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+

 

 

Women living with HIV and drug use

When we talk about women who use drugs it is important to realise how gender power dynamics are at play. Women who use drugs are disproportionately more likely to be HIV positive, compared to men who use drugs because our vulnerability is compounded by gender and other structural imbalances such as poverty or belonging to ethnic minorities.

Some of us, women who use/ have used drugs,  may have also been involved in sex work, and some of us may have had transactional sex just to get the drugs. Even if one doesn’t directly exchange sex for drugs or money, negotiating sex on our own term can be difficult when under the effects of drugs and alcohol. Many of us who use/have used drugs may suffer from mental health problems such as depression and low self-esteem often born of traumatic experiences in our childhood. Experiences of child abuse and neglect are very common among people who use drugs. Because of this fragile emotional context some of us may use sex to feel wanted, to cope with  loneliness, or just to have warmth and intimacy: enforcing condoms may make us look as ‘fun-spoilers’ or may just bring rejection. All of this enhances our  risk of acquiring HIV and other STI.  The ‘ritual’ of injecting is often lead by men and women are often last in the line, either being injected by their partner or ‘senior’ drug users. Because women have more fat often it is more difficult to get a vein to inject and it may take several tries before successfully injecting, thus increasing the risk of acquiring HIV and other blood borne viruses. Harm reduction services should be sensitive to all those issues and not only provide clean needles, but also teach women how to inject safely, without having to depend on somebody else. It would be also good if harm reduction services also included sexual health services where women could get support and a safe space to discuss their sexual health needs. Simply handing out condoms is not enough!

Those of us who are HIV positive face a lot of stigma both  within HIV services and drug services . Society doesn’t envisage a person who uses drugs as a ‘mother’. Often even within HIV support organizations a woman expecting a baby who is a drug user will be treated in a very negative way, as if she cannot possibly be a good mother. But women who use drugs are women like others, with the same desires and rights as all other women, it is important that we can choose to be mothers and be supported. There is a lot to deal with for us during pregnancy because many of us may live not only with HIV but also with Hepatitis B and C. Living with so many viruses makes our decisions around treatment and pregnancy very complex. It is essential that services for women living with HIV who use drugs are not judgemental and support us understanding complex medical information around HIV, HCV and HBV and also offer us access to Sexual Health and Reproductive Services: this include contraception, abortion services, post abortion support and also support to have babies and be a parent. Those services need to be integrated with HIV services, provision of ARVs, clean syringes, opioid substitution etc. The Ukrainian network of people living with HIV has produced some excellent documentation on how positive women on opioid substitution can go on being good mothers and living satisfying lives.   Integrated services should be provided in ‘one-stop’ shop, or very closely located, because one cannot spend a lot of time going from one place to another, especially if she is a mother and a drug user, there is not much free time.

The fact that we use/have used drugs doesn’t mean we are useless, or powerless. Some of us use drugs, often to numb feelings that are too painful, but also because drugs are fun and enjoyable. With the right structure, acceptance, recognition and support drug users can achieve great things. For example Positively Women was founded by two women who acquired HIV through injecting drugs. It was 1987 in London and services available at the time were all structured around the needs of gay men. Those two women, Jaynie and Sheila started a support group in their front room. At the beginning the clinics didn’t even want to publicize their materials because they thought that two ‘junkies’ couldn’t possibly do something useful. They persevered and slowly women started to turn up. Within a few years they were doing educational sessions in schools, outreach in prisons and supporting hundreds of women. The charity still exists and is now called Positively UK: it supports also men but it  has maintained an ethos of peer-support and all the services are offered by people living with HIV, including people who use drugs, and with a strong focus in addressing gender issues working with both men and women. If it wasn’t for the group started by Jaynie and Sheila, two women who used drugs, our organization wouldn’t exist.

Prison Health is Public Health

Today at the XVIII International AIDS Conference in Vienna, for the first time a plenary session was dedicated to HIV in Prison.

