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Red in partnership with the Global Fund (I think) and HBO has produced this 30 minute documentary called the Lazarus Effect. If you’re not familiar with the Bible, Lazarus was raised from the dead by Jesus. The documentary shows the extraordinary effects treatment can have on people living with HIV. I have to admit, despite working in HIV prevention communication, I’ve never actually seen that happen, probably because most of the people I’ve seen that close to death, did die.
The documentary filmed in Zambia shows how in three months, people who looked skeletal and on the bring of death, when put on treatment, went back to putting on weight and looking healthy. The aim of the documentary is to show that treatment works and its needed. What the documentary didn’t talk about is how funding for treatment is running out. When you’re on treatment its for life, when you stop taking it, you can die – it’s as simple as that.
The fact that only a fraction of people who need treatment can afford it, or are on it with free meds is bad enough, but the fact that those already on treatment (through government or NGO programs), who knows how many more years treatment will be available – if governments continue to rely on foreign aid. Governments, especially African ones, need to be more responsible for their people without heavy reliance on foreign aid, because we need sustainable solutions.
And while they’re figuring out how to pay for treatment, they also need to figure out how to pay for intensive prevention campaigns, campaigns that work, campaigns that are relevant to its people. It’s cheaper to prevent HIV than put people on treatment for the rest of their lives.
First we need to understand why people are still getting infected. There is a lot of reasons or research published on this, but not so much on the socio-psychological dynamics. My sister – the Rhodes Scholar (yep I’m a proud sister) is doing her research project on how inter-personal relationships can affect people’s perception, and therefore taking, of risks. I can’t wait to read it.
There are obviously lots of ways to approach this, but without a significant investment of resources, prevention and treatment simply won’t be impactful enough to be successful – I know, I’m preaching to the choir.
Zambia - home to the mighty victoria falls
Going home was a somewhat welcome break. I did go for a family emergency, though the emergency was less so when I arrived, but was good to be there.
I got to soak up some sun for starters, which was funny because my parents kept asking my why i wasn’t cold (er because it was 20 degrees!). But also to hang out with my family and catch up. Being from a country where 1 in 4 people are HIV+ it’s quite common that the conversation will come up – because most of us having relatives living with the disease – as well as the all too common conversation of ‘suspected’ cases. This I find quite disturbing that on one hand, people insist that stigma is mainly self stigma, that most people are used to HIV, so don’t stigmatise, yet there’s still the whispers of people who may or may not be infected.
I found out about a cousin who is infected – but I’m not supposed to tell anyone because she doesn’t want people to know – so said her sister. My aunt then later told me that my cousin is open about her status and that she wants to fight it and live a long life, and wants to make sure other relatives do the same by sharing her story. So I’m a bit confused as to whether she is publicly open or only open to relatives, or maybe even select relatives. Either way I was glad to hear this because she is so full of life and to give up would have been so devastating.
Then I have the other relative who is so clearly in denial. He’s just recovered from an illness, where we just weren’t sure he was going to pull through, thankfully he did. But it made us realise that as a family, we need to talk about what is going on. We can’t continue to leave him to live in denial and us wait until he’s ready to come round, he needs to start taking care of his health and we need to help him.
But it was an eye opener because I realised that as much as I know about this disease, I really know nothing about it. I was thankfully when I was talking to Aric from Discovery Channel’s Global Educational Partnership, about their feature length film on AIDS in Africa (for Africa?), that they really want to tell the real story about HIV/AIDS. I think with some script adaptations, their film has the power to do something very different and unique when it comes to HIV. Too often funding is tied to what we can or can’t say, and while I understand why in most cases, it does make you wonder whether the true stories will ever come out.
Aric had a good point when he talked about prevention (and i’m using my own words here, so maybe i misunderstood him!), how can people prevent a disease they don’t understand? Most of us don’t understand the science of the virus for us to prevent it, or help take care of the people we love who are infected. And maybe the onus is on us to find out more, I really can’t say why I haven’t taken the time to understand this more…But as communicators, we also should be imparting this information, as much as we do the ‘use a condom’ message.
Every time I go to any part of Africa, I do get a bit sad, but I also have a huge sense of hope, because even though people are dying, there is still a sense of hope; people still smile. But this has being going on far too long, we really need bold actions and more research to really start making long lasting changes.
The New York Times article recently pointed out how the money for treatment is running out, this is really important because it’s yet another reason highlighting the importance of investing in prevention. It’s cheaper than treatment.
People, who think that I’m a bit of an African elitist, probably think this is an insensitive thing to say, well I’m not an elitist, I don’t come from a rich family that bankrolls me or my relatives living with HIV, but the reality is that if the money isn’t there something has to give.
Our own governments should do more too. But that’s for another post.
