Silvia Petretti, HIV Activist

Here is the speech I gave at The Sophia Forum Round Table meeting, at the House of Lords yesterday.

” I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.

I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the ‘vulnerable’, or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.

©IAS/Steve Forrest/Workers' Photos

I want to make this clear. I am completely in support of early testing and universal access to ARVs. However I am pretty doubtful that the ‘Test and Treat’ approach can work in the real world as an effective prevention strategy.

Untangling what works in prevention is not an easy task, and this is probably why the HIV epidemic hasn’t been halted yet. One of the  most interesting approaches to prevention is the concept of  ‘Combination Prevention’.  This has been around for the past few years and was prominent at the last International AIDS Conference Vienna 2010.

As we know, HIV is a complex virus that can not be stopped by one single drug once it is in our bodies.  This is why a combination of 3 or more drugs, is used to attack it from different angles.  Likely, the use of several strategies to prevent the virus to even enter the body is seen as ‘Highly Active Prevention’ or ‘Combination Prevention’.

As in HIV treatment there are many classes of drugs, so there are different components of Combination Prevention.

Behavioural: start using condoms and femidoms, delaying starting having sex, choosing partners who have your same HIV status (sero-sorting),  having not penetrative sex, using clean injecting equipment etc. .

Bio-medical Interventions: access to ARVs for PLHIV, ARVs used as a Pre Exposure Protection ( PreP) or Post Exposure Profilaxis (PEP), Microbicides (when we will have them!), Male Circumcision etc

Structural : availability of harm reduction for drug users, gender violence, gender inequity,  poverty, homophobia, racism, HIV stigma etc

Those ‘ingredients’ need ‘boosters’, like some HIV drugs, to make things happen:

Political will: the support of political leaders, governments, multilateral agencies.

Economic investment: Money is needed to carry out research, as well as for delivery of all  prevention aspects. Obviously AIDS funding is an increasing struggle in the present economic climate.

Community Engagement: People who are infected or at risk of becoming infected need to be involved at all the stages of prevention planning and  implementation .

One of the prevention success stories presented at Vienna 2010 was the evidence from the World Bank that cash transfers  to young women in Malawi and Tanzania were associated with lowering HIV infections among those adolescents. This clearly shows the links of between a Structural element (poverty/ access to cash) and Individual behaviour (not using sex in exchange of money/school fees or other benefits) and how they can result in preventing  HIV infection.

One of the of the major challenges of  Combination Prevention is the need of more evidence and of clear  evaluation processes . It is very difficult to understand what is working in the short or long-term and how the different elements interact and influence each other. Social scientists are looking now at developing a Combination Evaluation!

7000 people are infected with HIV everyday.  Complacency in not an option in prevention. UNAIDS  has called for a Prevention Revolution.

Here is the video launching the campaign: HIV Infections: How Many People a Day?

©IAS/Steve Forrest/Workers' Photos

The past few weeks have been quite hectic and I have been meaning posting about this for ages but between the BHIVA conference, The Women and Europe Advisory Board meetings, several deadlines and a high heels heavy bag carrying  induced back ache, I have been kept away from blog writing against my will!

Anyway today was the last day to submit a response to the White Paper and I was able at the last-minute to put together the views of PozFem members that gathered at the last meeting in Manchester, on the 18th-19th September. Those views had already been included in a wider response by the Women and Health Equality Consortium, but I felt it was important that we did a response that was HIV specific.

Our PozFem meeting was the largest direct consultation of HIV+ women in national policy. Thirty five women from all over the UK, including Northern Ireland, Scotland, Wales and of course England. The age range was exceptional from 26 to 68. We covered almost all continents, with Africa the Caribbean, Asia and Europe represented.

One of the principal aspects of the White Paper is the centrality of patient involvement and patient choice: ” Nothing about me,  Without me’.

PozFem members questioned how this applied to people living with HIV. We listed what we viewed as the biggest obstacles to accessing health services and our meaningful participation:

• Stigma – perceived or experienced

• Confidentiality: not being maintained with serious consequences for those who are ‘outed’

• Culture: Coming from cultures where health is not openly discussed

• Language: Especially for those who are not native speakers, or with low literacy levels, many policy papers and discussions are not easily accessible

• Other prejudices: Racism, drug use, ex offenders, homophobia

• Lack of knowledge of the system: leading to low rates of access to health care

• Lack of resources: The populations with HIV in Britain are often from marginalized communities unable to work or with no access to public funds.

