by Silvia Petretti and Alice Welbourn
First printed: HIV Nursing journal, 12.2, published by Mediscript Ltd (copyright Mediscript, 2012).
We were delighted to be asked to contribute to HIV Nursing journal. We begin by explaining a little about ourselves – our backgrounds and experiences in relation to our HIV diagnosis. We then describe some of our work together on HIV and human – especially women’s – rights.
I come from a large family of healthcare workers – my Dad, Mum and all but one of my four siblings … and my husband, who is a retired GP. And I have HIV. All my family are supportive of me and my condition and this has been a huge help to me over the years. It has allowed me to understand not only my own HIV, but also how health professionals are supported – or otherwise – in dealing with and understanding HIV – or anything to do with loss of health, death and dying.
My initial experiences of learning that I have my very own HIV diagnosis were exemplary from the point of view of my healthcare. I was full of excitement, expecting a baby in 1992, with a new partner (who is now my husband). My then GP, a lovely older lady, knew that I had travelled a lot for my work in international community development and suggested that, in addition to the usual prenatal tests, I might have an HIV test. It was Friday 20 June 1992. She phoned me to say there had been a problem and asked me to come in. She explained that all the other tests had come back fine, except for the HIV – which was like a bolt from the blue. I felt fine, I looked fine – but I wasn’t.
After telling me this in her office, her first question was, “Can I give you a hug?”, which in those days was still a brave offer. She then asked me if I felt able to tell my partner. Fortunately for me, our relationship was rock-solid and I answered, “Of course”. She then asked me if I wanted to tell him myself or whether I would like her to tell him. I asked her if she could. So we arranged for us both to go back to my home, where I could sit with and hug my older children in what I already imagined were my last hours with them, while she took my partner into another room and told him the grim news.
That evening, after she had gone and the older children were in bed, I explained to my partner as we talked that, of course, I didn’t expect him to hang around – to which he replied, ‘Don’t be ridiculous, of course I am here for you’. We imagined that, since I was pregnant by him, I must have given him HIV. To our amazement and immense relief a few days later, we discovered that this assumption was wrong and that he was – and remains – HIV-free. We also realised that we were going to have to decide extremely fast whether or not to proceed with my pregnancy. Like my GP, our newly appointed HIV consultant was extremely kind and met us the very next morning – a Saturday.
We were in total shock, imagining that I was about to die. My consultant was extraordinarily caring and supportive. He introduced us also to an obstetrician who carefully explained the options with regards to the baby. It was feared that, if I went to term, I would deteriorate and die, leaving my older children motherless and my partner a single dad. It was also feared that the baby, even if he was born, might fail to thrive, causing distress to the whole family. We went off alone to North Wales together for a few days to walk high up in Snowdonia and face the future – or lack of it.
We realised that a medical termination was the only manageable way forward, much as I felt devastated by this. I grieved deeply for this son’s death – and for my diagnosis also – for 2 years. I contemplated killing myself, until I met an amazing lady at Positively Women, who described how she had been diagnosed in a prison cell at Holloway and resolved then and there to get released, sort herself out and make sure this never happened to anyone else. What a wake-up call: what right did I have to go round feeling sorry for myself, when she had been through all that and was there supporting me now?.
As well as this woman, my husband and these amazing medical staff, kind hands at my local support group OXAIDS in Oxford (which subsequently became part of the Terrence Higgins Trust Oxford), swept me up and nurtured me, encouraging me to get going again and to think about how I could transform my own experiences into supporting others. We started a self-help women’s group there – which is still going strong 20 years later. Through work contacts, I had the huge opportunity to develop a training package on gender, HIV, communication and relationship skills, known as Stepping Stones, which is also still going strong and has spread to over 100 countries around the world, translated into more than 20 languages (http://www.salamandertrust.net/index.php/Projects/Stepping_Stones_training_programme/). We kept my HIV a closely guarded secret except for a very small circle of friends, family and colleagues, since we were very anxious to keep the older children clear of stigma.
Overall, I have been incredibly lucky to be supported in so many ways by different, caring people – and to be able to turn my grief into something useful.
I was born and grew up in Rome, Italy. I was a troubled young woman. Through my teens and twenties I suffered from depression, low self-esteem and used drugs to cope with my emotional fragility. It was difficult for others to get through to me, as I was hiding behind a mask of toughness and rebellion. Even though I came from a very liberal family, growing up in a Catholic country meant that in many respects I was compelled to adopt a social and cultural model that still made my role as a woman dependent, and subservient to men.
