My birthday

It”s my birthday. I am 47 years old today. I would have never thought I would be alive today when I was diagnosed at 30. I don”t feel prepared for the wrinkles and ageing. I have badly suppressed anxieties about the future: who is going to look after me when I am old, and my body and organs are tired from decades of ARTs? HIV came with a lot of hidden gifts, insights, and added purpose to my life. But I can’t help asking myself: wouldn’t I maybe have a family if I wasn’t HIV positive? I spent most of my twenties dealing with my mental health issues,my mother”s death,my demented father ( he had Alzheimer), my thirties where dedicated to overcome my HIV diagnosis and mere survival. I was 39 years old when I started thinking I maybe was ready to have a baby… But the relationship I was in imploded, also because of the long shadow of HIV. I didn’t feel I could be a one person family. I think things could have been different without HIV.

I put all my love,all my energy in being an activist. It has been amazing in many ways and to my surprise I have created for myself a HIV family which is way more inspirational and supportive than many  traditional families. One of the struggles i have embraced wholeheartedly is that of addressing the links between HIV and Gender Based Violence in the UK. it was so heart warming on the 14th of February to see the room of the House of Lords filled to the bream with people. The Sophia Forum, of which I am a trustee, was launching a report on a feasibility study on the links between Gender Based Violence (GBV) and HIV. So many people arrived we were worried we would have to turn them away. But it showed that it was much more than a handful of people who were concerned.

During the day we had many shocking presentations that showed how violence permeates the lives of women living with HIV in the UK. Violence takes so many forms, it can be in the home, by partners, by other family members, it can happen in institutions including mental health services, prisons, ante natal services. All the presentations and the report are available on the Sophia Forum website.
The launch was a great success and showed that women from all walks of life, academics, health practitioners, people who work in domestic violence services, and of course women living with HIV want actions to stop all those abuses of power. At present violence continues. And violence is not just physical and emotional, violence is also economical. The constant lack of funding for work with and for women with HIV is also violence. The feasibility study was done on a shoestring, thanks to an Awards for All grant, the launch of the report, likewise was done thanks to the generosity of the Monument Trust. Now we need to implement the report recommendations which include: more research, training of health professionals, strengthening of HIV positive women”s networks. This can not happen with one off small grants. It needs sustained strategic funding.

And please I do not want to hear: we are in an economic crisis the money is not there. There is a lot of wealth in the world we live in. Just remember a Robin Hood tax could rise $350 billions in the US in one year alone.

Here is a picture of me and my mum Susanna Meschini (1934-1986) , she was an extraordinary woman, unfortunately hunted by depression and weighted down by patriarchal Italian society of the times she lived in: even worst than now. When I was a child she took me to marches to fight for the rights to abortion and divorce. She had a difficult and sad life. But today 47 years ago she gave me an opportunity to be alive on this planet. I am trying to honour it.

Change Starts With Each and Everyone of Us

UK activists with Michel Sidibe:Bisi Alimi, Angelina Namiba, WInnie Sseruma, Silvia Petretti

This was a pretty eventful week. At a very short notice had to go to Turin, on behalf of the
Global Network of People Living with HIV (GNP+) to contribute to a training for the International Labour Organization (ILO). I applaud ILO for putting together a two weeks course on HIV for people who work to promote better and more just work practices. During my session I spoke about the impact of HIV stigma and discrimination in the work place and presented data from the GNP+ research: the Stigma Index and the Human Rights Count. Those two pieces of research provide evidence of discrimination and of human rights violations in the world of work, and the impact they have not only on the individual but also on the household, and especially on girls: who often have to take extra caring responsibility and even stop going to school in order to contribute to their family income, when somebody loses her/his job, because of HIV based discrimination. It is great to feel that I can be part of GNP+ efforts of moving from anecdote to evidence, from evidence to policy, and from policy (hopefully) to good practice. I asked all the participants to take time everyday at the end of the day to think what they could do on a personal level to reach out to people living with HIV, and then scale it up: to their household, their work place, their area, their city their region, their country etc. Change starts with each and everyone of us.

This was on Monday, on Tuesday I had been asked by the UK Consortium on AIDS and Development to chair a meeting between Civil Society and Michel Sidibe the Executive Director of UNAIDS. To say I was nervous is an understatement. And to the budding activists who I hope may be reading my blog I have to say that this is such a part of ‘ becoming an activist” you are given opportunities that you feel are totally beyond yourself. But in spite of the nerves, or the fear of doing or saying something wrong, you have to do it. Especially as people living with HIV our involvement can give always another direction and weight to the discussion. So we need to prepare and try to promote the issues that matter to us…. We can only learn by doing. And other people can only hear the truth from us, who are directly affected.

