Monday 22nd Feb
Session MD – Panel Discussion on Stigma, Trauma and Stress: Considerations for HIV Research and Programs.
Moderator: Morenike Ukpong-Folayan (Nigeria)
Diversity in panelists: Laurel Sprague, Sethembiso Mthembu and Keith Green.
Laurel Sprague: Limits and Complexity Research on Stigma and HIV. (Milford, PA, USA)
Complex topic for discussion and opening panelist Laurel Sprague opened with Stigma, fear, and anxiety around disease is just as important as the focus on reaching undetectable viral loads.
She continued to highlight that HIV positive people surveyed actually want not disclosing ones HIV status to be decriminalised, and it is the ongoing impact of the possibility for incarceration that is continuing HIV stigma within the US.
Discussion around the Stigma Index Questionnaire within the US and globally. http://www.stigmaindex.org
Sethembiso Mthembu: Women’s Rights and Decision Making in Hormonal Contraception. (Durban, South Africa)
Presented on how there are overriding political issues that continue to impact on the provision of care for women, different contraception is offered in northern regions to southern regions, and based on religion and race.
Increasing awareness into the effects of hormonal contraception – in particular depo provera injection has on vaginal pH levels and thus is actually increasing the risk of HIV transmission for African women, as well as an increased link with higher rates of cervical cancer.
ECHO Study is currently looking at the direct links between administration of hormonal contraception and increased rates of HIV.
Current government programs push hormonal contraception onto African women with little education or communication of possible side effects, in HIV positive females, provision of ARVs is withheld until the person can prove they have had their depo provera injection
Ongoing provisions of care complications are highlighted with African women being provided with ‘contraception only’ clinics, which will not and do not address any other complex care needs of women’s health.
We can all argue how effect depo provera is as a form of contraception that is discreet, effective and economically accessible around the world. The point raised by Sethembiso is that we need to consider and understand the impact however such hormonal contraception is being pushed in Africa not as an option but with forced prescription and the impact in relation to HIV risk.
Keith Green: Engaging Young Men of Color in Community HIV Prevention Studies. (Chicago, USA)
Emphasis on multi-disciplinary approach and peer lead and consumer inclusion into study development and implantation.
He notes a major aspect of barriers in engaging youth consumers and participants into new studies and trials is not due to just their own stigma concerns but rather also the fact that youth inherently rebels and does not like to follow set orders or rules, and is just part of their nature as humans.
Keith also highlighted that we should not be so quick at labelling and using terms as MSM to communicate with young people, in todays day and age the better options is to ask the person how they wish the be identified and then use that term.
He has raised some interesting points, but also it does seem that it is increasingly difficult to allow interactions across all politically correct and non judgmental levels without making the research less valid, or repeatable in other settings, if allowing too many broad topics, and individual approaches helps gain numbers of consumers to participate will it then also indirectly make the research less scientifically valid?
The use of facebook and twitter proved valuable to their team in engaging and maintaining participation from youth consumers. The importance of privacy and sensitivity was highlighted but most participants were very happy to communicate via social media rather than phones. In considering the youth of today, mobile numbers change frequently, however very few will ever change their facebook or their email. Putting privacy and internet safety of information aside and assuming all was protected, one would think that this approach could not only benefit in youth interactions but also for all consumer/ client groups that are often lost to follow-up, low retention of care populations and indigenous and/or remote populations within geographically diverse Australia.
Keith repeatedly emphasis the importance of health provision to always remain culturally competent and relevant. This is of course a huge challenge in any community and country around the world especially as technology and communication avenues evolve so rapidly.
Open Q&A - Discussion:
The open discussion highlighted some global issues on the topic and some interesting specific examples were given. To summarize the main points of the discussion;
- HIV prevention and control act implemented in Uganda has actually increased stigma, trauma and stress with the implantation of heavy fines on HIV positive people.
- Is incarceration as punishment actually discrimination? In South Africa women are targeting for testing drives esp in antenatal screening – however if testing positive are indirectly persecuted, hence promoting fear towards testing.
- Is the threat of incarceration a why in which governments globally can still impose authority.
- Fears for women was further highlighted by the following scenario: If a man rapes a women in South Africa he is charged with rape and undergoes mandatory HIV testing, if positive he is then also charged with infecting people. On the flip side, the women raped is also tested, and if she is found to be the source, then she goes from being the rape victim to potentially facing a charge for HIV transmission to the rapist!
- Do HIV, MSM and Sex worker clinics promote health care and reduce stigma or do they promote isolation and less integration and public understanding by segregation.
- How can we reduced the distrust between consumer populations and research communities. Is it by educating, training and giving voice in positions to consumer/ peers. Would a society then specifically place aside allocated funding and positions for consumers/ peers to enter the industry and become researchers. In the Australian context how would this be rolled out? Similar to indigenous program models and would this encounter any population bias or speculation, helping reduce stigma or increasing it?
Session OS - Opening Session - Fighting AIDS with Style
On an additional note the final speaker of the day at the opening session was a special event guest, designer Kenneth Cole, now chairman of amfAR. He has dedicated his social and influential career in the fashion industry since 1985 to helping reduce stigma by being an individual public voice. From his efforts to not live in the dark or silence and instead pushing controversial AIDs and HIV issues into the public light. https://www.kennethcole.com/lgfg-making-aids-history.html
It is something about the concept of stigma, trauma and stress in relation to HIV in all aspects including research barriers that should be challenged by more people speaking out and making it an acceptable public topic for discussion. When society is forced to fell comfortable about what is actually going on around it and within it, it is then that ignorance and bigotry can be overcome and help reduce stigma and hence promote public health.