When Kalkadoon, Barahda Barna and Wangi man Michael Brown first discovered he was HIV-positive, he was living in Cairns in far north Queensland. He initially suffered some judgement in his interaction with health services and as a result, had limited trust in the health system and care he was receiving.
One comment, one leap into faith in digital health, came from a pharmacist in Cairns and a doctor who treated him with dignity.
Now he is a firm advocate for My Health Record and is encouraging other HIV-positive people to use their record and take control of their health, knowing their privacy is protected.
Born in Townsville, Michael now works as a sexual health project officer in Cherbourg Aboriginal community, 170 km north-west of Brisbane, in Wakka Wakka tribal country.
“Today in Australia, Indigenous people are 2.6 times at higher risk of acquiring HIV than any other demographic,” he said.
“HIV today doesn’t have to be a death sentence. People need to know to come and get tested. They need to know they are at risk. I didn’t realise I was at risk. When I started doing my study in Indigenous primary health care, there was no sexual health studies.”
“People still have stigma and fear around sexual health. Disclosure isn’t easy. I don’t want to be judged.”
Michael met Dr Nicolette Roux, a GP at Wuchopperen Health Service in Cairns.
“When Michael first came to Wuchopperen, he was trying to see who he could trust,” she said.
“There is a certain fragility in HIV-positive patients coming to see you because they’re carrying quite a lot with them. It causes an impact on their mental health. So it was very important for me to know who he trusts, who he’s around, who in the community has stood out to him and one of them was the pharmacist.”
Optimal Pharmacy Plus Raintrees Manager, Belinda Everson, said “Michael came in one day and basically interviewed me for the job, to be his pharmacist.”
Michael had gone into two other local pharmacies that week to fill his prescription for HIV medication and been met with shocked looks, finger pointing and staring.
“People won’t come back for life-saving prescriptions when that happens,” he said. “I asked for my script back and left both times.”
He said he had a lot of fear about going into another pharmacy and telling people his status.
“When I met Belinda, I gave her my script and I looked for a reaction,” he said. “I said, ‘Is everything ok?’ and she said, ‘It’s just medication’.”
“Now, HIV is a treatable disease,” Belinda said.
“That’s what I tried to convey to Michael, that he was safe here, he was respected and anything he told me was confidential, nothing would leave the shop.”
Michael said he didn’t really know much about My Health Record in the beginning and he didn’t really want to share his information.
“Legally, a lot of people don’t need to know my status,” he said.
Belinda said she could understand why Michael, an Indigenous man living with HIV, was concerned about his privacy.
“My Health Record has a lot of very personalised information on there and people have this fear, they’re concerned about where the information might go and how it could be used,” she said.
Dr Roux said she and Michael talked about privacy and digital health.
“I explained to him that he can be in control of his record, that he can have a look at what information is shared on his record and if he felt there was information that he didn’t want to share, we would be able to censor that,” she said.
“In fact, every time you upload information to My Health Record, you can choose which information you’re uploading.”
Michael said Dr Roux makes sure he has confidentiality.
“It’s nice to have long-term doctors for that continuity of care,” he said. “When I need to go to a new doctor and pharmacist, they can see the history in my record and I don’t have to re-tell my story every time.”
“It would be great if it was easy and stress free, with no shame and no stigma.”
“So hopefully, My Health Record will help the doctors and the experts to further break down stigma and shame for all people accessing their services. Doctors can include a note about treating the patient with sensitivity and make sure their desire for privacy is respected.”
“That’ll encourage people to come in, use the services and keep their health in check.”