BHIVA HIV Treatment Guidelines

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

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

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

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

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

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

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

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

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

Nothing About Us Without Us

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

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

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

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

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

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

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

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

Liberating The NHS : PozFem Response

The past few weeks have been quite hectic and I have been meaning posting about this for ages but between the BHIVA conference The Women and Europe Advisory Board meetings, several deadlines and a high heels heavy bag carrying  induced back ache, I have been kept away from  blog writing against my will!

Anyway today was the last day to submit a response to the White Paper  and I was able at the last-minute to put together the views of PozFem members we gathered at the last meeting in Manchester, on the 18th-19th September. Those views had already been included in a wider response by the Women and Health Equality Consortium, but I felt it was important that we did a response that was HIV specific.

Our PozFem meeting was the largest direct consultation of HIV+ women on national policy. Thirty five women from all over the UK, including Northern Ireland, Scotland, Wales and  of course England from Newcastle to Cornwall. The age range was exceptional from 26 to 68. We covered almost all continents, with Africa the Caribbean, Asia and Europe represented.

One of the principal aspects of  the White Paper is the centrality of patient involvement and patient choice: ” Nothing about me,  Without me’.

PozFem members questioned how  this  applied to people living with HIV. We listed what we viewed as the  biggest obstacles to accessing health services and our meaningful participation:

• Stigma – perceived or experienced

• Confidentiality: not being maintained with serious consequences for those who are ‘outed’

• Culture: Coming from cultures where health is not openly discussed

• Language: Especially for those who are not native speakers, or with low literacy levels, many policy papers and discussions are not easily accessible

• Other prejudices: Racism, drug use, ex offenders, homophobia

• Lack of knowledge of the system: leading to low rates of access to health care

• Lack of resources: The populations with HIV in Britain are often from marginalized communities unable to work or with no access to public funds.

• Lack of time especially for working women with caring responsibilities

A participant to our consultation meeting stated:

“I am HIV positive and live in a small village. I am scared that people will find out and this may also affect my children. How confidential are my notes? Can the nurse, or receptionist see them?… I always travel to the hospital for any health issue even if it’s over an hour drive… How am I expected to get involved?”

To support and increase involvement of PLHIV in Health Watch Boards and other participation systems  we recommend that peer-support services which aim to develop confidence, voice, and advocacy skills of PLHIV are supported both at local and national level.

Changes in Commissioning

A fundamental change proposed by the White Paper is to abolish the Primary Care Trusts, to cut management costs, and move health commissioning in the hands of GP, who, it is assumed, have a better understanding of health needs at community level. To take up this role GP will gather together and form commissioning consortia.

We are concerned that GP’s consortia may not be well placed to commission HIV services and Sexual Health. Because of stigma and other prejudices (homophobia, racism, negative attitudes towards Injecting Drug Users and people who are or have been in prison, etc.). Many of us living with HIV have fears and difficulties disclosing HIV status to our GP and accessing health services at this level. PozFem is concerned that the complex social and health issues many of us face would not be understood and appropriately addressed at this level without a serious investment in training and confidence building for GP’s and patients.

We recommend that specialized HIV services continue being commissioned at regional/national level. This will allow better drug pricing, as well as retaining the expertise gained in the areas.

We also recommend that expertise around Sexual Health, HIV (especially testing) is developed at GP and GP consortium level, and that people living with HIV play an active role in delivering trainings and supporting this development.

We also recommend  the creation of   ‘Equality Champions’  roles to be involved at every level in the planned  Health Watch Boards, Health and Well-Being Boards, National Public Health Services and Local Authorities.

To conclude I would like to include some quotes from PozFem members on some crucial aspect of providing health services for women living with HIV.

Peer Support Services:

“The Government needs to recognize that peer support is more than just ‘having a cup of tea in a church hall’. It has health outcomes: it improves adherence to medication (which saves a lot of money because people do not develop resistance and move to more expensive drugs), better mental health, coping strategies, disclosure, prevention, challenging stigma, patient engagement. We are the experts.”

Representation at all levels

“Not just at grassroots level. The Government needs to implement the Greater Involvement of People Living with HIV (GIPA) – as recommended by UNAIDS.”

