The stigma over Aids is the biggest obstacle in diagnosing and treating patients in Asia, but Hong Kong is among a regional group that’s stepping up efforts to combat the disease
HIV/AIDS was presented in positive fashion in Hong Kong last week, thanks to celebrities such as Victoria Beckham, Gwyneth Paltrow and Michelle Yeoh, in town to attend a fundraising gala dinner by amfAR, the Foundation for Aids Research.
But on the whole, the disease is still a taboo subject in Hong Kong and the region. The stigma attached to it is still the biggest obstacle in diagnosing and treating patients, and preventing the disease from spreading.
Misconceptions about HIV/Aids and discrimination against its patients are among reasons why people are reluctant to be tested for the disease, says Dr Patrick Li Chung-ki, honorary consultant in Queen Elizabeth Hospital’s department of medicine and vice-chairman of the Hong Kong Aids Foundation.
“One of the things that the Health Department has noticed is that at least half [of Hong Kong Aids patients] have a rather advanced stage of immune system impairment by the time they’re diagnosed; they’ve already progressed to full-blown Aids or their CD4 count [a measure of a type of white blood cell that fights infection] is already very low,” says Li.
“So based on this, my guess is that [testing] probably captures only half of those who are actually infected with HIV.”
Although the numbers of people infected with the human immunodeficiency virus and deaths from Aids-related illnesses have declined worldwide, they continue to rise in many parts of Asia.
In Hong Kong, there’s been an increasing trend since the first HIV case was detected here three decades ago. Last year saw a record 651 new cases reported, bringing the total to 6,993 HIV-infected patients since 1984 (as of the end of last year), with 1,545 developing into Aids.
On the mainland, about 815,000 people were living with HIV/Aids in 2013, according to UNAids, the Joint United Nations Programme on HIV/Aids. Mainland health officials reported 104,000 new HIV/Aids infections in China in 2014 – a 14.8 per cent increase from 2013 – according to a Xinhua report citing Wang Guoqiang, deputy director of the official National Health and Family Planning Commission.
One reason for the increase in new cases could be simply that more people are being tested, says Li, but still more efforts need to be made in promoting it.
This can be done by creating not only more opportunities for people to be tested, but also an environment to reduce any stigma or discrimination that patients may face.
Scaling up clinical care for patients, Li says, is also important. That was one of the main motivations for the launch of Treat Asia (Therapeutics Research, Education and Aids Training in Asia), a collaborative network of clinics, hospitals, research institutions and civil society, in 2001.
Treat Asia works to ensure the safe and effective delivery of HIV treatments to adults and children across the Asia-Pacific region through research, education, and advocacy of evidence-based HIV-related policies. The network comprises 21 adult and 18 paediatric clinics and orphan support programmes in 12 countries, including in the Queen Elizabeth Hospital.
“AmfAR has been very active in Asia for more than 20 years and our Treat Asia programme has become a model of regional collaboration on HIV/Aids since its founding 15 years ago,” says amfAR CEO Kevin Robert Frost.
In 2001, little attention was being paid to the looming Aids crisis in the region. Li, who led the hospital’s involvement in Treat Asia until his retirement in 2013, says most countries focused on prevention programmes, not patient care.
Treat Asia has come a long way since then. In 2003, it set up the HIV/Aids Observational Database (TAHOD), which is still the only regional cohort studying long-term HIV treatment outcomes, says Li.
“We capture all the information over time in a very systematic manner, and we’re able to identify different aspects of care, side effects, efficacy of treatment, what sort of monitoring would be related to better treatment outcomes, and so on,” he says.
This year, Treat Asia will expand the database to collect and analyse non-Aids complications affecting HIV patients, including non-communicable diseases (NCD) such as chronic kidney disease, diabetes and heart disease. Hong Kong will be one of the sites participating in a sub-working group on HIV/NCD and ageing led by Dr Lee Man-po, Li’s successor, at Queen Elizabeth Hospital. Lee is also the co-chairman of TAHOD.
Another key achievement of Treat Asia, Li says, is its project, which evaluates HIV drug resistance within Treat Asia clinical centres to build capacity for testing and surveillance of resistance.
Anti-retroviral drugs have extended millions of lives around the world, but the long-term success of HIV treatment in Asia depends on controlling the development of resistance to the limited arsenal of affordable HIV medicines.
A third achievement is to deliver information for patients in many languages and dialects, and in non-verbal form for those who are illiterate.
“The information helps patients receiving treatment to understand the rationale for treatment, importance for adherence to treatment so that they will develop resistance, learn how to manage possible side effects, and so on,” Li says.
Other Treat Asia initiatives include setting up a separate site for child patients, and bringing patient representatives into the network for direct interaction and dialogue with medical workers.
“It’s very meaningful in terms of patient involvement and empowerment,” says Li.
This year, Treat Asia will also launch a series of activities targeting adolescents living with HIV, as they now represent the only group of patients with an increasing rate of mortality. HIV has become the second-leading cause of death in that segment of the population worldwide.
The more than US$4 million raised at the gala dinner will go towards Aids research, says Frost, although he did not state exactly how much Treat Asia will receive directly.
“A cure for Aids would directly benefit all people living with HIV, including those living right here in Hong Kong,” Frost says. “And amfAR is committed to finding a cure by the end of 2020. Events like the one in Hong Kong bring us one step closer to that cure.”
This article appeared in the South China Morning Post print edition as Test of courage.