Dmytro Shermebey, one of the leaders of the All Ukranian Network of  People Living with HIV opened the session. He spoke of his personal experience of spending nine years in a Ukrainian prison. While he spoke pictures of prisoners, and prison cells were projected on the massive screens in the plenary hall. Dark spaces filled with emaciated young men, barely over boyhood, with  spider arms, reminiscent of Auschwitz. Prison meant: hunger, lack of sanitation, overcrowding, lack of air. It is not surprising that to be able to cope with those conditions prisoners had to use the most powerful painkiller in the world: heroin. Harm reduction, drug substitution therapies, clean needles and condoms are not available in Ukrainian prisons, and in the majority of prisons around the world. Dmytro recounted how syringes were shared by prisoners. One blunt needle would be sharpened on a stone over and over again in order to be reused .  It is not surprising that HIV prevalence in the global prison population is always much higher then in the general population.

Today plenary showed the world that those young men were clearly not only deprived of their liberty, but also robbed of all dignity, food, and health. Those are all fundamental Human Rights.

Dymitro explained to us that he survived because he fought.  But, many of his friends have died and are still dyeing.

I have been visiting women living with HIV in prison since 2001, when I started working for Positively Women (now Pos UK). Dmytro’s presentation made me appreciate all the good things of British prisons: above all access to ARVs, methadone and, at least in the few female prisons were Pos UK has been doing outreach, peer support. However I also know too well how damaging, traumatizing, and disempowering the experience of prison is,  especially for women .

So many of the women I see in prison have tragic pasts; addiction, abuse – including sexual abuse – neglect, and poverty are recurrent themes. I believe many of them suffer from mental health problems.

One of the biggest problem about the situation of women in prison, even in the UK,  is that it is severely under-researched. For ‘security reasons’, everything about prison is very guarded.

From my experience of supporting hundred of women I can affirm that prison is very hard for any body, but the added burden and terrible anxiety of having to guard the secret of HIV makes it a lot harder.

In the UK prisons women are a fast-growing population. According to the Prison Reform Trust Report of 2006 in England and Wales, the number of women has increased by more of 200% in the past 10 years compared to a 50% increase in the number of men in prison during the same period. At present, there are more then 4,200 women in prison in the UK.

This increase in the UK follows global trends towards a greater use and popularity of imprisonment and a lack of interest in constructive alternatives such as non-custodial sentences. Those would be particularly relevant to drug offenses and non-violent theft. Drug offenders in particular, would be better dealt with by therapeutically addressing their addiction.

Prison has a tremendously harsh effect on women, for several reasons. Firstly, women offenders are often the sole carer of their children, (more often then male prisoners). Their imprisonment and separation from the children can cause major psychological traumas, which are very difficult for both the mother and the children. This has grave repercussion for all of us in the communities were those children live. If they are the head of their household, their incarceration could result in the loss of their home, and serious disruptions to the lives of the children.

Since there are fewer women’s prison, women are more likely to spend time in a prison which is far away from where they live, so that visits from family and friends are extremely difficult. Women in prison can experience profound isolation, which has an effect on their often already compromised mental health. Additionally, because there are few women’s prison, women convicted from a wide range of offences are often imprisoned together. This means that the overall regime will be determined by the maximum-security requirements of a very few high-risk prisoners. Overall, the prison system was designed to deal with male prisoners, because of this it actually often discriminates against women.

If you add to this bleak picture the hurdle of living with HIV, and often of being diagnosed, while in prison, it is clear that there is an extreme urgency for a radical prison reform that takes into account gender equity and the right to health of women prisoners.

A comprehensive reform of the criminal justice and prison system was called for in today’s plenary session by Manfred Nowak, the UN Special  Rapporteur on Torture. He stated: ‘Prison Health is Public Health’.

I applaud the International AIDS Conference for having dedicated for the first time a plenary to Human Rights violations in prison. However I hope that this is not a one off token session. I believe that it is crucial to discuss more of the gender dimension of prison and how it increases women’s vulnerability to HIV and negatively affects physical and mental health.  We still know so little about this, especially on a global scale. Hopefully we will do this in Washington in 2012.

Leadership

Silvia Petretti and Vuyiseka Dubula

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HE THEME of Monday, the first day of the conference, for me has been leadership. Maybe it is because I was facilitating a workshop on developing leadership skills for women living with HIV, with my comrades Angelina Namiba and Inviolata Mmbawavi.

During the session we tried to address the issue of openness. We asked participants: on a scale of one to ten.  How open are you about your status? Where would you like to be? What needs to happen for you to move just one point on this scale?

After those questions we aimed to build a tree of action with post-its on a flip chart.

We asked participants:

What can you do personally to move forward and be more open as an HIV positive woman leader?

What can you do to move forward as a leader with the support from other people living with HIV?

