HIV Self-Testing Scale Up

Angelina Namiba reports from Geneva

On the 8^th and 9^th of April 2013, my colleague Ed Ngoksin, key populations officer for the Global Network of People living with HIV (GNP+) , and I attended a meeting on the implications of  self HIV testing scale up. The meeting was convened by WHO , The Liverpool School of and Tropical Medicine and UNAIDS . It was hosted by the Brocher Foundation in Geneva.

The Foundation is right next to the banks of Lake Geneva, and you could just about make out the snowy Alps in the background! Had it not been such a serious meeting, I might have been tempted to break into one of the Sound of Music classics! However, as I attended the meeting with my GNP+ and Positively UK  advocate hat on, I had to maintain some sense of decorum!

The meeting’s aims were to bring together international experts in HIV self-testing to consider the legal, ethical, gender and human rights implications of HIV self –testing.

 

 

The specific objectives of the meeting were to:

• Review existing, on-going and planned research on public health approaches to self testing and to identify research gaps
• Engage international experts in the debate around HIV self-testing
• Examine and discuss programmatic opportunities and challenges for scale up of self testing, as well as policy concerns related to HIV self-testing
• Encourage donors to support operational and field studies on HIV self testing as the basis of developing normative guidance on HIV self-testing.

What is self-testing and what does it involve?

Simply put, self-testing refers to testing yourself for HIV in the privacy of your home.

The option to self-test at a time and place of a person’s own choosing can create the potential to overcome some of the barriers of stigma, lack of confidentiality and difficulty in access that often apply to testing in HIV test centres or GUM clinics.

A variety of tests, from finger pricks to mouth swabs can produce results in 20 minutes. The first over the counter self-administered HIV test to be approved by the FDA (Food and Drug Administration) the US is the OraQuick in Home HIV test, made by the US company OraSure. It is licenced to be sold to anyone aged over 17 and older in shops or online in the US.

The test works by detecting antibodies to the HIV virus. To do the test, a person takes a swab of their upper and lower gums and places in a tube with a developer liquid for 20-40 minutes. If two lines then appear on the test stick, this indicates a positive test result. It means that antibodies against HIV were detected and the virus may be present. If only one line appears, then the test result is negative. The test is a preliminary (screening) test and results must be confirmed through follow-up testing by healthcare professionals.

Why discuss self- testing now?

If universal access to HIV treatment and care is ever to be achieved, it is critical to scale up HIV testing and counselling, and to increase access to appropriate interventions and support services.

However, many people living with HIV globally still remain unaware of their HIV status. For example, in the UK, a quarter of the people living with HIV are unaware of their status. In the US the figure is one in five[1].

In general, self-testing of HIV has the potential to improve testing amongst those with undiagnosed HIV; to reach hard to reach populations; to encourage testing amongst those who might not otherwise be tested and reticent testers; to increase the frequency of testing amongst people at higher risk of acquiring HIV, or those who prefer to do so as part of their regular health check; to strengthen individual’s roles in taking control and maintaining  good  health; and to facilitate mutual testing with sex partners. Self-testing can also be private, convenient and anonymous.

For self-testing to be truly effective, it needs to meet the 6 Cs criteria of self-testing. Consent;  Convenience; Confidential; Correct results; Counselling and Connection to Care. In short, self-testing should be client initiated; voluntary;  individuals be fully informed about what it involves, what a negative result means, what a positive result means, and there must be a robust pathway that ensures and enables  those who test positive to link in to counselling  and medical care, as well as for those who test negative to receive further counselling on risk reduction and maintaining an  HIV-negative status.

However, before HIV self-testing can be scaled up, it is important to consider the Legal, Ethical, Gender, Human rights and Public Health Implications of HIV self-testing.

We heard from a number of speakers who covered issues such as the accuracy and efficacy of self-testing and linkage to care; social impacts of self-testing; potential models of self-testing; autonomous choices and relational responsibilities; self-testing and human rights and we also heard from experiences from the field on self-testing.

