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‘No One Loved Me – Not Even God’

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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

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Tasty Vegan Options: Consumed By Healthy Eating

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The restaurant market still hungers for healthy options. This entrepreneur is feeding that need, serving earth-conscious customers and gym junkies.  

Her desperation for a healthy meal fueled the fire for business.

Leigh Klapthor, 31, couldn’t find enough eateries that sold healthy food that was not bland, so decided to start her own.

“It is no fun to go out with friends and you are always the girl with the green salad,” she says.

“I wanted to find a way where being healthy is not such a chore and I also wanted for it to be affordable.”

Klapthor, who dropped out of a course in marketing communications at the University of Johannesburg, ditched a job in corporate marketing to pursue her passion for food.

A patron at Sprout Café. Picture: Gypseenia Lion

In 2017, she started Sprout Café at the Stoneridge Centre in Edenvale in Johannesburg with a loan she received from her husband’s business and money that was given to them as a wedding gift.

“Everybody underestimates what everything will end up costing [when starting a new business]. In my mind, I thought R150,000 ($10,588) would work. I thought I would get my shop fitting and everything done and in the first month we would be able to pay salaries with the money we make,” says Klapthor.

But she soon realized the unforeseen challenges faced by many entrepreneurs. She had to eventually pump in a capital of R350,000 ($24,706) to start the venture.

“So I had a couple of life lessons at the beginning. I had to end up using our savings but I didn’t mind having to do that because I trusted and believed in the vision.” 

But though she did, the banks did not because they often declined all her loan applications.

 “I think there are so many young black and enthusiastic individuals that have brilliant ideas and vision but the investment capital is not there. Though I do not have the capital as well to assist them, I would say keep going because the vision is greater,” Klapthor says.

Sprout Café offers health food, light meals, vegan food, and vegetarian and ketogenic diet food.

With her corporate marketing skills, she advertised her food on social media and gained a lot of traction.

“I want to create food on Instagram and people are like, ‘oh my God, I want to eat that’ and when they come into the store, it is the same deliverable they receive,” she says.

Sprout Café turns over R3 million ($211,677) annually and has 10 employees. 

After only two years of business, she has recently opened a second branch in the heart of the busy Moove Motion Fitness Club in Sunninghill in Johannesburg.

“There are people that are on specific diets and there is no one that is giving these people food. There is no one that is saying, vegan people want to be healthy too. They are making a conscious decision to preserve the environment and preserve their health and they are making these decisions but there is no one that is there to accommodate them.”

Klapthor says that the world is moving towards a plant-based lifestyle and she believes that many have recently caught on to that idea recently. 

Trend translator Bronwyn Williams of Flux Trends,  reiterates Klapthor’s views on how the world is adopting healthier habits. She believes that Generation Z is choosing good, clean fun the most.

“Yes, South Africa is not exempt from the global movement towards more locally-sourced and earth-friendly products and packaging,” Williams says.

However, Williams believes that because 64.2% of the South African population still lives in poverty, clean and organic food still remains costly for the majority of people.

“That said, unfortunately, earth-friendly consumer options remain a luxury that only the upper middle class can really afford to support and enjoy… certified organic, eco-friendly products tend to cost far more—up to 40% more than ‘regular’ packaged produce, it would be disingenuous to say that what the market wants is locally-sourced, earth-first produce when the majority of South Africans are struggling just to put any food on the table,” Williams says.

‘Every day, you should be able to eat a Sprout meal without having to feel any kind of guilt and shame,’ Leigh Klapthor says. Picture: Gypseenia Lion

Though Klapthor knows more people are opening healthy-eating establishments because they see that it is a trend, she believes that they need to be in touch with the reality of an ordinary person’s life and consider the cost implications.

“You can’t charge someone R150 ($10.59) for a Beyond Meat burger and expect her to come back tomorrow for the same burger. People are tight with their money and they work hard for it, they do not want to let go, for instance, of R500 ($35.29) in three days,” Klapthor says.

“We want to provide a healthy lifestyle, something that is consistent and that people can live through, and not just a treat-themselves-to at the end of the month. Every day, you should be able to eat a Sprout meal without having to feel any kind of guilt and shame.”

Obviously, it is a concept that has worked and keeps her business healthy as well.

