HIV – Digital Good

HIV stigma is not over

On September 2^nd I attended the launch of the report ‘HIV and Stigma: The Media Challenge’ by Sophie Chalk, Director of Campaigns at the International Broadcasting Trust.

Beyond the findings of the report, the launch also included a prominent panel, including Garth Japhet (Founder of Heartlines and the Soul City Institutes, South Africa), Winnie Ssanyu Sseruma (HIV activist), Anne Soy (BBC correspondent, Kenya) and Arvind Singhal (University of Texas).

Hereon is an overview of the main points discussed both in the report (which you should get your hands on!) and the discussion between the panel and the very well-informed audience.

Throughout the discussion, two main challenges were identified: the need to address young people in ICT4D and the media fatigue around HIV and the associated stigma.

Challenge no 1: The need for a clear focus on young people in ICT4D

Potentially every person who spoke, mentioned the need to address young people – both meaning teenagers and younger children.

Teenagers are about to or are already engaging in a sexual life. In countries where HIV rates are high, social taboos often make open dialogue around sexual and reproductive health difficult and the forbidden nature of sex exacerbates HIV stigma. There is a need for ICT4D (information and communication technologies for development) projects that address HIV stigma which are specifically tailored to young people.

Equally younger children can really benefit from learning about HIV at an early age, as they are in some ways blank canvases, who can be taught about HIV without prior judgment and prejudice. For example Garth Japhet mentioned Soul Buddyz, a network of clubs for 8-14 year-olds developed on the side of the Soul Buddyz TV show, which grew extremely popular in South Africa, reaching over 200,000 soul buddyz. Children really wanted to join them because they were ‘fun’ – socializing with children their age around sports and creative activities, while also learning about life skills and HIV.

Challenge no 2: HIV is no longer a story

Media fatigue seems to exist both amongst news broadcasters, as highlighted by Anne Soy, but also amongst young people in Swaziland, as Sophie Chalk shared with us their sentiment of how bored they were with news about HIV. HIV was a story in the 80s and the 90s, but it seems to have lost its appeal in terms of newsworthiness.

It is incredibly difficult to report about the HIV epidemic without stigmatizing vulnerable groups or people living with HIV/AIDS. Journalists need both training as well as access to new stories. Anne Soy was telling us about Kenya, where local journalists have no budget to go out to rural areas and find today’s stories of HIV. This is where NGOs can help. They can provide training, sharing their knowledge and experience, and they can also physically take the journalists to the rural areas and connect them with people who are happy to share their story of HIV.

Journalists do play a role in the fight against HIV stigma, because through their stories, they can share the science; dispel myths of transmission, change people’s views around culpability and morality. They can create a cognitive dissonance against old prejudice about people living with HIV/AIDS, provided HIV is on the agenda of the editorial boards.

Drama as a solution to both?

One answer to both these challenges seemed to dominate the discussion – using drama for social change.

Dramas, like Soul City or Shuga, are a brilliant tool to target young people, as they move away from ‘preaching’ about HIV – abandoning the discourse around what people should do, by using dramatic stories to teach about what living with HIV/AIDS is like. This way, ICT4D can also combat the media fatigue – the science can be taught through the stories of dramas and television and radio soaps.

Interestingly, producer Kate Oates from the UK television drama soap Emmerdale was also present at the event and told us about how she created the storyline of the character Valery discovering her HIV status and the beginning of her life living with HIV/AIDS. Before putting the storyline through, Kate asked the actress whether she was comfortable with it. Kate explained that she felt the need to ask this, as playing an HIV positive character will often have an impact on the actor’s life, who will face questions about it in the media and possibly in their private lives.

Garth echoed this point of view, as he told us how some of the Soul City actors, who play characters living with HIV/AIDS, have become advocates against HIV stigma, as in some sort of para-social interaction, the public sees them as their character. Actors do play an important role in this respect and they can become role models when role models who are actually living with HIV/AIDS are effectively missing.

Someone asked the audience how many famous people living with HIV/AIDS we all knew, and probably most of us could count them on one hand – I definitely can! Some speakers felt that it was time for people living with HIV/AIDS to step up and become role models and inspire a generation! Anne Soy made an interesting point by saying that very few members of the higher social classes come out as HIV positive, whereas amongst the lower social classes, there is less disincentive to be open about one’s status, which exacerbates the idea of HIV/AIDS as a ‘disease of the poor’.

Though, drama isn’t the answer to everything, other media projects focused on young people often in combination with drama are doing tremendous work. These include projects using new media technologies, but also school-based activities as well as after-schools clubs. Fact is HIV stigma is not an old story, it’s very much alive and reports like Sophie Chalk’s are important to remind us of this fact and that efforts to combat stigma are still valuable and necessary.