The meeting was opened by David Bull the CEO of UNICEF UK, who were hosting the meeting in their building. David Bull reminded us of the efforts UNICEF had made to put children at the centre of the HIV agenda and how important the UN commitments to the “Global Plan to eliminate new infection among children, and keeping their mothers alive” (for comments on the disempowering language used in this statement please see this article). As chair of the meeting I used my privilege to remind him that as women living with HIV we are the best ally to ensure babies are HIV free, and the best way to do so it is to ensure that our rights are advanced and protected, and that we can live lives free from violence and coercion. The same point was later on picked up by my friend Angelina Namiba who was talking about Gender and HIV and pointing out how gender inequality in the economic and political spheres still affects us in terms of vulnerability to HIV and quality of life, especially for those of us who are living with HIV. Angelina also applauded Michel for his action following the Washington Meeting with women”s networks. He has since made sure UNAIDS commissioned a thematic report on women living with HIV and leadership which will soon be out, and for initiating the Dialogue Platform for Women and Girls, which will inform UNAIDS agenda on women and girls and seems a real step forward in ensuring the meaningful involvement of women living with HIV in all UNAIDS work.

An important issue was also raised by the UK Consortium working group on care and support: the need to create better criteria to support carers ( who very often are women…another gender issue, really). At present the UN declaration that came out of the High Level Meeting on HIV and AIDS, doesn’t have any targets in this area, and doesn’t address the issues that carers face, who most time work tirelessly without any retribution or recognition.

Michel was very receptive to the whole discussion. He admitted that everybody agrees in principle on gender issues and advancing women’s rights, but still little action ensues…I couldn’t agree more!

Women living with HIV and drug use

When we talk about women who use drugs it is important to realise how gender power dynamics are at play. Women who use drugs are disproportionately more likely to be HIV positive, compared to men who use drugs because our vulnerability is compounded by gender and other structural imbalances such as poverty or belonging to ethnic minorities.

Some of us, women who use/ have used drugs,  may have also been involved in sex work, and some of us may have had transactional sex just to get the drugs. Even if one doesn’t directly exchange sex for drugs or money, negotiating sex on our own term can be difficult when under the effects of drugs and alcohol. Many of us who use/have used drugs may suffer from mental health problems such as depression and low self-esteem often born of traumatic experiences in our childhood. Experiences of child abuse and neglect are very common among people who use drugs. Because of this fragile emotional context some of us may use sex to feel wanted, to cope with  loneliness, or just to have warmth and intimacy: enforcing condoms may make us look as ‘fun-spoilers’ or may just bring rejection. All of this enhances our  risk of acquiring HIV and other STI.  The ‘ritual’ of injecting is often lead by men and women are often last in the line, either being injected by their partner or ‘senior’ drug users. Because women have more fat often it is more difficult to get a vein to inject and it may take several tries before successfully injecting, thus increasing the risk of acquiring HIV and other blood borne viruses. Harm reduction services should be sensitive to all those issues and not only provide clean needles, but also teach women how to inject safely, without having to depend on somebody else. It would be also good if harm reduction services also included sexual health services where women could get support and a safe space to discuss their sexual health needs. Simply handing out condoms is not enough!

Those of us who are HIV positive face a lot of stigma both  within HIV services and drug services . Society doesn’t envisage a person who uses drugs as a ‘mother’. Often even within HIV support organizations a woman expecting a baby who is a drug user will be treated in a very negative way, as if she cannot possibly be a good mother. But women who use drugs are women like others, with the same desires and rights as all other women, it is important that we can choose to be mothers and be supported. There is a lot to deal with for us during pregnancy because many of us may live not only with HIV but also with Hepatitis B and C. Living with so many viruses makes our decisions around treatment and pregnancy very complex. It is essential that services for women living with HIV who use drugs are not judgemental and support us understanding complex medical information around HIV, HCV and HBV and also offer us access to Sexual Health and Reproductive Services: this include contraception, abortion services, post abortion support and also support to have babies and be a parent. Those services need to be integrated with HIV services, provision of ARVs, clean syringes, opioid substitution etc. The Ukrainian network of people living with HIV has produced some excellent documentation on how positive women on opioid substitution can go on being good mothers and living satisfying lives.   Integrated services should be provided in ‘one-stop’ shop, or very closely located, because one cannot spend a lot of time going from one place to another, especially if she is a mother and a drug user, there is not much free time.

