not be allowed in unless they had been vaccinated. Indeed, one of the other new measures introduced by the New York authorities this week is to once again ban unvaccinated children from schools.
With measles rising across America and Europe, should governments go further and make vaccination compulsory? Most would argue that this is a terrible infringement of human rights, but there are precedents. For example, proof of vaccination against yellow fever virus is required for many travellers arriving from countries in Africa and Latin America because of fears of the spread of this terrifying disease. No-one seems to object to that.
Also, on the rare occasions, when parents refuse life-saving medicine for a sick child, perhaps for religious reasons, then the courts overrule these objections through child protection laws. But what about a law mandating that vaccines should be given to protect a child?
Vaccines are seen differently because the child is not actually ill and there are occasional serious side effects. Interestingly, in America, states have the authority to require children to be vaccinated, but they tend not to enforce these laws where there are religious or “philosophical” objections.
There are curious parallels with the introduction of compulsory seat belts in cars in much of the world. In rare circumstances, a seat belt might actually cause harm by rupturing the spleen or damaging the spine. But the benefits massively outweigh the risks and there are not many campaigners who refuse to buckle up.
I have some sympathy for those anxious about vaccinations. They are bombarded daily by contradictory arguments. Unfortunately, some evidence suggests that the more the authorities try to convince people of the benefits of vaccination, the more suspicious they may become.
I remember taking one of my daughters for the MMR injection aged 12 months. As I held her tight, and the needle approached, I couldn’t help but run through the numbers in my head again, needing to convince myself that I was doing the right thing. And there is something unnatural about inflicting pain on your child through the means of a sharp jab, even if you know it is for their benefit. But if there were any lingering doubts, I just had to think of the many patients with vaccine-preventable diseases who I have looked after as part of my overseas research programme.
Working in Vietnam in the 1990s, I cared not only for measles patients but also for children with diphtheria, tetanus and polio – diseases largely confined to the history books in Western medicine. I remember showing around the hospital an English couple newly arrived in Saigon with their young family. “We don’t believe in vaccination for our kids,” they told me. “We believe in a holistic approach. It is important to let them develop their own natural immunity.” By the end of the morning, terrified by what they had seen, they had booked their children into the local clinic for their innoculations.
In Asia, where we have been rolling out programmes to vaccinate against the mosquito-borne Japanese encephalitis virus, a lethal cause of brain swelling, families queue patiently for hours in the tropical sun to get their children inoculated. For them the attitudes of the Western anti-vaccinators are perplexing. It is only in the West, where we rarely see these diseases, that parents have the luxury of whimsical pontification on the extremely small risks of vaccination; faced with the horrors of the diseases they prevent, most people would soon change their minds.
–Tom Solomon; Director of the National Institute for Health Research (NIHR) Health Protection Research Unit in Emerging and Zoonotic Infections, and Professor of Neurology, Institute of Infection and Global Health, University of Liverpool
New Ways Of Thinking On Health, Arts And Humanities Are Emerging In Africa
Imagine bringing the best of all academic disciplines, artistic creations, activist experience and health care knowledge to bear on understanding and addressing current health care concerns. Rather than silos of people working in their specific areas of interest, imagine collaborations committed to listening and learning from all participants.
This is the vision of Medical and Health Humanities in Africa. It’s a field that grew out of the medical humanities in the US and UK. It brings together academics, researchers, practitioners, creative artists, health care seekers and providers.
Essentially, it straddles disciplines and practices in an effort to address health concerns. Artists compose music to open up understandings of health care and specific conditions, such as delirium. Some academics open up new conversations about existing health concerns like AIDS or use everything from yoga to photography to observation and drawing to help educate health sciences students. Others pair academics and artists to help young people talk about sex and sexuality or tuberculosis.
At its core, Medical and Health Humanities is about conversations and collaborations between people who are interested in health. This encourages new understanding, practice and knowledge. It also seeks to provide “translators” who can make often complex ideas in science and humanities accessible. They can also use creative arts to change perceptions, frame new questions and direct new discussions that result in more nuanced answers to health issues.
While still a relatively new field on the African continent, it is growing and gaining momentum. The latest milestone is the first English-language special issue of the globally respected BMJ Medical Humanities Journal to deal exclusively with work on and about medical and health humanities in Africa.
The special issue came out in December 2018. It showcases work from various countries in Africa, among them Nigeria, Malawi, Kenya, Tanzania and South Africa.
