Phoebe Moloney – NOVEMBER 17 2019 – 7:00AM
STORIES: Karumah’s community and promotions officer Aly James with the service’s new book Karuma: 30 Years of Care. Picture: Supplied
After thirty years of supporting residents of the Hunter region with HIV, staff at Karumah say they are grateful to be able to tell a very different story about the virus to their clients and the community.
Whereas once the disease was a death sentence, early and ongoing medical treatment can now stop the disease’s progression and maintain the viral load at an undetectable level – at which point sufferers can be confident they won’t pass it to others.
“You have a good chance of living a very normal life,” said Karumah case worker Catherine Conaghan. “And it won’t stop you from having a family. I think the reality is completely different to what a lot of people think.”
To celebrate its 30th anniversary, the Newcastle not-for-profit service is launching a book on Sunday sharing 30 stories from its clients past and present of love, loss and survival.
PASSIONATE: Catherine Conaghan is a case manager at Karumah Positive Living Centre. Picture: Max Mason-Hubers
The support service hopes to illustrate the diversity of people the disease affects in the Hunter, which Ms Conaghan says includes men and women of differing sexualities and backgrounds. “Karumah: 30 years of Caring” aims to humanize those with HIV, as a large part of the service’s work in 2019 is trying to counter the impacts of stigma and discrimination on clients’ lives.
“We hope that this project can not only preserve the history of Newcastle’s response to the virus but also show that HIV affects people from all walks of life,” said Karumah’s community and promotions officer Aly James, who collated the stories.
“Above all, we want to celebrate the uniqueness and resilience of our community.”
One client of Karumah, who has asked to remain anonymous, said when he was first diagnosed with HIV 10 years ago he thought he was “going to die”.
“I thought I wouldn’t have a future and I was worried about my family and friends. Luckily, I quickly learnt that is not the case,” he said.
The Lambton resident sought treatment “right away” and, with daily medication, achieved an undetectable viral load within months.
Ward 11 at Royal Newcastle Hospital decked out for Christmas just days before the 1989 earthquake. Picture: Archival image collected by Pauline Dobson and Richard Riley
“The virus never really had a chance to progress so there’s been very little impact on my overall health, thankfully. This also means my work has been largely unaffected,” he said.
“Because I’m undetectable I cannot pass HIV onto another person. However, dating is still hard because there is so much stigma.
“I wish people would come from a place of understanding instead of fear.”
He said meeting others with HIV through Karumah had been “life changing”.
“I have made friends who I don’t have to explain anything to,” he said.Karumah is hosting a celebration for the launch of the book in Newcastle on Sunday. Those interested in attending can email firstname.lastname@example.org for details of the event.Read more
Taken from the ABC Newcastle website:
Bowling alleys, the Grim Reaper, intense scary voice – the HIV educational ads from the 1980’s are still well known in the Australian community.
But a lot has changed since then.
Kia Handley speaks with Aly James, a Community Support & Promotions Officer from Karumah, and Mathew Vaughan, Acting Director of HIV and Sexual Health at ACON, about what life looks like now for people living with HIV.
Duration: 13min 37sec
Broadcast: Wed 2 Oct 2019, 9:00am
You can listen to the interview here: https://www.abc.net.au/radio/newcastle/programs/mornings/hiv/11567030?fbclid=IwAR2VHzY-6g301OoXKMo5qdFOgzV6WTZvNDG5JbjQhmt7af8VeWYbi725S30Read more
The following profile was featured in the Newcastle Herald on April 1st, 2019:
Catherine Conaghan says she will “be carried out in a stretcher” before she leaves her job.
The Holmesville resident has served as Karumah Positive Living Centre’s case manager for seven years.
“I love my work,” the social worker said. “I think I’ve done all my growing in the last seven years.”
Karumah provides support to around 80 Hunter residents who live with HIV. This year, the service is celebrating its 30th birthday.
“Some people will isolate themselves,” she said. “They feel like they don’t deserve to be part of the community. So we try working with them to engage socially and become more confident.
“There can be mental health issues triggered, some have PTSD symptoms, or other mental health issues.
“For most we’re in contact with, it’s a question of: you’re never going to recover from HIV nor likely recover from mental health issues, but what is your own perception of what that could be like?”
“Basically, I will go and meet people in their homes or a venue that suits them and talk about barriers to accessing what would generally be considered normal life choices. In collaboration, we’ll establish what steps to undertake to get rid of some of those barriers,”
She said that while treatment for HIV had greatly improved and meant most people could live “a very normal life”, a positive HIV diagnosis still carries social and psychological implications.
She said a “really important” message about living with HIV was that “undetectable means untransmittable” or “U equals U”.
With early and ongoing treatment the advancement of HIV can be stopped, Ms Conaghan explained, and the virus reduced to an undetectable level in the blood. When the virus is suppressed to an undetectable level patients can be confident they will not pass the disease on to anybody else.
Ms Conaghan said her clients were mostly over the age of 40, but otherwise “very, very diverse”.
“There’s people of all backgrounds and genders and sexualities, quite a number of culturally and linguistically diverse people, people with families and people who are single,” she said.
A common factor is the stigma they experience.
“The biggest thing is that there is a human face behind the label,” Ms Conaghan said.
“It is still considered by lots of people as the worst thing that could happen to them,”
“People don’t get tested because they don’t want to live with the reality, whereas the reality is completely different to what they think. You have a good chance of having a very normal life. It won’t stop you from having a family.”
Written by Pheobe Molony
See the full article here: