Telling somebody: ‘I have HIV’

Telling somebody ‘I have HIV’ is hard. It becomes a little bit easier with practice and experience. But it never ends to produce a feeling of vulnerability and fear.

Here are my 5 grains of wisdom on talking about HIV:

1)Tell yourself first

This may seem a strange piece of advice. But it is easy to stay in a place of denial and self –rejection after HIV diagnosis. Reaching a place of acceptance and overcoming any feelings of shame we may have connected to our diagnosis, is an important process in being ready to tell others that we live with HIV.

2)Talk to other people living with HIV

Talking to others in a similar situation is important: it helps us clarifying what we are feeling. It offers an opportunity to develop a way of communicating about what we are going through safely. It is crucial to have a support network that can act as a safety net, if we have negative experiences after telling some body. Moreover by talking to others with HIV we can learn from their experiences and strategies of discussing HIV.

3) Know the facts

The more we know about HIV, the less we have to fear. In the process of telling others it is important that we are able to explain basic things about HIV. When we tell people, we may have to answer many questions so it is important to be able to give simple but accurate information. If we cannot remember everything ( who can ?! ) we can also point out resources which are accurate and reliable. I always recommend the Ibase website because it is up to date and easy to understand, plus they respond to your questions if you email or call them. It is also useful to find out how much the person we want to tell knows about the subject. Try and throw in casual questions. If they are very naive about the subject it may be useful to prepare more.

4) We are not a threat

Scientific research has shown that HIV transmission doesn’t happen easily. Barrier methods such as condoms and female condoms are extremely effective in preventing HIV transmission. Moreover people on HIV treatment are very unlikely to pass the virus, so much so that the British HIV Association Treatment Guidelines recommends that people who are unable to always use barrier methods and are concerned about transmission can start treatment, to reduce risks of transmitting HIV sexually. I also often explain that women with HIV who have access to good medical treatment and ARVs have 99% chances of having an HIV free baby. This delivers a very clear message of how effective treatment is in preventing HIV transmission. I am still so shocked how few people in the ‘wider world’ do know this. The majority are incredibly surprised when you tell them. Dah!

5)Tell from a place of power

One of the difficult things of telling is that it makes us feel very vulnerable. It is easy to feel like you have handed over all the power to make a choice to ‘accept you or not’, to the other person. Telling can become a way of feeling extremely disempowered. But we can reverse this through our awareness. We can liberate ourselves. It is important to make the conscious decision that telling is ‘our choice’. By making this choice we create an opportunity for our personal power to be expressed. When we take the step to talk openly about the difficult topic of being HIV positive ( even to just one person) we are manifesting many positive qualities: strength, honesty, courage, caring, understanding of our health , openness towards others etc. We have to focus on the power we have. I always recommend to practice, what we are going to say. But also to practice how we are going to stand. How we are going to be in our body. We need to be sitting or standing well grounded , with our feet hip width apart, solidly on the floor. Keep ourselves relaxed. We have to remember to breathe deeply and slowly, our spine erect. Feel strong, act strong, be strong. I really believe that being mindful about our body will support our feeling of power and our ability to talk about HIV confidently and safely. But this can be different for each and everyone of us. Ask yourself how can I talk about HIV from a place of power?

Rejection

It is impossible to know 100% how a person will react to us. If people react negatively and reject us: we must remember we are not the problem, it is not our fault. Their ignorance, and failure to grasp the facts and the truth about this small virus is the problem: their problem.

Nevertheless, rejection is a very painful experience, raw, and hurtful. For many of us it is not possible to go trough it, especially if we are emotionally or otherwise dependent on the person we would like to tell we have HIV. Having been at the forefront of the battle to recognise the links between Gender Based Violence and HIV, I know that for some of us, revealing our HIV status is just dangerous.

Stigma thrives in silence

The fact that many people are still trapped in silence, makes it even more compelling, for those of us who can, that we have a duty to talk about HIV.

I strongly believe that each and every time we talk openly and safely about living with HIV, event to just one person, there is a little less stigma and prejudice in the world.

Internalised Stigma

A contribution to the Learning  Positive site:  an amazing resource for students and teachers to learn about HIV in the UK . The website will be launched on the 27th of February.