The presentations were followed by group discussions to look at action and policy to scale up self-testing. Small working groups looked at the different areas which included looking at Policy and normative guidance issues; Access, affordability, logistics and procurement; Priority populations for impact; Self-testing as part of combination prevention; Social and ethical issues for policy and implementation and Confirmatory testing and quality assurance. There was also a session looking at setting the operational research agenda. I.e. identifying research gaps in low-income settings and priorities for future research as well as looking at the process and development of papers for a special issue of Journal of AIDS and Behaviour dedicated to the topic of HIV self-testing.

Key take home messages included;

The importance of learning from different experiences and different contexts;

the complexity around the different models of self-testing as well as the different contexts in which self-testing is used. For example, MSM, Polygamy, and relationships where there are gender power imbalances, including employer/employee; the importance of having information; the importance of working with different networks and communities and ensuring that vital community voices and perspectives are involved in the advocacy around self-testing; the need to take forward self-testing in the context of supporting healthcare workers in task shifting as well as supporting individuals who test to be remain engaged in care; that there are still big operational questions on cost and well as the need to challenge pharmaceutical companies to produce different types of self-testing approaches as one size does not fit all.

From the perspective of people living with HIV, it is important that linkage to care receives appropriate policy and programmatic attention. HIV testing has always been put in the prevention funding streams but not built mechanisms for linking people from testing to care. The responsibility of those running the test program often ends with the providing the test result, some counseling and maybe a referral. Even in the resource rich settings, cascade of care represents a major barrier. Community-based organisations and positive networks have been instrumental in linking newly diagnosed People Living with HIV into care and support their retention in care.  As self-test puts sole responsibility on an individual who tested positive to seek confirmatory HIV test, further counseling and enroll in care, there were serious concerns about how to support these individuals.

Before any action can be taken to scale up the self-test, key populations must be supported to fully understand benefits, risks and limitations of HIV self-test, articulate priorities, concerns and advise on how linkages to care could be best provided. Most importantly, policy makers must put in place a mechanism to monitor adverse consequences of self-test and redress for key populations such as sex workers and others already facing compulsory HIV testing as self-test could well be another way for brothels owners, mafias, corrupt cops to be able to enforce even more testing.

30 years into the AIDS epidemic, we know so well that communities play a key role in generating demands for testing, highlighting the importance of placing the person living with HIV at the centre of managing their health and wellbeing and advocating for availability and access to treatment.[2] Without meaningful community engagement, self-test can probably do more harm than good.

At the end of the second day, the meeting participants came up with the following draft consensus statement. (The session that involved us coming up with the consensus statement was an eye opening experience I really enjoyed. In particular, the moments where it took us what seemed to be like at least 20 minutes to agree one sentence!)

‘This meeting supports HIV self-testing as a complimentary strategy to increase knowledge of HIV status and uptake of prevention, care and treatment. Rapid HIV tests are already being used as self-tests in many settings. HIV self-testing is an evolving approach that has the potential to increase access to testing and meet key needs of underserved populations, including  generalised populations and healthcare workers in high prevalence areas, individuals in sero-discordant relationships, and other priority populations. It may also be suitable for individuals and couples who are re-testing due to on-going exposure, particularly if they have previously received counselling. While the current evidence on HIV self-testing does not indicate social harm, data are limited and additional research and on-going monitoring is necessary.

HIV self-testing requires a regulatory framework that ensures quality diagnostics that give accurate results in the hands of the intended user. National testing algorithms will need to be adapted to accommodate HIV self-testing.

Governments should support HIV self-testing strategies with meaningful community engagement and monitoring of the legal, ethical, gender and human rights implications of self-testing.’

A full report of the meeting will soon be available.

We would like to say a big thank you to GNP+ and the WHO/UNAIDS for enabling us to attend the meeting.

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[1] Rapid HIV self-testing. Myers et al. AIDS 2013

[2] As described in the Positive Health, Dignity and Prevention framework [http://www.gnpplus.net/images/stories/PHDP/GNP_PHDP_ENG_V4ia_2.pdf ], placing the person living with HIV at the centre of managing their health and wellbeing involves the following: a supportive legal and policy environment; focusing on holistic health promotion, not only on transmission prevention; tailored to setting, key populations, and to the individual; defined by people living with HIV.