Addressing Stigma

“ This needs to happen throughout government sectors. Especially Health, Education and Employment.”

‘Decreasing stigma with an effective and pervasive anti stigma campaign will also have an effect on testing. Lots of people don’t test or test when they are really ill because of the stigma”

Being Heard

“We need to be really heard, and our views incorporated in policies. Not just ticking boxes. We would like to see what we do get in return for our participation in consultations. What’s in it for us?”

‘

World Aids Day

World Aids Day is the one  day in the year when the world remembers about HIV.

Most of the time this means pictures of somebody dieing in Africa. I don’t dismiss the fact that the African continent is carrying the heaviest burdern regarding HIV. However I am concerned that we often avoid looking in our own back yard:  how HIV is affecting people in the UK and how we respond to the epidemic here. It is extremely important that countries like the UK lead by examples and practice what they preach. I have previously talked about how the UK, who supports ‘Universal Access to Treatment’ for developing countries has excluded HIV from a list of communicable diseases that should be treated in the whole population, including failed asylum seekers and immigrants without papers. Why HIV has been singled out as an infectious illness that can not be treated in this country in those already extremely marginalized populations?

Stigma.

It doesn’t only exist in the hearts and minds of people, but also still survives in core health policies and institutions.

This is why I am so happy this World Aids Day saw the release of the first findings from the Stigma Index roll-out in the UK.

Here is an extract from the IPPF press release:

‘ New research led by people living with HIV shows physical and verbal harassment a common reality for people living with HIV in the UK.

Newly published research documenting how people living with HIV in the United Kingdom have experienced stigma and discrimination – and have been able to challenge and overcome it – makes it is clear that the problem is still widespread within UK society.

The research, conducted over the last 6 months, asked people to report their experiences in the last 12 months.

Key findings show that people living with HIV face significant stigma and discrimination:

• 21% (185 of the 867 participants in the research) of people living with HIV had been verbally assaulted or harassed
• 12% had been physically harassed because of their HIV status in the previous 12 months

The Stigma Index is the first research to comprehensively document the experiences of people living with HIV that is driven by people living with HIV.

The results highlight concerns that stigma and discrimination within some parts of the NHS are denying comprehensive and quality care for some people living with HIV and can create obstacles that impede access to care and support services:

• 146 participants (17%) report being denied health services because of their HIV status at least once in the previous 12 months
• 18%, nearly 1 in 5 people, stated that it was clear to them that their medical records were not being kept confidential, a further 42% of participants felt uncertain that their medical records are being kept confidential

Research has indicated there is a need to address attitudes and develop strategies for change, to educate and support the health service to meet the needs of people living with HIV more effectively.

More positively, the research makes it clear that people living with HIV are at the forefront of confronting and overcoming devaluing attitudes, speaking out against prejudice and challenging stereotypes:

• 45 % of people living with HIV had personally confronted, challenged or educated people who were stigmatizing them
• 84 % had supported other people living with HIV ‘

More information is found at the IPPF site.

The findings of The People Living With HIV Stigma Index were presented on November 30th at the Houses of Parliament.

Andy Burnham, MP, Secretary of State for Health, had been invited but couldn’t come and nobody from the Ministry of Heath participated to the launch. Also the ex vice-president from Zambia had been invited , but was absent. What does this tell us about political leadership on the issue of stigma?

In spite of the silence of our politicians I would like to say that people living with HIV did a lot of work:

Adrienne Seed, Poz Fem Regional Coordinator for the North West was interviewed on This Morning on ITV. You can watch her here

Alice Welbourn, also a PozFem member, wrote a moving article for Open Democracy: When Things Fall Apart, where she charts her own personal experiences of what she learnt about HIV, about herself and about others during her early years of living with her diagnosis. She reflects on how traumatic experiences can also be ones of growth and self-knowledge – and how HIV has much to teach us all.

I also had a few opportunities to raise awareness: I recorded 15 interviews in conjunction with Mac AIDS Fund which have been broadcast on over 120 radios on the 1st of December. I also published an article with Open Democracy on HIV and Gender Violence ant this blog was featured in ‘The Best of the Web’ by The Guardian On Line and received hundreds of hits.  I was also featured in the World AIDS Day campaign by the National AIDS Trust.

