SUNDAY 22 JULY 2018
On Sunday, I attended a pre-conference called Blood, Guts & Glory. The focus of the session was on the Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO for short). But what does that mean exactly?
NIDA — the National Institute of Drug Abuse — is an American organisation which funds nine research projects focused on substance use to help better understand communities, identities and behaviours in the USA and Canada. These research projects make the consortium (or partnership) that link behavioural, biomedical and clinical data sets, which are also linked with biorepositories (long-term storage of tissues and blood samples of individuals for future research).
Over 12,000 participants are active across the nine research cohorts and contain diverse genders, sexualities and racial backgrounds. Importantly, respondents of African American, Latinx and other racial minorities across the cohorts are proportionate to the general US population of people with HIV.
Some of the most interesting research involving people with HIV includes:
- Social, economic, physical, policy and individual factors that impact HIV-positive people who inject drugs (PWID) (Vancouver);
- How drug use influences HIV-associated heart disease (Baltimore);
- How drug use affects the immune system of HIV-positive and HIV-negative men who have sex with men (Los Angeles);
- Influences on HIV, substance use, violence and mental health among young men who have sex with men and trans women (Chicago).
It was uncomfortably noticeable that the majority of the presenters failed to acknowledge that at the end of the data are real people. Not a single speaker disclosed their HIV-positive status, nor identity, behaviour or lived experience of substance use. Neither did any represent a community organisation. Where was the peer involvement? No care (with the exception of one of the presenters) was given to non-stigmatising language and terms about people who use drugs. The session raised for me questions around privacy, informed consent and law enforcement access to data of criminalised behaviours — questions which remain unanswered.
Deficiencies aside, this research partnership is beneficial in measuring and observing the effects of substance use on a range of HIV-related health and social factors. There may be some applicability to the Australian context, while taking caution of the differences between the HIV populations.