• Lack of time especially for working women with caring responsibilities

A participant to our consultation meeting stated:

“I am HIV positive and live in a small village. I am scared that people will find out and this may also affect my children. How confidential are my notes? Can the nurse, or receptionist see them? I always travel to the hospital for any health issue even if it’s over an hour drive… How am I expected to get involved?”

To support and increase involvement of PLHIV in Health Watch Boards and other participation systems, we recommend that peer-support services which aim to develop confidence, voice, and advocacy skills of PLHIV are supported both at local and national level.

Changes in Commissioning

A fundamental change proposed by the White Paper is to abolish the Primary Care Trusts, to cut management costs, and move health commissioning in the hands of GP, who, it is assumed, have a better understanding of health needs at community level. To take up this role GP will gather together and form commissioning consortia.

We are concerned that GP’s consortia may not be well placed to commission HIV services and Sexual Health. Because of stigma and other prejudices (homophobia, racism, negative attitudes towards Injecting Drug Users and people who are or have been in prison, etc.). Many of us living with HIV have fears and difficulties disclosing HIV status to our GP and accessing health services at this level. PozFem is concerned that the complex social and health issues many of us face would not be understood and appropriately addressed at this level without a serious investment in training and confidence building for GP’s and patients.

We recommend that specialized HIV services continue being commissioned at regional/national level. This will allow better drug pricing, as well as retaining the expertise gained in the areas.

We also recommend that expertise around Sexual Health, HIV (especially testing) is developed at GP and GP consortium level, and that people living with HIV play an active role in delivering trainings and supporting this development.

We also recommend  the creation of  ‘Equality Champions’  roles to be involved at every level in the planned  Health Watch Boards, Health and Well-Being Boards, National Public Health Services and Local Authorities.

To conclude I would like to include some quotes from PozFem members on some crucial aspect of providing health services for women living with HIV.

Peer Support Services:

“The Government needs to recognize that peer support is more than just ‘having a cup of tea in a church hall’. It has health outcomes: it improves adherence to medication (which saves a lot of money because people do not develop resistance and move to more expensive drugs), better mental health, coping strategies, disclosure, prevention, challenging stigma, patient engagement. We are the experts.”

Representation at all levels

“Not just at grassroots level. The Government needs to implement the Greater Involvement of People Living with HIV (GIPA) – as recommended by UNAIDS.”

Addressing Stigma

“This needs to happen throughout government sectors. Especially Health, Education and Employment.”

‘Decreasing stigma with an effective and pervasive anti stigma campaign will also have an effect on testing. Lots of people don’t test or test when they are really ill because of the stigma”

Being Heard

“We need to be really heard, and our views incorporated in policies. Not just ticking boxes. We would like to see what we do get in return for our participation in consultations. What’s in it for us?”

One Thing I Have Learnt Since My HIV Diagnosis

Posted September 29

I have learnt to love myself

That I can live

I appreciate every day

To be grateful, count my blessings

I learned I can make friends

That there is new life after a HIV diagnosis

To know my body and recognise when something is wrong

Appreciate every day of life I have and make non judgemental female friends

Not to judge others, to appreciate people more

To be selfish and arrogant in a good way

I can have fun and be strong for my daughter

Joining PozFem has enabled me to disclose my status without fear

That life goes on

That HIV is a great leveler, makes no difference what or who you are

To live life for today

I learned to be blessed and not be as judgemental as I was before my diagnosis

HIV has helped me live life and made me stronger, I am now able to do talks, challenge misconceptions around HIV as well as judgemental attitudes

Medication alone is not the answer, that psychosocial support is just as important in learning to deal with HIV

I have more inner resources, and that there are people who are worse off than I am

I don’t have to tell everyone everything about me

I now have hope and courage to deal with the challenges that HIV presents to me

Having HIV is not the end of the world

Accept myself and to take care of myself and my kids

I am stronger than I thought I was

Life would have been better if I did not have HIV, however, I have learnt to use condoms!

I am now able to tell people my status, I can and I am supporting newly diagnosed women and I have now been able to disclose my status to my children

I am strong, that never having been an expert in anything,  I am now an expert in HIV

To focus on positive things

That being HIV positive is not being dangerous, and I have now been able to disclose my status to my children and my grandmother

I have learnt to love myself, start a degree course in events management

There is life after a diagnosis, that I can live and see my children and that I can make friends.

