HAND, is HIV Associated Neurocognitive Disorder and can affect some people living with HIV. During the early phase of infection, HIV enters the brain or central nervous system (CNS), possibly within the first eight days. The impacts of HAND are related to thinking, memory or mood. Most people who are affected by HAND have mild signs or symptoms so it remains unnoticed. With the introduction of combination anti-retroviral therapy (cART) and newer therapies, with better CNS penetration, the incidence of HAND has been dramatically reduced. However, it is estimated that around 30% of people living with HIV still experience HAND symptoms.
For people living with HIV who notice changes in their memory, thinking or mood, HAND can be diagnosed through a series of painless, non-invasive assessments. In 2015, Positive Life conducted a survey to explore how HAND was affecting people living with HIV and to find out how much we were talking to each other, to our healthcare providers and to our friends about HAND. We wanted to understand what this means for dealing with our concerns and what was the reaction of the people we share our concerns with? We know that early assessment and detection of HAND as well as a treatments review can reduce the impact of diagnosed HAND on people living with HIV, either by slowing or reversing the progression and providing support.
The survey research showed, of the 98 respondents, 77% are aware of HAND with 52% indicating they were concerned about it. The majority of people said that they are talking about their concerns with both healthcare professionals and their significant others. The majority felt their concerns had been listened to.
The people who felt they had not been listened to, said they are understandably less likely to talk about their concerns again because of a negative response or they were worried about being stigmatised. Some survey respondents commented that they are fearful of living with HIV because it brings an uncertainty of their future.
This research into the understanding and experiences of people living with HIV about HAND have identified five key areas for resource development to assist both people living with HIV and our healthcare workers, service providers and significant others on how to respond appropriately and meaningfully when responding to or raising concerns about the possibility of HAND. This survey has been written up and the report has been released. It can be downloaded and read here.
If you have any concerns about HAND you can talk to your HIV doctor or contact Positive Life NSW by calling (02) 8357 8386, 1800 245 677 (freecall) or email contact@positivelife.org.au
