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.

My birthday

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

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

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

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

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

Silence is Volence

Receiving an HIV diagnosis is often experienced in terms of violence. Stigma is violence: and it is often the first symptom of HIV, manifesting as shame, guilt and blame. Those feelings are experienced today, here in the UK. Many of the newly diagnosed women I meet tell me: “I would rather have cancer than HIV”. I find it really saddening, especially when HIV treatment is in most cases more successful and easier to take than cancer treatment. And I do really hate making comparison between experiences of illnesses.

For many women, in this country, and around the world, the link between violence and HIV is extremely direct. Women in violent relationships are much more likely to become HIV positive:

1)When a relationship is violent and sex is coerced women cannot negotiate safer sex.

2) Forced sex is more likely to cause tears and injuries to the vagina creating routes for HIV to get
into the body.

3) Men who are violent have often other high risk behaviours: multiple sex partners and drugs and alcohol use.

Inequality is also a form of violence. It is not surprising that out of 4.5 million young people (16 to 24) with HIV 3 millions are young women, mainly concentrated in Subsaharan Africa. The links between poverty, violence against women and girls, and HIV are easily visible.

Violence does not stop when one gets an HIV diagnosis. Revealing we have HIV can start a violent response. Tragically this is especially true for those of us who are diagnosed during pregnancy. An HIV diagnosis can also make violence escalate. As women living with HIV escaping an abusive and violent relationship is very difficult. The fear of our HIV status being made public is paralysing, alongside the fear of not finding another partner who will accept us and love us, as we have HIV. The shame linked to being at the receiving end of violence compounds the shame of having HIV: silencing many of us. We hesitate to go to the police, as many have faced ignorance around those issues in many institutions including prosecution services. The fact that HIV transmission is often criminalised also stops us from accessing support. What if we are accused of giving HIV to our partners? How will we prove our innocence? What will happen to our children if our status will be revealed? Will they be assumed to be HIV positive? Will they be taken away from us? Will they be bullied and shunned at school?

A recent study in an East London hospital revealed that 52% of women with HIV who responded to a questionnaire had experienced Intimate Partner Violence in their lifetime. A participatory study lead by women leaving with HIV in the UK, revealed the extent and the breath of the violence.

Violence is not just at the hands of our partners: institutions are violent. For example, here in the UK, we are sometimes blamed for wanting to be mothers by the healthcare workers who should be there to support us. Young women with HIV are denied contraception, even in the UK. In many
other parts of the world we get sterilised without our consent.

On the 14th of February the Sophia Forum, with Positively UK“s support, will hold an event at the House of Lords, synchronised with the One Billion Rising mobilisation, to launch the report on a feasibility study on the links between HIV and Gender Based Violence in the UK. It will convene: women living with HIV, policy makers, healthcare professionals and other service providers. We will ask for our realities to be acknowledged and for our basic human rights to be upheld. We are asking for action to end the violence against us.

Please take a minute to think what action you could take. We want to be heard: silence is violence, ignoring us is violence.

To read more about the issues:

Violence Against Women Living with HIV/AIDS: A Background Paper Fiona Hale and Marijo Vazquez

Visibility Voice and Vision a Strategy for Women Living with HIV in the UK

Is somebody taking notice of the links between Gender Based Violence and HIV?

Robbed of choice: forced and coerced sterilisation experiences of women living with HIV in Kenya

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

S

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

 

Key Populations Living with HIV

 

Silvia and Mluleki, General Secretary of NAPWA,South African network of people living with HIV

This is going to be my last post of the year and I would like to dedicate it to a deeply inspiring meeting I attended in in Cape Town South Africa a couple of weeks ago.

I was part of a privileged group of over 20 advocates who work to promote the rights of people living with HIV defined ” Key Populations”. We were invited to South Africa for 3 days by the Global Network of People Living with HIV (GNP+) to contribute to a consultation on how national and regional networks of people with HIV can work better and being more inclusive and better representative of those groups.

There is still quite a lot of debate about who these “key populations” are: mainly the term is used to define the groups of people who are at most risk of acquiring HIV, as well as those who, when HIV positive, face multiple layers of stigma and discrimination. Previously they were referred as “High Risk Groups”, but this definition was rejected because it inherently “blamed” those who often are most vulnerable, of bringing HIV onto themselves by taking risks.

