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Living through two pandemics: Kingston University research into experiences of HIV-positive people during Covid-19

Posted Tuesday 28 September 2021

Living through two pandemics: Kingston University research into experiences of HIV-positive people during Covid-19

The global response to two major health crises in recent history – the HIV pandemic and Covid-19 – and the experiences of people who lived through them, is being explored through new research by a Kingston University sociologist.

Dr Max Morris, an expert in gender and sexuality studies, is interviewing a wide range of people for the pilot study, which is funded by the Centre for Research in Communities, Identities and Difference at Kingston University.

This includes millennials who were born with HIV and older participants who were diagnosed in the 1980s before treatment became available and when a positive diagnosis felt like a death sentence. By capturing the lived experiences of the HIV pandemic, Dr Morris hopes his research will help inform UK policy makers in their response to the current health emergency.

This could be particularly important for long Covid, where acting quickly to develop the right treatment and getting it to people as rapidly as possible may prove vital for patient's outcomes, as proved to be the case for HIV, Dr Morris said. "As we find ourselves in the midst of a new global pandemic, I wanted to explore whether there were any lessons we can learn from what happened in the 1980s, particularly from those who were directly impacted," Dr Morris said.

"Do they have any insights that may have been neglected by policy makers, health researchers and those without a direct, lived experience of the virus? How are they coping with living through another pandemic? I hope my findings will help to inform policy on how health messages are communicated and reach people in the most effective way."

Dr Morris brings a unique personal perspective to his research because he is HIV-positive. He is open about his status and is keen to give participants a voice. "My own experiences of being HIV-positive definitely inform my work, because having first-hand experience gives a shared understanding between me, the interviewer, and the participants," he said.

"We understand the stigma and treatment of HIV-positive people and how things have changed since the 1980s. That's led to these interviews being some of the richest I have ever done as a sociologist," Dr Morris said.

Dr Max Morris of Kingston UniversityDr Max Morris of Kingston University

The first cases of HIV and AIDS were reported in 1981 and it continues to be a major global health issue, causing 36.3million deaths to date. An estimated 37.7million people worldwide were living with HIV at the end of 2020, according to the World Health Organisation (WHO). The first case of Covid-19 was recognised in November 2019 and it has since claimed 4.7million lives globally, reports WHO.

With both pandemics, the responses of international governments have come under scrutiny by the public. Dr Morris and his co-researchers are examining their responses and health campaigns, and how these have differed between Covid-19 and AIDs.

"Many people I've spoken to have expressed anger, frustration and disappointment that governments were very slow to react to the HIV and AIDs pandemic – whereas we've had vaccines for Covid-19 in under a year," said Dr Morris, a lecturer in criminology. "The amount of money and resources that's been invested in the current pandemic has not been invested equally when we look at previous pandemics," he added.

Effective antiretroviral therapy has been available for HIV-positive people in the UK since 1996. Dr Morris highlighted that while access to treatment and preventative drugs, such as PrEP (pre-exposure prophylaxis), make the virus less threatening, they are not universally available, creating health inequalities. "We could be in a position where we had made huge strides in reducing stigma and expanding treatment to make it universal. If the political will is there for coronavirus, as it should be, why can't it be for HIV, for which there have been many solutions for years?" he said.

The discourse around coronavirus and HIV are very different, Dr Morris explained, with Covid-19-positive people drawing sympathy. Meanwhile sexual stigma exists around HIV due to how it can be transmitted and in the 1980s this fed into ideas of individual responsibility – that people brought it on themselves, or it was a divine punishment for sinful behaviour, Dr Morris explained.

"The interviews give people living with HIV a platform to share their views, which often we are denied as a marginalised group and for a variety of intersecting inequalities," he said. "HIV tends to affect gender and sexual minorities, people of colour, migrants, trans people – groups who have experienced other forms of stigma, so we often don't have a voice. "It's been wonderful to talk to people from a diverse range of backgrounds about what the its been like for them."

The world has transformed since the early days of the HIV pandemic and the outcomes for HIV-positive people are far better than before, Dr Morris said. "This study is about looking back and learning lessons, but I also want to emphasise how far we have come. We now have access to treatment, people with HIV will now have an average life expectancy, and we can't pass the virus on when on highly effective treatment," he said.

"When you receive an HIV diagnosis, the world comes crashing down because we still have that idea of death, stigma and shame that's been inherited," he said. "The outdated information and cultural legacy of the tombstone television advert lingers in everyone's minds, which means people are less likely to get tested because of fear. Wouldn't it be easier if we updated everyone's understanding on this?" he added.

The Kingston University-funded project is supported by co-researchers at Maastricht University in the Netherlands and Birkbeck, University of London.

The universities are partnering with three HIV charities in the UK – Brigstowe, METRO and George House Trust. Dr Morris plans to develop the pilot into a larger study and hopes more HIV-positive researchers will join the team to add their voices and insight.

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