I recently attended AVAC’s HIV prevention science and advocacy training for Px-ROAR European advocates in Paris (12-13 June). AVAC are committed to global advocacy for HIV prevention. Their mission is to Deliver proven interventions for immediate impacts; Demonstrate and rollout new HIV prevention tools and to Develop long term solutions to the epidemic.
AVAC has a team of European and US advocates as part of their Px-ROAR (Research, Outreach, Advocacy and Representation) programme. The programme trains advocates in biomedical HIV prevention research education and advocacy through mentorship, peer support, networking opportunities and technical support.
The two day training was hosted by Sidaction at their offices in Paris. The training covered an update on core prevention interventions, focusing on research and implementation, landscape and advocacy needs. Advocates also had an opportunity to feedback on their workplans as well as share ideas on future projects.
The European team is made up of advocates from the UK, Italy, Spain, Germany and France. Harriet Langanke from GS:SG in Germany and Giulio Maria Corbelli from Pluss Onluss in Italy presented on the prevention landscape and advocacy needs of sex workers and gay men. Gabriel Boichat from Planeta Salud shared their work at the national level to advocate for Spanish support for vaccine and microbicide research and Cecile Vernant from DSW presented on influencing European level funding policies.
For the uninitiated, below is a whistle-stop summary of the core new prevention interventions we discussed. More information on the interventions as well as current studies taking place can be found here.
TasP – “Treatment as prevention”
Treatment as prevention is a term describing the use of combination antiretroviral therapy (ART) in people living with HIV in order for us stay healthy and to reduce our risk of passing HIV onto partners or unborn babies. Both the BHIVA and WHO guidelines recommend offering ART to individuals for this purpose, and in particular to pregnant or breastfeeding women and to people living with HIV in sero-different relationships.
PrEP – Pre-Exposure Prophylaxis
PrEP is a strategy that involves the use of antiretrovirals (ARV) to reduce the risk of HIV negative people catching HIV. All current effectiveness and follow-on trials are testing tenofovir based regimes – using either TDF/FTC (an ARV containing tenofovir (TDF) and emtricitabine (FTC) sold under the brand name Truvada, or TDF and an ARV marketed under the brand name Viread. PrEP is currently licenced for use in the US though not yet in the UK.
The term microbicide refers to substances being studied that could be used in the vagina and or rectum to reduce the risk of catching HIV or other STIs (sexually transmitted infections) via sexual exposure. There are currently no licenced microbicides available. Microbicides could come in a number of forms, including creams, gels, films or vaginal rings (that release the active ingredient over a few weeks or months), suppositories that could be used vaginally or rectally, or rectal enemas.
An AIDS vaccine is a substance that teaches the immune system how to create effective anti-HIV immune responses. No such vaccine exists today. Scientists are currently pursuing candidates that would help prevent HIV infection in HIV negative people. Vaccines may also help control the virus in people who receive the vaccine while HIV negative and later become infected. These are known as preventative vaccines. Scientists are also developing therapeutic vaccines which would build immune strength in people living with HIV.
Voluntary Medical Male Circumcision (VMMC) is the removal of all or part of the foreskin of the penis by a trained healthcare professional. The primary approach to medical male circumcision is a simple surgery. Today non-surgical devices that are placed on the penis by a healthcare professional are also being explored. The term VMMC differentiates circumcision that is performed by a trained health professional from traditional circumcision, which is performed as part of a religious ritual or cultural rite of passage.
Multi Purpose Prevention Technologies (MPTs)
Women need prevention strategies for many different needs. At various times in their lives they may want to protect themselves against HIV and other STIs; and at other times also want to prevent unwanted pregnancies. Today, only male and female condoms provide protection against HIV/STIs and unplanned pregnancies. These methods require partner negotiation and co-operation. Women have long asked for methods that both meet their HIV/STI prevention and family planning needs and are easy to use – and work is currently under way to develop these ‘multi purpose’ prevention technologies.
I presented on the prevention and advocacy needs of women living with HIV. In summary, the ideal prevention method for women is “One that gives me choice. This is because my needs differ depending on what relationship I am in. If for instance, I am in a stable relationship, then TasP would be ideal for me. In this situation, it is important that people who support me should not judge me for making this choice. As for female condoms, these are not so readily available and the last time I went to the clinic I had to beg my nurse who then went on to count a few out for me! PrEP is a tool that can be useful in different periods of people’s lives. The key to the best prevention option is one that will suit individuals at the different stages of their relationships.’ My friend, colleague and fellow woman living with HIV, Silvia Petretti.
• In terms of advocacy, it is important to recognise that women living with HIV face a myriad of issues. Even where women have the will to become advocates, these issues can sometime overwhelm them to an extent advocacy becomes less of a priority in their lives.
• That said though, women have the capacity and capability to become advocates, the need information that is written by and for its audience and that is accessible and easily available.
• The information should explain the different options and also address people’s concerns- so that women can not only understand for themselves but also have the information to address the concerns of their partners.
