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

What Really Matter to People living with HIV? Sexual and Reproductive Health and Rights (Part 2)

What really matters to people living with HIV?

Well, if you ask me, and quite a few positive people I know, having a pleasurable and safe sex life and, for some, starting a family come to the very top. It seems this is an area of our lives where HIV can have a really negative impact, if badly managed.

One of my concerns looking at the draft document circulated for the Standards of Care is that there were not really any indicators for Sexual and Reproductive Health and Rights. The main focus on the paper was on avoiding onward HIV transmission. Obviously everybody agrees with this. Nobody in a sane mind wants to see an increase in transmission of HIV. However, this is a limited approach. We cannot just stress what we want to avoid, I believe we need an affirmation of what we want in its place.

I will never forget when I was newly diagnosed and  I asked my doctor about pregnancy:   she rolled her eyes and everything in her body language expressed disapproval, even if she told me that I could take AZT during pregnancy to avoid transmission. Because of this I totally put pregnancy out of my mind. I think things could have been very different if she had told me in an uncompromising supportive way, looking in to my eyes and with a large smile on her face: ‘Yes you can have children, and it can be totally safe. People living with HIV can conceive without passing HIV to their partners and have healthy babies. Everybody here in the clinic will support you in this process.  We are here for you’.

I know that even today the pregnancy journey can be filled with anxieties for women living with HIV, and this can deeply affect our mental health and consequently the baby’s health. This could be avoided because  we know that peer lead projects, such as Positively UK From Pregnancy to Baby and Beyond – lead by Angelina Namiba- can play an important role in making women living with HIV have a happy pregnancy, just like any other woman. This approach can improve the woman and the baby’s quality of life enormously. However funding for our project is too scarce to keep Angelina working on it. And many women living with HIV still go through extremely stressful times while they try to conceive or are pregnant in the UK. We could easily avoid this!

And it is not just about having a baby it is also about having the sex we want and we enjoy. Most of the time at the clinic at the best they pass you a few condoms, if you are lucky and you  ask you may get a female condom. But nobody really has the time or the skills to talk to you about your sex life. This is obviously much more the terrain of peer support groups. Moreover, nowadays it is not just about using condoms is also about understanding treatment as prevention, Prep, PEP, and the combination of interventions that can contribute to avoid onward transmission. This stuff is complex and difficult to get to grip with.

Because of all of this I believe that upholding our sexual and reproductive health and rights should be an important heading in the standards of care of people living with HIV. Avoiding onward transmission could be one of the indicators. But an important indicator should also be referral and access to specific peer support services which can give complex information in a form that is easily understandable and can address those issue in an empathetic,  structured and effective way.

What do you think? Do you know of other good indicators for sexual and reproductive health, or quality of life?

BHIVA HIV Treatment Guidelines

It is the last few days of consultation on the new BHIVA guidelines for treatment of people living with HIV.

I am really pleased to say that there  has been extensive consultation with the community of people with HIV.  BHIVA had  a community representative on the writing committee and also held two large consultative meetings with the community: one before Christmas and one last Tuesday. On Tuesday the room at Friend’s House in Euston was filled to the brim with a good diversity of people.

There are two extremely  innovative sections in the guidelines: one dedicated  to Patient Involvement in Decision Making and one on Treatment as Prevention. The latter is especially ground-braking because it acknowledges in practice the prevention revolution brought about by the HTN052 study. This was a research  among couples where one partner was positive and one was negative, who were not always using condoms, which proved scientifically that people on HIV medications are 96% less likely to transmit HIV.

It’s a fact: there are HIV  positive people who are not able to use condoms, maybe because they want to conceive, or because they feel it interferes too much  with the pleasure and spontaneity of sex, or maybe because, as a consequence of power dynamics, it can be difficult for women or young people to always negotiate condoms. Starting treatment in order to avoid passing HIV to a negative partner is acknowledged as an ethical option by the guidelines. Obviously the guidelines also include a lot about in-depth discussion with the doctor of all the ‘caveat’ and especially  the crucial importance of stressing the use of condoms ( and  I suggest to include female condoms! )  to further reduce the very low risk.

I feel it this is  an amazing acknowledgement of the sexual and reproductive rights of people with HIV, as well as that  it could contribute to reduce stigma,  and finally  that it  also provides a strong argument to make treatment available  to all.

It is not surprising and maybe not a coincidence, that this week there has also been a change in the UK policy that prevented foreigners, such as failed asylum seekers and people on a student VISA, to access HIV medication  (an issue on which we had been campaigning since 2004). The rationale beyond this change was not just that it was absurd and incoherent that ‘ foreigners’ could access treatment for all infectious diseases apart from HIV ( the evil disease that needs to be singled out!). The argument for providing treatment to everybody on UK territory was very much made on the notion that this is important for public health and prevention, because people on treatment are so much more less likely to transmit HIV.

