As the 35th year of recognising World AIDS Day emerges with the theme of “Let Communities Lead”, it takes me back to very earliest years and the common theme of “nothing about us, without us” ringing a similar tone and message to community.
Why is this important to note?
Well from the beginning of the epidemic it has been challenged, questioned, held to account, and given the opportunity to connect with the people living with HIV to create the successful outcomes we have today.
It has been people living with HIV who continued to call for funding and services, it is people living with HIV who have participated in clinical trials proving new medications effective and leading to the reality of people living with HIV and an undetectable viral load no longer transmitting HIV to others. This is the success of people living with HIV ‘s participation in clinical trials and experimental options in the works from the start.
There are challenges that come with this success in that HIV is now considered a chronic infection and not a life-threatening disease and that HIV has moved out of the news headlines and minds of communities as something fixed, cured or no longer a concern.
This could not be more inaccurate as people are still becoming infected, some are not able to achieve an undetectable viral load and many folks are still dying as result of opportunistic infections related to their HIV infection or have limited or no access to testing and treatment.
This must change if we are to see an end to HIV in our future. We need more resources and funding to go into HIV specifically as it continues to carry an overwhelming burden of Stigma. We need greater access to barrier free testing and treatment options that meet the needs of the people where and when they need them, and we need a greater financial commitment to support HIV as it continues to be criminalised for non-disclosure and potential harms associated with this legislation.
I have been living with HIV for 35 years with World AIDS Day as my annual reminder of both my infection and diagnosis with HIV. Times have changed for the better as it related to treatment and prevention options however we are truly lacking in the support for programs and services specific to HIV and the people living with it. We can do better, we can eliminate HIV, we just need the leaders I our countries to start doing the best for communities impacted.
This can only happen by inviting and actively engaging with people living with HIV at every level from the beginning of whatever programs, services, funding, treatment and prevention options and services developed. People living with HIV do not fail the systems and options for care created for them – the systems fail them by not taking the time to listen and engage them from the start.
“Nothing about us with out us” = “Let Communities Lead!”
Happy 35th Anniversary to me.