Looking after yourself and managing your HIV takes far more than just a prescription. It’s about building a good and trustful relationship with your doctor; it’s about nurturing relationships with family and friends; it’s about being mindful of your mental health; it’s about being proactive in managing your wellbeing. It’s about living in the moment — and enjoying those moments. That’s the ethos behind a new campaign developed by the National Association of People with HIV Australia (NAPWHA).
Branded ‘Good Quality of Life’ and launched last month, a crucial aspect of the nationwide campaign is that it is peer-based. “These are real positive people being upfront and open about how life with HIV is for them,” says NAPWHA Executive Director Aaron Cogle. “This campaign is really about community,” he says. “It was developed by community, for community.”
Rolling out across various platforms, the campaign is designed to help and empower people with HIV to take action in their own lives. “The aim is for people with HIV to build greater resilience and confidence to be able to participate in and make choices about their healthcare,” says Cogle.
Although a diverse bunch, all of the people featured in the campaign have one thing in common — they place a fundamental importance on being on the right HIV treatment. “The same treatment does not work the same for everyone, so finding that right treatment and sticking to it is one of the most important things,” says one of the campaign’s heroes, Jose.
The campaign encourages people with HIV to speak out if they feel that the treatment they’re on isn’t working for them. Abby initially started out on a multiple-drug regimen. “I’ve since moved to a one pill a day regimen, which is so easily managed,” she says. “I don’t have any side effects. I just have to remember to take one pill once a day and it’s allowed me to get my viral load to undetectable. And I feel really well.”
While science and medicine have advanced considerably since the early days of the epidemic, attitudes around HIV remain much the same. People living with HIV continue to be judged, shunned and shamed. Stigma and discrimination have numerous detrimental effects. Indeed, people with HIV are more likely to report anxiety or depression than the general population.
With that in mind, a core theme of the campaign is for positive people to stay happy, healthy and connected. An accompanying website — goodqualityoflife.com.au — features videos in which people share the good things that contribute to their own quality of life.
“Life is really busy and it’s important for me to retain a positive frame of mind and good health through exercise,” says Abby. “So I spend a lot of time making sure I get to the gym, whether it’s doing yoga class or boxing. I find that maintaining a good solid exercise routine really helps me to stay well.”
For Dai, it’s his dogs that contribute to his good health. “A moment I realised life was really good and happy was when I found my dogs with their chins on the bed in the morning wagging their tails, looking at me and wanting me to get up,” he says. “They seemed excited about the beginning of another day and spending awesome time with me.”
Ruan maintains a good quality of life by surrounding himself with people he cares about. “But if things get really hard I like to jump on my motorbike and ride out to the countryside and have some time on my own, enjoying nature and the freedom it gives me,” he says.
The website also features discussions about the many common issues facing positive people, including relating to your doctor, the importance of regular monitoring, the importance of reaching an undetectable HIV status, how to maintain good mental health, how to maintain fulfilling relationships, and how PrEP is impacting the positive community.
Cogle hopes their stories will inspire others to reflect on their own quality of life; the things they do to maintain it, and the things they might do to make their lives better. “The campaign is built on a premise that when it comes to maintaining their own quality of lives, positive people are the experts,” says Cogle. “What could be a more uplifting and positive message than that?”