MANILA — When Jack Wallace went to a hospital in the 1990s to ask for a liver function test, he didn’t expect to experience shame.
“When I went to see a general practitioner, I said I want a liver function test. He said, ‘why?’ And I said, ‘because I have hep C.’ And he just went like that,” said Wallace, leaning back in his seat to mimic the doctor’s surprised reaction.
“It was only a second of a reaction, but it was a reaction. And I felt so ashamed,” he told Devex at the one-day public health forum in Manila, the Philippines, jointly organized by the Asian Pacific Association for the Study of the Liver and the Coalition for the Eradication of Viral Hepatitis in Asia Pacific.
The incident took place over two decades ago, but Wallace, now a medical doctor himself and senior research officer at the Burnet Institute in Australia, said not much has changed in terms of how people perceive hepatitis.
“I think we're still finding ways of talking about it,” he said.
Wallace, whose research has focused on understanding the different individual, social, cultural, health service and policy implications associated with hepatitis B infection, said stigma and discrimination remain huge issues, particularly in the region. It continues to keep people with hepatitis or those at risk of the disease from getting tested and seeking or continuing treatment.
He recalled the 19-year-old student from Tianjin Normal University, in China, who committed suicide in 2015 a few months after discovering she had hepatitis B. Friends and classmates reportedly avoided her upon learning of her condition; and the university asked her to take a break from studying or live alone in the dormitory.
There are also countries where awareness about hepatitis is so low that stigma and discrimination against people with hepatitis are normalized. In Myanmar, for example, Wallace said very little is known about hepatitis stigma.
One of the participants at the forum spoke about how rampant stigmatization is in Myanmar, but people aren’t aware they are already the subject of stigma. For example, in applying for work abroad, some countries require evidence that migrant workers are hepatitis B and C negative before they are given work permits.
Such regulations, however, are only one of the many drivers of stigma against those with hepatitis infection. For example, health care workers can also unintentionally reinforce stigma by disclosing to employers or schools a person’s hepatitis diagnosis, eliminating rules on patient confidentiality.
The few hepatitis warriors
Viral hepatitis kills 1.34 million people globally every year, more than tuberculosis or HIV/AIDS, according to 2015 figures. This includes deaths from cirrhosis and liver cancer due to hepatitis B and C infections.
Despite the huge burden of the disease, there’s very limited funding available to address the problem — which has had a cascading impact on advocacy.
The first call for proposals for the Fund for Elimination of Viral Hepatitis, or EndHep2030, the world's only corpus dedicated to the elimination of viral hepatitis, is expected to take place in April.
Compared to HIV, there's been a limited number of civil society organizations doing activities related to raising awareness and advocating for policy change on hepatitis. In India, most of the civil society advocacy has been in the northeastern states of the country, and among networks of people with HIV co-infection, said Dr. B.B. Rewari, scientist on HIV, STI, and hepatitis at the World Health Organization’s regional office in Southeast Asia.
“But in other countries in the region, there has not been a very strong engagement by civil society organizations unlike with HIV. Even political commitment has not been reflected strongly in most countries. There are no organized networks of infected persons like what we used to have for HIV,” Rewari said.
The reason could be twofold, he said. First, when HIV arrived, it came like a “death sentence,” said Rewari. There was no drug or known cure; young people were dying. So that then led to the international community getting involved, coming together to create the Global Fund to Fight HIV, Tuberculosis and Malaria. In 1996, the Joint United Nations Programme on HIV/AIDS, or UNAIDS, was also created to strengthen advocacy and help organizations build their capacity for a comprehensive and coordinated global action in response to HIV/AIDS.
But the case of hepatitis is different: Since it is a slower disease, advocacy and funding are harder to come by.
Lack of funding
Although a recently setup funding initiative for viral hepatitis is preparing for rollout, the historical lack of mobilization means that “there are people doing this work that are not being funded,” Burnet’s Wallace said. “We're barely scratching the surface of what's needed [in terms of funding].”
Asked how advocacy on hepatitis can be scaled or expanded, Diana Payawal, president of the Asian Pacific Association for the Study of the Liver, said: “I don't know what NGOs would be able to do if there is no money.”