PozFem Members Manchester September 2010

‘Criminalisation’ increases stigma and punishes vulnerability

Posted September 20

X was convicted of grievous bodily harm through the reckless transmission of HIV, and was sentenced to 32 months in prison in June 2006. She told her story to Positively Women Magazine:

Sometimes you take the wrong turn in life; you can get lost but hopefully you find or work yourself back on track. It’s taken nine years and cost me my liberty, job, mental, physical, and emotional health, plus a year away from my daughter”s life.

My name is X I was diagnosed with HIV in 2001 and literally shut down.

I lost my freedom and anonymity in this world, which still has repercussions. Will it all rear its ugly head again one day? Will somebody remember? This is my biggest fear. ‘Criminalisation’ increases stigma and punishes vulnerability by assuming the worst about people it victimises.

The investigation surrounding my case felt like a ‘personal mission’ on behalf of the police and one officer in particular. The intrusion into my home and the way I was treated by the investigating officer was vindictive and uncompassionate and to this day leaves a bitter taste in my mouth.

The investigating officer leaked my story to the media; this led to him being taken off the case. However, he still felt driven enough to show up at court on the day of my conviction. The force need more training in understanding and handling of cases of HIV transmission.

HIV ‘criminalisation’ is the far-reaching consequences, there is no protection for your family. I was forced to disclose my status to my daughter because of malicious gossip that started in the school playground at a time when we were just re-adjusting to life together and at an age, I felt, she was too young to have to deal with this information, though I am happy to say she coped very, very well.

Going to prison was the most alien thing I had ever had to do in my life. Leaving my son tore my heart apart; it left me feeling guilty and eventually redundant as a mother. What if something happened to him whilst I was locked away? I should have been protecting him and I just felt so hopeless. I would wake in a panic asking myself what if he lost that bonding with me? I felt as though I was drowning. In the meantime my child was growing up without me, losing his first tooth, learning to tie his shoe laces…

Like so many others behind bars I believe that I would have achieved so much more by being given a community sentence and getting the correct support and help. However, the vindictive nature of current political legal thinking combined with media frenzied hysteria demanded incarceration; it seems to have made the knee jerk reaction an art form; following rules and regulations that cannot be supported by logic.

There is little of the prison service that makes any sense to me, it’s a ‘one size fits all’ policy, but common sense tells you this cannot possibly be the case. The prison service is incapable of differentiating between the state of depression and feelings of suicide. It is incomprehensible that people with mental health issues can ask for help, there is none.

I want people to know that losing your liberty is so much more. I want people to know that being sent to prison is to enter a world of fear, anxiety, and daily uncertainty. I remember finding my control, something that only I could switch on and off and not the officers not the prison, not the system and it felt so good… I pushed my fingers further and further down my throat and at last I had learnt how to make myself sick. It was such a release and felt so good! They had destroyed my soul, my relationship with my son and I hated them for the pain.

Having my life constantly in the media made me feel exposed and vulnerable. I was stripped of everything. When inmates gossiped, I felt hounded by the pack mentality, when people do not know the truth they can be very cruel and ignorant it’s a very scary place to be locked in amongst people with ill feelings towards you.

I was rigid with fear at times each day having to try to justify myself to people. I felt I was going insane, totally isolated. Sometimes there were no words for the dark spaces between breaths. Grief was a blanket that enveloped me and nearly suffocated me.

I was luckier than some high profile cases and I soon began to make friends and be accepted on the wing. My relationship with the officers was good and when stories were leaked to the newspapers, they managed to halt the delivery at the gate, although as much as they tried magazines, newspapers still managed to circulate without a total ban on these things it is impossible to detect every story.

What was extraordinary is how much strangers cared. The letters of support poured in. It was touching but confusing and slightly frightening. It is a big responsibility to return so much affection. To know that people you’ve never met and never will can feel so warmly towards you.

I am happy to say that it was fairly easy to readjust to being home and outside again and I had the opportunity to have weekend leave before my release which quashed a lot of fear around the media and my being recognised. Before my release I made sure that I had support networks in place, I had a brief stay at a Respite Hospital, I reconnected with my counsellor and most of all I had Sophie at Positively Women. Sophie had supported me all through my prison sentence. I also made referrals to an eating disorder clinic to tackle the demon I had bought home with me, bulimia. My friends were supportive and with me all the time for the first month.

