What are we to make of the ADVANCE trial results?

By Dr Michelle Moorhouse and Dr Simiso Sokhela

With over 5 million South Africans on life-saving antiretroviral therapy, making treatment safer, more potent and cheaper is a priority, especially in the context of rising drug resistance across the country. However, antiretrovirals are developed largely in richer countries, while Southern African populations, with high levels of TB, hepatitis B, and a large proportion of women desiring pregnancy, are not represented in the studies.

The 48-week results of ADVANCE, a ground-breaking HIV treatment study conducted by Ezintsha, a division of the Wits Reproductive Health and HIV Institute, was presented at the prestigious IAS conference in Mexico on 24 July 2019, and published in a top medical journal, the New England Journal of Medicine.

ADVANCE assessed two newer antiretrovirals, dolutegravir and tenofovir alafenamide fumarate (TAF), that are now used in richer countries, in people with HIV starting antiretroviral therapy (ART), against what we currently use in South Africa. These two new drugs (TAF is not even registered in South Africa, awaiting a much-delayed licence from the South African Health Products Regulatory Authority (SAHPRA)) both have toxicity benefits over the drugs they replace. They are cheaper to make and give us a smaller tablet size, which has other cost benefits beyond the cost of production. Dolutegravir appears almost unbreakable, in terms of resistance.

The following three regimens were compared in ADVANCE:

  • Dolutegravir, TAF, FTC
  • Dolutegravir, TDF, FTC (A regimen being introduced in South Africa.)
  • Efavirenz, TDF, FTC (Currently the most commonly used regimen in South Africa.)

All three regimens investigated in ADVANCE performed extremely well, with high rates of viral suppression, very little resistance, and few people stopping their study regimen as a result of side effects. In fact, participants stopped their study medication more as a result of personal or social factors, rather than side effects – older people and those employed had the best outcomes. Almost everyone “failing” their treatment, that is where their viral load starts going up, were able to control their virus again with a simple adherence intervention, whatever drug regimen they took.

Even so, there were some differences in side effects across the study arms. We saw an increase in weight in the dolutegravir-containing arms of the study, consistent with recent reports of weight gain associated with this class of drug. The weight gain in ADVANCE was worse in women; those also receiving TAF; and those with more advanced HIV (lower CD4 counts and higher viral loads).

At this stage, the potential mechanisms for the weight gain are poorly understood. In ADVANCE, weight gain did not appear to be associated with the things that worry us with people being overweight, such as changes in blood pressure, cholesterol or blood sugar, but it may be too early to see these effects, as they have only been followed for 48 weeks. We will follow the patients further, hopefully for the next few years, to see if the weight gain causes metabolic problems. It is complex to understand the implications of these findings, especially as we are facing an epidemic of obesity in South Africa, irrespective of HIV status.

The ADVANCE study and its results are important for a number of reasons. When newer antiretrovirals (ARVs) such as dolutegravir and TAF are developed, most of the research is conducted in richer countries, with studies that recruit mainly white middle-aged men – this is not representative of the majority of people with HIV who will ultimately be treated with these drugs. The ADVANCE population was 99% black, almost 60% women and the average age was 32 years, which reflects the demographics in Southern Africa more accurately, and so the results are very relevant to large HIV treatment programmes such as ours.

Once new ARVs are approved, little is known about their safety in pregnancy; whether they can be used with drugs used to treat TB; effectiveness in everyday people with HIV – all of which we consider to be the “real world” effectiveness of ARVs. ADVANCE did not exclude people with advanced HIV or other common illnesses; participants who developed TB or became pregnant were allowed to stay in the study and so the data gleaned from ADVANCE helps us understand more fully the utility of newer ARVs such as dolutegravir and TAF in these groups. In ADVANCE, most participants were given isoniazid to prevent TB, and as a result we saw hardly any new TB in the study, confirming the effectiveness of TB preventive therapy.

Because of concerns about neural tube defects, a severe birth defect that is often severely disabling or fatal, that were seen with women conceiving on dolutegravir in Botswana, we have been monitoring women who become pregnant and their infants very carefully in ADVANCE. The number of pregnancies is too small to be meaningful but to date, there have been no neural tube defects in ADVANCE.

Although ADVANCE took place in inner-city Johannesburg only, we recruited a very diverse African population, with 60% of study participants being from across South Africa and the remaining 40% from other African countries, mainly Zimbabwe. This makes the results of ADVANCE applicable to other countries in sub-Saharan Africa, where dolutegravir is already being rolled out or where rollout is imminent, as in South Africa. This is important, as there is a paucity of data from randomised studies of the regimens investigated in ADVANCE in African populations. On account of this, the results of ADVANCE have been shared with global bodies including SAHPRA, World Health Organization (WHO), the US Food and Drug Agency (FDA) and guideline committees to inform their processes are guided by data relevant to populations being treated.

Another unique feature of ADVANCE is the fact that it was designed by a consortium of leading international HIV clinicians and researchers, with input from global bodies such as the WHO, Clinton Health Access Initiative, as well as treatment advocates and activist groups including HIV i-Base, AfroCAB, the Treatment Action Campaign, and the South African government. It was funded by USAID, Unitaid, the South African Medical Research Council, and study drugs were donated by Gilead Sciences and ViiV Healthcare.


For us, the key message is that South African patients and healthcare workers can achieve amazing results simply by following Department of Health guidelines – sort out the adherence when the viral load goes up, and use TB prevention. Weight gain is an issue with more data needed, but the guidelines recommend lifestyle changes, something all of us, whatever our HIV status, should be doing.

Both Dr Moorhouse and Dr Sokhela are from Ezintsha, a division of the Wits Reproductive Health and HIV institute.

AIDS2018: G23 women draw a line in the sand

This is a statement read out by the group of 23 women as Michel Sidibe took to the stage at the opening plenary.

“…a political struggle that does not have women at the heart of it, above it, below it, and within it is not struggle at all.” – Arundhati Roy

We are the group of 23 women who dared to step into the light, to place ourselves at the heart of it, below it and within it. We dared to put pen to paper and say we will not keep quiet, that we will speak for those who have spoken and were silenced and for those who were too afraid to go public.

We have continued to speak out, we have met, written, consulted, spoken, begged, asked and spoken some more…everything we do is in solidarity with women, women who have for too long been forced to stay in the dark. We have stepped into the light.

We have been disappointed many, many times, but we have been in the struggle long enough to know this is a marathon, not a sprint and that victory is certain.

We feel strongly that there is a lack of respect, that individuals such as UNAIDS Chief Michel Sidibe, who has been an enabler and protector of sexual harassment, continues to be invited into women’s spaces, into spaces we occupy and fought hard to be in. That him being given platforms, is a secondary violation.

We hold no brief, we have no political ambitions, there is no monetary reward, we are simply a group of individual women who are speaking for ourselves, our daughters, our sisters, our mothers, our Comrades…who have for too long been silenced because we know we are up against a patriarchy machine which is well oiled and well-funded.

We refuse to hide behind structures and organisations to symbolically show other women we can show up for each other without asking for permission or a mandate.

We have been stripped of our dignity and power, but again we rise!

We do not ask for much:

  1. We call on donors to continue supporting us and our struggle. We have heard too many stories of donors and those who sign the cheques using their power to bully and threaten those who dare challenge the power and position of people like Michel Sidibe.
  2. We appeal to Michel Sidibe to step away from his scripted, spun, rehearsed propaganda machine and for once to look us in the eye and speak the truth. No more tears, let’s speak honestly and let’s make the difficult decisions.