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Young women in Soweto, South Africa, say healthy living is hard. Here’s why

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Data from South Africa has shown that over two thirds of young women are overweight and obese. This predisposes them to non-communicable diseases such as diabetes and hypertension. Most women are not exercising enough, and consumption of processed and calorie-dense foods and high amounts of sugar is common.

It was this knowledge that sparked the establishment of the Health Life Trajectories Initiative. It’s being run in South Africa, India, China and Canada and aims to provide interventions that can help young women stay healthy before, during and after pregnancy.

In South Africa, this randomised controlled trial will provide one-on-one support as well as peer group sessions to over 6000 young women. The idea is provide them with information, and to help them set and maintain goals for healthier lifestyles.

Researchers from the Medical Research Council and Wits University’s Developmental Pathways for Health Research Unit are running the South African arm of the study. We wanted to start by better understanding our target population – that is, young women aged between 18 and 24 living in Soweto.

READ MORE | Local Solutions Can Boost Healthier Food Choices In South Africa

Soweto is a large, densely populated urban township which comprises one third of Johannesburg’s population. Soweto is becoming rapidly urbanised, but the majority of people are still very poor and struggle to provide food for their families.

We conducted a series of focus group discussions and in depth interviews to unravel health behaviours, barriers and facilitators to wellbeing and health with young women from Soweto who had not yet had a child. We also asked them about what sorts of interventions they’d prefer to support and guide them.

The women offered important insights that showed it’s not enough to simply promote healthy eating and exercise without considering the very real environmental and structural constraints present in South Africa.

Barriers to healthy choices

The 29 participants spoke about many different facets of health. These included happiness and mental wellbeing, faith, social support, body image, and lifestyle behaviours.

They identified many barriers to healthy eating, among them the cost of and access to healthy food options. Some women also said they had little access to exercise facilities such as gyms and were afraid to exercise on the streets because they feared being assaulted or harassed. One woman said:

No, I don’t feel safe because we have drug addicts, traffic, women trafficking: it’s not safe for us to walk in the streets.

The women we interviewed painted a picture of an environment in which healthy behaviours are difficult to implement or sustain. One said:

Small businesses that are opening up in my community and they all sell fries, literally they just all sell fries…

Women told us that cheap and unhealthy fast foods are on every street corner: “bunny chow” – hollowed out bread stuffed with curry – vetkoek (a fried dough bread stuffed with different fillings) and fried chips are affordable and available within a few steps of most houses. As a result, women did not want to go out of their way to purchase healthier, more expensive foods.

Our interviewees also didn’t feel able to demand that healthier food be bought for their homes, because many were not contributing financially and were therefore not in a position to control food purchases. Women reported being financially dependant on relatives and male partners.

READ MORE | New Ways Of Thinking On Health, Arts And Humanities Are Emerging In Africa

Exercise

They also said that opportunities for physical activity were neither provided nor prioritised for women in Soweto. Some women said that a lack of facilities made it difficult for them to participate in any exercise, as they did not have access to gyms or fields to exercise.

Other women told us that there were gyms, sports grounds, parks, and even free aerobics classes at community halls in their area. However these facilities often get vandalised quickly, and can no longer be used. More importantly, they didn’t feel safe enough to exercise on the streets, perhaps by jogging or running. They also felt unsafe walking around in leggings or tights. Women were fearful of human trafficking, sexual assault, and violence – very real issues in this community.

Crucially, our research found that young women did not see obesity as a sufficient reason to change their behaviour. But they said they would be motivated to exercise and eat better if they were diagnosed with a non-communicable disease like diabetes.

This suggests that obesity has become normalised in South Africa – and this needs to be addressed.

Policy interventions

These findings are now being worked into our interventions, and we are cognisant of the contextual realities that may affect young women’s ability to change their lifestyles. We hope that this research, along with whatever findings emerge from our interventions, will inform policy makers and motivate them to implement necessary changes in this community.

Women in Soweto and in South Africa in general need support to live healthier lifestyles. This support needs to come from policy makers. If South Africa does not step up and support young women by providing them with access to safe spaces and affordable healthier foods, and by controlling the oversupply of unhealthy options, the country may not be able to curb its ever increasing rise in obesity and related non-communicable diseases.

-Alessandra Prioreschi: Associate Director and Researcher at the Developmental Pathways for Health Research Unit (DPHRU), University of the Witwatersrand

The Conversation

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Measles: Should Vaccinations Be Compulsory?

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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.

Anti-vaxxer threat

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.

Precedents

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

-The Conversation

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