Infectious

Infectious is a loaded word. It immediately recalls ideas of contamination, being tainted, a threat to others, a danger,  something to be contained and controlled, with great risks . Whenever I read something about HIV or I attend a conference or a discussion around HIV this word hits me again and again. The number of HIV infected individuals, the risk of infection, the questions around how the infection is spreading, how to stop the infection, who infects who. The fear, the shame and the blame of being somebody with HIV are reinforced whenever I hear this word. I am aware that it derives from  a bio-medical description of disease,  that it merely describes an illness that can be passed by one person to another via a bacteria or a virus. But it doesn’t sound as simply a mere scientific word to me. It signals my place in the world as a person with HIV. Somebody who endangers others, who should be firstly feared and avoided. It doesn’t invite acknowledgment, solidarity, support, love. So every time I hear it I shiver. And to be sincere in most contexts I  find it so unnecessary. Why can’t I just be described as somebody with HIV, not HIV- infected? Why can’t we simply say: passing, getting, acquiring HIV? Those simple words neutralize the negative emotions that are immediately created as the letters H – I -V are uttered.  Emotions create words and words create emotions. Emotions shape our relationship with each other. If we change our language around HIV we can also change the way we live together in the world.

Test and Treat

Test and Treat was one of the few sessions I was ‘kind of able’ to follow at the latest British HIV Association (BHIVA) conference in London at the beginning of the month. In spite of all my ‘activism’ when I listen to very scientific presentations my brain switches off and most of the information passes over my head.

Anyway here is a very simplified version.

In the past few years it has become clear that an undetectable viral load does reduce infectiousness immensely. This is why, for example, preventing mother to child transmission is so successful once women have an undetectable viral load.  And this is also why the Swiss Doctors released the controversial ‘Swiss Statement’ giving the green light to unprotected sex to monogamous, heterosexual, sero-discordant couples on effective treatment.

This topic is crucial to the world of public health not because the grey suits really want us who live with HIV to have guiltless and condomless sex, or ‘Nyama Kwa Nyama’,   doing it flesh to flesh,  as my Swahili speaking friends say with starry eyes.  What really matters to policy makers is finding a shortcut to prevention. World Health Organisation (WHO) believes that if with undetectable viral load you can stop sexual transmission of HIV we can treat our way out of the epidemic. All it is needed is: testing everybody on the planet every year (!) and putting them on ARVs straight away, regardless of CD4 count, for the rest of their life.

Professor Myron Cohen, from the University of North Carolina, who opened the session, highlighted three major concerns clouding the picture:

• Transmission of resistant viral strains

• The contribution of patients with acute and early HIV (subjects who are not likely to be detected routinely but contribute substantially to the spread of HIV)

• The practicality of the idea.

Prof Myron also gave us the example of a recent study in China among 1927 sero-discordant couples on treatment. This study reported around 4% transmission among couples where the HIV positive partner was on ARVs. This study was not considered conclusive because they didn’t use viral load monitoring.  However it provides a real life example of some of the problems of ‘Test and Treat’.

The second presentation of the session, by  Dr Steve Taylor from University of Birmingham,  looked more in-depth to the scientific side of preventing HIV transmission. In order to reduce sexual HIV transmission it is crucial to understand better how HIV works once it is inside the body. Some drugs can  penetrate the genital tract  and stay there at a good level,  thus protecting us from passing the virus.  But not all the drugs work the same way and the collection of samples of genital fluids for research has its challenges!

What I find really exciting is that the criteria of reducing sexual infectiousness will be paramount in developing new drugs and  better combining the drugs we already have.  Personally I was really relieved and felt immediately less infectious just  by knowing that the drugs I am using score really well in the genital tract!

A poster presentation by Dr Taylor and the team he works with, including more information on how different drugs penetrate the genital tract is available here.

As a person with HIV I am definitely very excited at the idea that one day I may  not be considered a viral threat to the world. I think that if sexual infectiousness could really be eradicated this would play an important role in decreasing stigma.

However, I think there are several problems with the ‘Test and Treat’ approach. Firstly an ethical one: is it right to give  somebody potentially toxic treatment in the name of prevention? And could this lead to human right abuses in which vulnerable and stigmatized populations, such as sex workers and drug users are forced to be tested by the police?