Telling somebody: ‘I have HIV’

Telling somebody ‘I have HIV’ is hard. It becomes a little bit easier with practice and experience. But it never ends to produce a feeling of vulnerability and fear.

Here are my 5 grains of wisdom on talking about HIV:

1)Tell yourself first

This may seem a strange piece of advice. But it is easy to stay in a place of denial and self –rejection after HIV diagnosis. Reaching a place of acceptance and overcoming any feelings of shame we may have connected to our diagnosis, is an important process in being ready to tell others that we live with HIV.

2)Talk to other people living with HIV

Talking to others in a similar situation is important: it helps us clarifying what we are feeling. It offers an opportunity to develop a way of communicating about what we are going through safely. It is crucial to have a support network that can act as a safety net, if we have negative experiences after telling some body. Moreover by talking to others with HIV we can learn from their experiences and strategies of discussing HIV.

3) Know the facts

The more we know about HIV, the less we have to fear. In the process of telling others it is important that we are able to explain basic things about HIV. When we tell people, we may have to answer many questions so it is important to be able to give simple but accurate information. If we cannot remember everything ( who can ?! ) we can also point out resources which are accurate and reliable. I always recommend the Ibase website because it is up to date and easy to understand, plus they respond to your questions if you email or call them. It is also useful to find out how much the person we want to tell knows about the subject. Try and throw in casual questions. If they are very naive about the subject it may be useful to prepare more.

4) We are not a threat

Scientific research has shown that HIV transmission doesn’t happen easily. Barrier methods such as condoms and female condoms are extremely effective in preventing HIV transmission. Moreover people on HIV treatment are very unlikely to pass the virus, so much so that the British HIV Association Treatment Guidelines recommends that people who are unable to always use barrier methods and are concerned about transmission can start treatment, to reduce risks of transmitting HIV sexually. I also often explain that women with HIV who have access to good medical treatment and ARVs have 99% chances of having an HIV free baby. This delivers a very clear message of how effective treatment is in preventing HIV transmission. I am still so shocked how few people in the ‘wider world’ do know this. The majority are incredibly surprised when you tell them. Dah!

5)Tell from a place of power

One of the difficult things of telling is that it makes us feel very vulnerable. It is easy to feel like you have handed over all the power to make a choice to ‘accept you or not’, to the other person. Telling can become a way of feeling extremely disempowered. But we can reverse this through our awareness. We can liberate ourselves. It is important to make the conscious decision that telling is ‘our choice’. By making this choice we create an opportunity for our personal power to be expressed. When we take the step to talk openly about the difficult topic of being HIV positive ( even to just one person) we are manifesting many positive qualities: strength, honesty, courage, caring, understanding of our health , openness towards others etc. We have to focus on the power we have. I always recommend to practice, what we are going to say. But also to practice how we are going to stand. How we are going to be in our body. We need to be sitting or standing well grounded , with our feet hip width apart, solidly on the floor. Keep ourselves relaxed. We have to remember to breathe deeply and slowly, our spine erect. Feel strong, act strong, be strong. I really believe that being mindful about our body will support our feeling of power and our ability to talk about HIV confidently and safely. But this can be different for each and everyone of us. Ask yourself how can I talk about HIV from a place of power?

Rejection

It is impossible to know 100% how a person will react to us. If people react negatively and reject us: we must remember we are not the problem, it is not our fault. Their ignorance, and failure to grasp the facts and the truth about this small virus is the problem: their problem.

Nevertheless, rejection is a very painful experience, raw, and hurtful. For many of us it is not possible to go trough it, especially if we are emotionally or otherwise dependent on the person we would like to tell we have HIV. Having been at the forefront of the battle to recognise the links between Gender Based Violence and HIV, I know that for some of us, revealing our HIV status is just dangerous.

Stigma thrives in silence

The fact that many people are still trapped in silence, makes it even more compelling, for those of us who can, that we have a duty to talk about HIV.