A narrow description identifies key populations as: men who have sex with men, people who do sex work, people who use drugs and transgender women and men. Many women living with HIV argue that because gender norms and patriarchal power imbalances compound our vulnerability to HIV and exacerbate our experience of stigma and discrimination when living with HIV, we, as women, should also be considered as a key population. There is still not consensus on this.

Personally I agree with this vision that women are a key population, especially since we are so disproportionately affected by HIV. The specific way in which HIV impacts on us, and the importance of advancing the rights of all women, but especially women with HIV, has been creatively adressed in the report produced by UNAIDS “Women Out Loud”, released just a few days ago. The report includes a wealth of in depth gender specific data on women and HIV as well as the contribution of 30 women living with HIV activists, offering insights and strategies on how to end AIDS. I have co-written the second chapter on women who use drugs with Frida Iskander from Indonesia and Fila Jung from the US.

Personally I think that it is critical to include women and a gender analysis in our work with key populations. Challenging gender norms and promoting women”s rights go hand in hand with questioning notions of femininity and masculinity. Overcoming limiting and limited notions of what it means to be a woman or a men are central to an approach that promotes equality and dignity of all gender identities: including gay men and women, bisexuals, transgender men and women, intersex people, and generally the queer community which doesn’t identify with a binary hetero-normative vision of gender roles.

I would like to leave you for this year with some images from the posters we designed at the Key Population consultation in Cape Town illustrating some of the key advocacy issues we face.

One of my favourite posters was a clear call for solidarity among key populations:

I also really liked the advocacy priorities for South Africa: 1) access to good quality treatment, 2) access to good nutrition 3) ending criminal prosecution of HIV transmission.

The invisibility of transgender people, who are disproportionately affected by HIV

The plight of sex workers. Here is Daisy a sex worker, pictured with her high heels and lovely hair, crying because she cannot access health care, testing, condoms, and very often gets criminalised. Daisy was very witty, in face of horrible discrimination. She told us that when she went to the HIV health centre she was refused treatment. They told her: come back with your husband. She replied “I can come back with YOUR husband!”

The divisive and stigmatising use of punitive laws, against sex work, drug use and transmission of HIV.

We also went to visit SWEAT an organization that campaigns and promotes the rights of people who do sex work. Here is a posters used in their advocacy.

It was a deeply inspiring meeting. I was humbled and moved by hearing some of the most appalling stories of discrimination and abuse, but also uplifted by the courage and resilience in the face of enormous hardship, prejudice and rejection. If you are interested you can read more on the meeting here.

Please, please please…. take some time before Christmas to  support the People Living with HIV Call to Action, also promoted by GNP+

 

 

I Have a Dream

click to watch video

For the Italian version please see end of the post.

I have a dream that all women, but especially Italian women, one day will be free!

Free from narrow views of what being a woman is.

Free from being made a sexual object.

Free from all the subtle and less subtle sexual harassments in everyday life and the work place.

Free from violence.

Free to be what we want to be.

Free to have the relationships we really want to have. And not just that we have to conform to some wifey stereotype.

I have a dream that all women can enjoy pleasurable sex when we want and how we want it , and that we have a super easy to use gel, or ring, or other easy way to protect us from HIV and other STD. And many more choices to prevent HIV.

And I have a dream that Italian women who like me have HIV can feel like anybody else.

I have a dream that women living with HIV will take treatments that have been well researched on us during clinical trials, so we can feel totally safe.

I have a dream that women living with HIV like me will not have to live in fear and shame, but we will walk with our heads high and our strength and beauty will be celebrated and promoted.

I have a dream that one day we will not be continuously manipulated by the media and incessant subtle messages to aspire to a one dimensional version of being female which diminish the complex creatures we really are.

I have a dream, one day Italian women living with HIV, and all women, we will all be able to live our lives how we want to live them. One day we will all be free!

Click here to know more about the ‘I Have a Dream‘ project , by the Salamander Trust, and hear what women living with HIV around the world dream.

In Italiano (grazie alla traduzione di Silvia Bandini)

Io ho un sogno, che tutte le donne, ma soprattutto le donne italiane un giorno saranno libere!

Libere dalle visioni ristrette di cosa significa essere donna.

Libere dall’essere considerate un oggetto sessuale

Libere da tutte le molestie sessuali subdole o meno subdole che le accompagnano nella vita di tutti i giorni e nel posto di lavoro

Libere dalla violenza

Libere di essere quello che vogliamo essere.

