Latest news with #KarumahIncorporated
The Advertiser
25-06-2025
- Health
- The Advertiser
'My partner brought it home': agony of living with HIV and losing friends
When Baden Willmott was diagnosed with HIV, he was given two years to live. "I was told, go home, write a will and get your affairs in order," said Mr Willmott, of Newcastle. "It's 32 years later and I'm still here." Mr Willmott, now 59, was diagnosed at age 27 while living in Melbourne. "My partner brought it home," he said. Mr Willmott has "undetectable, therefore non-transmittable, HIV". "It's under control. I take six tablets a day," he said. "But there are comorbidities that come with it and they're causing me problems now." He said keeping the disease at bay was a "catch-22". "The drugs can cause problems with your kidneys and liver," he said. "And I have a bad back, hip and knees from the career I've had over the years as a horticulturalist." He remains hopeful that a cure for HIV will be discovered. The Newcastle Herald reported on Tuesday that the Hunter New England Health district recorded 20 cases of HIV in 2024. This rose 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). Mr Willmott said living with the virus had caused "mental health issues I never thought I'd have". "I have bad PTSD and survivor's guilt," he said. "My best friend from high school died from AIDS in 1988. He went to Canada for three years and came back with the virus." His friend's family was religious. "As far as his family was concerned, he had cancer. I wasn't allowed to go to his funeral, so I couldn't get closure. "I lost over 14 friends in the 1980s." He said the stigma around HIV was "still bad". Most people with the virus mostly keep it to themselves. "I don't mind talking about it because of the great support I have and my role as chairperson of Karumah Incorporated," Mr Willmott said. "It's a NSW Health-funded organisation that supports people living with HIV and their family and friends. "I make sure people know that they can live a long life with the virus and get support." He was concerned about the younger generation being cavalier about HIV. "They didn't go through the '80s and '90s. I worry that they think it can be cured and it's not a problem." He noted there was a medication available that "you can take if you think you're exposed". But he was concerned that some people rely on this without taking other precautions, such as practising safe sex. "I felt so much anger towards the person that gave me the virus," he said. "I've had a lot of counselling. I still see a counsellor every fortnight. "Every time something happens that pulls me back, I have to speak to someone about it." He said it was difficult to find professionals who know about HIV and are willing to talk about it. "There's only a certain number of counsellors in Newcastle who are willing to do that," he said. "That's where Karumah's support is helpful. When Baden Willmott was diagnosed with HIV, he was given two years to live. "I was told, go home, write a will and get your affairs in order," said Mr Willmott, of Newcastle. "It's 32 years later and I'm still here." Mr Willmott, now 59, was diagnosed at age 27 while living in Melbourne. "My partner brought it home," he said. Mr Willmott has "undetectable, therefore non-transmittable, HIV". "It's under control. I take six tablets a day," he said. "But there are comorbidities that come with it and they're causing me problems now." He said keeping the disease at bay was a "catch-22". "The drugs can cause problems with your kidneys and liver," he said. "And I have a bad back, hip and knees from the career I've had over the years as a horticulturalist." He remains hopeful that a cure for HIV will be discovered. The Newcastle Herald reported on Tuesday that the Hunter New England Health district recorded 20 cases of HIV in 2024. This rose 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). Mr Willmott said living with the virus had caused "mental health issues I never thought I'd have". "I have bad PTSD and survivor's guilt," he said. "My best friend from high school died from AIDS in 1988. He went to Canada for three years and came back with the virus." His friend's family was religious. "As far as his family was concerned, he had cancer. I wasn't allowed to go to his funeral, so I couldn't get closure. "I lost over 14 friends in the 1980s." He said the stigma around HIV was "still bad". Most people with the virus mostly keep it to themselves. "I don't mind talking about it because of the great support I have and my role as chairperson of Karumah Incorporated," Mr Willmott said. "It's a NSW Health-funded organisation that supports people living with HIV and their family and friends. "I make sure people know that they can live a long life with the virus and get support." He was concerned about the younger generation being cavalier about HIV. "They didn't go through the '80s and '90s. I worry that they think it can be cured and it's not a problem." He noted there was a medication available that "you can take if you think you're exposed". But he was concerned that some people rely on this without taking other precautions, such as practising safe sex. "I felt so much anger towards the person that gave me the virus," he said. "I've had a lot of counselling. I still see a counsellor every fortnight. "Every time something happens that pulls me back, I have to speak to someone about it." He said it was difficult to find professionals who know about HIV and are willing to talk about it. "There's only a certain number of counsellors in Newcastle who are willing to do that," he said. "That's where