Today we draw a panty line…not to be sensational, but because we have drawn a symbolic line in the sand. The panties symbolize the continuous violence against women and our struggles. They violate us daily, we continue to bleed.

We also note the information revealed by our sister at AIDS-Free World Paula Donovan, showing that we are up against a big, well paid machine. That we are the cannon fodder as big men and their women battle to cover their tracks. We will not be silenced, the AIDS struggle will not be sacrificed.

AIDS 2018 in Amsterdam will be remembered as a moment where women drew a line in the sand. It will be our #MeToo #UsToo moment.

We invite all allies of women, all believers that women rights are human rights to show your support at this conference, to add your voice. Each time you speak or present in a session, say one thing, beam it on the screen: “I Believe Her! Silence is violence! Time for change is now!”

An attack on women’s bodies is an attack on the AIDS struggle.

Signed by Group of 23 Women:

Vuyiseka Dubula, Activist, former TAC Secretary General, South Africa

Nomfundo Eland, Feminist Activist, South Africa

Shereen Essof, Feminist Activist, International

Dr Tlaleng Mofokeng, SHRR Expert, South Africa

Sisonke Msimang, Writer, South Africa & Australia

Sipho Mthati, Activist, Former TAC Secretary General, South Africa

Dr Lydia Buzaalirwa, Activist, Uganda

Aisha Kangere, Activist, Uganda

Martha Tholanah, Feminist, Zimbabwe

Seehaam Samaai, African Feminist Lawyer, South Africa

Alice Kayongo, Feminist Activist, Uganda

Lucinda van den Heever, African Feminist and Queer activist, South Africa

Winnie Muiisa, Activist, Uganda

Prima Kwangala, Advocate, Uganda

Polly Clayden, United Kingdom

Dr Francoise Louis, Activist, South Africa

Irene Omoding, Activist, Uganda

Oluwakemi Gbadamosi, Activist, Uganda

Peace Nyangoma, Activist, Uganda

Vuyokazi Matiso-Gonyela, Feminist, South Africa

Yvette Raphael, Feminist, South Africa

Dr Cecilia Natembo, Activist, Uganda

Salome Ssekakoni, Activist, USA

Lebo Ramofoko, Activist, South Africa

Steve Letsike, Activist, South Africa

Sharon Ekambaram, Feminist, South Africa

For interviews, pls contact via Whatsapp:

Vuyiseka Dubula +27 82 763 3005

Vuyokazi Gonyela +27 73 636 1373

Yvette Raphael +27 76 612 7704





AIDS2018: Tangerine, a Thai transgender programme that works

Almost everyone in the HIV world is talking about providing services to key populations – a ground-breaking project in Thailand is providing an example of how to go about it. They kindly answered Spotlight’s questions.

 Q: What is the Tangerine project and how does it work?

A: The “Tangerine” Community Health Center is the first transgender-specific sexual health and wellbeing clinic in Thailand and in Asia. Launched in November 2015, Tangerine offers fee-based healthcare services that is situated in an Anonymous Clinic at the largest HIV testing facility in Bangkok at the Thai Red Cross AIDS Research Centre (TRCARC).

The transgender healthcare services include gender affirmative hormone treatment (GAHT) and other sexual health services covering HIV testing and counseling, testing and treatment for other sexually transmitted infections, vaccination for viral hepatitis A, hepatitis B and human papillomavirus (HPV). In addition, the clinic offers antiretroviral treatment (ART), post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP).

Q: What practical steps do you take to create a welcoming environment for trans people?

A: TRCARC conducted a series of transgender community consultations with diverse members of transgender communities, including transgender advocates, healthcare providers, those working within the fashion industry, as well as transgender sex workers. Through the extensive consultations, TRCARC understood the barriers and the unmet health needs. The consultations revealed that transgender people faced obstacles in accessing hormone level monitoring and treatment, the most basic health services that they regularly require to affirm their gender identity. The services available in general are not transgender-friendly, or even worse are provided outside the medical profession. Hormone treatment services were identified as the entry point to make the clinic attractive to its target populations. At the end of the consultation, the name “Tangerine”, the slogan “Where transition fulfils identities” and the logo were mutually adopted.

After the consultation, TRCARC Director Professor Praphan Phanuphak supported all healthcare staff to attend the training on “gender sensitization in healthcare settings” before providing direct services to transgender clients. This created the learning platform between healthcare providers and transgender communities. At the same time, the Tangerine protocol was developed by Dr. Frits van Griensven, which was adapted from international guidelines in order to make it appropriate within the local Thai context. This included hormone supplies, hormone therapy monitoring, and interpretation of laboratory results. Data collection forms were also designed to respond to gender identity, sexual orientation and sex assigned at birth.

Tangerine officially opened in late November 2015 and became the first clinic catering specifically to the needs of transgender people in Bangkok. Funding from the United States Agency for International Development (USAID) through the LINKAGES Thailand Project covered the costs of the community consultations, certain healthcare staff, communications, trainings and research studies conducted to specifically address sexual health concerns among transgender people.

Q: What positive outcomes have you seen?

A: From November 2015 to December 2017, there were 1 184 transgender individuals receiving services from Tangerine with 4 501 visits. Of those, 972 were transgender women (TGW) and 212 were transgender men (TGM). Of those TGW, median (IQR) age was 25.4 (22.5-30) years, 55% had education below bachelor’s degree, 25% were unemployed, 56% used alcohol, and 10% used amphetamine-type stimulants. The HIV testing rate among TGW was 91%, with 12% HIV prevalence. 80% were successfully initiated on antiretroviral therapy.

Compared to clients not accessing GAHT services, GAHT service clients were more likely to re-visit the clinic (50% vs. 34%, p<0.001), had higher rates of repeat HIV testing (32% vs. 25%, p=0.019), repeat syphilis testing (14% vs. 9%, p=0.026), PrEP uptake (10% vs. 6%, p=0.015), and use of other sexual health services, including hepatitis B testing/vaccination and sexually transmitted infection treatment (50% vs. 34%, p<0.001).

Recently, Tangerine has intensively utilized transgender influencers as an online-to-offline social media strategy to better reach transgender individuals at high risk for HIV infection, including those who are young and first-time HIV testers. From October 2017-January 2018, there were 247 (60%) transgender clients from online, out of 411 clients.

Jiratchaya Sirimongkolnawin (Mo), Miss Tiffany’s Universe 2016 and Miss International Queen 2017

“Tangerine is the clinic that addressing my several health needs, including hormone treatment. The staff here were very friendly and knowledgeable. Having the HIV testing was no longer fearful for me.” Jiratchaya Sirimongkolnawin (Mo), Miss Tiffany’s Universe 2016 and Miss International Queen 2017

Q: What lessons have you learnt from the project?

A: Some lessons learned from Tangerine are:

  • Its strong foundation was built on meaningful participation of the transgender communities at the nascent stage.
  • The clinic’s transgender staff who are members of people living with HIV and who represent vulnerable community, have also proven essential to ensuring that the clinic continues to offer accessible, transgender-friendly services and remains in close contact with the needs of the community it serves.
  • Support to enhance knowledge exchange between the trans community and health professionals is necessary to increase access to and provision of transgender health services, aiming at ending AIDS in Thailand and the region.
  • The model that integrates gender affirmative hormone services and sexual health services is feasible and effective in increasing access to and retention in HIV testing and PrEP service uptake.
  • Available data from Tangerine increases visibility of transgender people in the National AIDS Program and will be further used for the development and refinement of a comprehensive health service package and policy advocacy for transgender people in Thailand.