The reality is that there is a real lack of advocacy around prevention, and that is something that organisations and networks need to take a lead in – maybe with campaigns, social media, etc to raise visibility and encourage people to get behind new options.
Olivier Maguet from Medicins du Monde (Doctors of the World) gave an eye opening presentation on the history and development of Harm Reduction (HR). This was the first time I had heard such an in-depth presentation on HR.
Olivier defined HR as, ‘referring to policies, programmes and practices that aim to reduce the harms associated with the use of psychoactive drugs in people unable to or unwilling to stop. The defining features are a focus on the prevention of harm, rather than on the prevention of drug use itself, and the focus on people who continue to use drugs. HR benefits people who us drugs, their families and the community’.
Implementation of HR includes providing a comprehensive package of services including Needle and Syringe Programmes (NSP) and Opium Substitution Therapy (OST). The effectiveness of programmes and range of services provided clearly depends on implementers and agencies.
Olivier looked at the history of HR starting from the 1970s when it was very much a response to an emergency. Drug policies then were based on a repressive approach. Some of you may remember President Nixon’s famous ‘War on Drugs’ speech. The term was popularized by the media shortly after a press conference given on June 18, 1971, the day after publication of a special message from President Nixon to the Congress on Drug Abuse Prevention and Control—during which he declared drug abuse “public enemy number one”.
Things have since moved on and Olivier went to talk about the progress in terms of introduction of HR programmes in countries, from 1984 when there was only one country with an HR programme, to the present time where 97 out of 197 countries have some form of HR programmes. Barriers do exist in terms of provision of HR services and the effectiveness and range of services varies greatly amongst the 97 countries currently providing HR programmes.
There are, however, many benefits to providing effective HR programmes. These include:
• Health: OST can reduce the need for craving and decrease the use of illicit drugs. OST can also increase adherence to ARVs for people living with HIV.
• HIV: NSP on the other hand can decrease HIV incidence amongst people who inject drugs.
• People can become functioning addicts – lead regular lives, work, pay taxes etc
• There’s a beneficial impact on social functioning. A study by Lind B et al (Lind, B et al. The effectiveness of methadone maintenance treatment in controlling crime.BOSCAR. March 2004). showed a significant reduction in property crime, drug dealing and fraud by heroin users just six months after their entry into treatment.
There was a lot more to the presentation including detailed advocacy messages as well as the fact that illegal drug use in now on the increase in African countries. For example in Dar es Salaam, Tanzania, 67% of women using drugs are HIV positive! Yet only about three African countries currently provide HR programmes.
Anna Laura Ross from the French medical research agency ANRS, who works with the renowned Professor Francoise Barre Sinousi, presented on Current research and the advocacy context. I am constantly amazed at how much I still cannot get enough of listening to updates on cure research. The mere fact that research is currently looking at the possibility of finding a cure in itself is fascinating to me having been diagnosed in an era where we didn’t even have effective ARVs! I have heard research on cure being presented on a couple of occasions and this was by far one of the very user-friendly ones. She presented the science in a way that I actually understood.
The main take home message for me was the knowledge that HIV cure clinical trials are currently working on several cure strategies. Even more important is the fact that as this work is going on, scientists are simultaneously working with the community in order to find out not only their views on acceptability and willingness of patients towards a cure, but also to meaningfully inform the research agenda.
For more details including a comprehensive list of all current/ongoing cure research please go here.
Good Participatory Practice in HIV Prevention Trials
The training programme also included an overview and discussion around Good Participatory Practice (GPP) guidelines developed by AVAC and UNAIDS. They provide trial funders, sponsors, and implementers with systematic guidance on how to effectively engage with all stakeholders in the design and conduct of biomedical HIV prevention trials. GPP is core to the research progress and an important aspect of the solution. The guidelines include a detailed section on effectively involving civil society and have a blue print on how to implement them.
The guidelines are available in multiple languages and are available here.
What is advocacy?
We also had a detailed discussion around advocacy. In summary the take home message for me was that, advocacy can be simply defined as ‘influencing change through action’. So basically, efforts and action based on changing /or influencing the what is, to the what should be.
We also watched an interesting video clip on how to start a movement which I thought was both thought provoking and quite humorous!
Although intense, I found the two days training incredibly informative and interesting. It was also great to catch up with the European advocates, Harriet Langanke from GS:SG (Germany) Laia Ruiz Mingote and Gabriel Boichat from www.planetasalud.org (Spain); Giulio Maria Corbelli from Pluss Onluss (Italy); Veronica Noseda Sidaction (France) and the AVAC team, Kevin Fisher, Cindra Feuer and Rebekah Webb.
My only regret is that I wasn’t in Paris long enough to enjoy the beautiful city. Having said that though, I did have an interesting encounter on the Rue St Martin as I made my way from Gare Du Nord to the hotel. Without revealing too much, the encounter involved an in-depth introduction to Sauternes, a famous French wine grown only in the Sauternes region. But that’s another story for another day!
I would like to say a huge thank you to AVAC for sponsoring my attendance to the training and to , , to Positively UK and last but by no means least, to Rebekah Webb for her continued support in my role as a Px-ROAR advocate.