Stigma and HIV reporting – a lesson from the BBC

Zainab Deen wrote an article in BBC Magazine on ‘Sex workers using anti-HIV drugs instead of condoms’. However, her reporting is everything else but neutral.

Her first paragraph reeks with stigmatizing rhetoric:

“In Kenya 1.5 million people are living with HIV, and there are about 100,000 new infections every year. Despite this, some sex workers are having unprotected sex – and taking antiretroviral drugs afterwards to cut the infection risk. How reckless is this?”

Then she continues, telling the story of some of Nairobi’s sex workers.

“”Let me tell you the truth about why many of us don’t use condoms,” says Sheila who has been a prostitute in Nairobi’s Korogocho slum for six years.

“We don’t have money, and when you meet a client who offers to give you more money than you usually get, you have sex without protection even when you don’t know his HIV status.”

Sheila says she and other prostitutes can go to a clinic the next morning to get emergency antiretrovirals – drugs which suppress the virus, if taken within 72 hours of infection, and in many cases stop its progression.

“We use this medicine like condoms,” she says.”

While this paragraph acknowledges that the women use preventive treatment for economic reasons, the author fails to look at these structural drivers of HIV/AIDS – no mention of poverty levels, of women’s empowerment in society etc.

The following testimony shows more of this apparent ‘system abuse’.

“”I had unprotected sex when I was very drunk one night and the following morning I didn’t go to the same clinic where I got the first PEP tablets… I went to a different clinic where they don’t have my records, and lied that I was forced into unprotected sex,” she says.”

After the reader is appalled by the ‘reckless behaviour’ of these women, he gets another set of information that will really enrage him – that is the price of these preventive drugs.

“In the US, PrEP costs around $14,000 (£8,700) a year at the full price, although people on low incomes can get it much cheaper, or even free.”

I think and hope that the readers of BBC Magazine are smarter than this and know that the story told in this article is one in a million and does not reflect the situation in Kenya. 26 million people in the world need AIDS drugs, 9.7 million had access to treatment at the end of 2012. Sensationalist and moralizing reporting should not get in the way of how much funding goes into providing these life-saving drugs to those who need them!

On sexist social marketing

In her TED talk Amy Lockwood talks about selling condoms in the Congo. She shows examples of condoms given for free by NGOs, international organisations or the government. She mocks their designs because they use pictures and slogans highlighting things such as ‘prudence’, ‘protection’, ‘trust’, the AIDS ribbon etc… She goes on to say that this is not what people (understand men) have on their mind before buying condoms. No, they think about ‘SEX’ (apparently it needs capitalised letters). So she gives examples of a different kind of packaging used by private companies – which are ‘incredibly provocative’ (understand ‘they objectify women’).

She argues that the problem with donor/ government condoms is that they make the messages for their first audience (donors, politicians, agencies, international organisations, NGOs) which like to see such values associated with safe sex unlike the private companies who are only thinking of the consumer. But, it seems they are going wrong. They should be using half-naked women (that’s my interpretation of her comments).

‘It doesn’t really matter what you’re selling. You just have to think about who is your customer? What are the messages that are going to change their behaviour? It might just save their lives’

So, what is wrong with this talk?

Well – what isn’t wrong with it?

Her argument makes sense in a way: If a certain strategy is the most effective in changing people’s behaviour, let’s pursue it. While this is a great logic if you are trying to get people to buy a fizzy drink or tomato soup, it’s not so great when you are trying to fight HIV/ AIDS.

The problem with HIV/ AIDS is that a lot of structural barriers exist – they are macro-level barriers such as HIV stigma, poverty and also gender roles.

Gender roles as a driver of HIV have been the subject of many studies. This is also due to fact that in many high-prevalence countries, the social group with the highest prevalence are young women (15-24 y).

While there is no one way in which gender roles affect HIV transmission, often the problem is that women are not empowered enough. They are not part of the decision of whether to wear a condom. They can be scared to be seen as promiscuous if they ask their partner to wear a condom or they feel obliged to conform to the man’s desires.

So, by using pictures like these,

we are not changing anything about the perception of women’s and men’s role in society.

I know that one condom packaging might not make a huge difference overall, but this does not justify the use of pictures that objectify women. A change of perception will not happen overnight, but we have to try- step by step. It is important to speak out against the use of social marketing in HIV prevention.

If you look at the theory, the same problem emerges. Social marketing is based on the principle that messages are embedded in the social environment. So, what do we do if the social environment is conducive to more infections? Selling more condoms will make a minimal difference. And Amy Lockwood is trying to be impactful by stressing that this kind of strategy will save lives. But actually changing the perception of the role of women and the role of men will save more lives.