Destigmatizing hepatitis B
Around the world, people with the disease are marginalized. Now, patients are finding a voice to push back and demand an end to discrimination and isolation.
Claire Ainsworth
Looking across the factory canteen, Dee Lee knew things had to change. Set aside from the rest of the room was a table where colleagues infected with hepatitis B were forced to sit. Misconceptions that the virus could be transmitted through casual contact, such as sharing food or utensils, meant that these workers were heavily stigmatized. Segregation was just one penalty. Another was being summarily sacked, a task that fell to Lee as public-relations manager for the factory, one of the largest in China.
But Lee had a secret: he, too, had hepatitis B, contracted from a contaminated needle when he was just a toddler. To pass the medical examination for his job, he had persuaded a friend to stand in for the blood tests. The dishonesty soon became unbearable. “I felt absolutely tormented,” he says. Ultimately, Lee’s conscience won out over the lure of his well-paid career, and he resigned.
Part of Nature Outlook: Hepatitis B
Fifteen years on, Lee’s situation remains far from unusual. And it’s not unique to China. Across the world, the stigma against hepatitis B infection blights millions of lives. People lose educational opportunities, jobs, their families and even their lives. Overwhelmed by anxiety and loneliness, some die by suicide1. Others avoid seeking treatment until it is too late. For too many people, living with hepatitis B means dying from shame.
Hepatitis B stigma — a mark that singles people out as different or lesser — is fuelled by a combination of ignorance about the virus and misunderstandings about how it spreads. Affected individuals not only are shunned by society, but also condemn themselves. Even well-educated people fear telling anyone they have it, and this prevents them from accessing care. “It’s completely unnecessary,” says Su Wang, a former president of the World Hepatitis Alliance (WHA) and medical director of viral-hepatitis programmes and the Center for Asian Health at the Cooperman Barnabas Health Center in Livingston, New Jersey, who herself has hepatitis B. The virus cannot spread through casual contact, such as shaking hands (see ‘Three myths’). There’s an affordable vaccine that cuts transmission — including the main route in many parts of the world, from mother to child — and there are generic antiviral drugs that suppress the virus2, which prevents someone from infecting others, she says. Yet stigma is one of the key factors stopping people coming forwards for testing or treatment. A mere 10% of infections are estimated to have been diagnosed3.作者: StephenW 时间: 2022-3-31 12:44