Sophie was a lifeline for me in and out of prison. I do not believe I could have coped as well without her support it was so precious, without Positively Women I sometimes wonder if I would still be here today! Sophie gave me hope, strength and a way of looking forward instead of continually going backwards. Those were small steps but were to be very powerful steps, knowing that there was support, people whom cared and believed in me helped me to start believing in myself again.

The visits were also a welcome relief from the boring existence of prison life they made me feel like a person again and not ‘that criminal’. I did not like myself feeling down and ugly with HIV and here was a person who took the time and patience to help put me back together again.

Finally the day of my release arrived, I was scared, excited, sad and unsure. My first few days were spoilt by media intrusion trying to get my story, getting in my face whilst out on a school trip with my daughter. I could not believe that they would sink so low, but nothing could take away my daughter again and this was the best feeling in the world! I lost a year of my daughter’s life, how do you give that back? Through guilt and trying to make sure he wants for nothing!!!

Life today revolves around my daughter. I still have dark times where I allow the HIV to have power over me, the days I despise it and question ‘why me?’ Days I think I will never be the same again, days that I have under the duvet and wish that by some miracle it was all a mistake!

I appear confident on the outside but inside there is still a battle raging with low self-esteem and confidence. I lost my job at a company I loved to work for and still miss so very much. I wonder when I will feel confident enough to go out and face the interview process and CRB checks. Until then I try to focus on the positives that have come out of my situation, the family that are back in my life, my adoring and very talented daughter, my trusting and loyal friends and the fact that I am alive and I am FREE.

X was convicted of grievous bodily harm through the reckless transmission of HIV, and was sentenced to 32 months in prison in June 2006.

Safer sex skills don’t come with HIV

Posted September 3

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.

©IAS/Steve Forrest/Workers' Photos

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,’ reported the BBC today.

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 courtroom, a nervous smile, 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 in February last year,and spent ten days in prison before being released on remand. 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’s a hard task 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-positive is a truly 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 is found guilty of the charges she faces a ten year sentence.

More detailed information on Nadja ‘s case can be found on the excellent blog Criminal HIV Transmission.

©IAS/Steve Forrest/Workers' Photos

TODAY is the last day of the XVIII International AIDS Conference in Vienna and for the first time the plenary session was dedicated to HIV in Prison.

Dmytro Shermebey, one of the leaders of the All Ukrainian Network of People Living with HIV opened the session.

He spoke of his personal experience of spending nine years in a Ukrainian prison. While he spoke, pictures of prisoners and prison cells were projected on the massive screens in the plenary hall. Dark spaces filled with emaciated young men, barely over boyhood, with spider arms, reminiscent of Auschwitz.

Prison meant: hunger, lack of sanitation, overcrowding, lack of air. It is not surprising that to cope with those conditions prisoners had to use the most powerful painkiller in the world: heroin! Harm reduction, drug substitution therapies, clean needles and condoms are not available in Ukrainian prisons, a problem that majority of prisons around the world share.

Dmytro recounted how syringes were shared by prisoners. The same blunt needle would be sharpened on a stone over and over again in order to be reused. It is not surprising that HIV prevalence in the global prison population is always much higher then in the general population.

Today’s plenary showed the world that those young men were clearly not only deprived of their liberty, but also robbed of all dignity, food, and health: all fundamental Human Rights. Dymitro explained to us that he survived because he fought. But, many of his friends have died and are still dyeing.

I have been visiting women living with HIV in prison since 2001, when I started working for Positively Women (now Positively UK). Dmytro’s story made me appreciate all the good things in British prisons: above all access to ARV’s and methadone. Well, this was the experience of Positively UK’s outreach and peer support team, anyway.

However, I also know too well how damaging, traumatizing, and disempowering the experience of prison is, especially for women. So many of the women I see in prison have tragic pasts: addiction, abuse – including sexual abuse – neglect, and poverty are recurrent themes. Many may also be suffering from mental health problems.

One of the biggest problem about the situation of women in prison, even in the UK,  is that it is severely under-researched. For ‘security reasons’, everything about prison is very guarded.

From my experience of supporting hundreds of women, I can affirm that prison is very harsh for anybody, but the added burden and terrible anxiety of having to guard the secret of HIV make it doubly difficult to cope with.

