Break the silence
Will hepatitis carriers please stand up? Leaders from the global health community made this request at a recent symposium organised by the Coalition to Eradicate Viral Hepatitis in Asia Pacific (Cevhap) in Taipei.
Patients must drive the campaign for better care because despite its devastating impact, viral hepatitis does not receive the same level of attention and awareness as diseases of a similar social impact, such as HIV/Aids, tuberculosis and malaria, according to World Hepatitis Alliance president Charles Gore. Hepatitis B and C affect one in 12 people worldwide and claim approximately one million lives each year.
While fewer than 0.5 per cent of Hong Kong's adult population has hepatitis C, according to the Health Department, up to 8 per cent has chronic hepatitis B despite various vaccination schemes.
The universal hepatitis B immunisation programme for newborns introduced in Hong Kong in 1988 reduced the chronic infection rate among five-year-old children from about 10 per cent to 0.78 per cent. The circulating pool of hepatitis B virus (HBV) has also 'likely' dissipated in the city, according to a Centre for Health Protection surveillance report published last year, due to the increased vaccination coverage in adults, practise of universal precautions in health care settings, pre-donation blood screening and safe-sex promotion.
Dr Nancy Leung Wai-yee, chair of AsiaHep Hong Kong and a specialist in gastroenterology and hepatology, says about a quarter of those with HBV will develop serious liver conditions such as cirrhosis or cancer. Treatments are getting more effective and affordable, but are still relatively costly, and, hence, few are treated privately. 'Based on our calculations, 80,000 to 100,000 people need treatment,' says Leung. 'Government hospitals are treating only 30,000 to 35,000 people.'
Leung says the Health Department focuses purely on prevention, while the Hospital Authority only looks after those with acute liver failure, cirrhosis or other complications. Despite studies that show it's more cost-effective to treat patients early, Leung says '[the government] doesn't listen because they don't look beyond one year, so that's the frustration we're facing'.
In Hong Kong, there's only one known patient advocacy group - six people that are part of AsiaHep HK, a non-profit organisation set up in 1996 to raise awareness and education of the disease. Anthony Wong Tsz-ching, 30, a member of the group who contracted HBV through birth, says they focus mainly on promoting World Hepatitis Day annually on July 28. Apart from that, six people 'can't do much'.
'Compared with other developed countries such as the US, Canada or Europe, their patient groups are more structured and more people are willing to join the group,' says Wong, a ship terminal supervisor.
Patient advocacy can drive much-needed change in public health policies, says Professor David Thomas, a keynote speaker at last month's 22nd Conference of the Asian Pacific Association for the Study of the Liver held in Taipei.
Chief of infectious diseases at the Johns Hopkins School of Medicine in Baltimore, Maryland, Thomas says surveillance and diagnosis of viral hepatitis remain 'woefully under-resourced', and many countries have yet to realise that the 'broader public health benefits of treatment often outweigh the cost'.
Doctors aren't as effective as patients in advocacy because they're often seen as employees and therefore find it difficult to be taken seriously, Gore adds.
'Aids has shown that those living with the condition must be at the centre of advocacy because they are 'the people' and the government's legitimacy depends on them,' says Gore, who was diagnosed with hepatitis C in 1995 and cirrhosis in 1998. 'Ultimately, you cannot suppress the people if they're determined to change the government.'
Patient group advocacy in fact was a main driving force behind the World Health Assembly's resolution on viral hepatitis in May 2010, which for the first time recognised the full scale of the challenge and put viral hepatitis on the global health agenda alongside Aids, tuberculosis and malaria. Gore says 80 patient groups in Brazil had persuaded their government to lead the push for a resolution; Brazil, co-sponsored by Colombia and Indonesia, did submit the eventually approved proposal to the assembly.
The trouble is, patients and people in general don't like talking about hepatitis. Silence, which has a chicken-and-egg relationship with low awareness - 42 per cent don't know if they're HBV carriers or not, according to a poll of 1,900 citizens last year by the Hong Kong Hep B Free Foundation - means the disease will continue to circulate.
HBV was discovered in 1965. But Aids, which was first recognised in 1981, has achieved much greater success in terms of the global response to prevent and control the disease over the past 30 years.
Why the hush over hepatitis?
