The missing “faith healing” dialogue at the 2016 AIDS Conference

by KINGSLEY CHASANGA

As a first time participant at this year’s AIDS conference, one of the things I saw conspicuously missing was the aspect of sessions involving the faith community and how they are influencing the response to HIV and AIDS response. This was an area of concern considering the hype that the mushrooming of “faith Healing” especially on the African continent by people who call themselves “men and women of God” who continuously claim they heal people after praying for them. This has prompted many people especially in Africa to flock to these “men and women God” seeking divine healing and in the end many have stopped taking their life-saving medications – which has in some cases led to loss of lives.

I have to say – lack of interest by donors and other key players in supporting work around challenging religious fundamentalisms and activism and also bringing on to the discussion table questions about social and political happenings around HIV and AIDS has fueled this.

It was my expectation that there will be some sessions and research work presented and deliberated on at the conference about “faith healing” so that solutions are recommended to check against this practice but it seems there wasn’t anything of that sort. I strongly feel that this was a missed opportunity considering that the conference was hosted by Africa where this practice is rampant.

At the next conference I would urge the International AIDS Society to seriously consider this issue on the agenda, and also to involve faith movements/leaders in these conferences so that we address the issues that are arising together and help to address the problem. As much as the other issues that are hot on the agenda – adolescents and young women, key populations among others – if this area remains unaddressed, we may risk compromising individual health of people living with HIV and in the long run undermine efforts to expand access to effective treatment, and hence affect the fight against HIV in the world especially in Africa! 

One gap seems to get wider

KENNETH MWEHONGE (Uganda) writes:

#AIDS2016 has been a marvelous experience for me – being around very passionate fellow activists, advocates, researchers, innovative scientists, donors and decision makers for five days is a very rare opportunity. I have also been mesmerized by infrastructure and beautiful coastlines around Durban. At the same time, I have been utterly perturbed by beggars’ and homeless poor people sleeping on the streets of Durban.  

For five days in Durban, we shared ideas, strategies, tactics and tools to use for ending HIV/AIDS epidemic and bridging the treatment gap of 20 million people currently in need of treatment globally.  Scientists are working day and night for to come up with an HIV vaccine and a cure, and I learned at the conference that big strides have been made. However, one gap seems to getting wider and wider – POVERTY!! I am talking of the gap between the poor and the rich.

On the second day of my stay in Durban I decided to walk from my hotel in South Beach to the International Convention Centre (ICC). I saw three people at different points wrapped in plastic paper sleeping on the cold floors of the streets of Durban. I was in disbelief and was gravely shocked given the apparent level of development in South Africa, compared to my homeland in Uganda. On the same day I went to a nearby mall to have lunch and a young girl came to the table I was seated begging for food.  She said, “Please don’t give me money but just give me something to eat.” She looked so hungry and desperate. Outside the mall, near the Gugu Dlamini Park, were several women and children also begging for food. I’ve seen poverty, and, and trust me, I saw it written all over their faces! And all through the week, as the long days came to an end and we rode in buses home or walked in the streets, similar faces kept coming up. It was so painful for me to take in, and it got me thinking that maybe there are far more pressing needs we need to address for the lay man, woman and child walking on the street first before talking of the ending AIDS. Poverty is definitely a key determinant of ending the epidemic yet not much attention is given to addressing poverty. I barely heard any speakers talk about it. What I saw in those few days in Durban tells me that we’re not going nowhere if poverty is not addressed. 

#AIDS2016 – Where do we go from here?

by ANGELO KAGGWA_KATUMBA

After an intense week of deliberations, the 21^st International AIDS Conference had to come to an end on July 22. Days began as early as 7am and some didn’t end until 11pm – with some delegates starting their days with satellites and ending them with strategy/networking meetings. The activists, among, other things used their early morning and late nights to plan protests and to strategize on how to make their time together count and to make their voices on issues such as social justice, equity, human rights and funding among others.

I took time to speak with some delegates to get a feel of their conference experience. Below are their reflections:

What are you taking away with you from the conference?

“AIDS 2016 has showed us that we’ve done extremely well in generating implementable science,” said AIDS 2016 Co-Chair and CEO of the South African Human Sciences 

Research Council (HSRC), Dr. Olive Shinana. “We’ve for instance done extremely well on the issue of elimination of mother to child transmission of HIV and with treatment for adults. Who would have imagined that today 17 million people would be accessing treatment? But I’m concerned that at the same time we’re seeing such important gains, funding is going down. If we don’t see more funding commitments, I worry that the gains we’ve made will be limited or even reversed,” Dr. Shinana added.