What do you need to campaign for your government to do?

The aim of this exercise was to inspire a process of moving from the personal, to the collective to the political, and understand how all those elements are part of one continuum.

Those questions kept resonating in my head and manifested during the course of the day.

The plenary featured Vuyiseka Dubula the Director of Treatment Action Campaign, the organization instrumental in making HIV treatment affordable in developing countries: thanks to their tireless campaigning. She exemplified the power of openness.

A South African HIV positive woman from the township advocating for Positive Health Dignity and Prevention. This is an approach to prevention that acknowledges equal responsibility of negative and positive people in the transmission of HIV. People with HIV in this paradigm are not seen as mere vector of infection but as actors who can promote prevention, within a context where human rights are fully respected.

Bill Clinton also spoke at this first plenary. He may no longer  be the President of the USA , but made a very strong call for political action and for continuing funding the epidemic. Clinton spoke for nearly an hour and it would be impossible for me to capture his incredible skills and charisma as a public speaker.

Among the many things he mentioned was the need for new fund raising strategies such as those adopted for Haiti earthquake, where a huge number of people gave small amounts, through text messages and the internet.

Obviously he had to speak quite a length on how it is crucial at this point in history, in which we have reached some tangible goals, not to retreat because of the economic crisis.

He made once again the point that the economic argument for promoting Public Global Health, needs to be made stronger: “Health Care is not just a right is an economic investment,” he said.

To conclude his speech he made a ‘bucket list’,  things he would love to see happen before he kicks the bucket: “What I really care about is to see my grandchildren, an for all grandchildren of the world to grow to know their grandparents.” We have done good but we need to do better if we want those two generations to stay healthy and meet.

Bill and Vuyseka represented for me, some answers to the personal and political questions about leadership I had asked the participants of my session. Even though Clinton had been harshly criticized while he was in power, for doing very little for people with HIV.

My question on what we can do as people with HIV to move our leadership forward was addressed in the last session of the day: GIPA at the Grassroots Level and Beyond. GIPA means: Greater (and Meaningful has been subsequently added) Involvement of PLHIV.

It was historically born in the Denver Principles in 1983, and signed as a full declaration by 42 countries in 1994. GIPA means that PLHIV should be involved at all level of decision making in the response to the epidemic.

During this session many examples of collective action by PLHIV were exemplified. The most striking for me was the Ukrainian Network of PLHIV, one of the largest networks of PLHIV in the world with over 200.000 members,  100 of them are open about their status.

They are the principle recipients of the 6^th round of funding from the Global Fund. In spite of the fact that most of its members are or have been drug users (a group not exactly famous for political action and expressing power) they have made ARV’s and drug substitution therapies a reality in their country.

It has been another amazing day here in Vienna. One of the most moving events has been that at the end of our session on leadership two women, one who had been positive for 17 years, and one for five, disclosed their status to the group. It was very emotional, but it was also an honour to witness those two women take their first step towards leadership.

In Memoriam of Z

This is the most difficult article I have ever had to write. I can not use the name of the person. I can not say where she was from. Her family has given me the permission to write an obituary about her as long as she can not be identified. When I need to hide the identity of people I write about I often use letters of the alphabet. In this case I will use Z: the last letter of the alphabet, to reflect how we, as a society, had left her last for most of her short life.

I first met Z during one of my first outreach visits to prison when I first started working at Positively Women nine years ago. She was then a blond and bubbly twenty something, who, already, had been diagnosed with HIV and HCV for a few years. She had grown up in one of the poorest parts of the UK, in a family already deeply affected by drugs and alcohol addiction and sexual abuse: an unoriginal tale for a woman who ends up in prison.

I saw Z frequently for many years. She had a voracious drug addiction and committed petty crimes to feed it. Z was in and out of prison, usually staying for a few weeks, sometimes months. I met her twice on her release at the prison gates to give her support in her struggle to be assigned accommodation from the homeless unit. Z had a learning disability and could hardly read or write, so she needed a lot of help. At the homeless unit, we spent our time queuing up, filling forms, begging, and quarrelling with housing officers. I remember I would become discouraged easily, but Z was extremely tenacious and resourceful and would continue insisting when I was ready to give up. Obviously it was her accommodation that was at stake, but it gave me a glimpse of a side of her which was very different from that of a powerless, desperate, drug addict. There was a real force in her. How would you survive on the streets for years and feed a very expensive addiction if you weren’t tough, ingenious, and able to use any meagre opportunity you are presented with?