In the UK prisons, women are a fast-growing population. According to the Prison Reform Trust Report of 2006 in England and Wales, the number of women with HIV has  increased by more of 200 per cent in the past ten years compared to a 50 per cent increase in the number of men in prison during the same period. At present, there are more then 4,200 women in prison in the UK.

This increase in the UK follows global trends towards a greater use and popularity of imprisonment and a lack of interest in constructive alternatives such as non-custodial sentences. Those would be particularly relevant to drug offenses and non-violent theft. Drug offenders in particular, would be better dealt with by therapeutically addressing their addiction.

Prison has a tremendously harsh effect on women, for several reasons. Firstly, women offenders are often the sole carer of their children. Their imprisonment and separation from the children can cause major psychological traumas, which are very difficult for both  mother and child.

This has grave repercussion for all of us in the communities were those children live. If a mother is the head of  household, their incarceration could result in the loss of their home, and serious disruptions to the lives of the children.

Since there are fewer women’s prison, women are more likely to spend time in a prison which is far away from where they live, so that visits from family and friends are extremely difficult. Women in prison can experience profound isolation, which has an effect on their often already compromised mental health.

Additionally, because there are few women’s prison, women convicted from a wide range of offences are often imprisoned together. This means that the overall regime will be determined by the maximum-security requirements of a very few high-risk prisoners. Overall, the prison system was designed to deal with male prisoners, because of this it actually often discriminates against women.

If you add to this bleak picture and hurdle of living with HIV, and the possibility of diagnosis while in prison, it is clear that there is an extreme urgency for a radical prison reform. The Prison service needs to take into account gender equity and the right to health of women prisoners.

A comprehensive reform of the criminal justice and prison system was called for in today’s plenary session by Manfred Nowak, the UN Special Rapporteur on Torture. He stated: ‘Prison Health is Public Health’.

I applaud the International AIDS Conference for having dedicated for the first time a plenary to Human Rights violations in prison. However, I hope that this is not a one off token session. I believe that it is crucial to discuss more of the gender dimension of prison and how it increases women’s vulnerability to HIV and negatively affects physical and mental health.

We still know so little about this, especially on a global scale. Hopefully we will do this in Washington in 2012.

SILVIA PETRETTI … DAY FOUR: EMOTIONAL EXHAUSTION, SEX WORKERS AND HIV…

IT’S ALL getting  a bit overwhelming!

The third day Wednesday, the theme for me was physical and emotional exhaustion. I wasn’t the only one.  Just by looking at people I could tell that many conference participants were experiencing an energy low. It takes a lot to absorb all the enormous amount of information, ideas and emotions that are present here.

In spite of this I managed to facilitate two sessions at the Women Networking Zone. One on women and networks, and another panel discussing the effects of laws criminalizing women’s sexuality.

I sat beside women from: Venezuela, Germany, South Africa, Malaysia and the US. We shared our different experiences of mobilizing and politicizing women in order to challenge laws that criminalise homosexuality, criminal prosecution of HIV transmission, and sex work.

At the end of the debate a sex worker from Malaysia took the microphone and said: “I have been a sex worker for 15 years, suffered a lot of abuse from the police, and this is the first time I speak up. It has taken me 15 years. But I will continue when I go back to my country. Having met all of you has given me the strength to speak up.”

One of the overwhelming aspects of this conference is the amount incredible personal transformations that take place in front of your very eyes. It is like watching an accelerated film of a field of flowers blossoming. I have learnt some huge lessons from the sex workers movement at this conference.

Today’s plenary (Thursday) included an amazing multimedia presentation by Meena Saraswati Seshu of Sampada Grameen Mahila Sanstha (SANGRAM), who are promoting a rights centred programme in Western India.

SANGRAM works with sex workers, men who have sex with men, rural women living in poverty and young people. Sex workers have become involved as HIV educators. They go in the streets to teach truck drivers and the wider community about HIV, STD’s and how to use condoms. Stepping up as educators has helped them to go from social pariah to community leaders in the response to HIV.

Here is the SANGRAM Bill of Rights presented at the plenary:

1. I have the right to be approached with humility and respect.
2. People have a right to say yes or no to things that concern them.
3. People have a right to reject harmful social norms.
4. People have the right to stand up and change the balance of power.
5. People have the right not to be rescued by outsiders who neither understand them nor respect them.
6. People have the right to exist how they want to exist.