“I was yearning for something new, but I didn’t really get it,” Kutlo Motlhobogwa, 29, of the Botswana Ministry of Health observed. “We got lots of updates on what we’ve been doing – and these were great, but I was hoping to see some new science. I was also hoping to hear more conversations about such issues as sexuality, erectile dysfunction, infertility etc but these weren’t adequately covered. In addition to this, pre-exposure prophylaxis (PrEP) was talked about a lot at the conference, but I didn’t hear as much about how it will be delivered,” added Ms. Motlhobogwa. 

“A space like the Global Village where community people, scientists, funders and even the public can interact is exceptionally important. The Networking Zones provide opportunities for collaboration, interactions, interest exchange and maybe even future business for others,” said Manu Ndlovu, 39, artist and actor, South Africa.

On his part, Moyo Phakamani, 23, of the Pediatric AIDS Treatment for Africa (PATA) in Zimbabwe remarked, “We young people are at the frontlines of delivering prevention, treatment and support to our peers, but I didn’t see us at the driving seat of issues about us at the conference.”

“Our peers trust us, and we listen to each other on issues of sexual and reproductive health. They won’t listen to those old people who were presenting our issues on our behalf,” concluded Mr. Phakamani.

What is an immediate action you’re going to take as soon as you return home?

“PrEP is an intervention that works right now. Why wait for tomorrow to make it available to individuals at highest risk of HIV? PrEP is a potential game-changer in HIV prevention and its rollout needs immediate action,” said plenary speaker Dr. Carlos de Rio of the Emory University Rollins School of Public Health.

“I’ve been able to connect with other youth from different countries and networks,” said Noluthando Gxagxa, 23, of Pediatric AIDS Treatment for Africa (PATA) in South Africa. “Now I see the value of networking. I’ve learned about a peer-saving scheme at this conference and I’m going back home to help the young people from a network in Malawi to start one,” said an excited Ms. Gxagxa.

“We need to act immediately to address the gap in prevention and treatment services for adolescents. The conference has showed us more evidence that new infections are not going down among adolescents yet we’re making progress among other groups. We must do better to understand adolescents and to deliver services tailored to them,” said plenary speaker, Dr. Dorothy Mbori-Ngacha, 50+ years, Chief of the HIV Section at UNICEF Nigeria.

“Persons with disabilities weren’t so much on my radar until this conference,” Ms. Ndlovu confessed. “We must make more deliberate efforts to make it easy for persons with disabilities to fully enjoy and participate meetings like this. This should be an immediate action for the International AIDS Society,” concluded Ms. Ndlovu.

What are you going to do less of as a result of what you’ve heard at the conference?

“As a field, we must do less of congratulating ourselves about this so-called “End of AIDS”. That’s so George Bush-like,” said Dr. del Rio. “There’s a lot more work to be done and the more we focus our attention to this celebratory stuff, the more we get off the mark of what actually needs to be done – such as rolling out PrEP to those at highest risk,” added Dr. del Rio.

“My only issue is that there are clear divisions in the interactions of the different conference delegates – you see a lot of the young people and community-focused delegates in the Global Village and the ‘big shots’ at the plenaries and other big meeting rooms. We should see less of these divisions. I for one hope to go home and do a self-examination of the superficial divisions in our own programming, and hopefully start a journey of bridging them,” Ms. Ndlovu said. 

As for me, as exhausting and sometimes frustrating as the week was, I’m going home with hope – because of how much the field has achieved since the same conference was held in Durban in 2000; because of opportunity before us deliver treatment to all individuals who need it; because of the promise of interventions such as PrEP that, if delivered to individuals and groups that need it the most, could be game-changers; and because of the promise of other prevention options on the horizon in years to come such as microbicides, an effective vaccine and a cure. Everyone – roll-up your sleeves for it’s going to take a lot of hard work. 

"The ring has in me a new advocate!"

By GQIBELO DANDALA, South Africa

I awoke on the morning 18th July 2016 excited to attend my first International AIDS Conference. While this was the 21st International AIDS Conference, I had no idea what to expect. Neither had I ever heard of microbicides. That is until I met Anna Miti on the shuttle from the airport to conference. She invited me to the Women's Network Zone session where microbicides were to be discussed. And what a session it was! I learnt that the term “microbicide” refers to substances being studied that could be used in the vagina and/or rectum to reduce the risk of HIV infection via sexual exposure. Microbicides could come in a number of forms including vaginal rings that release the active ingredient over a few weeks or months (slow-release), creams, gels, films and suppositories that could be used vaginally or rectally. I was a little sad to hear that there are no licensed microbicides available today.  