Tangerine also provides technical assistance to community-based organizations – Sisters Foundation in Pattaya, Mplus Foundation in Chiang Mai, and Rainbow Sky Association of Thailand in Bangkok and Songkhla- in replicating the comprehensive health service model.  The community health workers were trained on GAHT and hormone dispensing in different local settings.

Q: What advice could you give to people trying to set up similar projects in other places like e.g. South Africa?

A: In establishing a transgender health project, it is essential to engage transgender communities at the beginning including planning, implementation, and evaluation. This will help you understand their needs and truly respond to the needs of the populations you serve.

Substantial involvement from healthcare providers and leadership from your organization is also fundamental as it will be translated into policy, action and resources. The combination of transgender staff and cisgender staff will help create a learning platform in the healthcare environment and will build mutual trust between transgender communities and healthcare providers.

You may not need to have a full service package at the formation, but you will need to come up with a minimum service package, based on what the communities really need such as hormone counseling, hormone level measurement integrated with other sexual health and HIV services. You can start with a gender-responsive data collection form and gender sensitisation for healthcare team. The services can be integrated in different settings such as public health facilities, MSM-focused community-based organisations or standalone health centres, depending on resources, population size and sustainability.


AIDS2018: Humans in the Age of HIV-Condoms are not enough

By Ngqabutho Mpofu

Nosicelo Kokoti cannot be described as an adolescent woman anymore.

Nosicelo Kokoti

However, at the age of 31, she is as passionate as ever about the need to address the health issues of the youth, and adolescent girls in particular. She is a soft spoken and serious young woman. Drawing a smile from her is hard work. Almost as if she is constantly thinking about the problems at hand. As a Treatment Action Campaign (TAC) member, youth clinic health navigator and a sexual and reproductive health club facilitator, Nosicelo has extensive knowledge of her subject matter and speaks with a quiet passion in her native Xhosa.

Acknowledging the problems brought on by the lack of in depth information provided by the Life Orientation programmes in schools, specifically in Cape Town, Nosicelo and her team have worked tirelessly to speak to in-school youth about HIV and sexual and reproductive health rights and services. The fact that her team is also comprised of young people helps bridge the gap and make learners more open to speaking openly to them. However, this project operates on a small scale because of personnel and funding issues. “We speak to principals and School Governing Bodies about the nature of our work. Sometimes parents and SGBs find our work problematic because they think that we are promoting sexual relations between students, when we are addressing the realities of adolescent boys and girls.”

Nosipho says that “a lot of schools do not give us permission to speak to the learners. We currently speak to adolescents in 13 schools here in Khayelitsha. We only speak to secondary schools. We have very little time in which to speak to the adolescents as they have other commitments. We provide them with condoms and we make sexual reproductive health cool. We also speak to them about the dangers of concurrent partnerships.” Through her work, Nosipho has realized that adolescent boys are more willing to collect the condoms they provide, with an average of 60% of the condoms being collected by them.

They also speak openly about other impediments that make adolescent girls, at almost 2 000 new infections a week in South Africa a very high-risk group. As someone whose parents both died at an early age, leaving her in the care of an aunt with limited means, Nosicelo is aware of the appeal of sugar daddies, a trap she did not fall for, despite some of the seeming appeal. “Our workshops also focus on the issue of intergenerational relationships. I try make it as interactional as possible, with adolescent girls debating the issue between themselves. We try and instill the lesson that they need to be okay with what their lot in life is at that particular time and stress the need to strive to better themselves and their families in various ways, without resorting to sugar daddies.”

“Our greatest victory has been the creation of six clubs of adolescent girls. Over the years these clubs have had a steady membership, the members speak openly about the challenges they face and the members continue to be HIV negative as a result of responsible behavior. They also haven’t had STIs. If that were to change we would offer them critical support, but we sincerely hope not. The goal is to move up to ten groups within Khayelitsha.”

Finally, for Nosicelo, “as a key population as well, adolescent girls should be treated in the same way as sex workers. I strongly believe that PrEP should be readily available for (sexually active) people as young as 12, if we are to curb the scourge of HIV among the youth. Condoms are not enough…”

This article is part of a Spotlight special series on people who form part of so-called key populations.


Sexual and reproductive health rights should matter to all

By Tendai Mafuma

There is overwhelming evidence that on the African continent, even in those countries where there are liberal laws, the protection and promotion of sexual and reproductive health rights has taken a back seat. In most instances, there have been express push back against the entrenchment and/or realisation of sexual and reproductive health rights.[1] Why have sexual and reproductive rights remained controversial and contested? In this article I attempt to give one of the reasons why this is.

Largely, issues relating to sexual and reproductive health are considered taboo.

The fact that not everyone is heterosexual, or that women can and should have control over their own sexuality and reproduction has often been perceived as a threat to ‘tradition’ or to the dominant patriarchal social order. Various reasons, religious and moral, are used to justify restrictions on making sexual and reproductive health education and services available, especially sexuality education and services for youth, contraception, safe abortion and condom promotion. For the longest time, people have thought of sexual and reproductive health rights as being for others, and have been seen as seeking to promote behaviours that are contrary to the boni mores (moral convictions) of the society. These perceptions can be summarised in the most generalised way as follows:

  1. Sex is for adults, or only for married people;
  2. Reproductive health is for those suffering from infertility;
  3. Abortion is for the young girl who really should not be pregnant because she had no business having sex in the first place
  4. Sexuality rights are those who do not fit within the heteronormative space; and
  5. Sexual health is for people living with HIV or for people suffering from impotence.[2]

Largely, issues relating to sexual and reproductive health are considered taboo. Parents do not want to talk to their children about them, health practitioners think that only certain people should be talking about them, teachers do not consider it their job, and governments do not want to wade into contentious issues. We hardly talk about attitudinal barriers that people living with disabilities encounter when they try to access sexual and reproductive health services. So in the end, not enough people talk about it and because of this, there is inadequate budgeting and implementation of plans to ensure the health and well-being of people. This despite evidence of the benefits that follow from the realisation of sexual and reproductive health rights.[3] For example, various sexual and reproductive health rights concerns have direct and indirect consequences on the education, particularly of young girls. These concerns include unwanted pregnancies, sexual abuse, early marriage, and HIV/AIDS and other STIs. In 2014, a survey by Statistics South Africa indicated that 473 159 girls between the ages of 12 and 19 were not attending school.  Of these learners, 18% (85 182) said that they had fallen pregnant. It is a no brainer that comprehensive sexuality education would equip young girls to make sexual and reproductive decisions in a way that does not negative impact their education.

The truth is, when we do not buy into an idea, we are not invested in it. It is very difficult to convince people to support a cause when they do not see or understand its impact in their lives, or of those closest to them. When we think that certain causes are for “others” we do not feel the need to invest as much of our energies, money, and time because we do not think that there is any benefit. Unfortunately, that has been the case with sexual and reproductive health rights. But this position is uninformed and incorrect. Sexual and reproductive health rights are for all and they matter to all. Not only because of a human rights perspective, or because of public health arguments, but in very real and personal ways.