Both times we went to the homeless unit she was assigned some form of accommodation. We were so excited we had succeeded in getting a place. The first time we travelled all the way to the northern outskirts of London by bus, carrying two bin bags with Z’s belongings. When we arrived the place was a cold and squalid studio flat, without furniture, just a bed without sheets or a duvet. I felt sad when I left her, as if I was abandoning her. The health adviser had given her a piece of paper with a written plan for the whole week: names and numbers for Detox day-clinic, probation, hospital, Positively Women etc. I promised to contact her the following day, but I couldn’t find her, her mobile phone went directly to answer phone. I saw her a few weeks later, in prison. She told me that she had gone out to get fish and chips, but she had become disoriented and couldn’t find her way back. I didn’t blame her. I wouldn’t have wanted to find my way back to that bare and lonely place myself.

The second time Z got accommodation from the homeless unit was a hostel infested with other addicts. That time too when I left her I felt totally hopeless. The accommodation and support on offer was totally inadequate to support her. This meant that she couldn’t properly take care of her health. It felt like her life was not worth much.

In the last couple of years Z changed. Her hair had become darker, her natural shade, her cheeks sank in, she was aging quickly. Every time she was arrested she arrived, drawn, skinny with CD4 count always not over double digit. Her bubbly side quietened. When I saw her in prison I felt a sense of relief. I knew that it was the only time she would have medication, food and a secure roof on her head. After a few weeks, she would start looking better and putting weight on. The last Christmas of her life she spent it in prison. She told me that she committed a crime so she could be arrested, and be safe behind bars. She couldn’t bare spending Christmas in the streets. Z had changed a lot, she was more thoughtful, she really wanted to quit drugs and had made contact with her teenage daughter, she hadn’t seen her since she was a baby, and she was being looked after by other relatives. Z was dreaming of cleaning up and visiting her.

Z was offered a place in a rehab in a rural area. But it didn’t work, somehow her status was disclosed and she experienced humiliating discrimination. Her plates and cutlery were separated and people avoided her for fear of infection. She ran away, back to the streets of London and I saw her a few weeks afterwards in prison.

Z died of an overdose, on her own, in a homeless hostel, a year ago.

Women in Europe Vienna 2010 and Beyond

On the last week-end of October I was back in Vienna to participate to a meeting among HIV+ women in Europe. Most countries were represented including some ex-USSR and Central Asia places (it is very very bad that I don’t remember the name of all those places…I know), Russia, Ukraine, Lithuania, Poland, Albania, Armenia, Portugal, Spain, Italy, UK, Germany were represented,  and possibly a few more I can not recall right now.

So it was again a room full of women with HIV from all different parts of Europe, many languages, many experiences…but also many similarities.

One of the aims of the meeting was to start getting organized so that we can increase women’s visibility and influence at next International AIDS conference in Vienna in July 2010. We also discussed at length to identify key issues to  highlight in July.

On the first day we had an overview of the different situations in different countries, and each woman made a 10 minutes presentation about what is going on an the work that they are doing there.

Needless to say the reports from Eastern Europe were quite chilling. The women from Russia were among the youngest in our group, mainly in their early twenties, but nevertheless, you could see really motivated activists. Russia has one of the fastest growing and largest HIV epidemics in Europe. The official numbers from the government are  low, few hundred thousands, however WHO estimates there are over 1.000.000 people living with HIV and 38% of those are women. The women at our meeting highlighted that even if heterosexual transmission and intravenous drug use are the main routes of transmission , shockingly, some women also get infected in hospitals, because of lack of universal precautions. They also talked about the  immense lack of resources,  especially for women in prison, who don’t have absolutely any access neither to prevention or treatment.

Stigma and discrimination are rampant in Russia, and among the general population there is still  the false perception that HIV only affects drug users and prostitutes. If the women are drug users and want to access HIV treatment they need to register as drug users and this puts them at risk to lose custody of their children. Therefore women often, get really sick and die, because trying to access medication could lead to being separated from their children.