Secondly an economic and political one:  in a time in which we can not even test and offer treatment to millions of people who are dying of AIDS around the world, because of lack of money and political will, discussing the ‘Test and Treat’ model seems a  purely academic exercise.

Safer sex skills don’t come with HIV

The story of Susanna, published in this month Positively Women Magazine, highlights the difficulties positive women face in having relationships and starting a family. It made me think of Nadja Benaissa and how hard it was for her as a young vulnerable woman to learn how to negotiate safer and pleasurable sex.  Still in the eyes of the world she is a criminal. Is this Justice?

Susanna’s Story

When I reflect about it I often think it was the fact that I was unable to form healthy relationships that put me at risk of HIV.

Since my teens into my late twenties I was emotionally unstable, lacking self-esteem, haunted by depression, my self-destructive tendencies made me take lots of drugs and unreasonable risks. I didn’t cope well with rejection and this made me unable to insist on condoms, even when it was clear I was in a very risky relationship.

I received my HIV diagnosis just few days before my thirty-first birthday in the winter of 1997. This obviously didn’t make finding love any simpler.  I was in Greece at the time and there was no social support for women with HIV. I was going to one of the main hospitals in Athene, a University hospital renowned for research in the field of infectious diseases including HIV. In spite of its international fame, while I was being treated there I was never offered a condom. My sex life and my sexual health were never mentioned. I think it was just assumed that after being diagnosed with HIV I would never have sex again.

But having HIV didn’t magically stop my desire to find a partner, and secretly I really wanted to have a baby, but how?  How do you tell somebody you have a life threatening, sexually infectious illness? When do you tell him? And how do you deal with the fear of infecting your partner? How do you reassure him that you will not get horribly sick and die?

My first attempt at disclosing was quite disastrous. First of all my capacity to select suitable partners hadn’t ‘magically’ improved. So I still went for difficult men, with selfish and abusive tendencies. The first partner I disclosed to replied to me:

‘I am so unlucky’

He was very selfishly implying that it was unfortunate for him to want to start a relationship with somebody who was HIV positive.  I didn’t say anything. I felt so lucky that somebody would even consider being with me in spite of the fact I had HIV.

When after a few months we broke up he went on diffusing the news among our social group. People came to me and asked: ‘Is it true you have AIDS?’

Following this I spent two years totally unable to tell any partner about my diagnosis. I tried to enforce condoms as much as I could. But it was often impossible. I lived in tremendous guilt, shame and loneliness. I broke off several budding relationships because I just couldn’t bring myself to tell.

I finally moved to London, and for the first time went to a self help group for women living with HIV at Positively Women. It was a welcoming environment and a life changing experience. Free condoms and female condoms were abundantly available. I was given booklets which explained how positive women could not only have pleasurable sex without infecting their partners, but could even have, with the appropriate interventions, HIV negative babies 99% of the times.

I started my first long-term relationship since my diagnosis. It took me over six months to disclose. It was a real shock for him, but by that time our relationship was strong enough to stay together. This is why a lot of positive women delay telling their potential partners. If you tell somebody too early they will not know you enough to make a balanced decision. The irrational fears around HIV will take over the relationship. But if you wait too long, you will be judged as secretive and untrustworthy. How do you get it right?

After four years the relationship broke down.  HIV of course played a part in it. During the time we were together it was something we could not talk about. He never asked me about my hospital appointments or the results of my blood tests. What also put the relationship under stress was the fact that I really wanted to have a baby; I was in my late thirties and running out of time. He unwillingly cooperated to a few attempts at self-insemination:  it consisted in collecting sperm from the condom in a special syringe with a long plastic tube in  place of the needle and squirting it in my vagina. It doesn’t sound romantic writing it down and it wasn’t while we were trying to work out the practicalities of it. The instructions I had received at the hospital from a nurse, who had never done it herself, weren’t particularly clear. I didn’t get pregnant. At last I realized how much HIV had weighted on him during a horrid argument.  I will never forget him calling me a ‘AIDS whore’, ‘a bitch who deserved to die’. I ‘deserved to have HIV.’ He threaten me to tell all our friends so that they could know ‘who I really was’. ‘Nobody would want to know me’ he added. He later apologized. But certain words hurt more than broken bones and can not be erased.