Karumah's support is helpful. When Baden Willmott was diagnosed with HIV, he was given two years to live. "I was told, go home, write a will and get your affairs in order," said Mr Willmott, of Newcastle. "It's 32 years later and I'm still here." Mr Willmott, now 59, was diagnosed at age 27 while living in Melbourne. "My partner brought it home," he said. Mr Willmott has "undetectable, therefore non-transmittable, HIV". "It's under control. I take six tablets a day," he said. "But there are comorbidities that come with it and they're causing me problems now." He said keeping the disease at bay was a "catch-22". "The drugs can cause problems with your kidneys and liver," he said. "And I have a bad back, hip and knees from the career I've had over the years as a horticulturalist." He remains hopeful that a cure for HIV will be discovered. The Newcastle Herald reported on Tuesday that the Hunter New England Health district recorded 20 cases of HIV in 2024. This rose 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). Mr Willmott said living with the virus had caused "mental health issues I never thought I'd have". "I have bad PTSD and survivor's guilt," he said. "My best friend from high school died from AIDS in 1988. He went to Canada for three years and came back with the virus." His friend's family was religious. "As far as his family was concerned, he had cancer. I wasn't allowed to go to his funeral, so I couldn't get closure. "I lost over 14 friends in the 1980s." He said the stigma around HIV was "still bad". Most people with the virus mostly keep it to themselves. "I don't mind talking about it because of the great support I have and my role as chairperson of Karumah Incorporated," Mr Willmott said. "It's a NSW Health-funded organisation that supports people living with HIV and their family and friends. "I make sure people know that they can live a long life with the virus and get support." He was concerned about the younger generation being cavalier about HIV. "They didn't go through the '80s and '90s. I worry that they think it can be cured and it's not a problem." He noted there was a medication available that "you can take if you think you're exposed". But he was concerned that some people rely on this without taking other precautions, such as practising safe sex. "I felt so much anger towards the person that gave me the virus," he said. "I've had a lot of counselling. I still see a counsellor every fortnight. "Every time something happens that pulls me back, I have to speak to someone about it." He said it was difficult to find professionals who know about HIV and are willing to talk about it. "There's only a certain number of counsellors in Newcastle who are willing to do that," he said. "That's where Karumah's support is helpful. When Baden Willmott was diagnosed with HIV, he was given two years to live. "I was told, go home, write a will and get your affairs in order," said Mr Willmott, of Newcastle. "It's 32 years later and I'm still here." Mr Willmott, now 59, was diagnosed at age 27 while living in Melbourne. "My partner brought it home," he said. Mr Willmott has "undetectable, therefore non-transmittable, HIV". "It's under control. I take six tablets a day," he said. "But there are comorbidities that come with it and they're causing me problems now." He said keeping the disease at bay was a "catch-22". "The drugs can cause problems with your kidneys and liver," he said. "And I have a bad back, hip and knees from the career I've had over the years as a horticulturalist." He remains hopeful that a cure for HIV will be discovered. The Newcastle Herald reported on Tuesday that the Hunter New England Health district recorded 20 cases of HIV in 2024. This rose 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). Mr Willmott said living with the virus had caused "mental health issues I never thought I'd have". "I have bad PTSD and survivor's guilt," he said. "My best friend from high school died from AIDS in 1988. He went to Canada for three years and came back with the virus." His friend's family was religious. "As far as his family was concerned, he had cancer. I wasn't allowed to go to his funeral, so I couldn't get closure. "I lost over 14 friends in the 1980s." He said the stigma around HIV was "still bad". Most people with the virus mostly keep it to themselves. "I don't mind talking about it because of the great support I have and my role as chairperson of Karumah Incorporated," Mr Willmott said. "It's a NSW Health-funded organisation that supports people living with HIV and their family and friends. "I make sure people know that they can live a long life with the virus and get support." He was concerned about the younger generation being cavalier about HIV. "They didn't go through the '80s and '90s. I worry that they think it can be cured and it's not a problem." He noted there was a medication available that "you can take if you think you're exposed". But he was concerned that some people rely on this without taking other precautions, such as practising safe sex. "I felt so much anger towards the person that gave me the virus," he said. "I've had a lot of counselling. I still see a counsellor every fortnight. "Every time something happens that pulls me back, I have to speak to someone about it." He said it was difficult to find professionals who know about HIV and are willing to talk about it. "There's only a certain number of counsellors in Newcastle who are willing to do that," he said. "That's where Karumah's support is helpful.
The Advertiser
24-06-2025
- Health
- The Advertiser
'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.
