Telling your child you have HIV

Guest blog  by Angelina Namiba

Angelina Namiba,
Posirtively UK project manager ‘From Pregnancy to Baby and Beyond’

Telling someone you have HIV can be hard. Telling someone close to you can be even harder. Telling your child you have HIV can be daunting.

There is no right or wrong way or formula to do it. Each child in each family will be different. Some children are old beyond their years at an age as early as 8 and others at 16 are not mature enough to cope with the news that their parent is living with HIV. Generally though, many children are much more resilient than we give them credit for.

When you do decide to tell your child/ren that you have HIV, there are a number of considerations you need to bear in mind. How are you going to do it, where are you going to tell them, when and at what age and why you are doing it.  It is also really important is to be prepared for whatever reaction you will get. Be it a not so good one, you may get a tearful child or one who refuses to talk  to you for days! However, you are also just as likely to get a very positive reaction, one that we all wish for when we tell understanding and acceptance.

 

 

 

Here I touch on ten top tips for telling your child you have HIV

1. Start preparing them from an early age by giving them information in small chunks. You can start off with simple information about viruses and how the immune system protects us against colds.
2. Choose a time and place that you are comfortable with. Make sure that you will not be rushed or disturbed. (Remember, mobile phones can be a real menace!)
3. Decide who you want to be around when you tell them
4. Be prepared with information and basic facts about how HIV is transmitted, how treatment works to keep you well and that with treatment care and good support, you can live for many years.
5. Reassure them that you are well and that you’ll ‘be here still nagging them for many years to come.’ It’s good to tell them when you are well and when they can see that you do everyday things like everybody else.
6. 6.      Try not to make it a big deal. You can say something along the lines of ‘I have HIV, it’s a virus that makes my immune system weak so it is harder for me to fight off infections easily like other people. So I take medication, which makes my immune system strong. HIV doesn’t stop me from doing everyday stuff, we can do lots of things together, go to the park, swim, dance, ride our bicycles.’
7. Explain to them why it is important not to tell other people about it. Why it is not secret, just sensitive information that is best kept within the family as some people out there may not understand.
8. Ask them to ask you any questions they may have. Talk about any concerns, uncertainties or clarifications they may have. It is extremely important to be armed with basic facts about HIV! Check in with them from time to time and be prepared to be asked questions out of the blue!
9. Tell them about other people in the family who know about it. Ask other mothers/friends living with HIV if you can tell your child to talk to them should they have questions. This is important because even though you tell your child about HIV and they accept it, they may have lots of questions or things they don’t feel comfortable discussing with you.
10. Link them in with support. Organisations such as Positively UK http://www.positivelyuk.org/index.php, Body and Soul http://bodyandsoulcharity.org/ and CHIVA http://www.chiva.org.uk/parents/index.html can provide you with one to one; group support and resources around telling children about HIV. Parents with children who themselves have HIV can also benefit with getting support from a doctor, nurse or psychologist. Your doctor will either support you or refer you on to members of their team who are best placed to support you.

The power of peer support.

Last but by no means least, get peer support. A great way to prepare yourself to tell your child/ren about your HIV is to talk to other parents who have told their children. They will share with you their own personal experiences of how they did it, what reactions they got, how they coped and what support they found most useful. You can then make an informed decision about how and when to tell your child/ren.

Telling somebody: ‘I have HIV’

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

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

1)Tell yourself first

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

2)Talk to other people living with HIV

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

3) Know the facts

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

4) We are not a threat

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

5)Tell from a place of power

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

Rejection

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

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

Stigma thrives in silence

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

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

A Letter to HIV on the 16th Anniversary of My Diagnosis

Dear HIV,

Today is 16 years I have learnt that I share my life with you. What a shock it was. At the time, it was difficult to imagine I would be alive today. Here we are in 2013 and it looks like we will have many more years together. It is pointless to think what would my life had been without you.I will never know.

I know that thanks to you I had to take a very good look at myself, and the world. I had to look straight in the eyes of death and illness. Thanks to you I stopped taking my life for granted. I had to ask difficult questions to myself. Recognise my fragilities, and my responsibilities. What was most painful: I had to question the possibility of love and intimacy. How difficult closeness becomes, when your body is a potential threat to your loved one. I have experienced fear, rejection and judgment. And I have found limitless compassion and friendship in my new HIV family. Through you I have met people with courage, purpose and humility. I could start a long list here of women and men, gay, straight, young and old, from every continent. You know who you are. Thank you.

Dear HIV, on this day I would like to acknowledge the gifts that came along with the misfortune of having you inside me. Confronting judgment and stigma, I had to learn to free myself. Which is the only way of freeing others, as we are all connected.