I know many of the Regional Coordinators from PozFem have been up to several things, so if you are reading this blog and would like to share your contributions on World AIDS Day it would be great to hear it.

Not All Is Well On The Western Front

Wow what a week…It felt like I never stopped. I have just arrived in Vienna for my second meeting for the Leadership and Accountability Programme for the next International Aids Conference.

On Thursday I attended the BHIVA conference, and Gus – who is holding the position at the moment- announced me  as the new Community Representative. The reality hit me that it is going to be hard work, and I will need a lot of support from the ‘community’ I need to represent. I hope that my election will bring about some fresh air. To begin with, it is the first time that a woman, and somebody who wasn’t born in the UK is elected.

I thought that a first step to start to get a feeling  of what the “community’ of people living with HIV believe is important,  was to ask them what I should highlight during this meeting in Vienna, and what they thought could be good topics for plenary sessions. So I posted my question on the UKCAB web  forum.

The response I had is that it is vital to highlight that even in the so called ‘High Income Countries’, there is large potential  for improvement. A lot has been achieved, but there are still huge problems for certain sections of the population to access treatment and testing (migrants in particular), and that travel restrictions an widespread stigma and discrimination still hugely impact on the quality of life of people living with HIV. Since the conference is set in Europe, it should focus also on the realities of those of us who live in Western Europe. Not all is well.

On a similar note, something that really shocked me at the BHIVA conference was what was said during the presentation on the guidelines for treatment of co-infection with hepatitis C.  Somebody asked  how many people are accessing  treatment with pegylated interferon and ribavirin. The answer was shocking: only 50% of those with co-infection are accessing treatment. And who are the excluded? Injecting drug users, who are deemed incapable of sustaining such a difficult treatment. But have they thought about how to support drug users through treatment? Have they looked at solutions? I don’t think so. I don’t think a lot of medical professionals really believe that those are patients who deserve treatment like all the others. It is clear that even in the UK if you are, or have been an IDU, you can be denied your  right to health.

What Does Stigma Mean to You?

1. Labelling – dirty

2. Name calling – Prostitute

3. Looked down upon

4. Discriminated against

5. Disapproving

6. Shame

7. Indifference

8. Blame culture

9. Unworthy

10. Held-back

11. Anger

12. Taboo

13. Judgemental

14. Second-class citizen

15. Disclosure

16. Harassment

17. Fearful-ostracised

18. Stress

19. Isolation

20. Anxiety

21. Unfair treatment

22. Seen last during appointments

23. Rejection

24. Lack of confidence

25. Bullied-victimised

26. Ongoing suffering

27. Powerlessness-no voice

28. Marginalised-invisible

29. Worthless

30. Dehumanised-sub-human

31. Unloved

From POZFEM-UK flipcharts. Northern Meeting, Newcastle 6-7 June 2009

Openness

I am a firm believer that being open about our HIV status is a powerful tool to challenge stigma around living with HIV.

The fact that only a handful of women in the UK are willing to do it is a clear indicator that this is impossibly difficult.

I believe often women are not open about their status because they need to protect people they love, often their children and families. Other times they are just terrified of the consequences. The possible violence, or just the rejection and the isolation they would experience as a result.

I think that I had a ‘relative advantage’ in my openness. Firstly, my employer is an HIV organization, so it wouldn’t (at present at least!) affect my employment. Secondly my parents are both dead. So I don’t worry about upsetting them. Thirdly I am single and without children. I don’t have to be anxious about the consequences of my openness on others I care about. And above all,  I had incredible support from other women living with HIV here at PW as well as incredible role models like Angelina Namiba, Winnie Sseruma, Alice Welbourn, who also are women living openly with HIV.

One of the most exciting ideas from the Leadership and Accountability Committee meeting I participated to in preparation for the next International Aids Conference  is to make a call to political leaders in high prevalence countries to ‘come  out’ about their status. Is it possible that there isn’t anyone? I don’t think so.  

We had a very lively debate about this and some questioned: what would the point be? The point would be to show firstly that anybody can live with HIV, and secondly that you can live a normal life and even hold great responsibilities, like being a minister or an MP. I think this would have a huge impact especially in Africa where stigma is still at the highest levels. Obviously we are not planning to ‘Out’ anybody. But wouldn’t it be great if somebody in power said: ‘Yes I am HIV positive, so what?’