Five years have gone from the end of that relationship.  And there is no ‘happy ending’. I am still single but I have become much better at handling disclosure. It is never easy. I now try to tell as soon as possible, mainly to protect myself. If I wait too long and I get too emotionally involved with a person, it becomes really hard to deal with the rejection.  I know many positive women who are in happy relationships with negative men who stay uninfected, but somehow things have been more difficult for me. At least I haven’t given up, yet. I often meet women in support groups who are too scared even to go on a date, because of the current fear of being investigated or taken to court for criminal transmission of HIV.

I think my story highlights some important issues. Women who become infected with HIV are often young vulnerable women, just as I was, with mental health issues, low self-esteem and problematic drug or alcohol use.  Once you find out that you have HIV those issues don’t suddenly improve or go away. However society expects you from now on to take all the responsibility of managing your intimate relationships with openness and assertiveness.

It was very hard for me to learn, and had I not become part of a collective of women living with HIV I don’t know if I would have even survived.

Nadja Benaissa in the UK Media

The past week has been intense.  I was very anxious about the media response to Nadja Benaissa’s case.  Overall it has been good.  Journalists seemed to be much nicer to Nadja then they had to Sarah Porter who had been called by the Daily Mail ‘Pure Evil’ and The Sun ‘AIDS Avenger’. This time The Sun had a not great, but more neutral,  headline: ‘Pop Star Sorry for HIV Deceit’

I took the plunge, and I was interviewed by Jerome Taylor from The Independent , with my colleague Angelina Namiba.  I was glad it resulted in a very good article, where our views were not distorted: ‘HIV Is No Longer An Epidemic, But Stigma Is’.

Women’s Hour on Radio 4 contacted me as well to be interviewed on Nadja Benaissa’s trial. I was very excited about it because the programme is followed by over 5,000,000 listeners.  But in the end they didn’t choose me. They had a German journalist, a legal expert, and a policy person from Terence Higgins’ Trust. It was an intelligent and well-informed discussion. However I think it would have been much more powerful to have somebody living with HIV on the program.

Other good articles were written by:

• Zoe Williams on The Guardian with the controversial title ‘If Sex With HIV Is A Crime So Is Swimming With Verrucas’.

• Joan Smith: ‘The Woman In The Dock Can Be Victim Too’ in The Independent on Sunday.

• Anne Johnstone: HIV Women Deserve Sympathy, Not Prison, on the Herald Scotland.

• Gisela Fiedriksen:  HIV Hysteria – Pop Star Is No Angel, But Neither Are Persecutors, in the international edition of  Spiegel.

What really got me however was the awful comments by the general public on the internet versions of the articles.

It just hit  me how many people in the world still view us with pure hate.  As if this could have never happened to them or their loved ones. As if they had never had unprotected sex. As if they  always discussed their sexual history and STD with potential partners. As if they had never lied, or hidden something they felt ashamed of, and hurt other people in shameful and dangerous way.

I fear those bigots and I open my inbox with anxiety,  fearing there could be a hateful email or comment.

Still I have no news on Nadja. I thought we would have had a verdict by the end of last week, but nothing has appeared on the papers. If my week was intense… how was hers?!?

Solidarity with Nadja Benaissa

‘Nadja Benaissa, a singer from German girl band No Angels has admitted to having unprotected sex with several partners without warning them she was HIV-positive.’ Reports today the BBC.

Journalism needs to be matter of fact. I suppose this sentence is fair reporting. It’s the BBC after all.

A video shows Nadja entering the court room, a nervous smile, her hands clutching the chair as in search of some form of security. It must be crucifying to be judged for such a crime. Almost like being a rapist.

Nadja was diagnosed with HIV in 1999.  She was 17 and pregnant.

Now, over ten years later, she has been accused of grievously body harm and attempted grievously body harm. This is because between 2000 and 2004, the years immediately following her diagnosis, she slept with three men, without disclosing she was HIV positive and without using a condom.  One of the men has since become HIV positive.