HIV you have been a magnifying lens on the important questions about the world we live in. When we think about you we need to think about power. Where there is abundant shared power: you reverse. Where there is scarcity of power: you thrive. It is not a surprise that you still thrive today among those who have less power: women and girls, gay, queer, blacks, people who use drugs, people who are incarcerated, transgender people, indigenous people, poor people. The ironic consequence is that through you, HIV, I have seen a dialogue starting among oppressed and marginalised groups and factions, who would have never spoken to each other otherwise. Together we may begin to see that to truly challenge you we need to question and change the current power structures: economic, social and cultural.

Dear HIV, t oday I want to thank you, because you obliged me to find and recognise my personal power. You made me manifest a strength I didn’t know it was mine. Firstly ,for a long time, I felt weighed down by shame guilt and fear, but had to rise up to it. This was only possible through the inspiration and endless support of my new found HIV family. I am almost sure, without this family I would have lived a much more mediocre and confused life. If I had lived at all.

Finally dear HIV, I can say all those words, because I am still alive. And I am alive because I had the good fortune of being born in a part of the world with free access to medical services, and the medications that keep me alive. Millions of people still don’t .

Thousands die: every day, and today.

The pain for the ones we have lost: never dies.

Coming out HIV positive posing for Marc Quinn cast of my body made with wax and HIV medications, 2004

2009 during photo shoot of Putting Patient First Campaign, with Angelina Namiba, part of the HIV family, and amazing activist

Speaking at the Human Human Rights Rally at the International AIDS Conference in Vienna 2010

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2011 Speaking at United Nation  High Level Meeting on HIV and AIDS,  representing the Global Network of People Living with HIV

 

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.

The End of AIDS?

The conference is wrapping up, and through the exhaustion I ask myself is this really worthy? The big circus of the International AIDS Conference…? With all the millions that it costs: does is ta really make a difference to the 34 millions of people with HIV all over the world? Or to those just a few blocks away from the conference, that still do not have access to treatment?

The International AIDS Conference is a time of slogans and rhetoric: I have heard over and over again:  WE CAN END AIDS! I ask myself… What does this really mean? All the enthusiasm seems to be focused on the fact  that now we know that treatment can prevent HIV: so many believe we can have a medical shortcut  to the end of the epidemic. We even have hope for a cure. However, I know that in spite of the fact that there has been a lot of effort put in having children born HIV free, still millions are born with HIV and will have to grow up in a world were HIV is still a reality. Even if children are born HIV free, so many young people, and especially adolescent girls still become HIV positive, not to talk of all the other groups that are still acquiring HIV at a scary rate, like people who use drugs in Russia.

I feel that the role of this aggressive and negative language doesn’t sustain us in creating a safe and respectful world for the million of us who will continue be living with HIV. We have to find ways to increase our health, wellbeing, access to rights and solidarity. I am fed up of hearing: we must end AIDS, we must end stigma and discrimination. I want to spell out what will replace it! As women living with HIV we had a letter published in the special edition of the IJAS for the conference on the importance of language in creating a world that upholds our rights…But is anybody listening?

Obviously being here has been a great opportunity for me. I have met so many inspiring people. I did a fantastic skill building workshop  on how to use the social media for advocacy. At the workshop there were many women who regularly blog for A Girl Like Me, a kind of portal for women living with HIV in the US to share their stories.  The fabulous Maria Meja co-facilitated the session with me. On the panel I also met Mark King, the man behind My Fabulous Disease, a video blog. Mark has covered the conference in a fun and fabulous  way! Who knows one day soon I may start video blogging!

I have also been blown away by the advocacy efforts of so many of my colleagues especially the speech of Debbie McMilan ( about one hour into the recording) an openly HIV positive transgender woman from Washington DC who spoke of her past life of drugs, prostitution, incarceration with incredible power and dignity. She also told us of her healing and the role of being accepted 100% for who she is (don’t we all need that?) and how the support of her peers through the group Transgender Health Empowerment (THE) turned her life around. It is dramatic and upsetting that the organization has now lost funding.

Also I need to mention the amazing Linda Scruggs, another beautiful Afro-American woman who spoke powerfully on the rights of women living with HIV at the plenary on Wednesday , please watch her! She is also about 60 minutes into the recording.

Another important moment for me at the conference was the meeting women’s networks  organized  with Michelle Sidibe, the Executive Director of UNAIDS, to ensure our meaningful involvement is sustained in the present times of economic crisis. We requested Michelle to help us to keep a gender focus in the response to HIV and to be consulted in all the campaigns that UNAIDS does on women. We demanded to be involved at country level in the monitoring of the Global Plan, we expressed our concerns that we need funding streams that are easily accessible for our grassroots networks. Michelle was very warm to our requests and has made verbal commitments on which we will follow up.  I must say that Michelle Sidibe is an extremely friendly person and knew many of us by first names, he listened and laughed with us, but also took us very seriously…Well Michelle…if you are reading this (you never know…), we are expecting ACTION!

