24-06-2025
'Heartbreaking': Rise in HIV cases revives nightmares of the Grim Reaper
A rise in HIV cases in the Hunter New England health district has sparked calls for more support for those living with the virus.
Newcastle's Serena Jacobs said those affected "need to know they are not alone and there is support".
The Hunter New England Health district recorded 20 cases of HIV in 2024, rising from 12 and four cases in the previous two years respectively.
The highest number of cases in the district in recent years was in 2014 (27) and 2019 (23).
Of newly diagnosed HIV patients in NSW in 2024, 69 per cent were "men who have sex with men", 25 per cent were heterosexual and 3 per cent were injecting drug users.
Ms Jacobs said people living with HIV with access to treatment "can achieve undetectable viral loads, meaning they cannot transmit the virus".
Over the past year, Ms Jacobs led a revival of Karumah Incorporated, a NSW Health-funded organisation that supports people living with and affected by HIV.
Originally established in 1989, Karumah became a sanctuary.
Ms Jacobs said it was a "period marked by widespread fear and misinformation, much of it ignited by the Grim Reaper campaign of the 1980s".
The Newcastle-based not-for-profit - a small, peer-led organisation - aims to expand to meet demand.
"Our strength lies in our members. They are the heart and soul of what we do," Ms Jacobs said.
"They inspire me. Their lived experience drives our mission.
"While they're always ready to support others, we are experiencing a backlog for essential services."
Karumah offers case management and peer support.
"We collaborate with other services, but it's not enough," she said.
Additional programs such as in-person counselling and HIV education were needed.
"There is a noticeable gap in programs tailored to key groups, including heterosexual individuals and women living with HIV," she said.
"But with only two paid staff, and rising operational costs, it's near impossible to provide these."
Karumah is seeking financial sponsorship.
As well as being the organisation's director, Ms Jacobs works as a case manager.
"It's a lot of work and it's ongoing. I am lucky that Ashlee Rhodes, our other case manager, is just as committed as I am.
"We do a lot of voluntary hours."
Ms Jacobs said stigma and discrimination against people living with HIV continued.
"Misinformation and fear surrounding HIV remains. Many survivors of the virus still encounter cruel and degrading treatment," she said.
"Their stories are heartbreaking."
She said healthcare industry workers should have "access to up-to-date HIV education to prevent discrimination and protect patient confidentiality".
"Our youth need clear, sexual health education delivered in ways they relate to.
"They lack understanding of HIV. Many don't know what it is."
She said no one should be relaxed about getting the virus, but those living with it "can live long healthy lives".
Antiretroviral therapy can suppress the virus, but "cause other potential health complications".
"HIV is a lifelong condition," she said.
When people are first diagnosed, the shock is often severe.
Ms Jacobs has witnessed many people's mental health rapidly decline after being diagnosed.
"Being diagnosed with HIV has lasting impacts on an individual's mental health," she said.
A rise in HIV cases in the Hunter New England health district has sparked calls for more support for those living with the virus.
Newcastle's Serena Jacobs said those affected "need to know they are not alone and there is support".
The Hunter New England Health district recorded 20 cases of HIV in 2024, rising from 12 and four cases in the previous two years respectively.
The highest number of cases in the district in recent years was in 2014 (27) and 2019 (23).
Of newly diagnosed HIV patients in NSW in 2024, 69 per cent were "men who have sex with men", 25 per cent were heterosexual and 3 per cent were injecting drug users.
Ms Jacobs said people living with HIV with access to treatment "can achieve undetectable viral loads, meaning they cannot transmit the virus".
Over the past year, Ms Jacobs led a revival of Karumah Incorporated, a NSW Health-funded organisation that supports people living with and affected by HIV.
Originally established in 1989, Karumah became a sanctuary.
Ms Jacobs said it was a "period marked by widespread fear and misinformation, much of it ignited by the Grim Reaper campaign of the 1980s".
The Newcastle-based not-for-profit - a small, peer-led organisation - aims to expand to meet demand.
"Our strength lies in our members. They are the heart and soul of what we do," Ms Jacobs said.
"They inspire me. Their lived experience drives our mission.
"While they're always ready to support others, we are experiencing a backlog for essential services."
Karumah offers case management and peer support.
"We collaborate with other services, but it's not enough," she said.
Additional programs such as in-person counselling and HIV education were needed.
"There is a noticeable gap in programs tailored to key groups, including heterosexual individuals and women living with HIV," she said.
"But with only two paid staff, and rising operational costs, it's near impossible to provide these."
Karumah is seeking financial sponsorship.
As well as being the organisation's director, Ms Jacobs works as a case manager.
"It's a lot of work and it's ongoing. I am lucky that Ashlee Rhodes, our other case manager, is just as committed as I am.
"We do a lot of voluntary hours."
Ms Jacobs said stigma and discrimination against people living with HIV continued.
"Misinformation and fear surrounding HIV remains. Many survivors of the virus still encounter cruel and degrading treatment," she said.
"Their stories are heartbreaking."
She said healthcare industry workers should have "access to up-to-date HIV education to prevent discrimination and protect patient confidentiality".
"Our youth need clear, sexual health education delivered in ways they relate to.
"They lack understanding of HIV. Many don't know what it is."
She said no one should be relaxed about getting the virus, but those living with it "can live long healthy lives".
Antiretroviral therapy can suppress the virus, but "cause other potential health complications".
"HIV is a lifelong condition," she said.
When people are first diagnosed, the shock is often severe.
Ms Jacobs has witnessed many people's mental health rapidly decline after being diagnosed.