The fact that we use/have used drugs doesn’t mean we are useless, or powerless. Some of us use drugs, often to numb feelings that are too painful, but also because drugs are fun and enjoyable. With the right structure, acceptance, recognition and support drug users can achieve great things. For example Positively Women was founded by two women who acquired HIV through injecting drugs. It was 1987 in London and services available at the time were all structured around the needs of gay men. Those two women, Jaynie and Sheila started a support group in their front room. At the beginning the clinics didn’t even want to publicize their materials because they thought that two ‘junkies’ couldn’t possibly do something useful. They persevered and slowly women started to turn up. Within a few years they were doing educational sessions in schools, outreach in prisons and supporting hundreds of women. The charity still exists and is now called Positively UK: it supports also men but it  has maintained an ethos of peer-support and all the services are offered by people living with HIV, including people who use drugs, and with a strong focus in addressing gender issues working with both men and women. If it wasn’t for the group started by Jaynie and Sheila, two women who used drugs, our organization wouldn’t exist.

Our Option: Connect with the Real Lives of Women Living with HIV

 

It is just over a month since my return from the International AIDS Conference in Washington DC and I have spent the past week reorganizing my notes. Watching sessions I missed and trying to distil the ‘juice’ of the conference to offer to my peers that didn’t have the privilege to attend.

Disconnection is one of the first words that come to my mind: disconnection between the world of policy makers and wielders of power and the lived experiences of women living with HIV.

The moment when this disconnection became more acutely visible for me was at the plenary session ‘Turning the Tide on Transmission’, when on the same plenary we had Linda Scruggs, an openly HIV positive Afro-American woman making a call for our direct involvement in the choices and decisions that affect us and UNICEF senior pediatrician Chewe Luo promoting Option B+ the new bio-medical quick fix to reduce vertical transmission of HIV.

In a nutshell Option B+  aims  to test all pregnant women (with no mention of voluntary testing and counselling) and then put all those who are living with HIV on ARVs for the rest of their lives, regardless of their own health needs, regardless of the fact that research still hasn’t identified any further benefits for starting treatment before  CD4 count is below 350. This ‘Option B+’ has only been carried out  as an implementation intervention in the small country of Malawi, for just over one year.  In Malawi it was shown that it worked: it prevented babies from acquiring HIV, mothers were in good health, and it was also emphasized that it had the added benefit of preventing transmission to negative male partners.  Dr Luo summarized: it is simple, it is effective, and it is easy implementable.

I would like to stress that I am all in favour of taking treatment to improve our health, and staying alive, I have been on ARV treatment myself for over 14 years, and I would probably be dead otherwise. However, together with many other people with HIV from all over the world I believe that treatment should be initiated and continued primarily for personal health benefits. In the UK and all European countries  pregnant women who are still in good health, with an high CD4 count, only take treatment during pregnancy and a few weeks afterwards, in order to prevent transmission to the baby, this is clearly explained in the BHIVA guidelines. Afterwards women can stop, and wait, sometimes for many years, until their immune system is weaken and treatment is needed. It has been questioned if this is feasible in low income countries. The cost of monitoring tests has often been seen as a big obstacle. But is it really true that we can test and treat all pregnant women, but we  do not have the resources to monitor CD4 in Africa? Thanks to a very low tech test developed by the Imperial College it is possible to offer a CD4 test for less than $10. I am not an economist, but I am sure that from the money saved from putting on treatment people who do not need it for their own health it would be possible to fund a couple of CD4 count a year for all, and especially pregnant women who receive a positive HIV test.

When I came back to my office to share this bit of news with my team of peer case workers they were all horrified. My team mates were all asking: what has happened to choice? Do they know about side effects? Do they know how daunting it is to take treatment for the rest of our lives, especially if you have been newly diagnosed? How do you take treatment if you have not disclosed to your partner or other family members?  What about women who are in violent relationships and live in fear? What do you do when you have not enough food to eat with your medications? What happens if you develop resistance? Is there going to be second and third line treatment? What  about interactions with other medications?  Would they ever do this in London? Within the team we  have decades of experience supporting women being  on treatment, many of us are African,  and we know that high levels of peer support are needed to stay on treatment and manage many of the psycho-social issues that come with an HIV diagnosis. I can assure you that there is a lot that goes into swallowing a handful of pill for the rest of our lives.

I believe there is no reason why we cannot aspire as HIV positive women from all over the world to put our own health and the health of our babies first, according to our choices.  So dear heads of UNICEF, WHO and UNAIDS,  I know that the model implemented in Malawi has an elegant simplicity, but it is so far removed from our lived realities of taking treatment every day.