People with HIV come out!

When I started writing this blog, I was hoping it would be something to inspire other people living with HIV like me to get involved and be activist, speak up, become visible. I wanted to make the point that all of us can be advocates. There is so much to say about this enormous AIDS conference, but I do not want to just list sessions and people I met. I want to share the things that continue inspiring me after over 11 years of working to promote the rights of people living with HIV.

Obviously the opening plenary had to be strong, Hillary Clinton was scheduled to speak, and she did a really good job: speaking out not only for women’s rights but also for the rights of people who use drugs and people who do sex work. I never thought the day would come when I saw a US Secretary of State saying such progressive things. She also made some impressive pledges such as continuing funding the Global Fund and 15 billion dollars to study most effective intervention for key population and 2 billion dollars s to boost Civil Society efforts to reach and support key populations.

The star of the day for me however was Phill Wilson, CEO of  Black AIDS Institute, United States. He reminded us of how much work there is still to do and how tough the epidemic is in America. I was shocked to learn that a few blocks from the conference, in Washington DC, there is an HIV prevalence of up to 3.1%, that is like a high prevalence countr.

Phill Wilson spoke as an openly our black gay men, which I thought was awesome.

His public speaking style was really powerful and had a clear call for:

1.  Implement Affordable Health Care act
2. HIV positive people come out
3. Treatment on demands
4. Integrate biomedical and behavioral intervention
5. AIDS organization must retool

I was extremely impressed when he called for positive people who can to come out, he acknowledged that many people don’t because it would be dangerous for them, but it also reminded us that when we come out we not only liberate ourselves, but we help others to stop fearing HIV and encourage people to test and access health services.

The plenary can be view on a webcast  here.

I am so sorry I am so behind with reporting on the conference but so much is going on will try writing more later!

Opening Ceremony

Opening Ceremonies rarely do it for me, however I must say that this time it was moving to have Piscataway ,tribal leader of indigenous people who have lived on this land for over 12.000 years, blessing us and remanding us how we are all connected through our ancestors, not only to each other, but to earth and nature. Well done IAS.

From then on  it went all a bit pear shaped with a series of middle aged men (OK the gay men chorus was nice but it was like another 100 men on stage!). It took quite a few speakers  to finally have somebody HIV positive and under 30: the incredible Anna Sango, a 23 year old Zimbabwean, who called for justice, basic sex education, an end to violence  and against women and more. Otherwise, most of the speakers up to then, had only referred to women as mothers, and treating women only to prevent vertical transmission. WE are not just vectors of infections and vessels for babies! What about those of us who are not mothers?

Michel Sidibe, the Executive Director of UNAIDS,  did a good speech, however he kept referring  to the Global Plan of ‘Elimination’ of HIV all infections in children (and keeping mothers alive….almost as an after thought). I find the word elimination violent, it suggests to me that extreme measures can be taken, and evry time I hear it I recoil.  I know how many women living with HIV are still coerced into abortions, and even sterilisation, as this article published yesterday by Open Democracy by my friend Anca remind us.

Michelle also announced that the Republic of Korea has lifted the Travel Ban for People Living with HIV. Yahey! To conclude he  called for a Robin Hood tax to finance HIV. He reminded us that the end of HIV is possible, but it is not free. It is priceless!

You can watch the webcast of Opening Session here

Living 2012 Day 2

On the second day of Living 2012  many more people arrived from disparate corners of the world, and as always it was moving and slightly overwhelming  to see hundreds of people living with HIV from such variety of countries together.

We continued working on the last two of the three thematic areas identified by the GNP+:  Stigma and Discrimination and Community Mobilization.. Those group discussions were a continuation of the online consultations: carried out in the last months. PowerPoint presentations summarizing the three themes ( Prevention,  Treatment, Care and Support, Human Right, Community Mobilisation) are available to download, with other documents from the summit here)

The discussion was rich, and I must say we were all concentrating hard. I participated to the session on Stigma and Discrimination in health  care settings, and it was heartbreaking to hear so many direct testimonials of lack of care, abuses, negligence, breaches of confidentiality from all over the world. One of the strongest point we made was that we have to continue reporting and collecting evidence on this, as well as strengthen our capacity to develop and use our legal services to challenge those abuses. Accountability  was a recurring theme in most human rights discussions we had.  We must develop systems to hold accountable those who perpetuate human rights abuses.

