Research shows doctors are failing to diagnose more than 50% of patients with hepatitis C virus (HCV)

13 Apr 2016 Bridie Taylor

London, 13 April 2016 – Survey results show people living with HCV in the UK, the Netherlands and Belarus are less likely to be diagnosed than their global counterparts, increasing the possibility of liver disease, cirrhosis and liver cancer.

Findings from HCV Quest, a global patient survey with 4,000 respondents from across the world, showed that half of people diagnosed with HCV reported that their doctors had initially failed to recognise symptoms and less than 46% were referred for a test.

Viral hepatitis is an inflammation of the liver caused by a virus. HCV is one of the most prevalent of the hepatitis viruses, killing more than 700,000 people every year. HCV represents a growing health crisis for countries across the globe, where estimates suggest there are approximately 130 – 150 million people currently living with the disease. A significant number of those affected will go on to develop cirrhosis or inoperable liver cancer if left untreated.

The survey results also showed that 7 out of 10 respondents didn’t even know what hepatitis C was before they were tested. People in Brazil were the least aware with only 13% knowing about hepatitis C compared to Pakistan, where half knew and Italy, where two thirds of respondents said they knew, the only country where awareness was relatively high.

“The HCV Quest global patient survey aims to capture the realities of hepatitis C - from diagnosis to treatment - directly from those currently living with the disease.” commented Raquel Peck, CEO of the World Hepatitis Alliance. “The results have been striking, suggesting not only that a significant proportion of people were not aware of hepatitis C until diagnosed, but that doctors are also failing to diagnose it. This is a crisis that must be urgently addressed”.

Today, healthcare professionals, academics and civil society groups from across the world are meeting at The International Liver CongressTM in Barcelona, to discuss new clinical advancements and public health approaches. These results show that a greater emphasis needs to be put on creating awareness amongst patients and healthcare professionals as early intervention is key to reducing the global burden.

Key findings from the survey include:

  • Less than 1 in 5 people in Netherlands (10%), UK (16%), Belarus (16%), and Israel (17%) were offered a test after describing symptoms of hepatitis C to their physician compared to more than 1 in 2 people in China (69%), Malaysia (66%), Egypt (64%) and Romania (54%).
  • Brazil, Argentina and Poland were the least aware of hepatitis C before their diagnosis. Italy, Canada and Greece were the most aware of hepatitis C before their diagnosis.
  • Nearly 1 in 4 people have suffered discrimination in work or in education or their prospects have been affected
  • 1 in 5 respondents hadn’t told anybody about their condition. In China, 75% of respondents hadn’t told anybody.

“There is a huge difference in the management of hepatitis C across the world. What the HCV Quest report shows is that a holistic approach is needed. Comprehensive national plans which scale up awareness, prevention and diagnosis and can tackle stigma and discrimination are essential to hit the global target of eliminating hepatitis C by 2030”, said Charles Gore, President of the World Hepatitis Alliance.

The HCV Quest global patient survey was undertaken by the World Hepatitis Alliance (WHA), with support from the European Association for the Study of the Liver (EASL), with the aim of gathering insights from people living with HCV in order to drive meaningful improvements in its diagnosis and management. To help elevate these findings, WHA has produced a HCV Quest Toolkit which includes the global report, 22 national reports, in both English and the national language, and complementary materials, including infographics, fact sheets, user guides etc.

Notes to Editors

About the HCV Quest Global Patient Survey

The HCV Quest global patient survey is a global patient survey, investigating the impact of HCV on patients’ personal and social lives, as well as education and work, while also examining patients’ experience of care. It was conducted over six months between July and December 2014, translated into 35 different languages and has been made available online and in hard copy to patient groups and physicians around the world. Almost 4,000 people from 73 countries were surveyed on how living with HCV impacts all aspects of their life, how much they knew before they were diagnosed and their experience of diagnosis, care and treatment. The responses were translated and analysed, and the findings were developed into a global and 22 local country reports. HCV Quest was sponsored by AbbVie in support of WHA. All content has been developed and approved by the WHA.

About Viral Hepatitis

Viral hepatitis is inflammation of the liver caused by a virus, and globally kills more than 1.4 million people every year. There are five different hepatitis viruses - hepatitis A, B, C, D and E. Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This can result in inflammation and significant damage to the liver and it can also affect the liver’s ability to perform its essential functions. Although it has always been regarded as a liver disease - ‘hepatitis’ means ‘inflammation of the liver’ - recent research has shown that the hepatitis C virus affects a number of other areas of the body. These can include the digestive system, the lymphatic system, the immune system and the brain.

The World Hepatitis Alliance

The World Hepatitis Alliance (WHA) is a patient-led and patient driven non-governmental organisation (NGO). With over 230 member patient groups from 81 countries, WHA provides global leadership to drive action to help eliminate viral hepatitis as a public health threat by 2030. Their aim is to work with governments, members and other key partners to support and elevate patient voices, to raise the profile of viral hepatitis and to help establish comprehensive hepatitis strategies which have robust prevention measures and access to affordable diagnostics and treatment.

The European Association for the Study of the Liver

The European Association for the Study of the Liver (EASL) is a major European association with international influence dedicated to the liver and liver disease. It has given rise to many international clinical trials and research collaborations to the benefit of patients all over the world.

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Media Contacts

Tara Farrell

World Hepatitis Alliance Communications Manager