Professor Lai Ching-lung, chair of medicine and hepatology at the University of Hong Kong, thinks the main problem is education. He says, for example, many of his patients don't know about their family history, or that hepatitis is infectious rather than hereditary.
The second problem Lai cites is that few celebrities 'dare to stand up' - a reflection of the stigma that patients face. Singer-actor Andy Lau Tak-wah, for example, a HBV carrier since childhood, was a hepatitis ambassador with the Chinese Foundation for Hepatitis Prevention and Control a few years ago. News media hailed his move, but Lau got flak from fans for doing kissing scenes in his films.
'[Hepatitis B] is not really a shameful disease,' says Lai. 'You acquire it through your own family members. It's infectious, but if you transmit it to your sex partner as an adult, they'd only develop acute hepatitis B [lasting fewer than six months], not become chronic carriers, so I think the stigma should not be so bad.'
In mainland China, where there are about 130 million people with HBV, carriers frequently encounter discrimination, say doctors Yang Tian and Wu Mengchao from Eastern Hepatobiliary Surgery Hospital at the Second Military Medical University in Shanghai. Many employers and universities, and some kindergartens, refuse to accept anyone with a positive HBV test. In their commentary, published in The Lancet in September, the doctors say public education is key to eliminating this fear and prejudice that stems from ignorance and misunderstanding about HBV.
It doesn't help that, globally, hepatitis hasn't really been a priority. Gore says that when he first approached the World Health Organisation in 2007, he was 'amazed' to find that none of its 8,000 staff had 'hepatitis' in their job titles. 'They said, 'We have a vaccination for hepatitis B, so we've sort of sorted it.' I said, 'Well, what about the million people who are dying every year? I don't really think that's sorted.''
Strategies for better education, surveillance, prevention, screening and treatment programmes are needed. There is now a team of four - the smallest WHO unit - co-ordinating national strategies on hepatitis to ensure a comprehensive response, says Gore. But hepatitis still does not feature as one of the United Nations' eight Millennium Development Goals, nor in the Global Fund (which benefits Aids, TB and malaria).
Professor Stephen Locarnini, head of the WHO Regional Reference Laboratory for Hepatitis B and Cevhap joint secretary, thinks governments have been so successful with immunisation programmes that they fail to see the greater burden of hepatitis. 'There are messages to take up to the government to reset the awareness standpoint.'
This is where patient advocacy can help. Unfortunately, compared with the often militant Aids activists, Locarnini says 'in hepatitis land, we're so well behaved'.
'With Aids, there was an abundance of vigorous activists whose work was complemented by celebrities who would come out and recognise their condition,' says Thomas. 'That was a perfect storm for public health impact and recognition.'
Hongkongers, says Leung, have the mentality that they're not empowered enough. 'They're so used to being guided. So, if the government and doctors don't take the lead, they feel a little helpless.'
Thomas says the silence that surrounds hepatitis mirrors how the virus operates. When the virus enters a body, it becomes subverted, because the immune system will attack and kill it if it's recognised. Hepatitis B and C are therefore silent diseases; often people don't have symptoms and aren't diagnosed, and because of the length of time from infection to real problems developing, it doesn't seem so urgent. It seems far from the desperation and intensity of Aids.
'[The viruses] have managed to survive by also not drawing attention to themselves at the population level; they're very tricky and clever in that way,' says Thomas. 'Humans need to become just as smart as those viruses so that we can get rid of them.'
Be a hepatitis advocate; e-mail firstname.lastname@example.org
Know your b & C
While there's a vaccine that protects against hepatitis B infection, there's none for hep C.
Both viruses can be contracted though blood-to-blood contact. Hepatitis B is more infectious than C and can also be spread through saliva, semen and vaginal fluid.
Hepatitis B infection can occur through having unprotected sex with an infected person. This is much rarer for C. While unlikely, it's possible to contract hepatitis B - but not C - through kissing.
Neither virus is easily spread through everyday contact. You cannot be infected by shaking hands, coughing or sneezing, or by using the same toilet.
There are different treatments for the two viruses. While treatment can control chronic hepatitis B, it can often cure hepatitis C.
A healthy lifestyle is important. Alcohol, smoking, eating fatty foods, being overweight or extreme dieting may worsen liver disease. Try to avoid alcohol, do not smoke, eat a low-fat diet with enough fruit and vegetables, and lose weight if needed.