The 80s were strange years – and, as a young woman in a world still greatly dominated by men, it was difficult to feel truly empowered. We were supposed to be ‘liberated’ and there was almost an assumption that, if we weren’t sexually available, we were ‘frigid’. However, if we carried condoms we were sluts … or just fun-spoilers. As a young woman you just couldn’t win! I think that my fragility, drug use and these stifling cultural norms made me very vulnerable to HIV. Even when I was in a risky relationship and aware of HIV, I found it really hard to negotiate condoms – and I had never heard of female condoms or any other prevention methods which could have protected me as a young woman.
When I received my HIV diagnosis just before my 30th birthday, I fell apart. I was unemployed, I didn’t have a partner, I was looking after my father who had advanced dementia (my mother had died when I was 20), and as a woman, I was expected to have play a central role In his care. What made dealing with my diagnosis incredibly hard was the deep feeling of shame that for months stopped me even speaking to some of my closest friends. I had never felt so scared and lonely in my entire life. It wasn’t until 2 years later, after I had moved to London and started accessing my first support groups at Positively Women (now Positively UK), that I was able to overcome that terrible feeling of shame and isolation. Since then, I have become increasingly involved with the organisation and I work now as Community Development Manager.
Unfortunately, despite incredible medical advances which mean we have an almost normal life expectancy, many women with HIV in 2012 still experience the terrible isolation and secrecy I did over 15 years ago. Because of this, I continue working hard with other women living with HIV, such as Alice, at increasing the voice and visibility we have in our communities. I believe that stigma feeds on silence and that, as women with HIV, we can play a central role in ending it and create a world where our human rights are fully respected. In 2004 we established PozFem UK (http://poz-fem-uk.org/), a national network of women living with HIV. Through PozFem we have organised training sessions for women with HIV to become advocates, to respond to national policy and to get involved with the media. I believe that being part of a collective voice can give us the power to be visible and challenge stigma.
Raising the game
We both realised that working at community level, no matter how inspiring, is just not enough for true change is to take place. There was a need to try to influence policy makers and donors, as well as work with people in communities.
So we both joined the International Community of Women living with HIV and AIDS (then with its international coordinating office in London – http://www.icw.org), started by some amazing pioneering women with HIV in 1992. And through that, we also met more women activists with HIV in London. The two of us met for the first time at an international conference of people living with HIV in Kampala, Uganda in late 2003. We met again in 2004 in Leicester at the National Conference of People Living with HIV (‘Changing Tomorrow‘), when 50 women with HIV met together and Pozfem was born, thanks to the leadership of Silvia together with Fiona Pettitt and Carmen Tarrades.
At this point, with the children now a bit older, Alice began to feel able to be more open about her status; while for Silvia, this time marked the end of a relationship and a decision to go more public with activism. We both decided to stand up and be counted. We started to go public about ourselves, to use our own HIV status as leverage to challenge the many rights abuses experienced by other women with HIV, both in the UK and around the world: discrimination, death, coerced sterilisation, gender violence, and worse – all as a result of their HIV status.
The contrast between the relative support we received, and the lack of it for millions of women in the UK and around the world, was and is stark. We began to learn the language of human rights, of sexual and reproductive rights, the importance of meaningful involvement of those most affected by an issue – whatever it is – in order to solve it. We became political with a capital P.
|A change in the weather: life after ARTThe picture nowadays is of course worlds apart from the mid-1990s, when Alice was first diagnosed: ‘Antiretroviral therapy (ART) arrived in the mid-1990s and I witnessed the Lazarus effect at our women’s group in Oxford: suddenly, we stopped having to go to funerals. I had several bouts of shingles and one of Bell’s palsy. However, since March 2000, when I have been on ARVs, my CD4 count has soared to 860 and I have an undetectable viral load.’In Italy, however, the impact of ART took much longer to be seen. In the 1990s Silvia had shingles and struggled in the first few years, especially with bouts of fatigue: ‘However, having started ART in 1998 , I now have an undetectable viral load and a CD4 count of 700. Nowadays I look after myself through yoga every day and feel in control of my health. However, you really need to have a good understanding of your care and play an active role in it. By an oversight I was prescribed an overdose of my medication, taking almost double the dose of one of my medications for almost 10 months, and feeling really ill. This shows how strong ARVs are and how important it is for us to make sure we have the access to information that enables us to sort out such mistakes, and that we should not be passive in our care.’Thanks to the ‘treatment as prevention advances’, we can now safely have unprotected sex if we want to, free of fear of passing our HIV to others. And women with HIV can now have babies, with over 99% certainty that they will be born HIV free, even with normal vaginal delivery. Scientific advances, indeed.|
The painful truth
However, for all the amazing progress that has been seen, we still have friends in the UK who are rejected when potential new partners learn of their HIV. We have a colleague right now who has lost count of the number of times health staff have asked her why on earth she is 5 months pregnant. We still know many women in the UK who have experienced abusive behaviour from partners or other family members (or healthcare staff) once it is known that they have HIV, whether the abuse is physical, sexual, emotional – or by financial, even legal means. We still know a lot of women in the UK who dare not tell their work colleagues or even their children that they have HIV, for fear of losing their jobs or their children’s love and affection.