I’m back in London and feeling quite energised after my trip to LA – not only because of the refreshing weather (which obviously did help), but because of the research agenda conference. I was quite hasty in my judgment of the ‘research’ people not being able to think outside the box, because by the end of the two days they had proved me wrong, with some really insightful approaches. It’s given me the desire to want to do something new.
The research stuff was also interesting – I was worried that they’d use jargon that I’d have no idea what they were talking about, but a lot of it was in layman’s terms. They also did a lot of stuff on social networking that was really interesting. One of the most interesting presentations revolved around the idea of social networks being associated with behaviour – ultimately people associate with others like themselves.
It seems obvious enough – and actually if you’ve ever been to any school with the cliques (or even in workplace settings coming to think of it), you’ll know how important the influences in these networks can be, and even the importance of your social networks. Such thinking helps you to target your efforts – think about it, the diffusers of change will be faster when led by popular opinion leaders (think Oprah).
Now I need to figure out how to identify the influencers for our audience… Though thinking about it, it’s probably the people we see in popular culture… hmmmm that might be a bit of a problem. Let me think about that one.
Yesterday I had the pleasure and honor to sit on a panel with Hollywood heavies – two co-executive producers and writers of Law and Order: SVU and a supervising producer of Grey’s Anatomy, as well as a woman who used to work on telenovas. We were at the Hollywood, Health and Society conference on setting the research agenda for entertainment education.
It was interesting to see how different we all work when it comes to incorporating global health messaging into our programmes. We all had the same challenge, the ability to add in the messages, but keep the show relevant, authentic and interesting to our audiences.
I think in that way we’re a bit luckier because we create original programming for each issue we tackle. But then that also means we don’t have a existing audience base to reach, so run the risk of poor ratings.
Because we don’t have characters we need to stay true to, we also allow our partners a lot more leeway with what goes into the programming, where for obvious reasons Greys and SVU simply can’t give global health agencies.
I understand the frustration of these agencies that want to ‘control’ the message, but I think that’s where blue sky thinking needs to come into play.
The key problem is not knowing in advance when global health messages will be airing on the shows when they’re broadcast in other countries. However, that doesn’t stop the agencies from using these storylines as a catalyst to encourage dialogue among their audience and in their outreach plans. If anything this introduction of global health messages into such globally successful programmes serves to support the in-country and even global campaigns on the issues.
This is just my observation, that these programmes are just one more tool in the arsenal to address global health issues especially to mainstream audiences.
I do love the combination of working with media and a social issue like HIV/AIDS. It’s an opportunity to explore different ways to communicate to our audience – young people in my case. And the latest challenge is how do we capitalise on the ‘new’ era of social media and community engagement. They are also the latest buzzwords. Ok not that latest, I just always seem to be slow to the party 🙂
But more than just coming to the party, is actually figuring out how do we do this so it works, so it’s impactful? That’s what we spent the afternoon discussing in the office – there’s got to be a way to really make online engagement work and have an impact. It’s obviously a great opportunity for dialogue, but we want to take it to the next level.
I have to admit we are working on some really exciting initiatives and will be interesting to see how they all pan out. Will keep you posted. If you know any really cool initiatives that are coupling social, and more importantly public health, with social media, I’d love to hear about them.
Interestingly enough the circumcision issue brings up a lot of debate – people feel very strongly on the issue. But the problem with – and therefore what is great about – the internet is that it’s free range for people to voice their opinions. Some opinions also hurl abuse, while others are informative. It’s almost like people forgot their social manners when it comes to online space. I had someone comment on one of my posts – saying my stance on circumcision was irresponsible. I have allowed other comments of people who are opposed to my view because it’s informative – we should have a space to discuss issues – and they weren’t plain rude and offensive – and since it is my blog, I decided to have my own rules – freedom of speech that isn’t obnoxious.
I think I was also slightly peeved because I don’t write these blogs just for fun. Yes some may be humorous, but actually this issue is very real for me. Being from a country where approximately 16% of the population is HIV+ (down from 20%), I know enough people, including my own relatives who have lost their lives as a result of this virus, and many more, some extremely close to me who are still living with the virus. I don’t want to lose anyone else, even if it is inevitable for those already infected, but there is nothing worse than losing a loved one to a disease like this. Or any terminal disease I suppose.
So when I’m sharing these thoughts on what the top health bodies are suggesting are key to stemming the spread of HIV, I’m not doing it as joke, but hoping to share opinions on it and understand the issue, and hearing both sides of the debate helps this.
I don’t know if the person who chose to send the comment has ever lost someone to HIV or if perhaps he is living with the virus himself, but I think not having discussions on different aspects relating to HIV and AIDS is irresponsible. I think not talking about the realities of HIV, whether you’re infected or affected, is irresponsible. However, if he thinks that my comment about men getting circumcised if that means they won’t have to use condoms means that a whole bunch of men will go out and get circumcised, well then he clearly thinks I have more influence than even I could have imagined! (And clearly it would be a whole bunch of people who can’t really read because I’d already said that even if a man is circumcised he’d still have to use a condom. Sigh)
My point is that these blogs are my thoughts on the issue, that I want to share, because I care too much about this issue to sit here not doing all that I can do, and if that makes me irresponsible, I guess I’m happy to wear the title.