I strongly believe that each and every time we talk openly and safely about living with HIV, event to just one person, there is a little less stigma and prejudice in the world.

My birthday

It”s my birthday. I am 47 years old today. I would have never thought I would be alive today when I was diagnosed at 30. I don”t feel prepared for the wrinkles and ageing. I have badly suppressed anxieties about the future: who is going to look after me when I am old, and my body and organs are tired from decades of ARTs? HIV came with a lot of hidden gifts, insights, and added purpose to my life. But I can’t help asking myself: wouldn’t I maybe have a family if I wasn’t HIV positive? I spent most of my twenties dealing with my mental health issues,my mother”s death,my demented father ( he had Alzheimer), my thirties where dedicated to overcome my HIV diagnosis and mere survival. I was 39 years old when I started thinking I maybe was ready to have a baby… But the relationship I was in imploded, also because of the long shadow of HIV. I didn’t feel I could be a one person family. I think things could have been different without HIV.

I put all my love,all my energy in being an activist. It has been amazing in many ways and to my surprise I have created for myself a HIV family which is way more inspirational and supportive than many  traditional families. One of the struggles i have embraced wholeheartedly is that of addressing the links between HIV and Gender Based Violence in the UK. it was so heart warming on the 14th of February to see the room of the House of Lords filled to the bream with people. The Sophia Forum, of which I am a trustee, was launching a report on a feasibility study on the links between Gender Based Violence (GBV) and HIV. So many people arrived we were worried we would have to turn them away. But it showed that it was much more than a handful of people who were concerned.

During the day we had many shocking presentations that showed how violence permeates the lives of women living with HIV in the UK. Violence takes so many forms, it can be in the home, by partners, by other family members, it can happen in institutions including mental health services, prisons, ante natal services. All the presentations and the report are available on the Sophia Forum website.
The launch was a great success and showed that women from all walks of life, academics, health practitioners, people who work in domestic violence services, and of course women living with HIV want actions to stop all those abuses of power. At present violence continues. And violence is not just physical and emotional, violence is also economical. The constant lack of funding for work with and for women with HIV is also violence. The feasibility study was done on a shoestring, thanks to an Awards for All grant, the launch of the report, likewise was done thanks to the generosity of the Monument Trust. Now we need to implement the report recommendations which include: more research, training of health professionals, strengthening of HIV positive women”s networks. This can not happen with one off small grants. It needs sustained strategic funding.

And please I do not want to hear: we are in an economic crisis the money is not there. There is a lot of wealth in the world we live in. Just remember a Robin Hood tax could rise $350 billions in the US in one year alone.

Here is a picture of me and my mum Susanna Meschini (1934-1986) , she was an extraordinary woman, unfortunately hunted by depression and weighted down by patriarchal Italian society of the times she lived in: even worst than now. When I was a child she took me to marches to fight for the rights to abortion and divorce. She had a difficult and sad life. But today 47 years ago she gave me an opportunity to be alive on this planet. I am trying to honour it.

A Letter to HIV on the 16th Anniversary of My Diagnosis

Dear HIV,

Today is 16 years I have learnt that I share my life with you. What a shock it was. At the time, it was difficult to imagine I would be alive today. Here we are in 2013 and it looks like we will have many more years together. It is pointless to think what would my life had been without you.I will never know.

I know that thanks to you I had to take a very good look at myself, and the world. I had to look straight in the eyes of death and illness. Thanks to you I stopped taking my life for granted. I had to ask difficult questions to myself. Recognise my fragilities, and my responsibilities. What was most painful: I had to question the possibility of love and intimacy. How difficult closeness becomes, when your body is a potential threat to your loved one. I have experienced fear, rejection and judgment. And I have found limitless compassion and friendship in my new HIV family. Through you I have met people with courage, purpose and humility. I could start a long list here of women and men, gay, straight, young and old, from every continent. You know who you are. Thank you.

Dear HIV, on this day I would like to acknowledge the gifts that came along with the misfortune of having you inside me. Confronting judgment and stigma, I had to learn to free myself. Which is the only way of freeing others, as we are all connected.