Save us from savours!

SILVIA PETRETTI … DAY THREE:  HUMAN RIGHTS RALLY ‘RIGHTS HERE, RIGHTS NOW’…

TUESDAY at the International AIDS Conference has been dedicated, for me, once again to increase the voice and visibility of women and girls living with HIV.

But before I go into what I have done, let me share with you some great news that was announced this week: the results of a large trial on microbicides using the ARV Tenofivir.

A Microbicide is  a woman controlled prevention method. It can be a gel or a cream, or even a ring, that when applied to the vagina stops HIV transmission, and sometimes can also prevent other STDs. If you have never heard about them, it  is because we still don’t have an effective one.

This is why this research is so important. At this point, the trial reported effectiveness of around 39%, however it is probably higher, because adherence wasn’t very high in the long term, but this is a behavioural problem that hopefully can be addressed.

Personally it was a fantastic day, but a bit nerve wracking. In the afternoon I helped facilitate a workshop with Angelina, Sophie and Harriett, entitled: “Women Living with HIV Getting Involved with the Media. Why Bother?”

The workshop was held in the Women Networking Zone, an amazing space in the Global Village dedicated to foster debate and action about important issues for women and girls. The area is dominated by a washing line where bras and pants are hanging. For me this washing line highlights the intimate and personal aspect of women’s discussion and political involvement.

The workshop focused on understanding what we can gain by becoming more visible in the media and building skills, so women will feel more confident at giving interviews. Our aim was to get some of the women participating at the Vienna conference to be interviewed and publish their stories in a twin edition of Positively Women Magazine (in English) and DHIVA magazine (in German). In the end, six women stepped forward. How’s that for increasing the voice and visibility of HIV positive women!

The Women Networking Zone also hosted the launch of WeCare + , a newly established European and Central Asian network of women living with HIV.

That night I had the most nerve wracking and exhilarating time of my life. I was scheduled to lead the Human Rights Rally alongside Julio Montanier, the President of the International AIDS Society, Michel SIdibe Director of UNAIDS and Rolake  Odetoyinbo, an amazing woman living with HIV from Nigeria. There were many more amazing activists and politicians leading the march, but unfortunately I do not remember everybody’s name.

Thousands of us marched through the historical centre of Vienna. Black, white, gay, sex workers, trans-gender, male, female and anything in between. We arrived in the beautiful Heldenplatz, at sunset, and we were shoved on stage to make our speeches before the singer and activist Annie Lennox performed.

Here is my speech:

I am Silvia, I am a woman living with HIV.

Today I would like to talk to others who like me share their bodies and their minds with HIV.

Here in Europe we are lucky enough to have access to treatment. But, we all know too well that it takes more then a handful of pills to live with HIV.

Yes the virus in our blood can now be undetectable, but stigma is almost everywhere.

Many of us live lives of fear and shame. Women like me even fear to start a relationship or feel shame about what people think of us if we have babies. We still fear to be rejected by our families and loved ones.

And it is not only fear. It is also reality. Many of us still experience discrimination even when going to see a family doctor or a dentist.

Those of us who are in prison can be bullied, and attacked, without protection from those who are responsible for them.

I could go on and on with the violence and lack of support which is still the daily reality for many of us.

Today I would like to ask you, you who are HIV positive like me: what is the answer to this? What part can we play?

Personally I made the choice in 2005 to be open about my status. It is one of the most powerful tools I have to challenge stigma and to stand up to any discrimination.

It is our birthright to be treated with dignity and respect, but it is our responsibility to demand that others fulfil this right.

Stigma will not end if we are invisible.

Women and girls what do we want?

Human Rights Now!

SILVIA PETRETTI … DAY TWO: LEADERSHIP BILL CLINTON AND ‘BUCKET LISTS’…

THE THEME of Monday, the first day of the conference, for me has been leadership. Maybe it is because I was facilitating a workshop on developing leadership skills for women living with HIV, with my comrades Angelina Namiba and Inviolata Mmbawavi.

During the session we tried to address the issue of openness. We asked participants: on a scale of one to ten.  How open are you about your status? Where would you like to be? What needs to happen for you to move just one point on this scale?

After those questions we aimed to build a tree of action with post-its on a flip chart.

We asked participants:

What can you do personally to move forward and be more open as an HIV positive woman leader?

What can you do to move forward as a leader with the support from other people living with HIV?

