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.

Law on Trial

On Saturday 3^rd of July I was invited to speak at the event Law on Trial  at  Birkbeck College. My comments followed a lecture by Simon Watney, an hugely inspiring activist and academic, author of the seminal book Policing Desire.  I must admit: I was very nervous of speaking among all those high flying academics!

 I focused my comments on how HIV, poverty and the current policy context are affecting women living with HIV in the UK.

Around 30.000 women are currently living with HIV in the UK and their numbers have been steadily growing since the beginning of the epidemic. It is concerning  how current policy, such as the 10 years old sexual health and HIV strategy, ignores the vulnerability produced by gender inequity and gender violence. 

In the UK poverty and immigration policies marginalize women and make them vulnerable to abuse. Many women supported by Positively UK have been in the immigration system for years, living on 30 pounds vouchers a week.  Some of those HIV positive women are pushed by their economic circumstances to be in relationships that can support them economically.  They would not choose those relationship if they were economically independent. We could call this sex work, even if it doesn’t happen in the streets or in brothels.

When a woman enters such an unequal relationship it becomes very difficult to protect herself. For example negotiating condoms and disclosing her status could provoke rejection or violence. This context is an obstacle to become more open about living with HIV, it promotes stigma, and can make HIVpositive women potentially more vulnerable to be taken to court for HIV exposure and transmission.

I have done out-reach in prison for the past ten years and one of the most worrying trends that I have witnessed is the growing number of immigrant women imprisoned because working with false papers. Those are hard-working women who had never committed a violent crime (or any crime) in their lives. They have broken UK laws not by stealing, but by working. Earning money is a necessity. Their income is mainly needed to support HIVpositive relatives and children back in their countries.  Those women are often taken from prison directly to detention centres to be deported to countries where HIV treatment is still not available.

Within this context it is appalling that organizations like Positively UK, which have been very successful in developing the voice, visibility and advocacy skills of women living with HIV, have to struggle to continue their work.

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.

Returned to Risk

Last week I went to the launch of ‘Returned to Risk’ a report by the Human Rights Watch on the deportation of HIV-Positive migrants. It was held by the All Party Parliamentary Group on HIV and AIDS at the House of Common. The report highlighted the unfair treatment of HIV positive migrants, not only in the UK but all over the world.

In Saudi Arabia, for example,  all migrants are compulsory tested for HIV. If they are positive they are imprisoned and then deported without provision of care. This is done not only with HIV-positive people, but also with those infected with Hepatitis C, B or TB.

South Africa has also a really poor record of treating immigrants. Often migrant mine workers are deported without treatment if found HIV – positive or with TB. They are viewed as a disposable asset. Even if it is  against the young South African constitution. At the moment there is an estimated 3.000.000 Zimbabwean refugees in South Africa. 17.000 get deported back to Zimbabwe every month. One wonders how many of those forcefully sent back are positive, how many of those will die because of lack of access to medication?

At the meeting there was also a courageous  Malawian woman, Ivy,  currently living in the UK and expecting to be deported soon. Ivy is on third line HIV drugs, which are impossible to find in any developing country. She voiced her fear and anger at the prospect of being returned to a place where she will not find the medication she is on and will probably face illness and death. Ivu has been volunteering for a number of organizations and charities in the North West of England contributing to our communities for the past 6 years. The home office told her “Go and continue your good work in your country”.

The Human Right watch states in this report: ‘ The principle of non-refoulement, articulated in refugee and human rights law, establishes an absolute prohibition on the forced departure of a person to another state where there are substantial grounds for believing that the person would be in danger of being subject to torture or other cruel, inhuman or degrading treatment or punishment’

However the UK government is obviously not listening, because while it preaches its commitment to the Millenium Development Goal of Universal Access to HIV Treatment, it still doesn’t guarantee HIV treatment to failed asylum seekers in the UK, and deports people with HIV to countries where they will most certainly die because of the lack of appropriate medical care.

The African HIV Policy Network is running a campaign to stop the deportation of HIV positive migrants: Destination Unknown. You can sign the petition here.

It was great to see that discussion on this crucial issue for people living with HIV was brought up, especially in a site as the House of Common. However I was quite disappointed by the fact that those who attended the meeting were the usual people from the HIV sector. Once again we were preaching to the converted. If we want to move forward in securing access to HIV treatment for all in the UK we must work harder to reach those who are not already on our side. How can we do this?

Update on Deportation of Lady X

We will not be able to stop the deportation of Lady X – this is how I decided to call the lady that was ‘snatched’ from Northern Ireland to be taken to a detention centres first in Scotland, then in Manchester and was  moved yesterday to Yarlswood, in Bedfordshire.

 There is nothing I, or any of us, can do to stop it. Her flight back to Malawi is booked for tonight. I spoke to her on the phone yesterday. I had to gather the strength to call her. I just couldn’t face saying: there is nothing that can be done. But anyway, I though it is better that she goes knowing that there are people here who care about what is happening to her. She sounded OK on the phone. She told me that she has a 2 month supply of medication and the HIV organization which supported her in Northern Ireland will send her another three months. Obviously she was concerned about what would happen afterwards. She is on second line treatment which is not available in Malawi, one of the world poorest countries.