For those of us who are quick to say: how could she? I would like to ask a few questions: could you imagine finding out you are pregnant, and that you also have HIV, at 17? Can you imagine the fear that you could possibly infect the baby, and the anxiety that the medications you need to take in order to prevent the transmission may harm you and the baby? Can you imagine the fear for your own self of dying a horrible and shameful death? How would you tell your partner, or your ex, or the person you are hoping to have a relationship with? And what could the consequences be?

It is not surprising that many HIV+ women’s networks such as ICW and PozFem UK have actually made recommendations to test women before they get pregnant, and not just use us as easy targets for public health interventions.

Nadja’s case has been given a lot of publicity. She was arrested in the limelight,  before a gig,  February last year,  and spent 10 days in prison before being released on demand. She is a pop star, and a black woman whose success has been very much based on her exotic physical appearance and sexual appeal.  The sexist and racist dimension of this story rings alarm bells. Why are we pointing the finger at her, ready to condemn and constrain? What else is at stake? What needs to be controlled?

It is almost impossible to prove scientifically, beyond doubt, that somebody infected somebody else with HIV. But I think that the scientific argument is not the most important in this debate. It is the human argument that is crucial. It is the hard task of taking a deep look at the  complexities of how we relate to each other, especially when sex and emotions are at stake. It is about understanding how deeply HIV related stigma cripples relationships for all of us. How it still affects the ability to disclose and negotiate safe sex for the person who is HIV positive, especially a young woman, or just to bring up the subject, for the untested, or HIV negative partner.

I hope the jury will be able to put themselves in the shoes of  a newly diagnosed young woman. Being diagnosed with HIV is  a truely terrifying and paralyzing experience. To help them I would like to use the words of Esme, a PozFem member: “The shock was enormous. There were tears. I went terribly quiet and immediately retreated, withdrawing into a world that took me nearly five years to return from. Sometimes I feel as I still exist there. A place that is lonely, shameful, and damaged, where my own body is my enemy and the person I blame is myself’ (Positively Women Magazine 2008).

If Nadja will be found guilty of th charges she may face a 10 years sentence.

More detailed information and comments on Nadja ‘s case can be found on the excellent blog Criminal HIV Transmission by Edwin Bernard and in his article on The Guardian.

You can learn more on why criminal prosecution of HIV transmission harms women here.

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.

How do you become an activist?

I have been discussing with some of my HIV positive friends and fellow activists: how do you become an activist? What motivates you, what inspires you?

One of the answers was: you are self appointed, you make yourself one. And maybe it is partly true.

Sometimes I feel I am doing what I am doing, because nobody else (or just a few others) want or are able to do it. Who wants to be known for having a sexually transmitted disease? What will be the consequences of being so open about my status? I do fear sometimes that some enraged old lover may find this blog and come looking for me with a machete, but I hope that my cat Caspar will defend me fearlessly.

I would like to know more about the moment, or the process that pushes you and makes you step up.  What sparkles that? For me personally it was seeing so much unnecessary suffering in the women I supported. Witnessing women being beaten and abandoned by husbands, young women thrown out of their homes by their parents, gifted and talented girls gripped and paralyzed by the shame and low self esteem caused by internalized stigma. I felt that if I didn’t do something to stop this, if I didn’t try to act on the cause of such violence, I was almost an accomplice, how could I not do something?However, I also soon realized that you can not talk about HIV without talking about power, how it is distributed in our society, and how those who have less, or none, are so much more vulnerable to this small bug called HIV. You can not talk about HIV without talking of gender, poverty, the educational system, the relationship between rich and poor countries, homophobia, racism and a lot more. HIV and social justice are tightly interconnected. It is not just a limited struggle about this virus that affects me. It is about something much bigger: it is about justice.

Also I would have never taken this big step with all the risks involved if it wasn’t for the inspiration I had from other women living with HIV who had already started. We follow on the steps of those who walked before us and we hope that others will follow on our steps. A West African proverb states: we stand on shoulders of our ancestors.

My ancestors are many:  people who dared in face of incredible difficulties to do something to change the minds and hearts of those around them and thus initiate a much bigger change.