The second session I attended was on strengthening Networks of People Living with HIV.

One of the great challenges we face is that  of respecting and celebrating our diversity. Looking around the room, I thought, we were doing quite a good job! I have never seen so many church and mosque goers, trans, queer, straight people nodding together before! It is amazing how HIV brings together the most disparate people. However we have to continuously remind ouerselves that there are many different realities in our communities. I personally voiced the concern that by strengthening general networks of people living with HIV certain issues may be weaken, for example gender issues. I know from personal experience how harder we have to work to push for gender issues now that our organization has changed name and remit, moving from Positively Women to Positively UK.

This was my third Living 2012 conference, my first one was in Uganda in 2004 and then Mexico in 2008. I think that in many ways it was the most  successful one in having a wider consultative process and a diversity of view points. However it was deeply affected by the fact that many of our friends and colleagues were excluded by US VISA regulations. Many of our friends from the communities of people who use drugs, people who do sex work, people who have been through the criminal justice system, were not with us and it was really felt. Sadly I think that even some of the summaries of key messages at the end of the conference could have been stronger, for example on the need of integrated harm reduction, HIV and family planning services ( I know it was discussed a lot in our group!).

On a positive note I am humbled but how the voice of gay African men, and men who have sex with men is getting stronger and stronger, compared to the first Living conference I attended. Those men still risk their lives for speaking up and work against all odds in very bigoted communities.

Unfortunately the end of the conference was quite underwhelming, to say the least,  with a closing panel of heads of WHO, UNAIDS who were once again white men, older, from the North of the world. If we want to be ‘Turning the Tide’, as the title of the International AIDS Conference affirms,  we need to have a process that never stops distributing power and opportunities for the most affected populations to be heard and to have agency. I want every single plenary panel to have women, young people, and people who live in the South of the world. We keep saying that we can only do this if we work in union. We now need action: starting from here starting, from now.

LIVING 2012 Day One

Dear Readers, I made  a promise to myself that I will try and report something everyday from my stay in Washington DC . I have arrived yesterday night and today I have attended the first day of the LIVING 2012 summit organized by GNP+. I have also being live tweeting like mad: you can follow me on @HIV_SpeakingUp.

I am high on jetlag, and the change in temperature so not sure if I will be able to make sense. It has been an exciting and exhausting day and I have seen many old friends from different parts of the world.  I will not go in the detail of the conversations we had  during the Summit about key topics such as: access to treatment, human rights, criminalization, sexual and reproductive health and rights.

The issue of treatment as prevention was heatedly debated. So many divergent opinions in the room. Something that stood up once again for me is how important our involvement in designing programs is. A South African woman talked about how now women with HIV are forced to stay on treatment and breastfeed with not access at all to formula

milk , and no choices. This means that women  are expected to stay at home with their babies and take treatment, and give treatment to their babies to protect them from HIV.  If they go to work and haven’t disclosed at home the grand mother or another carer may give formula milk or water to the baby. If babies are mixed fed, the risk of transmission increases: this is because formula milk and even water changes the mucosa of their mouths and makes them more receptive to the little HIV that may still be in the breast milk of a woman on treatment. But what can a poor mother who needs to work for an income do?  I had never thought about this, and I bet neither had the policy makers, who probably made their decision more on the bio-medical evidence then using the experiences of women living with HIV in Africa.

Something else that moved me was seeing the memorial AIDS quilt made by people to commemorate people who died of AIDS.

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HIV, health and human rights – for us all

 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.

Alice’s story

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.

Silvia’s story

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 30^th 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]. [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].

… legalisation

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!

Conclusion

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.

References

References
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).
11. Millennium Goals, see: www.un.org/millenniumgoals/ (accessed May 2012).
12. Vienna Declaration and Programme of Action 2010, see: www.viennadeclaration.com/the-declaration/ (accessed
May 2012).
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/
e n / R e s o u r c e s / S t a t e m e n t s / I P P F + C h a r t e r +on+Sexual+and+Reproductive+Rights.htm (accessed May
2012).
15. IPPF guidance for young people living with HIV, see: w w w . i p p f . o r g / e n / R e s o u r c e s / G u i d e s – t o o l k i t s /Healthy+Happy+and+Hot.htm (accessed May 2012).
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).
20. Gruskin S, Ferguson L. Using indicators to determine the contribution of human rights to public health efforts, BulletinWHO, 2009, 87, 714–719. Available at: www.who.int/bulletin/volumes/87/9/08-058321/en/index.html (accessed May 2012).

Correspondence

Silvia Petretti

spetretti@positivelyuk.org

Alice Welbourn

alice@salamandertrust.net