The recent Spotlight article by Thuthukile Mbatha and Mark Heywood starts that conversation. I want to build on that conversation here.[4]

Sexuality does not matter only to those who do not fit within the heteronormative space. Sexuality lies at the core of human life, of what makes us fully human – it is the key to our capacity to contribute positively and fully to the societies we live in. The World Health Organisation defines sexuality as “…a central aspect of being human throughout life. It encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships…”. Put simply, sexuality is deeply personal, it is about understanding the sexual feelings and attractions we feel towards others. It is not just about who we happen to have sex with.[5] Despite this, sexuality has been treated either as a ‘luxury’ or as a problem which needs to be solved. Meanwhile, it concerns everyone, personally. Whether people are single, married or living in civil partnerships, living alone or with others, sexuality will be part of their personal stories.

In the same vain, sex is definitely not only for married people. Young unmarried people have sex. So instead of burying our heads in the sand and pretending that this does not happen, we need to have constructive conversations about encouraging healthy sexual behaviours. In 2014, the University of Cape Town Gender and Health Justice Research Unit conducted a study aimed at documenting and analysing the experiences and challenges faced by health care workers providing sexual and reproductive health services to teenagers aged 12 – 15 years. The study showed that many health care workers feel uncomfortable speaking to adolescents about sexuality and sexual and reproductive health. When they do, they often adopt judgmental attitudes that reflect their own moral ideas[6] about a ‘healthy’ and ‘decent’ sexuality for teenagers. The result is that adolescents often adopt unhealthy sexual behaviours due to social pressure and poor information, and often do not seek the guidance of health care workers.[7] Healthy sexual behaviours also need to be promoted even for married people.

Reproductive health and reproductive rights are not just for those seeking to have children. It is also about young girls who will undergo puberty and need sanitary products. Reproductive rights seek to ensure that those girls will experience their menses without being discriminated against in school, bullied and excluded by others for not having sanitary products. It is about ensuring that young girls are not forced into early marriages, and that even those in marriages, can have autonomy over their bodies. They are also about ensuring that women have access to safe abortions. In South Africa, reproductive health rights place an obligation on the State to ensure that it meets the needs of all people who attend to health establishments seeking reproductive health care. The State must take reasonable, legislative and other measures, within available resources to ensure that the reproductive health care needs of all in South Africa are met.

Other than contributing to the slow pace in embracing sexual and reproductive health rights, the issues discussed above have also wormed their way into service delivery at health establishments. The result is that even where the law makes provision for sexual and reproductive health rights, and places obligations on the State to provide such services, there are still impediments to accessing sexuality education and sexual and reproductive health care services.

What we need to do is to start debunking the idea that sexual and reproductive health rights only concern other people. There needs to be intentional campaigns to highlight the importance of sexual and reproductive health rights for all. A campaign that seeks to educate all, does not seek to undermine/dispute the well documented evidence that more needs to be done for invisible, marginalised and/or key populations. It simply means that even those who are neither marginalised nor vulnerable also understand why it is of import to all Knowledge of sexual and reproductive health and access to correct information, comprehensive sexuality education, sexual and reproductive health services and basic health and medical care are also crucial for reducing infant and maternal mortality in sub-Saharan Africa.

So whilst we might sometimes think that sexual and reproductive health rights do not relate to us whatsoever, we are wrong. Just because we do not understand something does not mean we are exempt from it. Everyone should be equipped to make independent sexual and reproductive decisions. We should promote sexual relationships that are mutually respectful, free of coercion, discrimination and violence, where people can enjoy their sexuality safely. And this should matter to everyone, regardless of age, race, gender and sexual orientation.

Note: Tendai Mafuma is a Legal Researcher at SECTION27. Her work mostly centres on access to quality public healthcare.


[1]Particularly on the African continent. For example, For example, the East African Community (EAC) Council of Health Ministers in March 2008 refused to sign the EAC Sexual and Reproductive Health and Rights strategy as they felt the „rights language‟ within the document would promote homosexuality and what they described as „other undesirable sexual practices‟ in the sub-region”. This was revealed at a Regional East African Community’s Multi-Sectoral Consultative Meeting on Sexual and Reproductive Health (held in Arusha on June 25-26, 2008). This may imply that many African leaders are struggling to understand the rationale for rights-based approaches in addressing sexual and reproductive health challenges. http://www.realising-rights.org/docs/newsletter/Why%20Realizing%20Sexual%20and%20Reproductive%20Rights%20in%20Africa%20Remains%20a%20Dream.pdf. In another instance, one of the African leaders who was negotiating, on behalf of Africans, at the global level at the Commission on Status of Women 58th Session in March 2014 is said to have said this “When we allow sexual and reproductive health to include rights, as Africans we are accepting to be influenced by western culture that of accepting persons with different sexual orientations which is not in line with our African culture”. http://femnet.org/2014/07/16/sexual-and-reproductive-health-and-rights-srhr-the-african-agenda/

[2] The list is not exhaustive.

[3] Sexual and reproductive health and rights – a crucial agenda for the post-2015 framework https://www.ippf.org/sites/default/files/report_for_web.pdf. Research has shown that realisation of sexual and reproductive health rights would result in the achievement of other development goals such as education, gender equality, the economy and broader health benefits.

[4] Thuthukile Mbatha and Mark Heywood https://www.spotlightnsp.co.za/2018/05/21/sexual-and-reproductive-health-wrongs-what-do-we-need-to-do-to-get-them-right-an-activist-perspective-part-1/. I will not venture into the human rights rationale for sexual and reproductive health rights. This article sets that out very nicely.

[5] http://www.who.int/reproductivehealth/topics/sexual_health/sh_definitions/en/

[6] My own emphasis.

[7] http://www.ghjru.uct.ac.za/sites/default/files/image_tool/images/242/documents/Policy_Brief_1.pdf

Funding shock threatens leading health programme for MSM

By Marcus Low

A trend-setting programme that forms a core part of the South African government’s health services tailored to the needs of men who have sex with men (MSM) is at risk of closing much of its operations because the US government has stopped its funding. Health4Men, a programme of the Anova Health Institute and the Department of Health, was notified last week that its main funder, the United States President’s Emergency Plan for Aids Relief  (PEPFAR), working through the United States Agency for International Development (USAID), would not be giving it a new grant.

The funding cuts mean that men who have been receiving MSM-tailored care from Health4Men facilities in Cape Town and Johannesburg will have to return to normal public-sector clinics to receive care should last minute fund-raising efforts be unsuccessful. Since funding under the current grant will run out in a matter of months, the process of de-escalating the programme has already started. According to Dr Kevin Rebe, Specialist Medical Consultant at Anova, they have already started notifying clients that changes are imminent.

“It is very tragic that an effective locally developed MSM health model, which is admired internationally and has been replicated in many African countries, is coming to an end in our own country.  This is sad news for our patients and unfortunately I believe this might negatively affect their access to enabling health services,” says Rebe.

Health4Men operates two so-called centres of excellence clinics in Cape Town and Johannesburg – both set to be impacted by the funding cuts. They work in an additional nine Department of Health facilities, one in each of South Africa’s nine provinces. The funding cuts mean that they will have to withdraw their clinical staff from five of these nine facilities. Similarly, withdrawal from five provinces means that instead of providing ongoing training and monitoring at 400 public sector facilities, they will in future only be able to provide this support in around 175 facilities.