I really hope that what is happening in the UK will have even further ramification in promoting Universal Access to treatment to the millions of people who still need it, especially in the current climate of uncertainity created by the the Global Fund Crisis.

Good coverage on the change in policy on access of HIV treatment was on the Telegraph.

If you  are interested in commenting on the BHIVA treatment guidelines (and can digest the 111 pages written in medical jargon….gulp!)  the consultation is open until Monday 5^th March.

Learning Positive

I am so pleased, not more….  happy, really ecstatic!

Thanks to the leadership of my colleague Alastair Hudson  at IPPF a fantastic new resource for young people to learn about HIV in the UK is on line.  The interactive website brings together physicians, people with HIV, advocates and policy makers.

Young people need to learn about this stuff. I warmly suggest that if you know teachers, if you have kids in schools,  that you let them know about this amazing resource.

Here is the trailer.

The full website will be launched on the 27th february

Infectious

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

Nothing About Us Without Us

I firstly heard the expression ’‘Nothing about us without us” at a meeting of the International Community of Women Living with HIV (ICW), and if you go to the ICW Global website it still runs as a banner in capital letters on the home page . This expression ticks all the right boxes. It uses a ‘us’ language, stressing the importance of collective action, it expresses values of participation and inclusion which are fundamental to real democracy. It is about power being shared equally. It is about voice and control.

With a little bit of research, and a few mouse clicks, I discovered that this expression has its roots in the Disability Rights Movement (DRM). It was the title of a famous book by the disability activist James Charlton. The author first heard it from South African activists from the DRM, who claimed it came from activists in Eastern Europe. So it originates at the geographical margin of the usual locations of power. It is important to remember that the DRM set out to redefine disability as a social construct. Those activists pointed out that people with disability only had impairments, and it was society which was creating ‘disability’ by generating and maintaining barriers. For example disability is created when a bus doesn’t have a system that allows wheelchair access. However, ‘disability’ is constructed by more the physical barriers. The lives of people with disabilities have been limited not just by the architecture of buildings or lack of braille for those who do not see or sign language for the deaf.  The rights of those of us living with disabilities have been also violated by attitudes an preconceptions, by patronizing approaches and institutionalization.

It all sounds very familiar, doesn’t it? Obviously there are many affinities between the disability movement and the movement of people living with HIV. Most of the barriers we face are not imposed by the virus or physical limitations but by society. The enormous advances of medical care mean that many of us have, from a narrow medical point of view, healthy lives. However society’s attitudes and prejudices towards HIV still prevent many of us to live our lives fully, or at the same standard as anybody else. To give some examples, in the past few months I have been in support group were young beautiful women were isolated and terrified to disclose their status to anybody, and hadn’t had a relationship in years. I met a mother who had her children separate cutlery and plates because of the fear of HIV. A few weeks ago a colleague who is also openly living with HIV and has often spoken publicly about stigma, had eggs thrown at her. This is still happening in the UK in 2011. The virus may be undetectable in our blood, but stigma is around us: often reinforced by other social factors, such as poverty, gender inequality and racism. Reclaiming our voice, reclaiming our visibility, is part of our struggle.

‘Nothing about us without us’ has recently moved from being the slogan of those at the margin, fighting against oppression, to being integrated in the mainstream and absorbed in the language of those in power. The current UK government used   ‘Nothing about me, without me’ as the mantra of their plans to restructure the NHS. This time they stressed the individual, ‘Me’ instead then ‘Us’. After much debate the NHS reform bill was passed in parliament. The includes much more localized health boards in which patients, including people with HIV, and other stakeholders, such as healthcare providers, and elected decision makers, will have a place to influence how health services are delivered. So far so good, it is difficult to argue about’ shared decision making’, and there is a wealth of evidence that shows that when ‘patients’ are involved in all decisions and planning of their health the outcomes are better. However it implies that there is a level playing field for all people who access health care. Sadly the reality is that we live in a very unequal world, and I am doubtful that people with HIV, and especially those who are poor and isolated, will be able to seat on those decision making bodies.

At the IAS conference in Rome last July, Louise Binder, an HIV positive woman and advocate from Canada said:’ At school I learnt that if A equals B and B equals C then A equals C. We keep hearing Knowledge is Power. And I know that Power equals Money, so therefore Knowledge equals Money” Luisa’s point was: how can we know our rights and be empowered, without investment? This year Positively UK ran out of financial support for two incredibly successful project s which increased positive women’s knowledge and power to affect decisions. The project ‘From Baby to Pregnancy and Beyond’ , headed by Angelina Namiba, which trained positive women to be mentor mothers, and PozFem UK, the UK network of women with HIV, which skilled up positive women to become advocates were halted by a lack of funds. We are still continuing to run them on voluntary basis, but it is not enough and the work cannot grow. To be effective we need meetings with training, transport, childcare. Without future funding of such projects it is very unlikely that voices of women, will be heard, and therefore decision about us will not be made with us but by those who already have the biggest share of power.