I met some incredible people in the session, scientists, community workers and advocates. Most importantly I learnt of the wonderful work and strides happening in the space of microbicides research. I am not only intrigued, but now a curious fan. I will be following the progress, research and results particularly of the microbicide ring because of the immense and life saving potential this holds for the young women we work with at Future of the African Daughter (https://www.facebook.com/Future-of-the-African-Daughter-project-165422323491878/).

I understand that the ring is not an all in one solution, it deals with HIV infection, but not other sexually transmitted infections or pregnancy. But then again only the condom, if properly and consistent used, provides that single solution. But the assumption is that we live in a safe world where young women have rights over their bodies, where there's room for the negotiation of condoms in consensual sexual encounters. But this is not the world in which we live. The ring has the potential to give young women at least some power over their bodies to remain HIV free, especially where they don't have space to negotiate safe, consensual sex. HIV infection cannot be undone or reversed. The ring can save their lives. The ring can give young women back some power. The ring could become an important arsenal in the fight against HIV among young women, so I'll be keeping my eye and ear close to its further development. The ring has in me a new advocate! 

Are the UNAIDS 90-90-90 targets achievable?

CHILUFYA KASANDA writes: I’m a Zambian HIV prevention advocate. My country is one of many that are the epicenter of the HIV/AIDS epidemic. According to UNAIDS, 1.2 million people are currently living with HIV in Zambia, yet just over half are currently receiving antiretroviral treatment. The adult prevalence rate is 12.9%, and there are an estimated 20,000 deaths each year due to AIDS-related complications.

This past week, I attended my very first International AIDS conference. In fact this is the first time I ever attended such a big conference. I had really high expectations, especially considering the conference theme of “Access Equity Rights Now”.

Over the last several months, I’ve been hearing a lot about the UNAIDS targets of 90-90-90 by 2020 – whereby 90% of people are tested, 90% of those who test HIV positive are put on antiretroviral treatment, and 90% of those on treatment are able to suppress HIV. I’ve also been hearing a lot about the new UNAIDS fast track commitments – for instance elimination of new HIV infections by 2020, the target of initiating 3 million people on pre-exposure prophylaxis by 2020, eliminating gender inequalities and violence against women and girls, and circumcising an additional 27 million men and boys in the priority countries where male circumcision prevalence is low and HIV prevalence and incidence are high.

I was hoping to hear concrete commitments that match with the said targets. And session after session, I waited. ‘Maybe I’m going to the wrong sessions’ – I told myself. I consulted with other advocates and even random conference delegates – and it seems like I wasn’t alone. The only thing I kept hearing were activists and advocates asking funders, governments and other key players for satisfactory answers on how the identified targets and gaps will be addressed.

I know that there have been many gains since the last International AIDS Conference in Durban in 2000 – for instance 17 million people are now receiving treatment globally (compared to just over 1 million 16 years ago); 12 million men and boys have been circumcised (the goal was to circumcise 20 million); we now have PrEP etc. That’s all good. But, these gains are seriously threatened if funding for the HIV/AIDS response keeps dwindling; if some groups like adolescents, young women and girls, key populations are being left behind.

And what was disheartening to me was seeing how flashy and posh some of the stands of the donors and pharmaceutical companies looked at the conference. Every time I passed one, I couldn’t help but wonder how many more people could have been put on treatment and provided comprehensive prevention therapies instead of building some of those spacecraft-looking stands. Where are the priorities? Whom do we represent? Whose lives do we work so tirelessly to improve? How many lives could be saved if our priorities are set right? My main take home message coming out of Durban is that we – all of us, activists, governments, donors and other stakeholders must hold ourselves to greater account – we must walk this big talk we’re talking, otherwise our targets will just remain in the publications we write and in the speeches we make.

We have penises! We have vaginas!

Stella Iwuagwu is in the wheelchair on the right

LIZ MCGREGOR writes: In the staid lobby of the  Durban International Conference Centre, a beautiful woman in a wheelchair is shouting: “I have a penis! I have a vagina! I have sex!” Stella Iwuagwu, 47, from Lagos, is trying to animate a group of disability protesters standing politely with their placards standing a wall. “It’s a silent protest,” replies one.  They are trying to draw attention to how the AIDS 2016 conference excludes disabled people. Most of the protesters have some form of disability but not all are HIV positive.

