The great work I saw in South Africa—A travel log by UNAIDS Goodwill Ambassador Kenneth Cole

14 June 2017

Monday, 6 March 2017

Arriving in Durban

I’ve just arrived in Durban, South Africa, on my first official mission as a UNAIDS Goodwill Ambassador to find out more about UNAIDS’ work. Last year at the High-Level Meeting on Ending AIDS, UNAIDS inspired a global commitment to end AIDS, and I am here to find out what we need to do to achieve this ambitious goal. I’m looking forward to talking to people living with HIV, their families and friends, and to health workers, politicians, scientists and students, to see what challenges we need to overcome.

Tuesday, 7 March

Phoenix township

An early start to get to our first stop, Phoenix, a township just outside Durban, and a visit to the Operation Sukuma Sakhe war room (sukuma sakhe is Zulu for rise up and build).

Despite the early hour, the war room, a prefabricated hut at the back of the local clinic, is baking hot and packed with community workers. The newly elected ward councillor introduce the stark challenges he and his community face—high unemployment, poverty, alcohol and substance abuse, inadequate housing and sanitation, gender-based violence and crime—all factors that contribute to high rates of HIV and tuberculosis (TB).

Community caregivers profile the needs of every household, checking their health, education and financial and nutritional status. Back at the war room the reports are used to direct government services to where they are most needed. The community caregivers offer tests for HIV, TB, malnutrition and diabetes, carry out health education and awareness, check school attendance, deliver medicines and find people who have stopped taking treatment or missed appointments.

From the war room, we drive a short distance then set out on foot into the heart of the community. Less than a minute from the main road, the breeze-block houses give way to wooden shacks and makeshift tents made from old advertising hoardings. We walk single file down a narrow path, stepping gingerly over streams, to get to the homestead of Gogo Ntuli (Gogo means grandmother in Zulu). Gogo is more than 80 years old and her state pension supports her daughter, grandchildren and great-grandchildren—four generations living under the same roof. Gogo fed and looked after the councillor as a child, along with other children whose parents were working or who had been orphaned. She inspired him to become a politician and mobilize his community to rise up and build, to come together to overcome the many challenges they face.

I am so impressed by the councillor, war room committee members and community caregivers and how they work together to try and resolve the incredibly complex social issues that drive HIV and TB, which affect so many of the community.

Student conversations, Durban University of Technology

Young people in South Africa, especially young women, are at higher risk of HIV, so I was excited about the opportunity I had to chat with students in the Departments of Fashion, Textiles and Business at Durban University of Technology. We talked about the myths and truths around HIV and why championing the AIDS response has been an integral part of my career.

Working in the fashion industry since the beginning of the epidemic, AIDS became personal very quickly, with many of my friends and colleagues affected by HIV. I wanted to use my voice to speak out against HIV stigma and to urge investment in AIDS research. I wanted people to think about not what was on their bodies, but what was in their minds.  

The students’ line of questioning was interesting and often unexpected. HIV is a real concern and even in tertiary education they asked basic questions about HIV, its treatment and prevention. They are clearly concerned about the impact that AIDS has on their lives and are struggling to balance their own personal goals, while living in an era where AIDS is not yet over. I realize there is still so much to be done.  

Wednesday, 8 March

Responding to tuberculosis at King Dinuzulu Hospital

King Dinuzulu Hospital is a specialist centre for diagnosing and treating drug-resistant TB. Globally, TB is the leading cause of illness and death among people living with HIV, despite being preventable and mostly curable. South Africa has the highest burden of HIV-associated TB in the world and a rapidly growing epidemic of drug-resistant TB.

Most worrying is the epidemic of extensively drug-resistant TB (XDR-TB). This is TB that is resistant to most first- and second-line TB medicines. It can take up to two years of hospital treatment with painful daily injections and the risk of serious side-effects, such as deafness and kidney failure. Until recently, only about one in four patients with XDR-TB were cured. Two new medicines have been approved for TB treatment, the first in more than 50 years, which bring hope to the many thousands of South Africans developing drug-resistant TB every year, the majority of whom are also living with HIV.

Speaking through stifling but essential TB protection masks to the staff and people on treatment, I was stunned by the isolation and stigmatization that people with drug-resistant TB face. One woman, clearly still distressed by the experience, described how they came to her home wearing gloves and masks to inform her of her diagnosis and bring her to the hospital. She was also lucky, she said, as her family were supportive and she was among the first to get access to the new TB medicines. She was hoping to go home as soon as her TB became noninfectious.

Young children are particularly vulnerable to TB and the most severe form, TB meningitis. However, the hospital specializes in treating childhood TB and even has a dedicated school to make sure they don’t miss out on education during their long treatment.