In addition, we are globally in contact with many, many women with HIV who have had a wide range of extraordinarily intense experiences of pain, rejection and grief as a consequence of their HIV diagnosis, including coerced sterilisation. The experiences of some are recorded in a series of interviews conducted in 2008 (http://www.salamandertrust.net/index.php/Projects/The_HIV,_Women_and_Motherhood_Audio_Project/).
The many appalling issues that face women living with HIV around the world could and should be rectified through the use of human rights legislation. Yet few know anything about this or how it applies to women with HIV. Unfortunately, the training of health staff, both in and beyond the UK, is severely lacking in respect of human rights legislation. We should all be taught at school about the Universal Declaration of Human Rights [ref]. [www.un.org/en/documents/udhr/].
However, failing that, we suggest that all health workers should have it as a fundamental part of first-year studies, along with the World Health Organization (WHO) Definition of Health http://www.who.int/suggestions/faq/en/index.html [ref], the Convention on the Rights of Persons with Disabilities http://www.un.org/disabilities/default.asp?navid=14&pid=150[ref], the Convention on the Rights of the Child http://www2.ohchr.org/english/law/crc.htm [ref] and the Convention to End Discrimination Against Women http://www.un.org/womenwatch/daw/cedaw/cedaw.htm [ref] . The Programme of Action agreed at the International Conference on Population and Development (1994) http://www.unfpa.org/public/icpd/ [ref] is another key document in the land of sexual and reproductive rights for women, as are the Millennium Development Goals http://www.un.org/millenniumgoals/ [ref], the Vienna Declaration from 2010 http://www.viennadeclaration.com/the-declaration/ [ref].
The latter promotes the science of harm reduction (clean, safe syringe exchange, methadone substitution, legalisation of drugs) and could help us talk openly and in an unbiased way with young people – for instance, about the pros and cons of drug use – so they could more effectively decide what risks they want to take with drugs – or not.
Similarly, legalisation of sex work would help to combat violence against sex workers; legislation to make homosexuality legal would enable fully informed, non-judgmental rights-based public health strategies possible here also. (See, for example, the work of the Global Network of Sex Work Projects (http://www.nswp.org/page/making-sex-work-safe), IPPF’s young people’s charter for sexual and reproductive rights (http://ippf.org/en/Resources/Statements/IPPF+Charter+on+Sexual+and+Reproductive+Rights.htm), IPPF’s guide for young people living with HIV (http://ippf.org/en/Resources/Guides-toolkits/Healthy+Happy+and+Hot.htm) and the Global Forum on Men who have Sex with Men and HIV (http://www.msmgf.org/index.cfm/id/11/aid/5244)).
… and information
All these measures would enable everyone involved to discuss and share, fully and frankly, information which is their right – in order to keep themselves and others safe. Instead, much of what is currently discussed in schools, health centres, households and elsewhere is wrapped up in restrictive laws and regulations that turn justice, our health and our rights into the prisoners. Yet most people, including health staff, have never heard of these documents, let alone had the chance to consider the effects of restrictive laws and policy on what can or can’t be said or done, to support people to look after themselves. With health staff unaware of these issues, there is not much hope for the general public.
So one thing we have been doing is to develop a human rights component to the SHE programme. The aim of the SHE programme is “to build Strong, HIV positive, Empowered women through peer support sessions facilitated by women living with HIV”. (www.shetoshe.org) This is a peer-led self-help training programme for women living with HIV. (There is also a parallel programme for clinicians, soon to be released.) The SHE programme consists of a toolkit and a website. The human rights component, available free to download by anyone (http://www.shetoshe.org/know-your-rights), gives participants the opportunity to learn about and discuss some of the basic issues in the documents listed above, in order to understand that, since the UK is a signatory to these conventions, they are protected by these conventions here in the UK.
We also work with second-year medical students at my local university (Alice), and GPs and social workers in London (Silvia) to support them to read and understand these documents and reflect on how the content relates to their own future medical practice. These conventions apply to us all and, if you are working in a country that has signed them, it seems logical to know what they contain. Yet in our experience, few health or social work staff have even heard of them, let alone read them.
Fear through ignorance
Furthermore, it worries us hugely that many health staff with HIV themselves do not share their status with their colleagues or managers, for fear of being ostracised or losing their jobs – a chosen vocation, of course, which they love. One nurse we know, who works in mental health, described how her colleagues spoke very disparagingly of an individual in their care who had HIV. She felt so lonely and had to pretend to agree with their criticisms, for fear of arousing suspicion.