I doubt you would ever come to my North London  Hospital, the Royal Free, and enforce something like this on us, because there would probably be an uprising. But it is easy to do this in countries where most positive women are in incredible poverty, live in fear of discrimination from health care providers, where our networks of positive women are for ever underfunded.   It is very nice that you come and share the big stages of those International AIDS Conferences with us,  but what we are demanding is  that you really connect with us and our lives. We want you to listen to what we have been saying for years, as Anna Sango,  a 24 years old Zimbabwean woman living with HIV,  said in the opening ceremony.

How many times do we have to say: meaningfully involve us at all stages of programming. We cannot be just an afterthought at implementation level for your short sighted top down plans. We have a wealth of knowledge and experience that will truly fertilize the planning programmes, their successful delivery and their monitoring. For our health and the health of our communities there is another option: connect with our lives.

If you want to know more about those issues please read Dr Alice Welbourn article:  An HIV-free generation:human science versus plumbing

 

HIV in Italy: the epidemic continues growing among women

In Italy in the 80′s

In Italy, like in many European countries, we rarely talk about HIV. If we talk about it, it is about what happens in “foreign countries”, like Africa, far away from us, in spite of the fact that within our borders over 148,000 people live with the virus and over a third are women. So here I want to talk about how HIV has affected me as an Italian woman, and also to look at the efforts of people living with HIV in Italy to   create an environment which is culturally and politically more supportive.

I was diagnosed HIV positive in Italy in 1997, a few days before my thirtieth  birthday. ‘Why me? Why Me?’:  was the question that kept bouncing in my head. I found it terribly hard to make sense of what had happened. I was terrified and full of  shame…It took me many months to speak to my closest friend.  That is how strong the power of stigma was, and unfortunately still is for many women who get diagnosed today.

Internationally we very often speak of how gender inequalities and cultural gender norms make women vulnerable to HIV, but this is seldom spoken of in Europe. Personally I think it had a lot to do with how I became HIV positive in Italy. As a young woman I had to deal with a quite a lot of depression, emotional instability, and low self–esteem. Using drugs, hiding behind a ‘tough’ mask was what I used to protect myself and deal with my emotions. However I didn’t acquire HIV directly from using drugs, it was the social and cultural environment around me that highly enhanced my vulnerability.  I was educated, I came from a very liberal family, my mother was a feminist. In theory I should have had all the information and skills to avoid such a tragedy.

However,  growing up in a catholic country, with a very patriarchal structure meant that the women’s liberation movement had had only a superficial  impact.  Women in places of power are still rare today.  Yes, my mother had fought for the right to contraception, abortion and divorce, but as young women, in the 80’s, our status was still very determined by having a partner and being subservient to male figures. The assumption was that we were ‘liberated’ and sexually available. However, as a young woman, getting condoms wasn’t easy. They were only available in chemists, and it was embarrassing to ask for them in front of many other people queueing up for their prescription. If you tried to initiate condoms with your partner you would find a lot of resistance, you would be judged as either a slut or a fun spoiler. As a young woman,  you couldn’t  win. We didn’t have any female-initiated prevention methods, and female condoms didn’t exist, or I had never even heard about them. I feel that things are not much better for young women today, who get sexualized from an even younger age, and live in a country were the sexual exploits with extremely young women of our ex prime minister took a very long time to cause his demise, and are still condoned by many people.

After my diagnosis I was never offered any social support or information on HIV. In Italy, social services are virtually non-existent and in times of a crisis the family is expected to be your main source of support. This obviously leaves a lot of people terribly isolated, as for many it is still really hard to discuss HIV within the family. For me it was impossible, as my mother had died and my father had advanced dementia. How did I survive? I had to leave… I escaped to London,  where finally I started accessing a women’s group at Positively Women, now Positively UK. I became more involved with the organization and started working there especially with drug using women and women in prison. I also started doing more political work and joined  the International Community of Women Living with HIV (ICW).  In 2004, together with Carmen Tarrades and Fiona Pettitt  who worked at ICW offices in London, we established our first UK positive women’s network, PozFem UK, which had the aim to skill up women living with HIV to be able to influence policy and the media in order to promote the rights of women living with HIV.