We have worked so hard to keep people with HIV alive, only for them to die of TB. I’m astonished that there is so little investment in TB research when it continues to affect millions every year. It is clear that we cannot end AIDS until we can control TB.

Reflecting on stigma in Gugu Dlamini Park

At noon, we visit Gugu Dlamini Park in downtown Durban. A massive red ribbon dominates the landscape as a constant reminder of the dangers of HIV-related stigma. The ribbon is a monument to Gugu Dlamini, one of the first South Africans to publicly disclose her HIV status, in December 1998. Shortly afterwards she was stoned to death for bringing disgrace to her community. Her tragic death inspired the Treatment Action Campaign’s famous HIV Positive t-shirts, and signalled the start of a change in attitudes to people living with HIV. We have come a long way since then, but people living with HIV or TB still face stigma in their daily lives, and we need to continue to work to break down barriers based on fear and ignorance.

Science and lunch at the Centre for the AIDS Programme of Research in South Africa

The Centre for the AIDS Programme of Research in South Africa (CAPRISA), University of KwaZulu-Natal, was created in 2001 by the formidable team of Professors Salim and Quarraisha Abdool Karim, two of the world’s leading HIV scientists. CAPRISA, a UNAIDS collaborating centre, focuses on better understanding HIV infection and prevention.

An estimated 2000 young women aged 15–24 become infected with HIV in South Africa every week. Quarraisha presents the cutting-edge research being led by her amazing team, who are passionate about developing HIV prevention technologies that work for adolescent girls and young women. She stresses that one of the main challenges is that we are failing to reach men with HIV testing and treatment services. Getting men living with HIV onto effective HIV treatment would greatly reduce the risk of onward transmission of HIV.

A night visit to the TB/HIV Care Association

As the sun sets, we head to the TB/HIV Care Association to meet another formidable team, the peer educators and staff of their sex-worker outreach project. We are welcomed with rousing songs, but the words of these songs are far from traditional. One song promotes condoms for safer sex and another, That’s Why I’m a Sex Worker, expresses solidarity with the sex workers they work with every day.

The staff and peer educators work in shifts from mobile clinics through the night to visit sex-workers on the streets or in brothels. Most of the peers are sex workers themselves. They offer safe, confidential and nonjudgemental HIV prevention and treatment services to their peers as well as advice on how to deal with violence and access legal services. Sex workers often face police harassment, discrimination by health-care workers and high rates of HIV.

What is truly incredible is the trust that they have built with the sex-worker community, their clients and the brothel owners. This trusting relationship enables us to accompany them on their routine visits to brothels to demonstrate proper condom use, distribute condoms and offer HIV testing. During our visit the peer educators explain the different reasons they chose sex work—some to escape violence, neglect and abusive relationships, others to raise enough money to give their families a good start in life.

The work and dedication of the TB/HIV care team and their passion for change is amazing and something I will never forget.

Thursday, 9 March

Revisiting Mothers to Mothers

This is my second visit to Mothers to Mothers (M2M), a programme that encourages pregnant women to test for HIV and, if HIV-positive, get onto treatment. It can be an overwhelming experience. The M2M mentor mothers, who are living with HIV, have been trained by M2M. They provide support and advice to pregnant women living with HIV to make sure that their babies remain HIV-negative throughout pregnancy and breastfeeding and that they themselves remain healthy and well.

In 2004, during my first visit, tens of thousands of babies were being born with HIV; many did not see their first birthday and many of those that did survive were orphaned. It is amazing, 12 years later, to see such transformation. New HIV infections among children 0–14 years old have dropped dramatically, from 32 000 in 2009 to 5100 in 2015 in South Africa—a strong sign that the country is well on its way to eliminating mother-to-child transmission of HIV.

Visiting one young mother brings home to me the challenges of being unemployed and raising a child alone. It shows the importance of the support that M2M provides. Their stories give me incredible hope that we can look forward to an AIDS-free generation soon.

Final reflections

It’s time to leave South Africa after a rollercoaster three days.

This trip has given me a better understanding of the forces that stand in the way of ending AIDS. Continued stigma and discrimination, poverty and marginalization, rising resistance to medicines, people being left behind by inadequate health, education and social services, to name but a few.

More importantly, however, it reaffirmed what works—the power of community, collaboration, inclusion and innovation. We have effective tools to prevent, diagnose and treat TB and HIV, but we need to get them to everyone who needs them. At the same time, we need continued investment in research for better medicines, diagnostics and vaccines that meet everyone’s needs.

There are more than 3.4 million people on HIV treatment in South Africa. They say that if South Africa can succeed in changing the trajectory of AIDS, then the world can too. While there are clearly real challenges to overcome, the great work I saw and experienced in South Africa astounded me and will inspire my contribution to ending the AIDS epidemic and my work as a Goodwill Ambassador for UNAIDS.