The projects profiled in this special issue, and others elsewhere on the continent, reveal the vital role Medical and Health Humanities can play across Africa in bridging the gaps between disciplines to improve people’s experiences of health care.
Beyond disciplinary boundaries
One of the Medical and Health Humanities projects highlighted in the BMJ’s special edition deals with digital storytelling and antiretroviral adherence in KwaZulu-Natal, South Africa. Another article shows how opium, thalidomide and contraceptives contributed to the making of modern South Africa.
The projects and articles themselves are, of course, important. But another critical element that must not be overlooked is how the field exemplifies inter-, trans- and multidisciplinary research and practice. It removes people from their disciplinary silos.
This is becoming increasingly important across academia. In the worlds of medicine and health, people often work on similar concerns in familiar ways; in doing so, they miss out on new perspectives. Working across disciplines and practices is a way to learn from each other and reflect on how things could be changed for the better.
And, crucially, it creates conversations about how we might improve our collective understanding of health and wellness.
On the African continent, the Medical and Health Humanities community is also trying to do things differently when it comes to how research is conducted and presented.
If a field is genuinely committed to collaboration, collective engagement, building networks and relationships, it must do more than work quickly to “produce measurable outcomes” limited to academic articles. It must spend time building connections that extend beyond one event or “outcome”.
We attempted to do this during the writing of the special issue of the BMJ Medical Humanities journal. We were among a group of practitioners in South Africa who pooled resources from two universities to bring as many people who were working on the special issue together as possible. We wanted to ensure that experienced and emerging writers from multiple disciplines and practices had a chance to benefit from each other’s knowledge and experiences.
A workshop was held in 2017 at the Wits Institute for Social and Economic Research (WiSER). Participants came from Zimbabwe, Kenya, Nigeria, Tanzania, Malawi, Swaziland, South Africa, the UK and Canada and presented and discussed their work.
From this, people put together a range of material for the journal and the blog linked to the special edition. Some of this material took the form of academic articles; there are also podcasts, photographs, pieces of music, images and poetry.
This allowed us to present creative and academic work in a format that was more accessible to those with digital access and moved beyond academic journals. After all, part of what the field is concerned with is maintaining critical, intellectual rigour while making information available to people in a number of ways. In doing this the field tries to break down some of the barriers that prevent people from sharing work or ideas.
There is more to come for the Medical and Health Humanities field in Africa. A group called the Medical and Health Humanities Africa networkhas been established. CODESRIA, the Council for the Development of Social Science Research in Africa, among others, has been drawn into discussions about growing the field’s networks on the continent. The second conference organised by the Malawi Medical Humanities Network will be held in Zomba, Malawi in August and a workshop in Johannesburg in March called State of Dis-ease will continue these exciting new conversations.
-Carla Tsampiras; Senior Lecturer in Medical Humanities, University of Cape Town
-Nolwazi Mkhwanazi; Senior researcher, Wits Institute for Social and Economic Research, University of the Witwatersrand
Organic In The Concrete Jungle
Geologist-turned-entrepreneur Brad Meiring uses an online delivery service in South Africa to get people to reconnect with their food.
Pile of empty wooden crates are ready for packaging, stacked up in a scullery. As the morning mist dissipates in the lawn, a pick-up van parks near the doorway.
There is an enterprising hustle and bustle between the van and the kitchen door. Men hurriedly create an impromptu conveyor belt offloading supplies from the van into the scullery.
The daily work rituals progress, and Brad Meiring, the 37-year-old founder of Munching Mongoose, casually engages in a conversation with the supplier.
From starting his business with 12 boxes, the online delivery service established in 2014, now dispatches about 150 boxes a week in Johannesburg.
Meiring sells customizable grocery boxes filled with organic produce, from fruits and vegetables to staple foods such as milk, cheese and breads. His business has a turnover of R450,000 ($31, 241) a month.
It was a conversation at a dinner with a friend in Nelspruit that planted the seed of opportunity. It turned him from geologist to entrepreneur.
As a geologist, he had been against the commercial exploitation of the environment.
“In geology, it is about how we can put a big hole in the ground to make us some money. That didn’t sit well with me and that is why I geared away [from it]. You are very much in touch with the ground and so is farming. I suppose you could link the two. When I shifted from geology, I tried to get into the environmental field using that knowledge,” the entrepreneur says.
Operating from a pomegranate farm, in the picturesque rural area of Muldersdrift, 27 kilometers from Johannesburg, the calm of the place is an obvious contrast to the hustle and bustle in the economic hub of big city Johannesburg.