First Meeting in Vienna

Now I  have decided to use this blog to record my experience of being part of the Programme Committee for the next International AIDS Conference which will take place in Vienna in July 2010.

How did I happen to be here?

My first International AIDS Conference was in 2006 in Toronto. I described that week as the worst week of my life! Days starting at 6 am with sessions until night, demonstrations, networking dinners, jetlag, being with other 20.000 people all day, the noise, the crowd, the amount of information to take in… One day I went back to my room early (around 5) thinking of taking a nap before having dinner with some other activists, but woke up the morning after. That’s how exhausted I was. I even missed dinner!

One of the most important momenst for me in Toronto was seeing Louise Binder, an HIV+ lawyer and AIDS activist speak at one of the last plenary sessions…Her opening words  ‘ I want to speak with you about power…the driving force behind the HIV epidemic today. Where power resides, the virus recedes. Where it does not, the virus thrives. Today, the virus is thriving…’

By the end of the conference I had a resolution. I had to manifest my power, OUR power. I knew that the work we do at PW had a lot to offer to this conference.  I told myself…I am not coming back to this hell unless I will be offering some of what I have learned…

Fast forward 2 years and in 2008 I had an abstract accepted for an Oral Presentation for the conference in Mexico. My abstract talked of how working together with ICW we had supported the advocacy and leadership skills of 25 Regional Coordinators, developing PozFem UK, the national network of women living with HIV.

So what next? I told myself…Maybe being part of making the conference happen…? Be careful what you wish for…. A friend I made in Mexico suggested I applied to be in one of the Track Committees. So I did. And so I got selected to sit in the Leadership and Accountability Track Committee.

Today during the first  brainstorming meeting we were asked what we hoped to achieve with the next conference and I told them the story I just told you.   I concluded that I want the conference to be an opportunity to develop leadership skills at the grassroots, especially among women.

I felt so intimidated today, everybody seems a professor, or working for UNAIDS or WHO and once again I doubted myself…. I have lived with HIV for 13 years volunteered and worked at PW for 10, I have visited positive women in prison for the past 8 years. But I still doubted my knowledge, experience, commitment and passion in front of so many ‘big’ people.  I know I shouldn’t. One week doesn’t go without me not listening from other women who live in so called ‘civilized’ Britain of horrible experiences about fear, shame, blame, rejection and physical and mental abuse and violence. And in spite of this I have seen how through the support they receive from other of us who live with HIV they learn to deal with whatever they are facing,  and sometimes even become activists.

I know that if I am not here talking about what I have heard from so many of us, in support groups, or when I go to  prison…who is going to do it for us? I hope that me being here will bring many more of us   to Vienna in 2010 not just as spectator but as central actors.

Well I better get off my soap box and go to bed now…I have a long few days ahead of me and I better be fresh and rested.

History Lesson: Gay Men and Activism

Last month watching the Oscar winning film Milk made me reflect more deeply on the role gay men have had in creating and developing HIV activism. Milk is the moving life story of Harvey Milk, the first openly gay man elected to public office in San Francisco 1978, and his subsequent tragic assassination. The film made me reflect on the connections and influences between the movements for gay rights and the movement of People Living With HIV and AIDS (PLWHA). It also made me reflect on the present weaknesses of activism in the UK.

Of course the first connection between the movement of PLWHA and the gay movement is historical. In 1981 the first name for AIDS was GRID: Gay Related Immune Deficiency. The acronym was created by the Centre for Disease Control (CDC) following the death of a group of men in Los Angeles who were openly homosexual from PCP (pneumocystis carinii pneumonia), a type of pneumonia that at that time was ‘almost exclusively limited to severely immune suppressed patients,’ such as older patients or those receiving cancer chemotherapy. GRID was soon changed to Acquired Immune Deficiency Syndrome (AIDS) as the number of gay men dying continued growing, but other groups started dying inexplicably from similar infections, mainly injecting drug users and haemophiliacs.

