Prevention Revolution

I want to make this clear. I am completely in support of early testing and universal access to ARVs. However I am pretty doubtful that the ‘Test and Treat’ approach can work in the real world as an effective prevention strategy.

Untangling what works in prevention is not an easy task, and this is probably why the HIV epidemic hasn’t been halted yet. One of the  most interesting approaches to prevention is the concept of  ‘Combination Prevention’.  This has been around for the past few years and was prominent at the last International AIDS Conference Vienna 2010.

As we know, HIV is a complex virus that can not be stopped by one single drug once it is in our bodies.  This is why a combination of 3 or more drugs, is used to attack it from different angles.  Likely, the use of several strategies to prevent the virus to even enter the body is seen as ‘Highly Active Prevention’ or ‘Combination Prevention’.

As in HIV treatment there are many classes of drugs, so there are different components of Combination Prevention.

Behavioural : start using condoms and femidoms, delaying starting having sex, choosing partners who have your same HIV status (sero-sorting),  having not penetrative sex, using clean injecting equipment etc. .

Bio-medical Interventions: access to ARVs for PLHIV, ARVs used as a Pre Exposure Protection ( PreP) or Post Exposure Profilaxis (PEP), Microbicides (when we will have them!), Male Circumcision etc

Structural : availability of harm reduction for drug users, gender violence, gender inequity,  poverty, homophobia, racism, HIV stigma etc

Those ‘ingredients’ need ‘boosters’, like some HIV drugs, to make things happen:

Political will: the support of political leaders, governments, multilateral agencies.

Economic investment: Money is needed to carry out research, as well as for delivery of all  prevention aspects. Obviously AIDS funding is an increasing struggle in the present economic climate.

Community Engagement: People who are infected or at risk of becoming infected need to be involved at all the stages of prevention planning and  implementation .

One of the prevention success stories presented at Vienna 2010 was the evidence from the World Bank that cash transfers  to young women in Malawi and Tanzania were associated with lowering HIV infections among those adolescents. This clearly shows the links of between a Structural element (poverty/ access to cash) and Individual behaviour (not using sex in exchange of money/school fees or other benefits) and how they can result in preventing  HIV infection.

One of the of the major challenges of  Combination Prevention is the need of more evidence and of clear  evaluation processes . It is very difficult to understand what is working in the short or long-term and how the different elements interact and influence each other. Social scientists are looking now at developing a Combination Evaluation!

7000 people are infected with HIV everyday.  Complacency in not an option in prevention. UNAIDS  has called for a Prevention Revolution.  Here is the video launching the campaign:

Test and Treat

Test and Treat was one of the few sessions I was ‘kind of able’ to follow at the latest British HIV Association (BHIVA) conference in London at the beginning of the month. In spite of all my ‘activism’ when I listen to very scientific presentations my brain switches off and most of the information passes over my head.

Anyway here is a very simplified version.

In the past few years it has become clear that an undetectable viral load does reduce infectiousness immensely. This is why, for example, preventing mother to child transmission is so successful once women have an undetectable viral load.  And this is also why the Swiss Doctors released the controversial ‘Swiss Statement’ giving the green light to unprotected sex to monogamous, heterosexual, sero-discordant couples on effective treatment.

This topic is crucial to the world of public health not because the grey suits really want us who live with HIV to have guiltless and condomless sex, or ‘Nyama Kwa Nyama’,   doing it flesh to flesh,  as my Swahili speaking friends say with starry eyes.  What really matters to policy makers is finding a shortcut to prevention. World Health Organisation (WHO) believes that if with undetectable viral load you can stop sexual transmission of HIV we can treat our way out of the epidemic. All it is needed is: testing everybody on the planet every year (!) and putting them on ARVs straight away, regardless of CD4 count, for the rest of their life.

Professor Myron Cohen, from the University of North Carolina, who opened the session, highlighted three major concerns clouding the picture:

• Transmission of resistant viral strains

• The contribution of patients with acute and early HIV (subjects who are not likely to be detected routinely but contribute substantially to the spread of HIV)

• The practicality of the idea.

Prof Myron also gave us the example of a recent study in China among 1927 sero-discordant couples on treatment. This study reported around 4% transmission among couples where the HIV positive partner was on ARVs. This study was not considered conclusive because they didn’t use viral load monitoring.  However it provides a real life example of some of the problems of ‘Test and Treat’.

The second presentation of the session, by  Dr Steve Taylor from University of Birmingham,  looked more in-depth to the scientific side of preventing HIV transmission. In order to reduce sexual HIV transmission it is crucial to understand better how HIV works once it is inside the body. Some drugs can  penetrate the genital tract  and stay there at a good level,  thus protecting us from passing the virus.  But not all the drugs work the same way and the collection of samples of genital fluids for research has its challenges!

What I find really exciting is that the criteria of reducing sexual infectiousness will be paramount in developing new drugs and  better combining the drugs we already have.  Personally I was really relieved and felt immediately less infectious just  by knowing that the drugs I am using score really well in the genital tract!

A poster presentation by Dr Taylor and the team he works with, including more information on how different drugs penetrate the genital tract is available here.

As a person with HIV I am definitely very excited at the idea that one day I may  not be considered a viral threat to the world. I think that if sexual infectiousness could really be eradicated this would play an important role in decreasing stigma.

However, I think there are several problems with the ‘Test and Treat’ approach. Firstly an ethical one: is it right to give  somebody potentially toxic treatment in the name of prevention? And could this lead to human right abuses in which vulnerable and stigmatized populations, such as sex workers and drug users are forced to be tested by the police?

Secondly an economic and political one:  in a time in which we can not even test and offer treatment to millions of people who are dying of AIDS around the world, because of lack of money and political will, discussing the ‘Test and Treat’ model seems a  purely academic exercise.

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?”

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