“The Health4Men Initiative is a broad one consisting of community engagement activities, training of health providers, an ongoing clinical mentoring program as well as the direct service clinics,” says James McIntyre, CEO of Anova Health. “The programme is currently funded by USAID in five provinces and by the Global Fund in the other four. Loss of the USAID funding will impact all aspects of the Initiative in the USAID supported provinces (Western Cape, Gauteng, Limpopo, Mpumalanga and North West.). Work in the Global Fund supported provinces will continue until the end of this grant cycle (March 2019).”

Direct services to 15 000

Rebe says that the Health4Men programme has directly provided clinical services to around 15 000 men in the ten years since its launch in 2008.

Currently around 650 men who are not living with HIV are receiving pre-exposure prophylaxis (PrEP) through Health4Men’s programmes in order to prevent HIV infection. Rebe explains that since PrEP is not currently being provided at normal public-sector clinics, there is nowhere where they can refer these men to continue receiving PrEP and as it stands these men are at risk of losing access.

While there are other programmes working with MSM, Rebe says that in some areas Health4Men is the only programme providing clinical services, including PrEP, that caters specifically for the needs of MSM.

The specific needs of MSM include promotion of knowledge about reducing their risk of HIV and STIs,  providing access to commodities such as condoms, lubricants PrEP and antiretroviral therapy, and access to trained staff who are sensitive to diversity and have the clinical skills to detect and treat  conditions that improve health outcomes specifically in this population. “All of this needs to be provided in an enabling, non-judgmental environment and also needs to be founded on engagement with MSM communities who will use the service,” says Rebe.

A decade at the forefront of MSM services

Since being founded in 2008, Health4Men has been at the forefront of service provision to MSM in South Africa. In 2015 they conducted the first demonstration programme in South Africa to test the provision of PrEP to prevent MSM from contracting HIV. Four of their sites are currently listed as Department of Health PrEP scale-up sites.

“We believe that the centre is a critical resource in MSM care for both South Africa and the region: in addition to all the South African training, both Government staff and NGO’s from ten African countries have been trained by Anova over the past few years either on site at the clinic, or by Health4Men trainers in their countries, and we believe that this is worth maintaining, in addition to the expert service provision for our community,” says McIntyre.

Earlier this year Anova Health applied to USAID – one of the entities through which PEPFAR provides funding – for a new grant to continue the work. Their application was unsuccessful. Rebe stresses that they are not interested in blaming USAID for not getting a new grant and that their concern is simply with ensuring their patients continue to receive quality and appropriate treatment and care. So far Health4Men has received no indication that any other organisation will be taking over the clinical services that they have been providing.

Anova Health is currently pursuing alternative funding to keep at least The Ivan Toms Clinic (one of the  centres of excellence) in Cape Town open in the short term, while looking at other solutions longer term, says McIntyre. “As we presume a new USAID partner will provide alternative community outreach services in the USAID target cities, the most impact on the community in Cape Town and Johannesburg is likely to be the loss of the dedicated clinical services platform. Anova is pursuing other avenues to maintain the Centres of Excellence, but if we were unable to negotiate a way forward with alternative funding and the relevant Provincial Departments of Health, the direct service provision at these sites would close.”

USAID to appoint new service provider

According to Cynthia Harvey, U.S. Embassy Spokesperson, USAID “remains committed to supporting excellent and expanded health services to men who have sex with men (MSM) in South Africa” and is committed to ensuring a smooth transition between its implementers. “USAID and the successful applicant will work closely with government officials and civil society stakeholders to ensure this smooth transition,” says Harvey.

“USAID is conducting a “competitive process to select an implementer for the next phase of activities related to the MSM population in SA,” says Harvey. According to her the successful applicant will “provide a comprehensive package of services for MSM in the City of Johannesburg, City of Cape Town Metro, Buffalo City Metro and Nelson Mandela Bay Metro, which will include empowerment-based, peer-led outreach, provision of condoms and lubricant, referrals or services for treatment of STIs, HIV testing services (including linkage to ART for those testing positive), ART for HIV-positive individuals (including adherence support) and PrEP services.”

Harvey also said that targets for the upcoming U.S. government fiscal year (starting in October 1st) have increased significantly from the current year, demonstrating USAID’s commitment to providing expanded coverage.

Questions Spotlight sent to the Department of Health had not been responded to at the time of publication. According to Rebe, Anova Health will be meeting with the Department of Health in the next few days to discuss the way forward.

Sexual and Reproductive Health Wrongs: What do we need to do to get them right? – An activist perspective: Part 2

By Mark Heywood and Thuthukile Mbatha, SECTION27

The latest edition of Spotlight, produced by TAC and SECTION27, is a special edition, edited by a young woman activist and SECTION27 researcher, Thuthukile Mbatha. It focusses on the state of implementation of sexual and reproductive health rights (SRHR) in South Africa. The edition illustrates that whether it be on access to termination of pregnancy, access to health services or the continued decriminalisation of sex work South Africa is failing badly in its duty to realise SRHR. In this article Mark Heywood and Thuthu Mbatha, attempt to ask, and suggest some answers to, the hard and painful questions arising from the articles in Spotlight. Why are we failing to advance – or even defend – rights issues that are central to our very being? Part 1 provided some analysis on the state of affairs. Part 2 published here makes an attempt to share some insights into what can be done. Mark and Thuthu do not pretend to have all the answers or to be authorities on the subject. This is an attempt to get an important conversation going and Spotlight will aim to publish a numbers of other opinion pieces on the subject.

Part 1 in the series ends with the statement that we have become complicit with a horrendous status quo. We kick off Part 2 with some suggestions about how we can change this.

SRHR require a struggle for power and equality.

Let’s be clear: SRHR cannot be achieved without confronting issues of power – particularly who has power and who doesn’t. Although they seem to be loved by Northern donors SRHR are not ‘soft’ or easy rights. Their realisation would have an immediate bearing on improved health and HIV prevention, but that recognition  doesn’t seem to be enough to persuade policy makers to act on them. In reality their implementation requires a challenge to men’s power in the world not only in the home, but particularly in politics and economy.

SRHR may exist in law and policy in many countries, they may be acknowledged in the SDGs, but they don’t get budgets.  This is because men dominate parliaments and men don’t take SRHR seriously. SRHR require a revolution.

SRHR require youth leadership and campaigns that prioritises young people’s well-being.

SRHRs are relevant to all people of all ages, but they are especially important for and to young people. Young people are in the phase of their lives where they are discovering the potential joy of sex and learning about their sexuality. South Africa’s Constitutional Court has recognised that:

“the majority of South African adolescents between the ages of 12 and 16 years are engaging in a variety of sexual behaviours as they begin to explore their sexuality.” Sexual experiences during adolescence, in the context of some form of intimate relationship, are “[n]ot only . . . developmentally significant, they are also developmentally normative.”

Yet despite this the law continues to deny young people access to sexual and reproductive health care services. Only last year did the Department of Basic Education (DBE) finalise a policy on HIV in schools.[1] Only in 2018 has the DBE published a very poorly written draft policy on Pregnancy in schools.[2]  Given that 59% of our population is under 30, and 17% are between the age of 15 and 24 of which nearly five million are women, this amounts to the denial of access to health care services to which they are legally entitled to a lot of people.[3]

Most women give birth before they reach the age of 30.[4] So, that’s when we most need recognition of these rights. Yet the world is mostly run by older people. For example, the average age of MPs in our National Assembly is over 50. SRHR therefore also force us to reflect upon the age and interests of the people who makes decisions and how these decisions reflect their priorities and preoccupations. They call for youth to mobilise and become much more involved in politics.