What do you need to campaign for your government to do?

The aim of this exercise was to inspire a process of moving from the personal, to the collective to the political, and understand how all those elements are part of one continuum.

Those questions kept resonating in my head and manifested during the course of the day.

The plenary featured Vuyiseka Dubula the Director of Treatment Action Campaign, the organization instrumental in making HIV treatment affordable in developing countries: thanks to their tireless campaigning. She exemplified the power of openness.

A South African HIV positive woman from the township advocating for Positive Health Dignity and Prevention. This is an approach to prevention that acknowledges equal responsibility of negative and positive people in the transmission of HIV. People with HIV in this paradigm are not seen as mere vector of infection but as actors who can promote prevention, within a context where human rights are fully respected.

Bill Clinton also spoke at this first plenary. He may no longer  be the President of the USA , but made a very strong call for political action and for continuing funding the epidemic. Clinton spoke for nearly an hour and it would be impossible for me to capture his incredible skills and charisma as a public speaker.

Among the many things he mentioned was the need for new fund raising strategies such as those adopted for Haiti earthquake, where a huge number of people gave small amounts, through text messages and the internet.

Obviously he had to speak quite a length on how it is crucial at this point in history, in which we have reached some tangible goals, not to retreat because of the economic crisis.

He made once again the point that the economic argument for promoting Public Global Health, needs to be made stronger: “Health Care is not just a right is an economic investment,” he said.

To conclude his speech he made a ‘bucket list’,  things he would love to see happen before he kicks the bucket: “What I really care about is to see my grandchildren, an for all grandchildren of the world to grow to know their grandparents.” We have done good but we need to do better if we want those two generations to stay healthy and meet.

Bill and Vuyseka represented for me, some answers to the personal and political questions about leadership I had asked the participants of my session. Even though Clinton had been harshly criticized while he was in power, for doing very little for people with HIV.

My question on what we can do as people with HIV to move our leadership forward was addressed in the last session of the day: GIPA at the Grassroots Level and Beyond. GIPA means: Greater (and Meaningful has been subsequently added) Involvement of PLHIV.

It was historically born in the Denver Principles in 1983, and signed as a full declaration by 42 countries in 1994. GIPA means that PLHIV should be involved at all level of decision making in the response to the epidemic.

During this session many examples of collective action by PLHIV were exemplified. The most striking for me was the Ukrainian Network of PLHIV, one of the largest networks of PLHIV in the world with over 200.000 members,  100 of them are open about their status.

They are the principle recipients of the 6^th round of funding from the Global Fund. In spite of the fact that most of its members are or have been drug users (a group not exactly famous for political action and expressing power) they have made ARV’s and drug substitution therapies a reality in their country.

It has been another amazing day here in Vienna. One of the most moving events has been that at the end of our session on leadership two women, one who had been positive for 17 years, and one for five, disclosed their status to the group. It was very emotional, but it was also an honour to witness those two women take their first step towards leadership.

DAY ONE – OPENING CEREMONY – STIGMA AND HIV PROSECUTIONS

IT IS 8:45am  on a Sunday morning and I am sitting in a session room. The theme of the session is ‘Gender Gaps Stigma and Sex’. Sunday mornings don’t get much better then this, right!

Sophie, Rebecca and I have just arrived, but we are wasting no time. The conference has not even started yet,  but Rebecca  has her first presentation at an International AIDS Conference, so obviously Sophie and I want to be there to support her.

It is a great session that highlights the progress of the Stigma Index around the world. In a nutshell the Stigma Index  is a  global  participatory research by and for HIV-positive  people to measure levels of stigma.  This session focuses  on how stigma manifests itself in the lives of women in different countries.

It was clear from all the presentations that  stigma affects women very heavily in the domestic domain and that it is strictly linked to gender violence. Now that I read my notes some of the statistics  give me goosebumps. In Dominica Republic 34 per cent of women has been shoved or pushed by their partners in the last 12 months and 11 per cent  has been attacked with a knife, a gun or another weapon.

But stigma doesn’t just express itself  as violence in intimate relationships. It is chilling, but it is reported that health providers, and especially family planning clinics,  are the ones who  proactively discriminate against HIV-positive women.

In the Dominica Republic 30 per cent  of women were advised to be sterilized after testing ( but only 17 per cent  of men).

