The second day of the Living 2012 Living Well Institute continues the discussion on treatment and care for people living with HIV globally, human rights advocacy on living with HIV, treatment literacy, and preventing the spread of HIV across all populations and regions.

The availability of HIV diagnostic and treatment does not ensure access.  In many parts of the world, basic infrastructure challenges can limit the distribution of medication that requires daily maintenance.  Other times, the systems of care – from testing technologies to clinical care – do have the mechanisms to support people adequately.  In some areas, getting viral load and blood work occurs far less regularly than medically recommended.

Mobilizing communities with HIV is one way to increase the uptake and maintenance of HIV treatment, but efforts are hampered by stigma and discrimination. This goes far beyond how people feel in HIV and, in fact, has led to legislation and policies against people living with HIV, gay men, drug users and commercial sex workers.  Funding for community mobilization has declined over time, and is often subsumed within larger civil society work (that has little to no requirement to ensure meaningful participation of people living with HIV).  Many pointed out that community mobilization is the missing link that supports adherence, health literacy, less stigma, and better health outcomes overall.

Throughout the groups, heated discussion broke out about any and all topics.  It stuck me that we have little in common outside of our diagnosis. Our politics, our experiences, our concerns, our analyses and our solutions are as diverse as the group in the room.  As a whole, I am struck that whether the speaker is from Canada or Indonesia or Ukraine, it seems to be most socially marginalized groups that drive the HIV epidemic.  The organizers of this event – the Global Network of People living with HIV/AIDS – are clearly interested in pushing forward the complexity of our voices, yet some participants seem to be stuck in a position of “my voice is the only one that matters.”

The AIDS Quilt panels stand as a unique – and largely celebrated – memorial of people who have passed from HIV.  Upon closer inspection of the panels on the walls, I realize my diagnosis happened later than the most recent of those deaths.  I started working in HIV in 1990 and became infected in 1997-98.  This has affected my own understanding of where I sit in the epidemic – what I think is important and the ways I use my voice.  I am not sure how “we” – as a community, as an industry, as millions of people who share an HIV diagnosis – permit and encourage the multiplicity of voices of those living with HIV.  The plurality of respondents to the surveys for Living 2012 Living Well Institute indicated that they were diagnosed over 20 years ago.  Someone diagnosed last week deserves their needs to be put forward, just as someone who has been living with HIV since the 1980s.  In a changing (and infectious) epidemic, it is the only way to ensure that appropriate needs are incorporated in implementation plans.

This is the start of the conference.  We stand at the crossroads of a major shift in how public health institutions deal with HIV.  We cannot stick our heads in the sand and discuss some nostalgic “good old days.”  In the end, we have more work to do – and some of this work means thinking long and hard about what we bring to the table, what that table needs to look like to create and implement sustainable solutions in each of our home regions.

Written by: Dr. Andy Spieldenner @aspield


The Institute for Latinx Health Equity is a growing collaborative of public health researchers, behavioral scientists, community leaders, capacity building specialists and social justice advocates. We strive to disseminate information about issues pertinent to health disparities and inequity. Follow us, join us, comment and add your voice to ours.

Leave a Reply