It is a contrast he sees changing with time, as people have become more open-minded to experimenting with healthier options, his packaged organic food one of them.
“There are guys farming on rooftops, finding small plots of land in and amongst the buildings. There are guys using vertical walls to grow so they are turning the concrete jungle into farm scapes.
“There is a whole farm movement where guys are just maximizing the space they have to make their produce. As the awareness grows, hopefully, the fast food lines will also start considering the produce they use to make food. This will give more options,” he says.
A grey hatchback pulls into the driveway; we look on as a man unloads two bags from his boot and makes his way to the kitchen.
“We have built amazing relationships with the suppliers and farmers. The deeper you go, you can just see the networks of guys who are just hustling. There is value far beyond what we see in the shops,” he says.
Focused on delivering boxes in Johannesburg, the business has customers varying from the high-end to the health-conscious.
According to Meiring, high-end consumers are more accustomed to purchasing the bigger boxes because it is in line with their budget whereas health-conscious and dual-income families opt for more affordable options.
Grocery boxes range from R499 ($34) to R799 ($55) with various nutritional options.
Through his Munching Mongoose business model, he aims to create a difference.
“For us, where the real passion lies is being able to play our small part in getting families around the table. Getting people to reconnect with the food they eat. More importantly, it is to build relationships. It sounds silly, but if you ask anyone, some of their best memories are around the table,” he says.
Nudged by his love for family, relationships have become a core value he practices in the corporate space.
“Relationships are the business. Without them and without the people doing the hard graft and toiling, we wouldn’t have a business. I am not a farmer or artisan. Even down to the team; we built it slowly,” he says.
“The lucrative nature is based on who is behind the wheel and how you can run it as a business. The opportunities are big, and there is a big global mind-shift towards being more environmentally conscious, towards health and to understanding relationships and where your food comes from. There are a lot more people questioning and not just accepting what is given to them on the shelves. You can’t just greenwash.”
His subscription-based model is an experience different from grocery-shopping.
“Organic produce is still expensive. Small farmers have limited access to resources, and that goes to the economies of scale,” he says.
This results in higher costs to sell and purchase naturally-produced foods and so it’s expensive and inaccessible to the lower-income markets.
Although the organic food market mostly targets high-end consumers who have the means, every business should be open to trends in various markets.
Meiring argues that African markets differ from developed regions in the lack of infrastructure and access to support from local government.
“Digital adaptions for marketing and transactions between the consumer is a priority,” says Sigqibo Nonhonho, who manages the digital aspects of Munching Mongoose.
“There are a lot of systems that you have to come to grips with. Being able to understand the back-end of the website, what the customers will be seeing and the numbers (interactions) behind that.
“Having an IT background allowed me to understand that quicker. In IT, being organized is something that you to do, and in food, you have to do that too. In food, there is more freedom, you can be more creative and design your solutions,” Nonhonho says.
Gracious Nhloko, who has taken it upon herself to farm organic produce in her free time, administers the daily operations, and she says Wednesdays are her favorite day of the week because suppliers are moving in and out as they deliver the fresh produce.
“When different suppliers are bringing their fresh produce, just looking at those vegetables, sometimes, looking at the sizes of some of the produce is so amazing… It just brings me joy,” she says.
Meiring says that defining organic in South Africa is a grey area that has not been legislated properly.
At times, he has to cross-check that suppliers are being truthful.
The term ‘organic’ is often used in a broader sense and that is a complex issue that needs to be dealt with caution.
“In fact, often people have a negative perception when they see something marketed as organic because it is considered as someone just using [the label] organic,” he says.
Moving at a gradual pace towards expansion, for Meiring, ensures that quality and sustainability remain beneficial for all parties involved, and sometimes this means problem-solving is done on the spot.
“We are looking at other product lines. Adopting a model for corporate and office spaces and bringing in something for families… There are the meal kits for companies that are doing well globally but there are good examples in South Africa.
“I love the journey of starting people back in the kitchen, and we hope that we can evolve people’s mind-sets to get them to want the fresh produce. It is about expansion in a way that is, excusing the pun, organic,” he says.
“Being organic in the concrete jungle is a thing and it is growing… People are changing, and others are saying they don’t want to lawn anymore and will [instead] plant a vegetable garden.”
In due time, Meiring’s wooden crates will cross the oceans to New Zealand as promising global ventures are also under way.
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