HIV you have been a magnifying lens on the important questions about the world we live in. When we think about you we need to think about power. Where there is abundant shared power: you reverse. Where there is scarcity of power: you thrive. It is not a surprise that you still thrive today among those who have less power: women and girls, gay, queer, blacks, people who use drugs, people who are incarcerated, transgender people, indigenous people, poor people. The ironic consequence is that through you, HIV, I have seen a dialogue starting among oppressed and marginalised groups and factions, who would have never spoken to each other otherwise. Together we may begin to see that to truly challenge you we need to question and change the current power structures: economic, social and cultural.

Dear HIV, t oday I want to thank you, because you obliged me to find and recognise my personal power. You made me manifest a strength I didn’t know it was mine. Firstly ,for a long time, I felt weighed down by shame guilt and fear, but had to rise up to it. This was only possible through the inspiration and endless support of my new found HIV family. I am almost sure, without this family I would have lived a much more mediocre and confused life. If I had lived at all.

Finally dear HIV, I can say all those words, because I am still alive. And I am alive because I had the good fortune of being born in a part of the world with free access to medical services, and the medications that keep me alive. Millions of people still don’t .

Thousands die: every day, and today.

The pain for the ones we have lost: never dies.

Coming out HIV positive posing for Marc Quinn cast of my body made with wax and HIV medications, 2004

2009 during photo shoot of Putting Patient First Campaign, with Angelina Namiba, part of the HIV family, and amazing activist

Speaking at the Human Human Rights Rally at the International AIDS Conference in Vienna 2010

S

2011 Speaking at United Nation  High Level Meeting on HIV and AIDS,  representing the Global Network of People Living with HIV

 

SHE goes to the European Parliament!

Brrrrrr! Europe is frozen… I saw it with my own eyes this week as I travelled by train to Brussels to participate to a Public Hearing on Sexual & Reproductive Health and Rights (SRHR) organised by FEEM Committee on Women’s Rights and Gender Equality.

The meeting took place at the European Parliament which for a strange reason has an enormous luminescent heart at its entrance.

I went there as part of my involvement with the SHE programme  an Europe wide project – sponsored by the pharmaceutical company BMS -  which aims to improve the quality of life of women living with HIV, through peer-support for HIV positive women and education of Healthcare Practitioners in order to promote better communication around the needs of women living with HIV.

The hearing objectives wereto select important issues, explore current landscape and provide some recommendations for the future report on SRHR under direction on Ms. Edite Estrela, Portuguese politician and Member of the European Parliament for the Socialist Party.

Renowned experts such us: Dr. Gunta Lazdane, Regional Adviser for Reproductive Health and Research in WHO Europe and Johanna Westeson, Regional Director for Europe of the Center for Reproductive presented their views in different discussion panels, such as health literacy and sexual education, public health systems and accessibility in the EU and the role of the EU in promoting these rights globally.

Overall it was really interesting to see how access to some basic services such as contraception and abortion still really differ around Europe with some countries still experiencing real obstacles: for example  in Ireland this year  a woman died because she wasn’t allowed to have an abortion. It was reassuring hearing panellist affirming that SRHR should be promoted as a fundamental Human Right and that this view will inform the report that will be presented to the European Union Parliament.

At the end of the debate there was time for Q&A. So thanks to a bit of a prompting from Joanna from BMS, I gathered courage, put my hand up,  and invited the panel to comment on the obstacles women living with HIV face in Europe when trying to access SRHR.

I introduced myself as a woman with HIV ( this is in my view an important political statement to counteract the invisibility caused by stigma)   and as a member of  SHE, and  spoke of how many of us face huge judgement and ostracism, from the community and even in healthcare, when we want to get pregnant.  Sometimes we are even pushed to have abortions (as reported by the Italian HIV positive leader Rosaria Lardino  here). I told them how even in the UK, just a few weeks ago I heard young HIV positive women reporting being denied contraception (the assumption being that they should only use condoms, despise widespread evidence  that women with HIV should have access to dual protection in contraception ) .