What is more horrific is that one of the condtions of provision of ARV’’s  for women was sterilization. This was reported  by 21 per cent  of the women interviewed. The picture portrayed by the speaker from  Bangladesh wasn’t much different. Shockingly  84 per cent  of those interviewed reported that they had taken the decision of not having children.

We still do not have the results of Stigma Index research in high prevalence countries like Zimbabwe or South Africa, but they will probably add more lights on the links between HIV related stigma, gender violence and obstacles to access safe sexual health and reproductive services for women with HIV.

Finished this session we jumped in a taxi to take part in a satellite session on “Criminalization of HIV exposure and transmission: global extent, impact and way forward’. How is that for a Sunday lunch!

This was another heavy session featuring speakers from the UK, South Africa, Canada and UN. It was really valuable because it alerted me to the GNP+ Global Criminalization Scan which is attempting to report all the cases where PLHIV are prosecuted for criminal exposure and transmission in the world.

Up to now 600 prosecutions  have been reported, but this probably is an underestimated. What is really scary is that in the past ten years more then 20 countries have introduced new laws to prosecute HIV transmission. Another important resource that was shared in this session was the booklet 10 Reasons Why Criminalization Harms Women, by the Athena Network.

There would be a lot more to say about this session, but I am running out of time and I need to go to the conference opening ceremony. If you are interested in the theme of criminalization please refer also to Edwin Bernard excellent blog Criminal HIV Transmission.

The Opening ceremony was a long drawn affair as usual with 20,000 people  from 185 countries in attendance.

I was moved by the speaches of the Russian activists Sasha Volgina and Vladimir Zhoviac. Their presentation was titled ‘We are dying less but we are dying faster’ and drew attention on the struggle of drug users in Eastern Europe and Central Asia.  Only 1 in 100 drug user  has access to ARVs.

Overall the update on the epidemic was quite optimistic with reports of 10 out of 20 high prevalence countries where  there has been a 25 per cent  reduction of new infections.

The opening also included a very good session by Dr Sharon Lewis on Progress For a Cure, which is quite an amazing thought.

Political presence was good with speeches from Austrian Ministry of Health and the President of Austria.

Demonstrations from activists were really vocals and highlighted the need to continue to invest in AIDS, in spite of the recession. How come governments found money to bail out banks, but there are insufficient funds  to really make universal access to treatment, prevention and care a reality?

By for now… Hey,  here is a picture of me before entering the conference centre this morning. I should probably take another one at the end of the conference, kind of before and after…Hopefully I will be able to pace myself and it will not look too bad.

Click here to read more blogs from Silvia

I am about to pack for my trip to the International AIDS Conference in Vienna and I am having a personal crisis.

What should I pack? I know it is frivolous, but if I don’t look ‘good’ (at least to my standards) my confidence goes, and I need all the confidence I can gather to facilitate the many sessions I have been asked to participate in. Plus, it takes lot of guts to face the 25.000 people who will be there.

The public speaking trainings I have undretaken has drilled into my head that 90% of communication is not verbal, and that how we look, how we move, how we sound is actually extremely important in delivering our messages. So, there you go, it is not just mere vanity.

Above all, I believe it is important for me, as a woman publicly living with HIV, not to look like a victim: This is why I am thinking of packing an extremely large number of high heel sandals. How could I possibly feel or look like a victim when I am towering everybody from my five inch heels?

Still it is a difficult choice. I look at my (never too many) shoes and ask them: who will come with me? My golden sandals, with a cone heel at a precarious angle, those grey stiletto pumps, so chic, of my vertiginous open toe boots? They all look gorgeous and they all seem to say: “Me! Me! Me! Take me to Vienna!” I look at them and sigh. I can’t. It’s impossible. Deep inside me , I know. I can’t stay up from six in the morning until late at night, running across the endless corridors of the conference centre in those shoes. I would get blisters, twisted ankles, fall badly, need a stretcher and an ambulance.

So I turn to my wedges, to my gladiator sandals, even to the blue flip-flops and the pink Birkenstock. I acknowledge that even if I don’t feel I really belong to them, I do need them now. I stack them in the suitcase, with a hint of sadness.

There. The shoes are sorted. This packing business is going to be harder then I thought…

You can find out what really goes into preparing for an AIDS conference on Open Democracy , which is featuring a number of blogs focusing on women and HIV at AIDS 2010.

Click here to read more blogs from Silvia