The Lazarus Effect

Yesterday I was invited by (Red) at a private view of ‘The Lazarus Effect a film they coproduced with HBO.

The film is set in Zambia and it shows how ARV’s can bring people back to life from a death bed in less then 40 days. It is a powerful film really well shot. One of the main reasons why I liked it is that it didn’t portray people living with HIV as victims.

(Red) is a intiative linked to the Global Fund to fight AIDS Tubercolosi and Malaria. It is a way to use very trendy brands to raise money. Gap, Nike, Apple are among those brands. It means that some of their products are also branded with (Red): 50% of the profits from the sale of those products goes to provide ARV’s in Africa.I know it is really good and generous, but I still feel like asking: why only 50%? Those are companies that already have huge profits. By associating themselves with (Red) they are boosting their image and enticing even more clients… Sure they could be even more generous. It is about life or death, after all.

One of the key messages of the film was that it only costs 40 cents a day to provide ARVs to somebody in Africa. I think this is a bit misleading. I have been on treatment for 12 years and changed 5 combinations, sometimes because of side effects some times because they stopped working.  The medications I am now on probably costs over £25.000 a year. If I was living in Africa I would be dead.

I know it is important to make it look achievable to provide treatment in Africa, however we also have to realize that this is a long-term commitment and that costs will continue escalating as people will need to move to more effective regimes. Already many tretment projects have stopped enrolling new people for lack of funds. In many cases they provide treatment to women only when they are pregnant in order to prevent mother to child transmission.But surely babies, once they are born  HIV free,  need their mothers and fathers to be alive.

Another question is the quality of the treatment people receive. In Africa the cheapest HIV drugs, with the worst side effects are used. Prof Jane Anderson, who was also at the screening commented ” I wouldn’t give those medications to my pet….But what can you do when people are dieing?

I spoke to a lot of people last night including some of the heads of the Global Fund and the Bill an Melinda Gates Foundation and Cherie Blair. I spoke as an openly HIV+ woman and highlighted the fact that Africans in Hackney or Lambeth, two of London’s boroughs with the highest HIV prevalence in the country,  may not have access to treatment if they are without papers or they have failed the asylum process. Because of stigma and discrimination many people, don’t test, or test so late, when they are so sick ,that there is not time for the ‘Lazarus’ effect’.

The  harsh reality of African women in London  has been well documented by Prof. Jane Anderson at the Homerton Hospital, in Hackney,  in the report My Heart is Loaded.

Challenging stigma in the media

Yesterday The Sun published an article entitled ‘Taliban using HIV bombs’. According to The Sun Taliban fighters are burying dirty needles with their bombs in a bid to infect British troops with HIV. 

I was alerted to the article by an email by Press Gang, an initiative by the National Aids Trust to keep activists alerted of how HIV is portrayed in the news and encourage people to respond and challenge inaccurate and stigmatizing reporting.  I decided to write to The Sun because it is a national papers with millions of readers.

 Here is my response. I hope it may inspire also others to write.

 I am writing to complain about the article ‘Taliban using HIV Bombs ‘ which appeared on your paper today.

First of all the article is factually inaccurate. There is not scientific evidence that HIV can be transmitted by old needles. HIV is a very fragile virus and is dead and inactive as soon as it enters in contact with air. Dry blood is not infectious.There is not a single reported case anywhere in the world of someone being infected by a needle stick injury outside of a healthcare setting.

Secondly, the language and the tone of the article is highly stigmatizing. HIV is a virus, not a bomb and it is also easily avoidable. It is not used in wars and the vast majority of us who live with this virus go to great length to spread awareness, and prevent infections. Stigmatizing language and an approach that depicts HIV and by extension people who live with this virus as threats add to the stigma that already thrives in our communities. While HIV can easily be treated with ARVs, stigma kills. Because of stigma associated with HIV many people don’t even want to approach testing, or don’t access health services and support that could save their lives. By increasing stigma with your inaccurate and shallow reporting you are negatively affecting the lives of more then 85,000 people who live with HIV in the UK.

The National AIDS Trust has developed a very good resource for editors and journalists on reporting on HIV. You can have a look at it here

 http://www.nat.org.uk/Information-and-Resources/Media-reporting.aspx

I really hope this letter will help you to report better around HIV in the future. Please do not hesitate to contact me if you would like to discuss the matter with me more in depth.’

So far I haven’t received a response, but if you would also like to write to The Sun regarding this article you can do so at letters@the-sun.co.uk or directly to the journalist t.newtondunn@the-sun.co.uk . If you don’t want your letter to be published add: NOT FOR PUBLICATION.
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Walk For Life

Yesterday was the 21st edition of Walk for Life a sponsored 10 Km walk in support of CRUSAID an organization that not only funds ARV’s clinics in Africa but also gives small hardship grants to people living with HIV in the UK.

So many people think that HIV is something that happens somewhere far away from us to ‘other’ people. It is really harrowing to think that it is happening right here, and that actually Southwark and Lambeth, so close to Tower Bridge where the walk starts, have the highest HIV prevalence in this country. Infections have never gone down in the UK.  And if ill-health wasn’t enough, people who are HIV+ are also much more likely to be poor. 

Research shows that one in 3 people with HIV in the UK has faced poverty. Access to the hardship fund means that some of us have been able to buy food, or pay a heathing bill when things were really hard. Even I, when I first arrived in London and used to crochet jumpers for less the £100 a week,  was supported by this grant, which meant I could continue heating my room, and not starve during a particularly cold winter.

Here are some images from the walk, and proof I have done it! You can still sponsor me until the end of August! it is very easy: here is a link to my sponsorship page. Please donate generously… I may be an OK activist but I am surely a crappy fundraiser…Haven’t got a penny in yet….So please please please… sponsor me! 

Here is our walking team with the banner and our new brand and logo. I love the fact that the picture depicts men, women, and children…just as the words on the banner say.

Here is the start of the walk..as you can see a big crowd!

But it looks like not many people arrived…

And this is my personal favourite. I think it says it all!

How To Stay an Activist

 When we train HIV+ women activists for PozFem, the positive women network we often say that to be an effective activist you must follow the rule of the three Ps:

 Prepare. Promote. Protect.

 I think it was clear from this blog that I was doing a lot of preparing and promoting. Last month I was for the first time in my life on BBC news. Yes, on telly! I was interviewed on the introduction of 60 seconds HIV tests in community settings around London. My response was “It may take 60 seconds to give an HIV test, but it takes much longer to deal with the results if it is positive. I think it is essential that people know their status in order to take good care of their health. However it is also crucial that people who test positive are referred to good psychosocial support, and especially peer support, form others with HIV. Learning to live with this virus is not easy”

 Anyway I was not able to see the interview because by the time it was broadcast I was already practicing the third  P. ‘Protecting myself’.  So I received lots of lovely texts by people who saw it, while lying on a sunny beach.

 Protecting means many things. It means not feeling forced to be open about your HIV status if you are not ready, or if you think that it could be damaging to yourself or your loved ones. It means that you do not have to answer all the questions a journalist asks you. It means you have to make sure that you are not isolated, but have a good network that can support you with love and advice. It also means that you need to know when to take a break, and recharge yourself. Therefore I was protecting myself from exhaustion and burnout with a lovely holiday in Cuba., in which I could indulge my love for salsa dancing and rum.

 I feel ready now to put my head down and focus on ‘Preparing’ and ‘Promoting’ again. The International AIDS Conference in Vienna is just around the corner, and I hope I will be able to blog about it…Actually I promised several people I will. …Anyway, I have already planned more ‘Protecting’ afterwards…