One of the ancestors on whose shoulders I stand is Rosa Parks, the civil rights movement leader, and this is how she commented on her decision not to give up her bus seat to a white person, and thus initiate the historical bus boycott:

The only tired I was, was tired of giving in. I knew someone had to take the first step and I made up my mind not to move.

Rosa Parks

World Aids Day

World Aids Day is the one  day in the year when the world remembers about HIV.

Most of the time this means pictures of somebody dieing in Africa. I don’t dismiss the fact that the African continent is carrying the heaviest burdern regarding HIV. However I am concerned that we often avoid looking in our own back yard:  how HIV is affecting people in the UK and how we respond to the epidemic here. It is extremely important that countries like the UK lead by examples and practice what they preach. I have previously talked about how the UK, who supports ‘Universal Access to Treatment’ for developing countries has excluded HIV from a list of communicable diseases that should be treated in the whole population, including failed asylum seekers and immigrants without papers. Why HIV has been singled out as an infectious illness that can not be treated in this country in those already extremely marginalized populations?

Stigma.

It doesn’t only exist in the hearts and minds of people, but also still survives in core health policies and institutions.

This is why I am so happy this World Aids Day saw the release of the first findings from the Stigma Index roll-out in the UK.

Here is an extract from the IPPF press release:

‘ New research led by people living with HIV shows physical and verbal harassment a common reality for people living with HIV in the UK.

Newly published research documenting how people living with HIV in the United Kingdom have experienced stigma and discrimination – and have been able to challenge and overcome it – makes it is clear that the problem is still widespread within UK society.

The research, conducted over the last 6 months, asked people to report their experiences in the last 12 months.

Key findings show that people living with HIV face significant stigma and discrimination:

• 21% (185 of the 867 participants in the research) of people living with HIV had been verbally assaulted or harassed
• 12% had been physically harassed because of their HIV status in the previous 12 months

The Stigma Index is the first research to comprehensively document the experiences of people living with HIV that is driven by people living with HIV.

The results highlight concerns that stigma and discrimination within some parts of the NHS are denying comprehensive and quality care for some people living with HIV and can create obstacles that impede access to care and support services:

• 146 participants (17%) report being denied health services because of their HIV status at least once in the previous 12 months
• 18%, nearly 1 in 5 people, stated that it was clear to them that their medical records were not being kept confidential, a further 42% of participants felt uncertain that their medical records are being kept confidential

Research has indicated there is a need to address attitudes and develop strategies for change, to educate and support the health service to meet the needs of people living with HIV more effectively.

More positively, the research makes it clear that people living with HIV are at the forefront of confronting and overcoming devaluing attitudes, speaking out against prejudice and challenging stereotypes:

• 45 % of people living with HIV had personally confronted, challenged or educated people who were stigmatizing them
• 84 % had supported other people living with HIV ‘

More information is found at the IPPF site.

The findings of The People Living With HIV Stigma Index were presented on November 30th at the Houses of Parliament.

Andy Burnham, MP, Secretary of State for Health, had been invited but couldn’t come and nobody from the Ministry of Heath participated to the launch. Also the ex vice-president from Zambia had been invited , but was absent. What does this tell us about political leadership on the issue of stigma?

In spite of the silence of our politicians I would like to say that people living with HIV did a lot of work:

Adrienne Seed, Poz Fem Regional Coordinator for the North West was interviewed on This Morning on ITV. You can watch her here

Alice Welbourn, also a PozFem member, wrote a moving article for Open Democracy: When Things Fall Apart, where she charts her own personal experiences of what she learnt about HIV, about herself and about others during her early years of living with her diagnosis. She reflects on how traumatic experiences can also be ones of growth and self-knowledge – and how HIV has much to teach us all.

I also had a few opportunities to raise awareness: I recorded 15 interviews in conjunction with Mac AIDS Fund which have been broadcast on over 120 radios on the 1st of December. I also published an article with Open Democracy on HIV and Gender Violence ant this blog was featured in ‘The Best of the Web’ by The Guardian On Line and received hundreds of hits.  I was also featured in the World AIDS Day campaign by the National AIDS Trust.

I know many of the Regional Coordinators from PozFem have been up to several things, so if you are reading this blog and would like to share your contributions on World AIDS Day it would be great to hear it.