SRHR require us to recognise that experiencing sexual pleasure and freedom without risk is a right.

It is wrong to communicate and advocate for sexual and reproductive health rights as just/mainly about negative obligations and preventing harm. Young people especially pay little heed to SRHR because they are often spoken about as if they are primarily about minimising risks rather than enhancing pleasure, freedom and equality.

Another weakness in campaigns for SRHR is that they are often most spoken about by middle class people who have them; and, or, they are driven by a donor agenda that makes assumptions about the people who need them and takes little account of their real lives and needs. The people who most need SRHR are poor and marginalised. They experience multiple rights violations. There is a fight for survival, every day. They do not have the luxury to fight only for their SRHR.

Activists must start to assert SRHR as positive rights. They have been recognised in law because they are necessary to enhance human joys and freedom. They are vital for the achievement of freedom and equality, freedom particularly for women and girls, and for marginalised people and populations.

SRHR require us to join the dots between sex and struggles for equality and social justice in education and health.

Relevant SRHR at schools include access to well taught and informed life orientation programmes, that inform young people about sex, sexuality, sexual health and their rights. They should also include access to condoms, access to Pre-exposure Prophylaxis (PrEP) and voluntary medical circumcision for boys. But these rights cannot be achieved without being joined to struggles for social justice and equality in the provision of education.

Today South Africa’s basic education system fails poor learners without discrimination. Of every 100 learners who enter the education system at grade 0, fewer than 5 complete school with a qualification that admits them to University education.[5] However, girls and young women bear the main burden of this failure.[6] The denial of a quality education, the denial of knowledge and information, the denial of a safe learning environment, reduces a young woman’s power and autonomy.

Having been failed by the education system, a young woman falls into a society that further marginalises her in higher education and the economy. This disempowerment may affect a women’s ability to stand up for her SRHR. It predisposes poor women and girls towards older men (‘sugar daddies’) and in some cases sex-work, it leaves many women dependent on men and subject to domestic violence. The question for activists then is how we can integrate campaigns for SRHR into struggles for quality basic education.

A similar situation exists in relation to access to health care services. Because sex and reproduction can be affected by and impact on our health, and because the people most in need of these rights are poor, many SRHR depend upon a functional, accessible and quality public health system, a health system that has sufficient doctors and nurses, appropriate medicines and a budget to meet needs. A health system designed more with the users in mind as well as with the rights of health workers, for example the simple matter of clinic hours. Many patients complain that operating hours are solely determined by what suits healthcare workers with no consideration for what is best for those who need the services.

The issue of the right to abortion (termination of pregnancy) is an example of all that is wrong. It is also an example of the overlapping of SRHR with health and basic education rights. South Africa has a high rate of teenage pregnancy, starting at a shockingly young age.[7] The right to abortion doesn’t only exist on paper; it exists in law, and the law is explicit that a girl can seek a termination without involving her parents from the age of 12. Yet less than one in five (20%) of health facilities offer abortion. According to Marie Stopes International, 245,211 unsafe abortions were carried out in South Africa in 2010 alone.[8] SRHR would be advanced if there was a properly trained cadre of community health workers, able to play a role in community based health education on issues including sexual and reproductive health.

So the question facing human rights activists again is how SRHR can be fought for not as stand-alone rights, but as an integral part of primary health care and as an essential part of a National Health Insurance scheme? How can activists research and then educate politicians and policy makers about the personal and social cost of not respecting these rights? How can we gather the evidence to show that a sufficient and dedicated budget for SRHR would be cost-saving to the health system as well as advancing women’s rights to dignity and equality?

This is why SRHR advocacy needs well researched activism, not just slogans – however justified the slogans are. Unfortunately SRH rights are still battle-grounds and battle grounds require a battle plan.

What is to be done?

In South Africa activists have a huge advantage over our comrades in many other countries because of the legal power given to us by the Constitution and because of the entrenchment of SRHR in the Constitution, law and policy. However, no rights are ever capable of enacting themselves. They require campaigns and activism.

Before and immediately after the advent of democracy in 1994 a number of organisations fought valiantly for SRHR, initially the Women’s Health Project, Reproductive Rights Alliance and the National Coalition for Gay and Lesbian Equality. More recently the One in Nine campaign, Soul City, and others have taken forward this struggle. Social justice movements such as TAC, have taken up individual issues that overlap with SRHR, without fighting for these rights as a whole. But at best most civil society organisations have been silent and at worst many, particularly in the trade unions, have been complicit in gender based violence. Today we need to learn from and follow the lead of those who have fought in this field, but also cut a path to a much broader and more powerful activist front. SRHRs must no longer be in a silo. As I have tried to show above, they are central to social justice. We all have a responsibility to make SRHR part of our practice.

Below are some tentative suggestions about the types of campaigns that must be launched and sustained.

Make millions of people aware of their rights: The people who most need SRHR are not aware that the law and Constitution views things such as bodily autonomy and reproductive choice as fundamental rights.[9] Even the term SRHR is confusing and foreign – it is ‘NGO-talk’. To change this a massive and accessible communication campaign is needed that reaches young women and other vulnerable communities to make it clear that they are not powerless in the face of violence and to start to suggest local strategies and campaigns to advance these rights. This campaign must have scale. It cannot reach only small circles of communities. It needs to be carried through public and accessible media, like the indigenous language radio stations on the SABC which reach over 30 million people.

But linked to this a campaign is needed to educate society as a whole about SRHR, overcome misunderstandings and to engage those who think they are opposed to SRHR.

Define an agenda for SRHR: short, medium and longer term and demand action. Below are some examples of demands we should make:

In the short term (2018) we should demand:

  • A costed, budgeted national strategic plan to confront rape culture.
  • The immediate and extensive provision of PrEP to young women and girls, including through school health programmes;
  • Immediate implementation of the policy on access to condoms in schools;
  • Immediate provision of sanitary pads in every school nationally;
  • Drastically improved accesss to services for abortion.
  • Communication and mass media strategies that publicise all of the above.

In the medium term (2019-2020) we should demand:

  • The decriminalisation of sex work;
  • Implementation of the draft policy on pregnancy in schools;
  • Access to a wide range of safe contraceptives in the public health sector;
  • Extensive provision of contraceptives in schools and higher education institutions;
  • Improved access to screening, testing, diagnosis and treatment of cancers in the reproductive system;
  • Improved access to SRH services that are suitable for queer folk and health services that recognise the special needs of adolescents, LGBTQIA+ folk, pregnant teenagers and so on.

