For someone turning 70 on his next birthday, John Jaquiss from the United Kingdom of Great Britain and Northern Ireland is impressively fit, speaking enthusiastically about the 5-kilometre mountain hike he is about to embark upon, having started the day with an early morning swim.
Yet 23 years ago, when his doctor broke the news to him that he had acquired the HIV virus, he did not rate his chances of seeing 60.
“When I got diagnosed, I thought I might have 15 years if I’m lucky,” he says. “Maybe I’ll make 60. I’m lucky because I’ve taken a positive approach to life. From the outset I focused on keeping fit and well.”
John’s friends and social network played a vital role in helping him get through this difficult time. Showing up for each other, some of his friends shared their own experience of living with HIV and gave him hope when he needed it.
A routine check can be life-saving
John was diagnosed via a routine check. He had done an HIV test not long before and nearly declined the subsequent test. Looking back, he says, “Thank God I didn’t. Being on medication rapidly after diagnosis meant the virus had less of an opportunity to take hold.”
Unfortunately, this was not the only diagnosis for John that year. Soon after learning he was HIV-positive, he was diagnosed with a so-called opportunistic cancer. HIV harms the body’s immune system, increasing the risks for certain types of cancers. Thanks to early detection, and swift access to the right treatment and care, John was able to beat the cancer.
“For me the important thing is keeping in touch with myself, watching my diet. I focus on being really fit and well. I work out every day.” John is proactive and takes care of his health. Living with HIV, his body is more susceptible to co-morbidities like joint conditions and skin problems. In close consultation with his general practitioner, he follows his treatment plan and routine checks.
Dealing with multiple diagnoses
Just a couple of years after his HIV and cancer diagnoses came the next shock. In one of his routine checks, John found out he was infected with the hepatitis C virus – a virus that leads to inflammation of the liver.
“At that point I felt very low. I thought HIV and opportunistic cancer were bad enough and then along came hepatitis. I was just wondering what would kill me first. I was told I had to go on 48 weeks of treatment immediately. It took the whole of 2006. I was on Interferon and Ribavirin and the side effects were horrendous.”
John had to change his treatments for hepatitis C and participated in a clinical trial for a new hepatitis C drug. “One drug worked for a few weeks but in the end, it was a combination of Harvoni and Ribavirin that worked.”
After months of treatment and suffering from strong side effects affecting his eyesight and memory, John recovered from hepatitis C.
Fighting the stigma around HIV and hepatitis C
Looking back, John says dealing with hepatitis C felt lonely. At the time when John was diagnosed with hepatitis C, he worked in a high-pressure executive role in a major company. Experiencing stigma, he felt it was easier to talk to colleagues about his cancer than about his HIV or hepatitis C infections.
The emotional support from his friends and his social network had always helped John deal with his medical circumstances. “Peer support is so valuable,” he adds. “You have to get help to navigate the system. (…) You need someone to listen to put things into perspective. When I had hepatitis C, I had no one to talk to.”
John had, on occasion, felt the stigma around HIV from doctors and even an ex-partner, but his struggle with hepatitis C was even harder. “The illness didn’t have the community that HIV has. People treat you like a leper.”
John’s story is a strong reminder that people living with HIV, hepatitis and other sexually transmitted diseases often experience stigma and discrimination around their medical conditions. On top of the worry about their health, they feel left behind and alone. In the fight against HIV/AIDS, ending stigma and discrimination for people at risk, living with or affected by HIV is a key component – in health-care settings and society as a whole.
Ageing with HIV
John is part of a rapidly growing community of people ageing with HIV. With improvements in the effectiveness of treatment with antiretroviral therapy (ART), people with HIV who are diagnosed early on, treated quickly and who stay on ART can keep the virus suppressed and live long and healthy lives.
Today, John radiates positivity, serving as an inspirational speaker and countering stereotypes and misconceptions around HIV. “I sit on a patient representative committee, and I’ve done training sessions with all the GP [general practitioner] practices and clinical staff in the area.”
Putting people at the heart of the response is critical if governments and health authorities are to successfully tackle HIV, viral hepatitis and sexually transmitted infections in the WHO European Region – covering 53 Member States across Europe and Central Asia – and globally.
WHO/Europe’s regional action plans for ending AIDS and the epidemics of viral hepatitis and sexually transmitted infections for 2022–2030 emphasize the urgency of reducing stigma in the health sector and society more widely, along with consistent and affordable access to treatment and care for all who need it.