Meanwhile, an anaesthetist friend at another hospital has recently realised that some theatre nursing staff chose to take the day off or swap shifts when they learnt that someone with HIV was going to be on the operating list. Small wonder that in this context any health professional with HIV is going to keep their status very quiet. WHO states, “…less than 10% of the HIV among health workers is the result of an exposure at work…”. The rest of HIV amongst health workers is contracted in the same way that the rest of the general population contracts HIV – in their own lives outside work.
Sadly, no-one in the UK, as far as we are aware, is keeping general health staff abreast of such facts from WHO; nor of scientific advances about treatment as prevention. So general health staff remain understandably fearful and often intolerant of people with HIV in their care, believing that these people pose a major risk to their own health and seeing their own personal lives as somehow separate from – and therefore perhaps magically protected from – the vulnerabilities to HIV exposure of the population at large. Given the rising incidence of heterosexual HIV transmissions and of HIV amongst women in the UK – and the high numbers of females working in the NHS – this lack of training support for health workers seems particularly remiss.
Support through experience
Moreover, the scientific advances of treatment as prevention surely allow greater scope than ever for HIV-positive healthcare professionals to continue working as they have, with no risk whatsoever to fellow colleagues or people in their care, provided universal precautions are observed. We have heard of examples outside the UK where people with HIV find it inspiring and liberating to learn that the health professional looking after them has HIV also. This is true for anyone with HIV, of course. For women in particular, especially if they are only learning about their HIV for the first time when pregnant (the usual point of diagnosis for women), the possibility of having health staff at hand who can say, ‘I’ve been here too, let’s work on this together’, would be extraordinarily reassuring. (http://www.bhiva.org/RCOG-BHIVA-2012-AngelinaNamiba.aspx)
Just as health professionals who have had breast cancer or other major conditions can undoubtedly bring this personal insight to their work in a way which enhances their ability to support others, so it is with HIV. However, because the stigma continues, this enhanced insight is often shrouded in layers of secrecy. What an immense lost opportunity!
Health and human rights advocate, Professor Sofia Gruskin, who directs the Program on Global Health and Human Rights at the Institute of Global Health, University of Southern California, has written with colleague, Laura Ferguson, in the WHO Bulletin, about the need to introduce human rights indicators into healthcare settings (http://www.who.int/bulletin/volumes/87/9/08-058321/en/index.html). We welcome these recommendations: as the UK seeks to roll out HIV testing to GP surgeries and A&E departments, this accountability provision is needed more than ever. Such measures are needed to protect the human rights of us all – including health staff with HIV, so that their particular insights and skills may be especially welcomed, harnessed and appreciated.
We look forward to hearing what readers of HIV Nursing think about this – please get in touch and share your thoughts with us.
1. Stepping Stones, see: http://www.salamandertrust.net/index.php/Projects/Stepping_Stones_training_programme/(accessedMay 2012).
2. PozFem UK, at: www.poz-fem-uk.org/ (accessed May 2012).
3. International Community of Women living with HIV and AIDS, at: www.icw.org (accessed May 2012).
4. HIV, Women and Motherhood, see: www.salamandertrust.net/index.php/Projects/The_HIV,Women_and_Motherhood_Audio_Project/ (accessed May2012).
5. Universal Declaration of Human Rights, see: www.un.org/en/documents/udhr/ (accessed May 2012).
6. WHO Definition of Health, see: www.who.int/suggestions/faq/en/index.html (accessed May 2012).
7. Convention on the Rights of Persons with Disabilities, see: www.un.org/disabilities/default.asp?navid=14&pid=150
(accessed May 2012).
8. Convention on the Rights of the Child, see: www2.ohchr.org/english/law/crc.htm (accessed May 2012).
9. Convention on the Elimination of all Forms of Discrimination Against Women, see: www.un.org/womenwatch/daw/
cedaw/cedaw.htm (accessed May 2012).
10. International Conference on Population and Development (ICPD ’94) Programme of Action, see: www.unfpa.org/
public/icpd/ (accessed May 2012).
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13. Making Sex Work Safe, see: www.nswp.org/page/makingsex-work-safe (accessed May 2012).
14. IPPF (International Planned Parenthood Federation) Charter onSexual and Reproductive Rights, see: www.ippf.org/
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16. Global Forum on MSM & HIV, at: www.msmgf.org/index.cfm/id/11/aid/5244 (accessed May 2012).
17. SHE programme, see: www.shetoshe.org (accessed May 2012).
18. SHE human rights information, see: www.shetoshe.org/knowyour-rights (accessed May 2012).
19. Namiba A. Peer support for pregnant women with HIV in the
UK, Oral Presentation, joint RCOG/BHIVA Multidisciplinary
Conference, London, January 2012. Available at:www.bhiva.org/RCOG-BHIVA-2012-AngelinaNamiba.aspx (accessed May 2012).
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