All experts and MEPs expressed their high interest and confirmed the importance of these issues. Here’s some comments:

• “My recommendation will be to promote integration of services dedicated to women”, Thilde Knudsen, Marie Stops International
• “After experience of workshop with Polish women living with HIV, we’ve learnt that the most important is to help them to fight against their fears and show them that they have a right to require a better care and quality of life. Women should be supported and empowered!”, Krystyna Kacpura, ASTRA network.
• “Create the women network is crucial
•   “Number of women with HIV is constantly increasing in Europe. Physicians should be trained on regular basis and women should have an access to the appropriate services and possibility to basically collaborate with their physicians.” Prof Izdebski (Poland).

After the meeting, the political advisor of the GUE party, to which the chair of the FEMM committee belongs, approached me and asked me to provide concrete suggestions for wording to be included in the upcoming report on SRHR.

To conclude I am really grateful that SHE is now implemented in over 14 countries in Europe (even in my homeland Italy!) and that we will be able to promote our Human Rights at European level, and that hopefully this can have an influence in our local countries.
It is a small step but an important one.

 

Did You Know What Women Living with HIV Want?

Here is a short video made by women living with HIV to support UNAIDS aim that no child may be born with HIV. As women living with HIV this is  of the utmost importance to us, however we also know very well  that this is only possible when our rights are upheld and advanced.

I am really honoured that I have collaborated with all those women living with HIV from every part of the world in promoting our rights and protecting our children.

Another fantastic initiative by UNAIDS is the campaign by young women who were born with HIV here is their vision: The hopes and dreams of young women growing up with HIV. Some of the young women who produced the statement have been  through Positively UK’s peer mentoring programme and have worked with us as youth peer mentors. Once again a clear proof of what can be achieved through our structured peer support model.

 

Angelina Namiba’s Guest Blog from Kenya: HIV Services Integration for Impact

I recently attended a conference in Kenya. The conference was held in the Capital City Nairobi, and was titled: Integration for impact. Reproductive health and HIV services in Sub-Saharan Africa. Bridging the gap: Delivering the promise – meeting reproductive health and HIV needs.

Day 1 and 2 were divided into parallel sessions with oral poster presentations on either models of HIV integration or policy and organisational change. The focus was on how to better target key populations, increase utilisation of services and better assess integration. I attended the sessions on models of integration. Day 3 was a focus on advancing programming in reproductive health and HIV integration.

There were numerous oral presentations covering research done into assessing the need for integrating family planning and HIV services; integration of other services such as cervical cancer screening; antenatal; safer conception and counselling and reproductive health into HIV services; provision of and increasing access to integrated sexual health services for key populations such as male and MSM/MSW; and delivering integrated SRH services to people living with HIV, to name but a few.

A short video ‘In one place’ – shown at the closing ceremony – featured the case study of a woman in rural Zambia who explained her journey to access ARVs and family planning.

“I leave home at 600am and arrive at the clinic at 11.00am. Usually there is a long queue and I don’t get seen until around 2.00pm. I then start to make the journey home and sometimes I don’t get home till 9.00 or 10.00pm! ARVs are provided at a different clinic and on a different day from where and when I can access Family Planning. Therefore, I have to make a similar journey, on another day of the week – to access family planning”.

In just a few sentences, she clearly summarised the 3 days discussion around why it is important to integrate SRH/HIV particularly for women living with HIV. Why it is so important to bridge the gap between services, and how integration can impact on the both the lives of women living with HIV, and the communities they live in.

Highlights for me included, the fact that I felt very lucky to have the opportunity to  hear about what is being done on the ground in terms of integrating services; to learn from programmes in Sub Saharan Africa and to meet with researchers who are at  the forefront of advancing this key area of the response to HIV. Other highlights included the fact that I hadn’t been home in nearly a decade – prior to this trip. So it was quite nostalgic but wonderful too to be back home and to see all the mind opening progress that has been made whilst I have been away. I got a chance too to indulge in some wonderful ‘nyama choma’ roast meat – a speciality of Kenya. The weather, the food, the flora and fauna! I could go on……

Finally, one of my other highlights was having an HIV test! Yes, I had an HIV test done by the Liverpool VCT Programme who had a booth at the conference. I wanted to experience the journey that people go through at a VCT session. What information they receive and generally how the process works. The session was conducted in a very professional manner; the worker was friendly and answered all my questions. Another reason I wanted to do the test was perhaps at the back of my mind there was a tiny hope that the test might be negative! Unfortunately, it wasn’t to be. And both the initial and confirmatory test both came back positive. Oh well, one can but hope eh? All in all, it was a very interesting experience.

