“Because of the long wait and the stigma, many people give up and drop out early along the treatment pathway” Caroline Thomas, Persaudaraan Korban Napza Indonesia

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[AMSTERDAM] Providing cheap drugs against the hepatitis C virus (HCV) has had limited success in fighting the disease in South-East Asia where poor health services and stigma surrounding the infection are significant barriers, says a new survey.The survey , released to coincide with World Hepatitis Day on 28 July, showed that those at greatest risk from HCV, including injecting drug users (IDUs) and people living with HIV/AIDS , are least likely to access treatment despite availability of cheap drugs across much of the region over the past seven years. In Malaysia, for example, the cost of effective treatment has come down from US$12,000 to US$300.HCV, which leads to liver failure, is associated with HIV/AIDS. Both are blood-borne viral diseases similarly transmitted via blood transfusions, needle sharing among IDUs and unsafe sex. Many HCV patients are co-infected with HIV, adding to complications responsible for 350,000—500,000 deaths globally each year.The survey, compiled by Coalition+ , a group of community activists supporting people diagnosed with HCV, identified several barriers to care, including lack of treatment centres and low awareness among healthcare professionals and the general population.“Despite numerous policies and programmes, access to treatment remains an obstacle,” says Maria Donatelli, senior hepatitis advocacy manager at Coalition+.Donatelli says diagnosis can take up to 10 days, a length of time many people cannot afford to stay away from work. “Technically, the diagnosis is free, but there are hidden costs. What policymakers do not understand is that it’s not people’s job to be sick,” she says.Coalition+ interviewed 51 health professionals specialising in HCV and 240 at-risk individuals in India, Indonesia, Malaysia, Morocco and Thailand. They found that people in India and Thailand were most worried about treatment costs while patients in Indonesia, Malaysia and Morocco were concerned about time away from work. Thai respondents feared that the cost of travel and extra family care would leave them out-of-pocket.HCV may go undetected for decades, resulting in people avoiding treatment for what they see as a minor health problem. Some 55 – 85 per cent of patients develop chronic HCV infection, with roughly a third of them developing fatal liver cirrhosis.According to WHO’s 2017 Global Hepatitis Report , South-East Asia accounts for around 10 per cent of 71 million people living with HCV, but barely one per cent is aware that they have the disease. An even smaller number has started treatment thanks to poor facilities and experts. For example, Indonesia’s 250 million citizens can count on just 130 hepatitis doctors. Stigma, the other big problem identified by the report, is exacerbated by a lack of knowledge about the disease among healthcare professionals, the report says.“Many patients are told not to hug their children and to keep their clothes separate because they think HCV can be transferred through sweat,” says Caroline Thomas, a public health specialist at Persaudaraan Korban Napza Indonesia , an advocacy group.Thomas tells SciDev.Net that patients may avoid treatment fearing association with HIV. “Because of the long wait and the stigma, many people give up and drop out early along the treatment pathway,” she says.The UN has a goal to eradicate HCV by 2030. The survey report suggests that hepatitis treatment be integrated with other healthcare to reduce stigma. It also asks governments to do more to educate doctors and the public about the disease while bringing health services closer to patients, especially in poorer, rural settings.Thomas’s husband was diagnosed with chronic HCV in 2011. The couple also live with HIV, but because they were able to access treatment, their two children were born free of either virus. “We want more people to access treatment so their children can be healthy too.”This piece was produced by SciDev.Net’s Asia & Pacific desk.