Wednesday, 19 January 2011

What we face as women Living with HIV in the UK

Rather than reinvent the wheel I thought I would post here a speech given at The Sophia Forum Round Table meeting, at the House of Lords by Silvia Petretti on the 18th January 2011.

Silvia is a woman living with HIV who I count as a friend who I met through the National womans group PozFem UK.
She also works at Positively UK as Community Development Manager.

This speech gives a good idea of the issues facing women who currently live with HIV in the UK

I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.
I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the 'vulnerable', or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.


Anonymous said...

I am from united states and I hope you remeber me it has been over a year sense we chatted, I am pleased for the women of uk,I am still on my search for Mothers,daughters and grandmothers just like me living with hiv. glad to see you found a way for your voice to be heard

Veritee said...

Hi I remember you - how are you?

I wondered if you wish to meet Mothers,daughters and grandmothers just like me living with HIV in the united states woudl you be prepared to join an open group for those with HIV on Facebook. You could do this anonymously if you wished by starting a FB profile just for this group and using a pseudonym
The link to this group is here: It has many from the USusing it and many women some who are Mothers,daughters and grandmothers

I fnd it useful and hope you wil join us

Veritee said...

But we have NOT found a way of beig heard in the UK.

This speach was just by one of the very few open women in the UK. As she says their are only about 30 of us out of 22,000
We too have a very long way to go.

the black tomatoe said...

wow Vee. Very moving. I have a similar dream/vision for African/Kenyan women.

the black tomatoe said...

wow Vee. Very moving. I have a similar dream/vision for African/Kenyan women.

Anonymous said...

How comes both you and your husband - two heterosexual probably white middle class people - are 'HIV+'? Do you know how rare that is? Are you sure you too were just not ill from something else? Were/are you both or one of you IV Drug users now or in the past, done loads of recreational drugs/poppers, slept around massively so ingested massive amounts of toxic bodily fluids, done lots of antibiotics? It's gotta be something like that honey.

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Veritee said...

Dear Mr or Mis or Mrs Anonymous who left the last post.
How ignorant can you be??

HIV has so long NOT been an issues that affects only certain people deemed to be , in a at risk group,... such as gay, black , African, non white, IV drug users, sex workers only those poor or uneducated.

This is total rubbish, where have you been for the last 10 years or more?

On another planet??

More women have HIV right now then anyone and most are heterosexual and of course we women got HIV from someone so heterosexual men are quite widely represented too.

As for us all being HIV due to .

‘done loads of recreational drugs/poppers, slept around massively so ingested massive amounts of toxic bodily fluids, done lots of antibiotics? It's gotta be something like that honey.’

Please Don't call me honey!! I am not your honey if you have these views, any way I am not anyones honey but my husbands .

And I resent that you pretend that you care about me one iota , as you really do not nor any other who lives with HIV.

And you insult me , so with views like yours you do NOT have the right to call me honey!!!!

But yes some of us may have done drugs at some point in our lives. I did 'experiment 'as a young girl but that was many , many years ago . pre 1975.

But many with HIV have NEVER used a recreational or illegal drug in their lives.

How dare you make such assumptions.Who are you to think you know?

And are you really going to try to say that what I did as a teenager has anything to do with me getting HIV at 50 years old after many many years of living a very healthy lifestyle and eating healthy food, etc etc .

if so ~~then there is no hope for the rest of us is there?
What is it with this blame thing??

that people try to find another reason for HIV than the realiy , which it is a virus that anyone sexually active can get.

Why are they , and you , in so much denial . we have sex, we can get a HIV

Simple !!

And so why do you try to put a blame thing on all of us that have it?
Saying ................

It must be the food we eat
We must have taken drugs or poppers
We must have been promiscuous
We must have practically lived on antibiotics

Oh come on??

Don’t you realise how stupid you sound.

And I thank you that if you write on my blog to tell me how I and others who have HIV are somehow to BLAME for having got it - that you have the decency to identify yourself and not be anon.

After all I have HIV and I have far more to lose than you by being open and I am open and I am writing under my own name.

If you want to comment on my blog, please have the decency to do it in your real name .