I would like to thank GNP+ for supporting me to attend this conference.

Our Option: Connect with the Real Lives of Women Living with HIV

 

It is just over a month since my return from the International AIDS Conference in Washington DC and I have spent the past week reorganizing my notes. Watching sessions I missed and trying to distil the ‘juice’ of the conference to offer to my peers that didn’t have the privilege to attend.

Disconnection is one of the first words that come to my mind: disconnection between the world of policy makers and wielders of power and the lived experiences of women living with HIV.

The moment when this disconnection became more acutely visible for me was at the plenary session ‘Turning the Tide on Transmission’, when on the same plenary we had Linda Scruggs, an openly HIV positive Afro-American woman making a call for our direct involvement in the choices and decisions that affect us and UNICEF senior pediatrician Chewe Luo promoting Option B+ the new bio-medical quick fix to reduce vertical transmission of HIV.

In a nutshell Option B+  aims  to test all pregnant women (with no mention of voluntary testing and counselling) and then put all those who are living with HIV on ARVs for the rest of their lives, regardless of their own health needs, regardless of the fact that research still hasn’t identified any further benefits for starting treatment before  CD4 count is below 350. This ‘Option B+’ has only been carried out  as an implementation intervention in the small country of Malawi, for just over one year.  In Malawi it was shown that it worked: it prevented babies from acquiring HIV, mothers were in good health, and it was also emphasized that it had the added benefit of preventing transmission to negative male partners.  Dr Luo summarized: it is simple, it is effective, and it is easy implementable.

I would like to stress that I am all in favour of taking treatment to improve our health, and staying alive, I have been on ARV treatment myself for over 14 years, and I would probably be dead otherwise. However, together with many other people with HIV from all over the world I believe that treatment should be initiated and continued primarily for personal health benefits. In the UK and all European countries  pregnant women who are still in good health, with an high CD4 count, only take treatment during pregnancy and a few weeks afterwards, in order to prevent transmission to the baby, this is clearly explained in the BHIVA guidelines. Afterwards women can stop, and wait, sometimes for many years, until their immune system is weaken and treatment is needed. It has been questioned if this is feasible in low income countries. The cost of monitoring tests has often been seen as a big obstacle. But is it really true that we can test and treat all pregnant women, but we  do not have the resources to monitor CD4 in Africa? Thanks to a very low tech test developed by the Imperial College it is possible to offer a CD4 test for less than $10. I am not an economist, but I am sure that from the money saved from putting on treatment people who do not need it for their own health it would be possible to fund a couple of CD4 count a year for all, and especially pregnant women who receive a positive HIV test.

When I came back to my office to share this bit of news with my team of peer case workers they were all horrified. My team mates were all asking: what has happened to choice? Do they know about side effects? Do they know how daunting it is to take treatment for the rest of our lives, especially if you have been newly diagnosed? How do you take treatment if you have not disclosed to your partner or other family members?  What about women who are in violent relationships and live in fear? What do you do when you have not enough food to eat with your medications? What happens if you develop resistance? Is there going to be second and third line treatment? What  about interactions with other medications?  Would they ever do this in London? Within the team we  have decades of experience supporting women being  on treatment, many of us are African,  and we know that high levels of peer support are needed to stay on treatment and manage many of the psycho-social issues that come with an HIV diagnosis. I can assure you that there is a lot that goes into swallowing a handful of pill for the rest of our lives.

I believe there is no reason why we cannot aspire as HIV positive women from all over the world to put our own health and the health of our babies first, according to our choices.  So dear heads of UNICEF, WHO and UNAIDS,  I know that the model implemented in Malawi has an elegant simplicity, but it is so far removed from our lived realities of taking treatment every day.