Libere di avere la relazione che vogliamo veramente avere. E non solo perchè dobbiamo conformarci allo stereotipo della brava mogliettina

Io ho un sogno, che tutte le donne possano godere di un sesso piacevole quando vogliamo e come vogliamo, che sia molto facile trovare un gel o un profilattico femminile o un altro strumento semplice per proteggerci dall’ HIV e dalle altre MST. E numerose opzioni per prevenire l’HIV.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, possano sentirsi uguali a tutte le altre.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, potranno usufruire di trattamenti che sono stati ben studiati sulle donne durante gli studi clinici, in modo da poterci sentire completamente al sicuro.

E io ho un sogno, che le donne italiane che vivono con l’HIV come me, non dovranno vivere con paura e vergogna,ma camminare a testa alta e la nostra forza e la bellezza sarà celebrata e promossa.

Io ho un sogno, che un giorno non saremo continuamente manipolati dai media e da incessanti messaggi subdoli che ci spingono ad aspirare a una versione unidimensionale dell’essere femminile che sminuisce la nostra vera natura complessa.

IO ho un sogno, che un giorno le donne italiane che vivono con l’HIV e tutte le donne, saremo in grado di vivere le nostre vite come vogliamo viverle.

Why do we need a cure?

Speaking Up guest blogger – Angelina Namiba

On the evening of Wednesday 21st of November, fellow HIV activists Winnie Sseruma, Silvia Petretti and I were invited to a posh dinner at which Professor Francoise Barre-Sinousi was the keynote speaker. Prof.Barre-Sinousi is the Director of the Regulation of Retroviral Infections Unit at the Pasteur Institute in Paris. She was awarded the Nobel Prize for Medicine in 2008 together with Professor Luc Montagnier for their discovery of HIV.
The event was hosted by the energetic and passionate Professor Jane Anderson, Chair of BHIVA. . Attendees included the great and the good of the HIV sector. HIV clinicians; researchers, heads of HIV charities and the odd celebrity. Winnie Sseruma somehow managed to spot Rowan Atkinson aka Mr Bean, who quietly mingled with the other guests.
The dinner was in the Apothecaries’ Hall, one of the oldest Livery Halls in the City. I was completely over-awed by the surroundings. The Hall’s beautifully furbished Great Hall, Court room and Parlour remain as they were since 1670! It had a most magical atmosphere, nestled in the back streets behind St Paul’s Cathedral it is a portal into another time. The apothecaries’ Livery Company still plays a very active role in the field of medicine today. It was a very traditional English dinner and we were even shown into dinner by the beadle dressed in full regalia!
As we tucked into our posh meal, we listened to Professor Jane Anderson and Dr Sarah Fidler, an award winning researcher on the eradication of HIV from Imperial College, remind us where we are in the search for a cure. The key points both Doctors covered included:
We have been successful to a great extent with raising awareness and developing prevention interventions as well as treatment for HIV, with an armoury of more than 30 drugs now available to treat HIV. But that we are still challenged with HIV related stigma and discrimination.
Vaccines and a cure are possible, but they will probably not be in the form that we envision them. They might be functional because HIV keeps changing and therefore interventions might include treatment. It might be that people living with HIV with an undetectable virus might be able to stop their treatment for a few years and still remain undetectable.
In order for us to continue to make the impact we want in addressing HIV, we need to not loose the focus on women and addressing issues that affect us.
BHIVA is at the beginning of starting to invest in research for a cure as well as continuing work around clinical trials.
One of the key lessons both professors have learnt as we advance towards the search for a cure, is the importance of listening to and working with people living with HIV. That the information and lessons they have learnt from people with HIV have made their work worthwhile.
The speeches were brought to a rousing end by my friend and colleague Silvia Petretti who succinctly provided a patient’s perspective on why we need a cure. Firstly to ensure good quality of life, daily pill taking coupled with long term side effects hugely impact on people”s ability to fully enjoy their lives. Secondly stigma, which will only go away if HIV can be cured, like other sexually transmitted diseases. And last but not least because of economic reasons: with over 34 million people living with HIV worldwide, and most of them in low or middle income countries, we cannot afford to keep them on treatment for life, surely there are better things we could do with that money.