What will happen when her medication runs out? What will she do in a country she left over six year ago? How will she find a home, a job, medical and psychological support? What can I – and you – do about it?

HIV and Deportation

I have received an alarmed email from PozFem members from Northern Ireland.

A lady from their group who had been living in Northern Ireland for over six years was taken to detention centre and is going to be deported back to Malawi, were she has nobody, on Wendsday.

Last Thursday she went to the police to sign as she does as part of her process of applying for asylum. She was taken directly from the police station to a boat who took her to Scotland. She didn’t have anything on her, not a toothbrush, or a change of clothes and worst of all, not even her medication. Her mobile phone soon ran out of batter and she didn’t have any access to her friends any more, all her numbers were in the phone.

From Scotland she was taken to Manchester and from Manchester she will be taken to Yarlswood in Bredforshire. She has a flight booked to be taken back to Malawi on Wendsday. Somehow the PozFem members in Ireland have managed to keep in contact with her. Thank to them she now has ARVs for a month and some clothes. But obviously she is really distressed because she doesn’t have anybody left in Malawi. Through ICW we are trying to get contacts there that can help her.

The trauma of her deportation is deep.  We know from the experiences of others who have gone through similar circumstances, such as Jewish women during the holocaust for example, that being taken suddenly for deportation and detention  to a place where most likely one can expect to face illness, hardship and death,will have deep repercussions on one’s mental and physical health for a long time.

I am ashamed that a country like the UK can treat a person who is looking for safety here with such inhumanity.

If you have any idea on how we can highlight the inhumane treatment of HIV positive Asylum Seekers or how we can help this lady please contact me.

Do What Africans Do or Life as an Immigrant with HIV

I am on holiday at last! And somewhere very very hot: Miami. It makes for a happy and relaxed me- at last!

I had a busy time before leaving. Last week-end I was in Bath where I facilitated the PozFem South West meeting. The aim of the meeting was to introduce PozFem to the women in the South West of the UK as well as get a picture of the experience of Stigma in the region.

We were in a lovely place just outside Bath: the Ammerdown Centre.  It rained most of the time – as usual for an English summer-  so we couldn’t really enjoy country walks, but we had a lot of time to bond and talk to each other.

The group wasn’t very big, we were 11. But Wales, Cornwall and Devon were represented. As well as Zambia, Zimbabwe and Kenya.

One of the  participants , I will call her A,  when we arrived looked very tense. She set at the margin of the circle of chairs and didn’t speak much. In the afternoon we completed the questionnaire for the Stigma Index. When we finished we opened the discussion. I think it is always important to have time to talk about what came up while completing the Index because it can be emotionally really straining.

A said: ‘ Living in this country as an HIV+ immigrant has robbed me of all my dignity. I came to the UK in 2003. In my country I was a valued member of my community. I worked as a teacher. However, since I became HIV+ two thirds of what I earned went into buying the medications I was on. The money left wasn’t enough to live on. I was really struggling. I thought that if I came to the UK I could work, earn a better wage, pay for my medication and have enough to live.

The Home Office took my passport in 2003. Since then I have been going to sign at a police station every month. Last year, once,  I went to the Police station and they said that my case had been refused and I had to be deported. They kept  me in a  cell at the police station for 5 days. I couldn’t wash, change clothes, or even brush my teeth. I didn’t even have my medication. I called my local HIV charity, but they said that nobody could come and help me – they didn’t have time. Finally another member of PozFem managed to bring me clothes and my medications. I was moved to a detention center. They said I would be put on an plane and sent back to my country. I asked to see the detention center’s doctor. I explained to him my situation, that I was HIV+ and if he could please arrange for me to have a couple of months supply of HIV medications so that I would have enough time to find out where and how to get ARVs in my country.
He said: ‘No, it is not possible.’
I asked him: ‘What am going to do then?’
‘Do what Africans do’  Those were his final words.

My lawyer managed to get me out of the detention centre and bring my case to appeal.  I continued waiting. I have waited for 6 years. I am fed up. I had to change ARVs and the combination I am on is not  available in my country. But I am so fed up, I just want to go back. I asked the Home Office to give me back my passport. I want to go. But  I am still waiting for my passport…’
A ‘s story stirred so many feelings within us. We were moved, sad, but above all really angry at the inhumane way she had been treated.  Almost as she was a criminal. But her only ‘Crime’ is to have been born in a poor country where HIV is still a death sentence for most people.

We realized once again that it is so important that us, PozFem members,  let others – and especially those in power-  know what is happening to people like A.

By the  end of our meeting A looked more relaxed. One of my best memories from the two days, was walking in the breakfast room  and see A talking animately to other members and burst out laughing.