I doubt you would ever come to my North London  Hospital, the Royal Free, and enforce something like this on us, because there would probably be an uprising. But it is easy to do this in countries where most positive women are in incredible poverty, live in fear of discrimination from health care providers, where our networks of positive women are for ever underfunded.   It is very nice that you come and share the big stages of those International AIDS Conferences with us,  but what we are demanding is  that you really connect with us and our lives. We want you to listen to what we have been saying for years, as Anna Sango,  a 24 years old Zimbabwean woman living with HIV,  said in the opening ceremony.

How many times do we have to say: meaningfully involve us at all stages of programming. We cannot be just an afterthought at implementation level for your short sighted top down plans. We have a wealth of knowledge and experience that will truly fertilize the planning programmes, their successful delivery and their monitoring. For our health and the health of our communities there is another option: connect with our lives.

If you want to know more about those issues please read Dr Alice Welbourn article:  An HIV-free generation:human science versus plumbing

 

Opening Ceremony

Opening Ceremonies rarely do it for me, however I must say that this time it was moving to have Piscataway ,tribal leader of indigenous people who have lived on this land for over 12.000 years, blessing us and remanding us how we are all connected through our ancestors, not only to each other, but to earth and nature. Well done IAS.

From then on  it went all a bit pear shaped with a series of middle aged men (OK the gay men chorus was nice but it was like another 100 men on stage!). It took quite a few speakers  to finally have somebody HIV positive and under 30: the incredible Anna Sango, a 23 year old Zimbabwean, who called for justice, basic sex education, an end to violence  and against women and more. Otherwise, most of the speakers up to then, had only referred to women as mothers, and treating women only to prevent vertical transmission. WE are not just vectors of infections and vessels for babies! What about those of us who are not mothers?

Michel Sidibe, the Executive Director of UNAIDS,  did a good speech, however he kept referring  to the Global Plan of ‘Elimination’ of HIV all infections in children (and keeping mothers alive….almost as an after thought). I find the word elimination violent, it suggests to me that extreme measures can be taken, and evry time I hear it I recoil.  I know how many women living with HIV are still coerced into abortions, and even sterilisation, as this article published yesterday by Open Democracy by my friend Anca remind us.

Michelle also announced that the Republic of Korea has lifted the Travel Ban for People Living with HIV. Yahey! To conclude he  called for a Robin Hood tax to finance HIV. He reminded us that the end of HIV is possible, but it is not free. It is priceless!

You can watch the webcast of Opening Session here

LIVING 2012 Day One

Dear Readers, I made  a promise to myself that I will try and report something everyday from my stay in Washington DC . I have arrived yesterday night and today I have attended the first day of the LIVING 2012 summit organized by GNP+. I have also being live tweeting like mad: you can follow me on @HIV_SpeakingUp.

I am high on jetlag, and the change in temperature so not sure if I will be able to make sense. It has been an exciting and exhausting day and I have seen many old friends from different parts of the world.  I will not go in the detail of the conversations we had  during the Summit about key topics such as: access to treatment, human rights, criminalization, sexual and reproductive health and rights.

The issue of treatment as prevention was heatedly debated. So many divergent opinions in the room. Something that stood up once again for me is how important our involvement in designing programs is. A South African woman talked about how now women with HIV are forced to stay on treatment and breastfeed with not access at all to formula

milk , and no choices. This means that women  are expected to stay at home with their babies and take treatment, and give treatment to their babies to protect them from HIV.  If they go to work and haven’t disclosed at home the grand mother or another carer may give formula milk or water to the baby. If babies are mixed fed, the risk of transmission increases: this is because formula milk and even water changes the mucosa of their mouths and makes them more receptive to the little HIV that may still be in the breast milk of a woman on treatment. But what can a poor mother who needs to work for an income do?  I had never thought about this, and I bet neither had the policy makers, who probably made their decision more on the bio-medical evidence then using the experiences of women living with HIV in Africa.

Something else that moved me was seeing the memorial AIDS quilt made by people to commemorate people who died of AIDS.

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