Reverand Al Sharpton was the guest speaker at an event hosted by Operation Black Vote, while he spoke specifically about racisim and social injustice, his words moved to me think about the fight against AIDS. One of the things he spoke about was being relevant, about standing up and being counted.
That’s what we need to think about in our individual role in the global response to HIV/AIDS. We need to ask ourselves, are we doing all we can do? Or are we accepting the status quo?
The epidemic does seem insurmountable but the reality is, all battles that need to be won seem that way, but we battle on if we want to see a change. And each and every one of us has to play a role. We can make excuses that it’s a problem over there, that all things are equal and people should be able to access life-saving treatment, or that there are a lot of people already working on the issue, will one more person make a difference. Or whatever excuse you tell yourself to not get involved. But if you’re not engaged, you’re irrelevant – well that’s what the Reverand says and honestly, it makes sense.
And it’s not just about AIDS, its about all the other social ills in our society and the injustice that surrounds us, like what’s going on in Haiti. Haiti is poor for many reasons and one of the reasons is because of the economic injustice that engulfs it. Funningly enough, some people are now saying that that’s actually lucky for them because the poor structures of the buildings might just be what has saved lots of people. Hmmmmm…
But I’m going off on a tangent. My point is, be relevant, however you chose to be, just be relevant.
The London Evening Standard did a survey asking people if they’d tell their current partners how many people they’d ever slept with. A surprising proportion of them said they would – ok it was about 10 people surveyed and about 8 of them said they would.
Sexual health dictates that we encourage people to talk openly about their sexual history and all that. But is there a way that you can do it without revealing your number of partners? Who doesn’t remember that scene in Four Weddings and a Funeral when Andie MacDowell’s character counts off the number of partners she’d had and Hugh Grant squirms and sweats as the number progresses over 10?
Is that not still the reality? Men are uncomfortable hearing how many people (male or female) their girlfriend has had – though could this be because they’re worried they can’t live up to expectations of her experiences? And women worry about being labeled.
I think we should encourage people to talk about sex so that they can talk to their partners about sexual health issues, getting tested and even sexual boundaries (some people are into more weird stuff than others).
But do we really need to get into numbers? And do we start judging people because of that? I.e. would a more sexually experienced woman have an issue with a man who’s only had two sexual partners in his lifetime? Would a man want to be with a woman who’s slept with 20 odd partners?
I don’t know, I just think the numbers game is a very tricky one. I think the Evening Standard went on to say that because the people were more open to disclosing their numbers they’d be more open to talking about their sexual health and other sexual issues. But if that’s true it clearly hasn’t done much, because the UK still has among the highest – if not the highest – rate of teenage pregnancies in Western Europe.
So again, I ask, what is the point of discussing your numbers? Keep it to have you had any sexually transmitted infections, can we get tested together and what method of protection will we use? – straight to the point.
Of course it would be nice if we could get to a point where sex is not so taboo and people can discuss anything without fear of judgment. Until then, I’m keeping mum about my number of sexual partners. I’m guessing one or none is the ideal number your partner wants to hear, and I don’t like to disappoint.
People, especially in the health sector, claim that scare-mongering doesn’t work when trying to communicate prevention messages. I’m not so sure I agree with this. Time and time again the ad that people, certainly in the UK, remember regarding HIV is the Tombstone PSA. You watch it today and think it’s just plain ridiculous – the grim reaper killing people like it’s a bowling game! But something about it worked.
Then today, you read about the woman in Detroit who created the hoax video about how she had slept with 500 men and infected them all – people’s boyfriends and husbands, just to drive home the message that you could be the partner of one of these men. People called it in, fear of a public health scare. But the testing clinic in Detroit saw its numbers jump significantly after over 17,000 viewed the spot. Surely that’s done more for HIV than some other more pc campaigns have done?
I do think people respond to basic emotions and fear is one of them. Yes you have to be careful not to preach the HIV+ = Death message, but the reality is, unfortunately, that if you have HIV you are going to die. Having lost relatives and still have relatives afflicted with this virus, I hate to say that, but we’ve got to be realistic. This isn’t a nice virus we’re dealing with, when it’s bad, it’s bad.
I think you need to use different tactics/messages to reach different people and some people do respond to fear, we can’t get away from that.
Messaging is really hard to deal with, but I think I’d focus more on longer formats, like documentaries and films or drama series, because then you can focus on the complex nature and issues that surround the virus. Maybe there’s a way you can tell people that if they get HIV they will die (eventually) without telling that that they will die and putting the fear into them.