Gay men came to the tragedy onset of the AIDS pandemic equipped with a lot of experience in fighting for their rights. Many of the men who were supporting Harvey Milk became in the 1980’s, AIDS activists, and set up organisations such as ACT UP – which I think has the coolest acronym in the history of AIDS activism, it stands for AIDS Coalition to Unleash Power!

The official birth of the Self Empowerment Movement of People with AIDS (PWA) – as it was called then, before HIV was discovered – was in 1983 in Denver during The National Lesbian and Gay Health conference in which the first manifesto for a political network of PLWHA was launched. The manifesto is known as the Denver Principles. I think you would agree with me that those principles are as valid as ever:

The Denver Principles

We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness and dependence upon the care of others. We are ‘People with AIDS.’ [sic]

RECOMMENDATIONS FOR ALL PEOPLE

1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.

2. Don’t scapegoat people with AIDS, blame us for the epidemic or generalise about our lifestyles.

RECOMMENDATIONS FOR PEOPLE WITH AIDS

1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.

2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organisations.

3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

4. Substitute low-risk sexual behaviours for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.

RIGHTS OF PEOPLE WITH AIDS

1. To as full and satisfying sexual and emotional lives as anyone else.

2. To quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.

3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardising their treatment and to make informed decisions about their lives.

4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.

5. To die — and to LIVE — in dignity.

The film Milk also made me think about another strong connection between one of the crucial issues of the Gay movement and the movement of PLWHA. A central part of the film is when Harvey Milk has to deal with Proposition 6, an initiative to ban gays and lesbians from teaching in public schools. While addressing homosexuals around the US, Harvey Milk urges everybody to come out, so that all in society can realise that they know and love somebody who is gay or homosexual. Harvey Milk’s words made me realise the fact that the great number of people, just in the past few decades, who have come out as gay and lesbians has contributed enormously to an increase in the acceptance of gay and lesbian people in society, and the recognising and upholding of their rights. I am also painfully aware that we still have a lot of ground to cover and our society is still very homophobic. However, huge steps have been taken just in recent times, such as the legal recognition of gay marriages through civil partnership, in the UK. That advancement would have not been possible without the courage of so many homosexuals who in spite of society’s widespread prejudices have been open about their identity and vocals in reclaiming their rights.

Milk made me once again realise that being ‘out’ and ‘open’ about living with HIV is key if we are to eliminate HIV related stigma. It is only when people realise that HIV is not about ‘Us’ and ‘Them’, when everybody realises that they know and love somebody who is HIV positive or has been affected by HIV, that prejudice will diminish and maybe even disappear. This cannot happen until more of us are open about our status.

I know it is hard, I know it is impossible for some of us, who fear they will harm loved ones, or that they could experience rejection, isolation or even violence… However, this is what gay people too had to face and many of them in conjunction with HIV! Living openly with HIV is a crucial weapon to challenge the stigma and discrimination that are still rife in society. If we are not going to do it… Who is going to do it for us?

I don’t mean that we all have to go public and speak on the 6 o’clock news! But I believe every little act of openness is a manifestation of self-acceptance and a further step towards creating a more compassionate and supportive world for PLWHA. It may just start with a few friends, our neighbours, somebody we work with, our children, our families… Every time we disclose to more people safely, we become more empowered and we push prejudices and shame away.

So if you disclose to somebody new in the next few days, weeks, months or years… pat yourself on the shoulder because it is an important action for all of us living with HIV!

Reflecting on openness has made me realise that the group that have been most closeted about their HIV status are heterosexual men, especially white men (with a few exceptions mainly among haemophiliacs and injecting drug users). I guess the main reasons could be: firstly because of their general ‘advantage’ in society they are the ones who would lose the most (income, social status, opportunities for sexual partners etc.). Secondly, maybe, most men are brought up to express less their feelings and emotions and therefore stay longer in denial around many of the issues around HIV. Thirdly, they have been often demonised in the world of HIV as ‘vectors’ of infection, unwilling to wear condoms and the main cause of growing infections among women (who in return have often been ‘victimised’). Those are the main reasons I imagine, but I would be curious to know more.