The take home message – neatly wrapped in a glorious relaxing herbal tea bag in our goodie bags – was the simple fact that, if we infuse hope with the dream, add imagination to the knowledge and skills gained we can, with everyone’s (patients; clinicians; researchers; political will; funding and community) support, find a cure. So as you all go about your daily business, try and take a moment to contemplate a world where HIV does not exist. Many amongst the 34.2 million of us women, men and children currently living with HIV today dream of that day.

Change Starts With Each and Everyone of Us

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

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

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

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

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

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

What does a good health care worker look like for a woman living with HIV?

Today was one of my least favorite days of the year. It was the day I had to have my annual smear test, to check my cervix is healthy and there are no signs of cancer. Women living with HIV have to do this every year in the UK. The GP surgery had called me a few weeks ago to remind me, and also to remind me of my flue jab. As usual I kept procrastinating. But as the cold increased in London I realized it was a good idea to be immunized, and checked ‘down there”.

Probably because I wasn’t exactly looking forward to it I kept pottering around the office and left late. I arrived at the surgery 15 minutes late. The nurse, maybe in an act of revenge, kept me waiting, and when after 10 minutes she let me in the visiting room she scolded me:
‘ I don” t do late”
‘ I am sorry” I said
” First let”s do the flue jab”
Before I could even think about it she had it out of the fridge and she stubbed my arm.
“It”s nothing” she said.
I put on a stoic expression . When I turned around to look at my painful shoulder I noticed she was not wearing gloves.I was stunned.I am used to be treated as a walking health hazard.
” Why are you not wearing gloves?’ I asked her
“Do you say this because of your status? ‘ She replied.
‘ Yes… But no… Well even if I wasn’t…So many people have it and they don”t even know it…’ I was thinking at WHO recommendations about Universal Precautions, but decided not to say anything.
” Oh come on! It”s only a flue jab…. If I was taking your blood I would wear gloves…but I have never had a needle stick injury doing a flue jab!”

Somehow I felt warm inside. I felt grateful to be treated like I wasn’t a dangerous threat. I was a person. When she finished with the jab. She looked at the computer screen and asked me ” Do you need any contraception?” “No thank you I said” and in my head I thought what a nice thing to ask a woman with HIV.

This felt especially good this week. On Tuesday I was at a meeting Positively UK had organized with the Women and Health Equality Consortium (WHEC). The meeting was attended by many other women who work in England supporting women living with HIV. We were looking at what were the needs of positive women today, and how we could have influence within the changed NHS structures .

Many participants reported that they had heard many women living with HIV in England, especially young women, being denied contraception, even when they directly asked for it. Many health workers just assumed that women with HIV must use condoms. However, we can only use condoms with the full support of our partners. And not all men, or women, like using them. Nowadays even the BHIVA treatment guidelines recognize that some people may not want to use condoms but choose to use treatment as prevention. The guidelines recognize that because of scientific evidence that effective treatment and an undetectable viral load can reduce the risk of person with HIV passing the virus to a sexual partner to very low level, comparable to condom use, people are entitled to start treatment to support them not passing HIV to their partner, just for prevention. However, some health care providers in the UK are still denying contraception to women living with HIV. Moreover dual protection has been recommended for HIV positive women for many years, and even acknowledged by UNAIDS. It was really sad to hear that this very bad practice is most diffused towards young women, who often lack the confidence to challenge it. Abusers of power target those who are most vulnerable and most unlikely to challenge them.

I wish every woman living with HIV coming out of a GP surgery could feel how I felt today when I walked out of my GP surgery. Head high, smiling. A woman that doesn’t” cause fear. A woman with the same desires, rights and access to choices as any other.

Did You Know What Women Living with HIV Want?

Here is a short video made by women living with HIV to support UNAIDS aim that no child may be born with HIV. As women living with HIV this is  of the utmost importance to us, however we also know very well  that this is only possible when our rights are upheld and advanced.

I am really honoured that I have collaborated with all those women living with HIV from every part of the world in promoting our rights and protecting our children.

Another fantastic initiative by UNAIDS is the campaign by young women who were born with HIV here is their vision: The hopes and dreams of young women growing up with HIV. Some of the young women who produced the statement have been  through Positively UK’s peer mentoring programme and have worked with us as youth peer mentors. Once again a clear proof of what can be achieved through our structured peer support model.