"Being diagnosed with HIV has lasting impacts on an individual's mental health," she said.
A rise in HIV cases in the Hunter New England health district has sparked calls for more support for those living with the virus.
Newcastle's Serena Jacobs said those affected "need to know they are not alone and there is support".
The Hunter New England Health district recorded 20 cases of HIV in 2024, rising from 12 and four cases in the previous two years respectively.
The highest number of cases in the district in recent years was in 2014 (27) and 2019 (23).
Of newly diagnosed HIV patients in NSW in 2024, 69 per cent were "men who have sex with men", 25 per cent were heterosexual and 3 per cent were injecting drug users.
Ms Jacobs said people living with HIV with access to treatment "can achieve undetectable viral loads, meaning they cannot transmit the virus".
Over the past year, Ms Jacobs led a revival of Karumah Incorporated, a NSW Health-funded organisation that supports people living with and affected by HIV.
Originally established in 1989, Karumah became a sanctuary.
Ms Jacobs said it was a "period marked by widespread fear and misinformation, much of it ignited by the Grim Reaper campaign of the 1980s".
The Newcastle-based not-for-profit - a small, peer-led organisation - aims to expand to meet demand.
"Our strength lies in our members. They are the heart and soul of what we do," Ms Jacobs said.
"They inspire me. Their lived experience drives our mission.
"While they're always ready to support others, we are experiencing a backlog for essential services."
Karumah offers case management and peer support.
"We collaborate with other services, but it's not enough," she said.
Additional programs such as in-person counselling and HIV education were needed.
"There is a noticeable gap in programs tailored to key groups, including heterosexual individuals and women living with HIV," she said.
"But with only two paid staff, and rising operational costs, it's near impossible to provide these."
Karumah is seeking financial sponsorship.
As well as being the organisation's director, Ms Jacobs works as a case manager.
"It's a lot of work and it's ongoing. I am lucky that Ashlee Rhodes, our other case manager, is just as committed as I am.
"We do a lot of voluntary hours."
Ms Jacobs said stigma and discrimination against people living with HIV continued.
"Misinformation and fear surrounding HIV remains. Many survivors of the virus still encounter cruel and degrading treatment," she said.
"Their stories are heartbreaking."
She said healthcare industry workers should have "access to up-to-date HIV education to prevent discrimination and protect patient confidentiality".
"Our youth need clear, sexual health education delivered in ways they relate to.
"They lack understanding of HIV. Many don't know what it is."
She said no one should be relaxed about getting the virus, but those living with it "can live long healthy lives".
Antiretroviral therapy can suppress the virus, but "cause other potential health complications".
"HIV is a lifelong condition," she said.
When people are first diagnosed, the shock is often severe.
Ms Jacobs has witnessed many people's mental health rapidly decline after being diagnosed.
"Being diagnosed with HIV has lasting impacts on an individual's mental health," she said.
A rise in HIV cases in the Hunter New England health district has sparked calls for more support for those living with the virus.
Newcastle's Serena Jacobs said those affected "need to know they are not alone and there is support".
The Hunter New England Health district recorded 20 cases of HIV in 2024, rising from 12 and four cases in the previous two years respectively.
The highest number of cases in the district in recent years was in 2014 (27) and 2019 (23).
Of newly diagnosed HIV patients in NSW in 2024, 69 per cent were "men who have sex with men", 25 per cent were heterosexual and 3 per cent were injecting drug users.
Ms Jacobs said people living with HIV with access to treatment "can achieve undetectable viral loads, meaning they cannot transmit the virus".
Over the past year, Ms Jacobs led a revival of Karumah Incorporated, a NSW Health-funded organisation that supports people living with and affected by HIV.
Originally established in 1989, Karumah became a sanctuary.
Ms Jacobs said it was a "period marked by widespread fear and misinformation, much of it ignited by the Grim Reaper campaign of the 1980s".
The Newcastle-based not-for-profit - a small, peer-led organisation - aims to expand to meet demand.
"Our strength lies in our members. They are the heart and soul of what we do," Ms Jacobs said.
"They inspire me. Their lived experience drives our mission.
"While they're always ready to support others, we are experiencing a backlog for essential services."
Karumah offers case management and peer support.
"We collaborate with other services, but it's not enough," she said.
Additional programs such as in-person counselling and HIV education were needed.
"There is a noticeable gap in programs tailored to key groups, including heterosexual individuals and women living with HIV," she said.
"But with only two paid staff, and rising operational costs, it's near impossible to provide these."
Karumah is seeking financial sponsorship.
As well as being the organisation's director, Ms Jacobs works as a case manager.
"It's a lot of work and it's ongoing. I am lucky that Ashlee Rhodes, our other case manager, is just as committed as I am.
"We do a lot of voluntary hours."
Ms Jacobs said stigma and discrimination against people living with HIV continued.
"Misinformation and fear surrounding HIV remains. Many survivors of the virus still encounter cruel and degrading treatment," she said.
"Their stories are heartbreaking."
She said healthcare industry workers should have "access to up-to-date HIV education to prevent discrimination and protect patient confidentiality".
"Our youth need clear, sexual health education delivered in ways they relate to.
"They lack understanding of HIV. Many don't know what it is."
She said no one should be relaxed about getting the virus, but those living with it "can live long healthy lives".
Antiretroviral therapy can suppress the virus, but "cause other potential health complications".
"HIV is a lifelong condition," she said.
When people are first diagnosed, the shock is often severe.
Ms Jacobs has witnessed many people's mental health rapidly decline after being diagnosed.
"Being diagnosed with HIV has lasting impacts on an individual's mental health," she said.