Probably the small number of people who are open about their HIV status in the UK is also due to lack of support and a weak activist community. It is interesting to see that in the US, the National Association of People with AIDS (NAPWA) in collaboration with POZ magazine have launched this year a new initiative called the Denver Principles Project, which aims to recommit the HIV community and increase their membership. They are aiming to have 100.000 members by the 1st of December 2009, World AIDS Day. I would really like us, in the UK, to join the activists from the States and recommit ourselves to the Denver Principles; and, in order to do this, to create a Network of People Living with HIV. Of course, there are organisations that campaign and speak on our behalf. However, it is not the same thing as having our own voice, and such a network would make the existing campaigning organisation more effective. With the number of us living with HIV always increasing it is crucial that we form a network which includes HIV positive men and women of any sexuality and race… It is almost unbelievable we don’t have one yet! What are we waiting for?

For more info on the Denver Principle Project http://http://www.napwa.org/denverprinciplesproject

HIV…all grown up?

 

 

Last week I have received the latest National Aids Trust  report with a  question as a title:  ‘HIV… all grown up?

 

I commend the report for having a wide scope including  prevention , treatment, testing, poverty, stigma and discrimination  and much more. It is very pragmatic and not only has it included ‘priorities for action’ but also more specifically:  ‘Four things we want to see in four years time’ for each heading’.  However, as I turn one page after the other my initial sense of approval and admiration lessens considerably. Page after page it seems that the reality of women living with HIV is not included in those challenges. . Women are mentioned about three times…  but only  as an appendix as in : African men and women.

 

In the final page the report claims: ‘We listen to people living with, and affected by, HIV and those who support them and we put the needs and rights of HIV positive people at the heart of everything we do”… So did they listen to women??… Why should they listen to women..?

 

Well maybe because 35% of people living with HIV in the UK are women! Women’s infection have grown enormously in the past 10 years. In 1997 women accounted for only 25% of new diagnosis while in 2006 they had reached 40% of new diagnosis (HPA 2007).  Doesn’t this ring any alarm bells?

 

I am not aware of any consultation of women living with HIV by NAT to find out what were our challenges and recommendations. Since I am deeply involved with most organizations of women living with HIV in the UK I think I would have heard about it.

 

If such a consultation had taken place areas which would greatly benefit from a gendered approach might have included (but there is more):

 

Prevention

 

It is widely acknowledged that women globally are more vulnerable to HIV because of their anatomy as well as socio-economic and cultural circumstances: especially gender inequities and gender violence. A gendered approach wouldn’t just benefit women but also men. Understanding how gender roles make both men and women more vulnerable to HIV needs to come at the centre of the debate around prevention in the UK. 

 

Testing

Testing HIV positive and disclosure to partner can be extremely difficult for women who can often experience violence rejection  and abuse as a result.  More research is needed in this area. But can generic testing and supporting services offer appropriate protection and support to women vulnerable to abuse and violence?

 

Stigma and discrimination

 

Stigma and discrimination don’t exist in isolation but are often multilayered. Homophobia and racism have been acknowledged to play a central role to compound HIV related stigma and discrimination, but so does sexism and this needs to be more widely acknowledged.

 

Treatment

Research around HIV treatment has been carried out mainly on men, most clinical trials only include about 20% of women. As a consequence women often experience more side effects then men. There is a need for more investment  in treatment research which will benefit women and that looks beyond Mother to Child Transmission.

 

Those are just a few ideas around some of the headings used by NAT in the report, but almost every section could include a gendered perspective.

 

I understand that consultations are not always easy, but I wonder if the NAT could at least have used Poz Fem report Women HIV and Sexual Health in the UK as a reference. This report was produced by HIV positive women this year during a consultation to review the National Sexual Health Strategy. The report gave as a key recommendation that the approach of the Strategy should be gendered in line with UK laws around equality and in line with international recommendation such as Millennium Developmental Goal 3 on Gender equity.

It makes me extremely sad and angry that influential leading organizations such as NAT that holds as one of its strategic  aims ‘equitable access to treatment, care and support for people with HIV’  has appeared to have  totally ignored PozFem recommendations and how gender issues  impact on the whole society…

 

There is a lot more to be said but I would really like to hear from other people living with HIV how they feel about the report’ HIV … all grown up’? Do you think it reflects your challenges and experiences? Speak up! Otherwise others will do it for you…