In 2005 I decided to go public about my HIV positive status: I felt that  the personal was Political, with a capital P, and I thought that being open about living with HIV could make my advocacy work more effective and challenge more powerfully prejudices against women with HIV.  I am painfully aware that openness is still impossible for many women who live with HIV who often have access to limited support and need to protect their loved ones from stigma and discrimination. I also started participating in more international conferences,  to speak about PozFem and our success in enabling  HIV positive women to move  from isolation to involvement. One day, at the end of a presentation I was approached by Margherita Errico, who is now CEO of the Network Persone Sieropositive (NPS) in Italy. She congratulated me on my presentation, but also scolded me: ‘You ran away… But not all of us can…Things are still very hard, but we are getting organized.” Through Margehrita I started getting back in contact with other people with HIV in Italy. NPS has done a lot of work both to provide information to people living with HIV on treatment issues and their rights, as well as influencing policy.  Last year we were able to organize several sessions at the International AIDS Conference in Rome on sexual and reproductive health and rights of women living with HIV. NPS, WECARe+ (Network of Women living with HIV in Europe and Central Asia) the Athena network came together to highlight good practice and discuss what still needs to change to ensure our SRHR are met world-wide. At one session Rosaria Iardino, one of the founders and leader of NPS, was able to denounce how positive women in Italy are still struggling to become parents and are even pushed into having abortions. NPS is working hard on those rights abuses, but there is still a long way to go. What are the challenges ahead? “The epidemic continues growing among women, 44,3% of all new diagnosis are among migrant women. We need new approaches to community work, which is culturally appropriate, in order to reach also those women who are most marginalized” states Margherita Errico. How this is going to happen in the economic meltdown of Southern Europe it is still unknown. It is definitely not a priority for the Italian government who also, at the international level, failed to fulfill its commitments to the Global Fund.

On the positive side the new developed integration of NPS with the global community of women-centred HIV activism means that they have taken part in the Bristol-Myers Squibb-funded SHE (Strong HIV positive Empowered) progamme, which has produced a self-help toolkit to provide peer support for women living with HIV in clinical settings.  The toolkit was written by a collective of women living with HIV and other activists from the UK and provides a structure to facilitate group sessions  on the many psycho-social issues women with HIV have to face: for example dealing with a diagnosis, starting and sustaining a relationship, having a good dialogue with the healthcare professionals and so on. Most notably, the toolkit has a section on understanding human rights, and using them to advocate for improvement in services and policies that affect women living with HIV.

The Italian website for the SHE was made available on line at the end of June and hopefully will provide a useful tool to strengthen the support needs and develop the capacity to advocate for human rights of women living with HIV in Italy today.

Italian version of this article here.

Tthis article was firstly published by Open Democracy as part of their special coverage of the International AIDS Conference 2012 AIDS Gender and Human Rights

You have got ‘It’ !?!?

Today I went to meet a Member of the European Parliament (MEP) in order to get political support for HIV positive women in Europe. The meeting was organized by Bristol Mayer Squibb (BMS) who are sponsoring  the SHE+ programme , which I co-chair with Prof.  Jane Anderson.

I,  Jane Anderson, and two people from BMS arrived at the meeting in North London,  in the very constituency of Margaret Thatcher.  I was wearing my most conservative suit, it was actually dark blue. I almost looked like a banker.

MEP:  Good morning I am ‘so and so’ , Member  of the European Parliament.

Me: Good Morning, I am Silvia Petretti  co-ordinator of PozFem, the national network of women with HIV in the UK, and also coördinator of WECARE the European network of positive women. I am myself HIV positive. I have lived with HIV for 14 years.

MEP: (eyes widening) You mean you have got ‘it‘ ??!!

Me: Yes I have lived with HIV for almost 15 years`

MEP: How did you get it, was it needles or sex…?

In spite of this awkward start, by the end of the meeting she agreed to  set up a Public Hearing on Women and AIDS  at the European Parliament in 2012.

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.

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.

Save Us From Saviors!

It is getting all a bit overwhelming.

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

In spite of this I managed to facilitate 2 sessions at the Women Networking Zone, one on women and networks and another a panel discussing the effects of laws criminalizing women’s sexuality.

I sat along 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 criminalize 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 films of a field of flowers blossoming.

I had 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 (MSM), 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, STDs and how to use condoms. Stepping up as educators has helped them to go from social pariah to 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 saviors!

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 tell you that one of the great news that was announced this week is the results of a large trial on microbicides using Tenofivir (an ARV).

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 in the trial effectiveness reported was 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 co  facilitated a workshop, with the help of 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 delineated by a washing line where bras and nickers are hanging. For me this washing line highlights  the intimate and personal aspect of women’s discussion and political involvement.

Here are some images:

The workshop focused on understanding what we can gain by becoming more visible in the media and in building skills for women to feel confident at giving interviews. As an end result  we wanted also to have  some interviews by women who participated in the Vienna conference to be published in a twin edition of Positively Women Magazine (in English) and DHIVA magazine (in German). At the end of the workshop 6 women volunteered to be interviewed. How is 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.

At 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.

We marched through the historical center of Vienna. We were a crowd of thousands and thousands of people. 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 fulfill this right.

Stigma will not end if we are invisible.

Women and girls what do we want?

Human Rights Now!