In the longer term:

  • Establishment of more shelters for gender based violence survivors;
  • Improved access to affordable breast, cervical and prostate cancer treatment in the public health sector;

Get civil society to join the dots and connect its own struggles: Civil society organisations’ greatest weakness, and the reason why we don’t often bring about lasting and systematic change, is that we don’t make enough effort to work together. NGOS and social movements have not yet worked out how to focus on ‘their’ particular issues, but at the same time reinforce others campaigns. We have not learnt how to work at the intersections of issues. Despite all the lip-service we pay to issues of gender and women’s equality, they are almost never at the centre of rights practice or advocacy. Gender and SRHR issues are on the margins unless you are an organisation  focussing on ‘woman’s rights’ or LGBTQI issues. And, as we have seen most tragically with regards to Equal Education, even the social justice sector is not immune to the plague of sexual harassment and exploitation. This is not unrelated to the fact that most of civil society, whether in the form of churches, trade unions or NGOs, is led by men and therefore – by default – reflects patriarchy and men’s agendas. Even where women lead organisations, they are not ‘allowed’ to reorient the method and focus of these organisations to take into account gender and a woman’s perspective on the approach to struggle and rights.

In the context of SRHR the biggest problem is that identified by Pumla Gqola: we treat each act of violence, whether deliberate or by omission – as if it is an individual aberration. The only weapon in our armoury seems to be outrage. Outrage is a necessary starting point, but it alone doesn’t bring change. We have to fight a system of rape by consistently demanding and campaigning for a system of rights. In the words of Pumla Gqola:

“… we need to rebuild a mass-based feminist movement, a clearer sense of who our allies in this fight really are, to return to women’s spaces as we develop new strategies and ways to speak again in our own name, to push back against the backlash that threatens to swallow us all whole.”

If this challenge is not taken up by civil society immediately, ultimately our other efforts will be unsuccessful.

The question is how and when?

[1] Url to policy on HIV in schools

[2] Url to policy on pregnancy and S27 and EELC submission

[3] https://www.indexmundi.com/south_africa/demographics_profile.html

[4] Of the 969 415 births registered in 2016, 136 996 (13,9%) were born to mothers who were between the ages of 10 and 19 years old. A large number (783 322) of the births registered in 2016 occurred to mothers between the ages of 20 and 39 years; of these, 243 148 (31%) occurred to mothers within the 20−24 years age group. A total of 34 923 (3,6%) of births registered in 2016 were to mothers in the 40−54 years age group. http://www.statssa.gov.za/?p=10524

[5] Nicholas Spaull, What Should We Be Focusing On in the Next 10 years, October 2017 https://www.dropbox.com/s/7lz256gjl3wk2sv/Penreach%20-%20Spaull%20(Oct%202017).pptx?dl=0.

[6] http://www.hsrc.ac.za/uploads/pageContent/4991/Gender%20inequalties%20in%20education%20in%20South%20Africa.pdf

[7] https://africacheck.org/reports/sa-teen-pregnancies-not-increasing-as-bbc-claimed/

[8] https://www.dailymaverick.co.za/article/2018-01-29-health-e-news-abortion-the-legal-service-performed-mostly-illegally/#.Ws7aImXBbou

[9] According to a recent study by the Foundation for Human Rights http://www.fhr.org.za/index.php/latest_news/democracy-challenged-south-africas-largest-attitudinal-survey-constitution/ only 51% of respondents were aware of the Constitution and the Bill of Rights and “as poverty levels increased, so the awareness levels decreased.” Shockingly, but perhaps not surprisingly “In response to the statement that married women are allowed to refuse to have sex with their husbands, a worrying two fifths (41%) of all respondents disagreed with this statement. Again the differences between male (44%) and female (39%) were not that stark.”

Lack of PrEP for young women is a rights violation

Thuthukile Mbatha, Spotlight

With around 2 000 new HIV infections every week in young women and girls aged 15 to 24, South Africa is facing an urgent HIV crisis in young women. Given the scale of this crisis, we need to use all the tools at our disposal to help young women stay HIV-free. And yet, uptake of one of the most exciting new tools is happening at a snail’s pace.

Pre-exposure Prophylaxis (PrEP) involves people who are at risk of HIV taking an antiretroviral to avoid becoming HIV-positive. A number of different kinds of PrEP options have been tested, but so far the form of PrEP that has worked best involves taking a daily pill that combines the antiretrovirals tenofovir and emtricitabine. This combination is marketed under various brand names, and when taken as prescribed, it is extremely effective at preventing HIV infection. PrEP in the form of a vaginal ring has also shown some promise, but appears to be less effective than the tenofovir/emtricitabine pill.

So why are we not providing every young woman in South Africa at risk of HIV infection with PrEP? Why, even in 2018, are we talking about providing PrEP to only in the region of ten or twenty thousand young women and girls in the entire country?

One probable reason is that in many of the trials conducted so far, people simply did not take PrEP as regularly and diligently as they should have, i.e. as prescribed. Of course, this difficulty is to be expected – convincing healthy people to take a preventative pill is hard, especially if there might be some minor side effects associated with that pill. Thus there is a worry that pills purchased by the state may go unused, or be used only intermittently.

A second (and related) reason might be that studies and mathematical models suggest that – from a big-picture public health perspective, at least – PrEP is not the game-changer many hoped it would be. Broadly speaking, to roll back the HIV epidemic, prioritising the treatment and retention of treatment of people already living with HIV will have greater impact than a PrEP rollout. From a public health perspective, then, PrEP might have relatively low priority.

A third probable reason is cost. Though a month’s supply of PrEP should cost the state less than R100 per person, there are also the associated costs of counselling, and ongoing care and monitoring.

While the financial and human resource costs of a PrEP rollout would indeed be significant, this should be offset against the economic benefits of preventing HIV infections. Several studies have been done in South Africa to test the cost-effectiveness of rolling out PrEP to young women, and the evidence suggests overwhelmingly that PrEP could be a cost-effective tool to reduce HIV infections among key population groups – especially because it need not be a lifelong drug; it is only taken when one is exposed to a greater risk of contracting HIV.

However, these reasons pay scant regard to individuals and their rights. The statistics clearly tell us that young women are sexually active, and being exposed to the risk of HIV infection – how else would we have 2 000 HIV infections a week?

By dragging its feet with the rollout of PrEP, the state is saying to young women: “This new tool with which you could protect yourselves exists, but we don’t think you should have it. Even if you know you are at high risk of contracting HIV. Even if you have a violent boyfriend who refuses to use a condom. Even then, we will not give you PrEP to help you protect yourself.”

Section 27 of The Bill of Rights in the Constitution of South Africa states that “Everyone has the right to have access to healthcare services, including reproductive health care”. It then goes on to say that the state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of this right.

Every young woman or girl in South Africa at risk of HIV infection has these rights, just like any other individual in the country. Accordingly, the state is obliged to fulfil these rights, as far as is reasonable and within its resources. That PrEP might not be the big game-changer in the HIV epidemic in South Africa does not matter. What matters is that there is a relatively cheap pill that can help young women and girls stay HIV-free, in the midst of a still-raging HIV epidemic.

Living positively: Tshepo Ngoato, Midrand, Gauteng

Thuthukile Mbatha, Spotlight

When Tshepo Ngoato’s doctor and aunt sat him down to tell him he was HIV-positive, he felt as if his world had crashed before his eyes – that he had been dealt a death sentence.

Now, this 26 year-old man is a role model for many young people, and a co-

Tsepo Ngoato, an inspirational young man who is passionate about the rights of young people living with HIV.

founder of the Y+ network, a volunteer group of young people living with HIV (YPLHIV) who have demonstrated a commitment and connection to a constituency of YPLHIV in South Africa. They work to guide parents and healthcare providers on how to address the needs of HIV-positive young people, such as the appropriate age to inform children about their status, and how to support them thereafter. They also offer psychosocial support to HIV-positive youth.

