Living with HIV/Aids: Hong Kong quilt exhibit instils sense of connection among survivors, and helps battle stigma

In 2017, Colby, then aged 18, was diagnosed with human immunodeficiency virus (HIV), an infection that attacks the body’s immune system.

“I was feeling nauseous, had a fever and was exhausted all the time,” says Colby, who was born in the Chinese province of Fujian, but moved to Hong Kong with his family when he was aged two.

“I didn’t attribute these symptoms to HIV because I was under a lot of stress because of some childhood trauma and also from the transition from high school to university,” he says.

Having just started a new relationship, Colby wanted to make sure he was healthy.

“I really liked my new boyfriend and wanted things to be good and healthy, so to protect our relationship I was like, ‘OK, let’s go for a check up.’”

A rapid antibody test showed he was HIV positive. His then 21-year-old partner tested negative.

If left untreated HIV can lead to Aids (acquired immunodeficiency syndrome), the most severe stage of HIV.

There is no vaccine to prevent HIV infection, and no cure for HIV/Aids.

In 2017 Colby, aged 18, was diagnosed with HIV. Photo: courtesy of the organisers of the “United in Memory: Aids Memorial Quilt Exhibition”

But unlike the 1980s and ’90s – the epidemic was first clinically observed in 1981, and there was no effective treatment until 1997 – today, an HIV diagnosis is no longer a death sentence.

Access to effective HIV prevention, diagnosis, treatment (antiretroviral drugs) and care means an HIV infection has become a manageable chronic health condition, enabling those living with HIV to lead long and healthy lives.

“As long as I take my daily medicine, do blood tests and [have regular medical consultations], then the viral load becomes undetectable with regular and continuous treatment, and untransmittable,” says Colby, adding that a six-month supply of medication costs around HK$30 (US$4).

An attendee at the Aids Memorial in New York City, on World Aids Day, on December 1, 2022. Photo: TNS

However, HIV remains a major global public health issue, having claimed 40.4 million lives so far, according to the World Health Organization. A total of 93 cases were reported to Hong Kong’s Centre for Health Protection (CHP) in the second quarter of 2023, taking the cumulative total of HIV infections reported locally to 11,830 since 1984.

A spokesman for the CHP said in a recent statement: “Sexual transmission remains the major mode of HIV transmission. Members of the public should use condoms consistently and properly to reduce the risk of acquiring HIV. HIV is the cause of Aids. Early HIV treatment with antiretroviral drugs effectively prevents progression to Aids and other complications.”

In support of World Aids Day on December 1, biopharmaceutical company Gilead Sciences, the Hong Kong Aids Foundation and the Eaton HK hotel in Jordan are showing “United in Memory: Aids Memorial Quilt Exhibition” at the hotel until December 3.

The centrepiece is four locally made quilts from the early days of Hong Kong’s battle against HIV/Aids, as well as a digital display from the archive of America’s National Aids Memorial that includes heartfelt testimonials from Aids patients.

A small curtained-off area near the hotel entrance has a video playing on a loop, sharing information about the city’s 40-year battle with HIV/Aids, the problem of stigmatisation and how to build a more inclusive community for people living with HIV/Aids.

After viewing the video, guests are invited to leave Post-it messages on a wall.

“Love. Respect. Hope,” says one. “Unconditional Love,” reads another. “Remove Stigma For PLHIV,” says one note, referring to people living with HIV.

Visitors to the “United in Memory: Aids Memorial Quilt Exhibition” at the Eaton HK are encouraged to write their thoughts on Post-it stickers on a wall. Photo: Kylie Knott

The words of support are just what Dr Wilson Lam, co-vice chairman of the Hong Kong Aids Foundation, wants to hear more often from the wider community. HIV/Aids, he says, remains one of the most misunderstood and stigmatised conditions.

Hong Kong’s HIV/Aids story – the city’s first HIV infection case was reported in 1984 – is much like the rest of the world’s, he says.

“In the ’80s and ’90s, at the beginning of the epidemic, when there were no treatments, people were frightened and there were a lot of myths about the disease, in particular around transmission,” says Lam, who was recently named as one of the 18 champions of the 2023 Me and My Healthcare Provider organised by Gilead and the International Aids Society.

HIV/Aids remains one of the most misunderstood and stigmatised conditions, says Dr. Wilson Lam, co vice-chairman of the Hong Kong Aids Foundation. Photo: courtesy of the organisers of the “United in Memory: Aids Memorial Quilt Exhibition”

The award honours frontline healthcare workers from Brazil, Hong Kong, Mexico and Taiwan who have made a difference in the lives of people living with HIV by delivering stigma-free HIV prevention, treatment and care services.

“Back then, people were scared of sharing a table with infected patients, or shaking their hands, hugging, kissing … there were a lot of misconceptions around normal social interactions.”

Another common misconception at that time, he says, was that HIV/Aids was strictly related to gay people.

HIV spreads through sexual contact, sharing needles, contact with infected blood, transmission from mother to child during pregnancy, childbirth or breastfeeding. In Hong Kong, about 80 per cent of HIV positive people were infected through sexual contact.

Lam says self-stigma is an issue. Colby agrees. He had a lot of fear.

A still from a video that is part of the Aids exhibition. Photo: Kylie Knott

“I didn’t tell my boss or colleagues that I was HIV positive. I had this kind of self-stigmatisation,” Colby says. “Should I take my pills at work? What if my colleagues or boss asks me what they were for? If I told them it is the treatment for HIV, am I going to get fired?”

Today, Colby works as a freelance social worker. “I work with NGOs on HIV prevention in Hong Kong.”

Ending stigma is key. Living with HIV is less about the medical hurdles and more about societal and cultural ones. He still encounters discrimination, such as during the Covid-19 pandemic while visiting a vaccination clinic.

“The nurse said I was so young and should have protected myself … I didn’t need that lecture.”

Recalling the shock of his initial diagnosis, Colby says he was not mentally stable and fell into self-destructive behaviours.

“I was admitted to hospital for observation and for my own protection,” he says, adding that the hospital staff informed his parents. “They were devastated but also supportive.”

While Colby was initially able to share his diagnosis news with a couple of supportive friends in the LGBTQ community – “they wanted to hug me straight away” – most judgment, he says, came from people within that wider network.

“We emphasise body shape and looking good – on appearing like you’re middle class and well-educated, you have good taste, good fashion.

Quilts from the Aids exhibition at the Eaton HK. Photo: Kylie Knott

“But if you’re infected with HIV, people treat you like a low-class person,” he says, adding he used to disclose his HIV-positive status on a dating app, but received threatening messages from strangers, a few via fake profiles.

Lam says the exhibition is not only a way to remember those who have lost their lives, but also provides a sense of connection for those living with HIV.

“When people living with HIV see these artworks and quilts, they feel connected to other people who share the same condition, or share the same feelings or emotions, so that is very important.”

United in Memory: Aids Memorial Quilt Exhibition, Lobby, Eaton HK, 380 Nathan Road, Jordan. Ends December 3.

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