To conclude I would like to propose a slight change of focus in the NHS mantra , I think that as community advocates we should continue using its original form : Nothing about US without US ‘ . We need to recognise the importance of our collective voice and collective action since historically, it is collective action that has propelled change. Hopefully This this conference, will play an important role in creating a collective voice and collective action.

The hard questions we need to ask ourselves as advocates are about who the ‘Us’ in ‘Nothing about Us without Us “ is. We need to question our relationships with each other. Who are we as a community of people living with HIV in the UK? Whose interests do we represent? We are a very divers e group and this is our richness as well as our weakness. Questions of how we can better represent our diverse communities and also how we can be accountable also belong to us at the grassroots as much as to those at the top.

This article was written for Positively Women Magazine as a comment on the UK conference for People living with HIV that took place in London in September 2011.

15 pratical ways to get the most out of your GP

Budgets for HIV are at a standstill.  HIV clinics will have to look after more and more people with HIV, since the epidemic keeps growing in the UK,  with the same pot of money.

Because of this we will have to use GPs to look after our health needs which are not strictly HIV related.

I am preparing to deliver a  series o workshops on how to get the most from GPs  for people with HIV and  I am writing a handout with pratical ideas to help.

Here are some tips I gathered with suggestions from my colleagues at Pos UK.  I would love to hear from you if you have any special suggestions on how to get the most out of your  GP.

1) Know how to find your GP.  Visit NHS Choices at www.nhs.co.uk and search for a GP by your postcode.  Your HIV clinic may be able to help you find one. You must register with a GP in your catchment area, however within that you should have a choice of 2 or 3 GPs.

2) You can see the same GP every time. If there is a GP you feel most comfortable with in your surgery you can ask to see them. It may mean that you need to wait a bit longer.

3) Think about disclosing your HIV status to your GP. A GP is a doctor, and will be better able to look after your health if he or she knows all the facts.  This includes your HIV status.  If you don’t disclose there is a risk a GP can prescribe a medicine that interacts with your HIV treatments.  GPs and practice staff are bound by a confidentiality agreement; this includes keeping your HIV status a secret.  However, telling a GP can be a big step so talk it over with someone first, a friend, support worker, or speak to someone at Positively UK on 020 7713 0444.

4) Plan what you want to say and what you want to know before you        go…and write it down.

5) Write down what your GP tells you, so that you will remember later.

6) Be prepared to talk to your GP and explain your situation, especially if it’s a GP you haven’t seen before.  If a GP is to look after your health effectively, they need to know a bit about you.  Don’t get annoyed if they ask questions that you’ve told a GP previously.

7) Know your CD4 count and Viral Load. You could have a note-book where you keep track of all your figures

8 ) Know the name of the medications you are taking. Not only your HIV medications, but also any other ones you may be taking for other health problems. You can also write this in a special note-book where you keep your medical information.

9) Always be ready to ask questions when you are not clear about anything, or when you are unsure.

10) If you work full-time or are in employment, find out if they open after 6pm or on Saturdays and book appointments to suit you,

11) Ask your GP what you can do to enable him/her to provide the best care for you

12) Be open with your GP about what you like or what you are not so happy about the service – and offer any solutions! If you have an opportunity to do so.

13) If you are denied a service or even registration, always ask for a concrete reason why, this will not only give you a robust explanation, but it will also help you if you need to take any further action. A GP in your catchment area cannot refuse to take you on their register.  If they do you should contact your local PALS http://www.pals.nhs.uk or Positively UK 0207 7130444 or Positively UK who will help take your complaint forward.

14) If you are not happy with your current GP you can make a complaint and/or change it. If you need support to make  a complaint you can do it with the support of your local PALS (Patients, Advice and  Liaison, Service) http://www.pals.nhs.uk or Positively UK 0207 7130444

15) Always wear nice and clean nickers. You never know…

I will co-faciltate workshops with a GP and locations and dates are:

11th November River House, Hammersmith from 6 pm to 8 pm

22nd November Positively UK  Islington from 11 am to 1 pm

30th November Positively UK Islington from 6pm to 8pm

7th December River House from 10 am to 12 pm

You can book your place by calling Pos UK 0207 7130444

 

Liberating The NHS : PozFem Response

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 we 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 on national policy. Thirty five women from all over the UK, including Northern Ireland, Scotland, Wales and  of course England from Newcastle to Cornwall. 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?”

‘

Safer sex skills don’t come with HIV

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

Susanna’s Story

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

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

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

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

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

‘I am so unlucky’

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

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

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

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

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

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

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

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

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

Nadja Benaissa in the UK Media

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

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

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

Other good articles were written by:

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

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

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

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

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

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

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

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