Tshepo is one of thousands of children born with HIV in South Africa. He found out about his HIV status in 2003, after being diagnosed with tuberculosis (TB). His doctor recommended that they do further tests on him, and he tested positive for HIV. He was told to finish his TB treatment first before initiating antiretroviral treatment.

“The media had portrayed HIV as a death sentence – I thought I was going to die soon,” says Tshepo. When he disclosed to his family and friends, some of them did not take the news well, and decided to distance themselves from him. “I lost a lot of friends and family when I came out about my HIV status,” he adds. This rejection was devastating for the teenager.

Tshepo decided at a young age to be open about his HIV status. “My rule is to tell someone I am (romantically) interested in about my status before we even get into a relationship,” he says.

Tshepo has been living with HIV openly for years, and has established a network of young people living with HIV called Y+, represented in all nine provinces. Y+ is currently finalising consultations with YPLHIV in all the provinces to find out the needs of young people living with HIV, because a large number of them find it hard to talk to nurses or their parents. “We have noted that there are a lot of HIV-positive adolescents who have treatment anxiety also, driven by the fact that they do not even know why they are taking this treatment,” says Tshepo.

Other than being the founder of Y+, Tshepo is expanding his horizons in other ways too. “I am currently completing a Bachelor of Business Administration degree through Milpark Business College in Johannesburg. I am an outgoing person. I enjoy doing outdoors stuff, such as hiking and mountain climbing.”

His message to young people is: “You may see that you are beautiful on the outside; but if you haven’t gone for an HIV test yet, you shouldn’t be confident about knowing what’s beautiful on the inside. You can change this by getting tested, and knowing your health status. That would be a wise decision; you should never be scared of something that involves your health.

“To those already living with HIV, your life is the most important thing; you should value it. Being positive is nothing to fear. Never limit yourself and your strength just because you are positive. Your positivity comes with a lot of reactions; do not change who you are, just change your attitude towards living healthily and taking your pills.”

Read the full Spotlight: Youth Edition

Living positively: Shakira Namwanje, Uganda

Thuthukile Mbatha, Spotlight

Uganda has about 1.4 million people living with HIV, with women – and young

Shakira Namwanje – conquering HIV one day at at time

women especially – disproportionately affected. According to AVERT, an HIV education organisation, Uganda sees about 52 000 new HIV infections per year.

Young HIV activist Shakira Namwanje (24) has been living with HIV since a very young age, and has become an outspoken and energetic voice in her country. “At school, children used to say I was HIV positive because I was thin; that used to get to me, but I didn’t know that what they were saying was true,” says Shakira.

Shakira was raped at the age of eight, and contracted HIV – not understanding what it was.

The rape happened during the school holidays. Shakira’s mom had left Shakira with her uncle, because she had no-one else to look after her while she was at work. “My mother had us at a very young age; both my parents had to work, so they used to send us to different relatives during the holidays, because there was no-one to look after us during the day,” says Shakira.

Shakira enjoyed spending time with her uncle and his wife, who had just given birth to a son. During the holidays, her uncle and his wife had a huge fight, which resulted in the wife moving out of the house and leaving Shakira and the son behind.

Shakira was comfortable staying with her uncle, who was still young, and used to bring them food during lunch and dinner at night. “My uncle used to own a cinema, where people from the community used to pay to watch movies or soccer. A number of his friends used to come to watch television programmes, so I used to call them my uncles as well,” she adds.

One afternoon her uncle had other commitments, and could not bring the food. He asked one of his friends to deliver food to the children. That was the day Shakira was raped; and she remembers it as the day her innocence and peace were ripped away from her.

Her uncle’s friend called Shakira in to the house, under the guise of helping him search for a parcel that her uncle had asked him to take. Shakira followed him into the house, where he raped her. “He told me to go and wash my clothes, which were covered in blood, and to never tell anyone about what had happened, otherwise he would kill me,” she says, with so much sadness and pain in her voice as she relives the experience. The man told her he would kill her should she utter a word to anyone.

When her uncle returned home, he found Shakira ill and feverish. Shakira was taken to hospital for malaria tests, which came back negative. Her condition worsened, and her uncle decided to take her back to her mother. Shakira’s mother also took her to the doctors, who also could not find anything wrong with her. Shakira suffered in silence. “I used to have nightmares every day following the incident,” she adds. She says the words and memory of her rapist haunted her every day.

Three years later, Shakira’s mother arrived at school to tell her that her uncle had died in a car accident. Shakira was sad, as she had loved her uncle. “But when I heard that my uncle was with his friend who raped me, and he had also died, I started laughing uncontrollably. I was sad that my uncle had died, but also relieved that the person who had stripped me of my freedom and happiness was no more,” says Shakira.

Shakira’s older sister told her that it is rude to laugh when someone has died. Shakira then confided in her sister the secret that she had kept for years, and which had led to her health deteriorating. Her sister told her mother, and she was taken to hospital for an HIV test. She was HIV-positive.

“Suddenly I was taking treatment every day, and I did not even know what for,” she says. Her mother did not take it well. “My mother was advised to take me to a children’s counsellor who works with young children living with HIV. For so long she refused, but eventually she introduced me to Madame Ahseah, a counsellor,” Shakira says. Her mother realised that she could not keep this information away from Shakira as she was growing up, and she became more inquisitive about the treatment that she had to take even when she was feeling well.

“After graduating, I decided to disclose my status to more people, with the hope of changing other young girls’ lives,” says Shakira. She used a community radio station as a platform to disclose what had happened to her as a child, and that she had contracted HIV through rape. She then joined the ‘Because I am a girl’ campaign.

This campaign creates awareness about sexual violence, and offers psychosocial support to young girls who have been victims of rape. They visit different schools to talk to both girls and boys, and encourage boys to respect girls and value them as their sisters. The campaign has touched a number of young girls who have had a similar experience to Shakira’s.

The ‘Because I am a girl’ campaign is an international programme that is run in over 51 countries in Africa, Asia and the Americas. It looks at various issues that affect girls by virtue of being born female and being young. The campaign looks at issues of child marriage, teenage pregnancy and sexual violence, among others.

Shakira’s campaign is targeting an area called Kalangala in Uganda, a fishing

Shakira and the Stigmaless Band

town that has been in the news in Uganda because of an increase in rape cases. It is alleged that there could be more unreported rape cases in the area.

“I have been sharing my story with these young girls, and that has encouraged them to open up to me about what they are going through in their homes. I have assisted many young girls with getting counselling and sexual health services, and with opening criminal cases against the perpetrators,” says Shakira.

Shakira has not been in many relationships, because her mother was very protective of her following the incident. “I had a boyfriend in university who left me, and to this day I do not know why,” she says. “I never had a chance to disclose my status to him,” she adds.

For most people, finding out that you are HIV-positive is not an easy thing to accept. This is fuelled by the stigma. “The first person that I disclosed to was my best friend, who has been very supportive, and to date is still my rock.”

Shakira does not let her HIV status prevent her from living an active and positive life. “I enjoy sightseeing and touring, swimming, going out with friends, singing; and reading is my favourite. I am actually writing a book about my life,” she says. She is also part of a band called Stigmaless, a group of young people living with HIV. “We sing about HIV prevention, treatment drug resistance, and so on.”

Her message to other young people living with HIV is: “HIV is in you, but it’s not who you are – you can be whoever and whatever you want to be. Taking it one day at a time.”