Silence is useless, shouts Stella, frustrated. “If you don’t make a noise, they won’t notice you.”

Some of them take up her cry and one follows up with: “I am disabled. I masturbate!” Useless! cries Stella again. “No one is interested in masturbation. That’s sex with yourself. It’s safe sex.”

Stella’s passion for the rights of the HIV-positive disabled emerges from her own experience.  In 2007, she had returned to Nigeria from the US where she was doing a PhD on the sexual and reproductive rights of women living with HIV, to do research. A car accident left her paralysed from the chest down.

“Before I became disabled, I wasn’t focused on this population. But a lot of things I took for granted when I walked  around in my high heels, I’m now seeing clearly and I want other people to see that,” says. “People in wheelchairs are invisible. Even with my level of education, you have to overcome obstacles that other people cannot even imagine.”

Stella now lives in Lagos, where she is executive director of the Centre for the Right to Health.

“I learned that HIV prevention interventions have forgotten we exist. There seems to be this notion that people with disabilities are voiceless and asexual.

But people with disabilities have vaginas and penises and desires and they engage in  sex, sometimes unprotected sex because they do not have access to preventative measures or information about the need for prevention.

“In a developing country, you usually need to go to a chemist to buy condoms. How do you get there when most chemists are not accessible? If an adolescent girl is visually impaired, how does she read a flyer telling her about HIV?

“In the early days of my disability I had a lot of questions nobody could answer.  I saw more than seven doctors. I had scans of my bones and bladder but nobody asked me about my sexuality. Eventually I asked my psychiatrist: why does no one care about my sexuality?

“He said: ‘Oh, it’s usually only the men who care about sexuality.’ I was doubly offended. So, even this was gendered! They care about the penis. Is it working? Are there operations to make it work again? But what happens to the forgotten hole – the vagina? It doesn’t matter whether you feel it or not, just stick it in there!”

Who are these people who speak on my behalf?

NTOMBOZUKO KRAAI writes: For decades now, we have been discussing the issue of community involvement and community participation. And sense of ownership. But who makes up this community? Is it a he a she? Is it a lawyer or a researcher who visits the community once in six months, dressed all in black, who drinks bottled water while he holds forth on human rights? And, at the end of the day, goes back to his comfortable bed? Is it an activist who is boldly and openly living with HIV because he is educated and  knows his rights? 

Or is it a 40 year old from a village in the Eastern Cape who fails to take her drugs because there is no food or water to support her treatment? Is it a young woman who is forced into early, illegal marriage in a community where gender-based violence is part of the culture?

The UN, WHO, UNAIDS and Global Fund need to hear horror stories from the community but do they need to hear them in first person, second person or third person? Should decisions be made by others about what happens to me simply because I am not given a voice?

We need to urgently expand access to PrEP

JOHN MUTSAMBI writes: Despite having the biggest HIV epidemic in the world, South Africa continues to make remarkable progress in the fight against HIV and AIDS. The country has become a hub of HIV prevention research and it has the largest anti-retroviral therapy programme in the world. On 1 June, 2016, a national programme to provide oral pre-exposure prophylaxis – or PrEP – to sex workers was launched. This makes South Africa a torch bearer in rolling out a programme that could become a model for other countries, particularly those in the sub-Saharan region that have been hard hit by the HIV epidemic. This bold step by government demonstrates its determination to break the backbone of the epidemic.

As PrEP advocates working in collaboration with civil society we welcome this programme and convey special thanks to Dr Aaron Motsoaledi, South Africa's Minister of Health, for helping to spearhead the push for PrEP implementation. 

However, the staged implementation of this HIV prevention method has sparked questions about ethics. One community member said: "Why is the government prioritising sex workers as a key population in the implementation of PrEP when there are other key population groups that are also at high risk of getting HIV?"

And a sex worker remarked: "Some community members call us 'the drivers of the epidemic'. I think this providing  PrEP to sex workers will further strengthen this stigma."

 These are all voices with concerns that should be listened to. As the mouthpiece of PrEP advocates in South Africa, we urge decision-makers in the National Department of Health (NDoH) to urgently consider expanding access to PrEP to other key population groups, including adolescent girls and young women. We know that this process will not be easy and we are prepared to work very closely with civil society to support the NDoH’s efforts. 

As we wait for information from PrEP demonstration projects to inform our decisions about how best to roll out PrEP, we also feel that at this point, we should also learn as we go. Further delays in expanding access to PrEP will result in continued high rates of new infections that could be averted. PrEP would also help South Africa save on the costs of lifetime ARVs and sickness.