Something that was really shocking for me is what has been happening in Albania. I know that it is one of the poorest country in the EU, but it is also really close to Italy, just a few miles across the water. I couldn’t believe the story one woman told. A mother of 4 children, 3 of them HIV+. They all got diagnosed after her husband  (who had never disclosed to her) died of AIDS in 2004. Two of the children were also really sick, and nearly died because they couldn’t get treatment. I just can not believe that this was happening a few miles from Italy in 2004. This woman fought like a lioness for her and her children rights to treatment, and for once this story has an happy ending and they got their meds in the end and survived. She is now one of the heads of the movement for the rights of PLHIV in Albania.

We had about 10 hours of sharing, it was very very emotional, but also inspiring, it was amazing to learn about the resilience, courage, strength and focus of all of those women.

Some of the main outcomes of the meeting were:

• Setting up a formal network of women living with HIV in Europe and Central Asia, we are hoping to raise funds to register it in Germany. Several women from the meeting stepped up to be on a interim board of directors.

• We drafted a ‘reporting card’ which we want to use to highlight key issues and problematic areas for women in their European countries.

• We started working collecting information among young women (up to 18 years old) in the different European countries.

• We discussed and gave our inputs for a booklet on the 10 reasons why criminal transmission of HIV hurts women.

• We started organizing around setting up a Women Networking Zone in the Global Village – the area of the conference which is open to everybody (also people who can not afford the conference fee)

• My colleague SS – who also works for PW, diagnosed in prison only a few years ago, and has now evolved in a committed activist-  was offered to collaborate in the writing  of a plenary session for Vienna 2010 about PLHIV in prison.

Of course this is a very poor summary of the rich discussion which went on, but I hope it can give an idea of what amazing meeting it was.

This meeting wouldn’t have been possible without the tireless work of Alice Welbourn and Armandine Bollinger from the Salamander Trust, Tyler Crone from Athena Network and  also without the help and warm welcome of our Vienna hosts  Sabine and Wiltrut.

A full report of the meeting is available on the Salamander Trust website here:

http://www.salamandertrust.net/index.php/page/WomenInEurope&CentralAsia/

Vienna October 2009

I have just terminated attending the second Leadership and Accountability Programme Committee (LAPC) meeting to prepare  for the next International Aids Conference. It has been 2 days of hard work. Yesterday from 9 until 7 pm and today from 8,30 until 4. But I am amazed about how much work we have  done. It is very inspiring to be locked up in a room with such a bunch of committed people.

Our job was distributed between planning plenary sessions (the massive sessions at the beginning of the day where everybody participates), working on 10 sessions which are called ‘Non Abstract Driven Sessions’, and 10 Skills Building Sessions.

The final word on the plenary sessions is given by the Conference Coordinating Committee, and the basic outline of 9 sessions were already given. However we were able to recommend speakers and also to signpost  the topic of 3 plenary sessions. I also really pushed for the recommendation that each plenary should have a positive speaker. I am very happy about this. I have also made a recommendation for a speaker for a plenary session. She is an amazing activist…I will say no more and keep my fingers crossed.  But I have let other positive women from other committees know about her so that they can also support her.

The ‘Non Abstract Driven Sessions’ we planned are also really interesting and include an Open Call for an elected leader to come out about their HIV status. This would have an incredible impact on stigma in countries with high prevalence,  especially Africa. We also have sessions about developing leadership in ‘Key’ population( I have learn that ‘key population’ is a better word for ‘marginalized’).  Other very exciting ideas are:  a session were the youth will hold leaders accountable and another one about De(criminalization), which will include drug use, sexual transmission, sex work,  and really explore the relationship between criminal law and public health.

The 10 skills building sessions were divided into two groups: 5 focusing on accountability skills  and 5 on leadership. I am really happy because we were able to push on the agenda a  ‘Leadership Skills for Women” session, and we hope to have it facilitated by a network of positive African women. Another skill building session we have put on the agenda which is very close to my heart  is leadership skills for drug users, which we hope we can also  offer in Russian.

Those are the highlights of the work we have done, but I tell you, we have been discussing for something close to 18 hours (and probably more since the discussions carried on during dinner lunch and breakfast). My head is still buzzing.

After the meeting I decided to find out the route to  Pure Yoga, the Ashtanga Yoga Studio of Vienna. I studied the map, took the underground, walked around a bit, and now I know the way. Tomorrow, before getting on the plane, I will treat my self to some Austrian Yoga. So I know that when I will get back here for my next meetings, and  maybe even during the conference, I can squeeze a good yoga practice in. That’s all I need to be happy…

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.