Majority of Europeans with hepatitis C remain undiagnosed

A report by the Eurasian Harm Reduction Network (EHRN highlights the significant inconsistencies that exist in hepatitis C (HCV) diagnosis and treatment across Europe and beyond. In recognition of World Hepatitis Awareness Day, patient groups around the globe are united in their call for action.

The report indicates that in some European countries it is estimated that more than 90% of people who are infected with HCV have not been diagnosed (Germany 90%; Poland 98%). Not only does this put many people at risk of long-term liver damage, it also means that they may unknowingly transmit the virus to others.

"It is alarming that in the twenty-first century there are European countries where up to 98% of people with chronic hepatitis C may not even know they are infected", says Nadine Piorkowsky, President, European Liver Patients Association (ELPA). "The peak of hepatitis C related mortality is still to come. If we want to flatten it, policymakers in Europe will have to act now. We are therefore calling on the EU and national governments to urgently recognise hepatitis C as a major public health threat."

Stephen Hughes, Member of European Parliament, agrees: "The European Union has a crucial role in identifying best practice with regard to hepatitis C screening in order to address existing health inequalities."

Hepatitis C and, specifically, the under-diagnosis of HCV infection are not unique to Europe; rather, HCV is a global health issue and the rates of diagnosis are a problem around the world. In fact, HCV is much more common than HIV, the virus that causes AIDS, with more than four times as many people living with hepatitis C than with HIV. According to the World Health Organization (WHO), an estimated 53,700 deaths globally each year are directly attributable to HCV. The WHO also reports that more than 308,000 deaths annually are likely to be due to liver cancer caused by HCV and associated with a significant proportion of the 785,000 deaths due to cirrhosis. This suggests that, globally, HCV may cause up to 500,000 deaths a year, and possibly even more. With many undiagnosed cases of HCV, it is likely these numbers will rise in the near future.

"The EHRN report on HCV prevalence in Europe highlights the need for more in-depth studies in order to increase awareness and ensure an evidence-based approach to this disease", says Jeffrey Lazarus, World Health Organization Regional Office for Europe.

The report shows that the availability and quality of national, regional and global HCV reporting, resourcing and screening varies dramatically from country to country. For example, even the official data from the United Kingdom illustrates that almost two-thirds of estimated HCV cases are undiagnosed (88,337 diagnosed, 192,663 undiagnosed), which, sadly, is a significantly better rate of diagnosis to undiagnosis than most countries. In contrast, in Poland the estimated number of cases in the general population is 750,000, while only 20,000, or 2%, of cases have been diagnosed.

Ms Piorkowsky recognises the importance of awareness campaigns: "Today, on World Hepatitis Awareness Day, we draw attention to the ongoing needs in the hepatitis C battle globally, and call on people who may be at risk to get tested!"

France is a clear example of the positive impact public awareness campaigns can have. Due to government-led campaigns, hepatitis awareness in that country has increased substantially. Currently, an estimated 56% of those infected know that they have the infection, compared with 24% in 1994. In contrast, the EHRN report indicates that in northern Spain, only 16% of people who tested positive for HCV were aware of their status.

Globally, 180 million people are infected with hepatitis C; many others are infected and do not know it. Could you be one of them? Get tested.

Risk Factors for Hepatitis C

• Have tattoos or body piercings
  
• Had a blood transfusion before screening was introduced (in most countries, before 1992)
  
• Shared equipment for injecting drugs or cocaine straws/bank notes
  
• Had medical or dental interventions in countries where equipment is not adequately sterilised
  
• Had needle stick injuries (especially emergency services and healthcare workers)
  
• Shared a toothbrush or a razor (very low to medium risk)
  

About World Hepatitis Awareness Day

Now in its fourth year, World Hepatitis Awareness Day, which takes place on 1 October 2007, aims to increase awareness about hepatitis B and C. This year, ELPA and other international patient organisations are working together to promote this important educational initiative and encourage those at risk to "Get Tested'". Alarmingly, many people are unaware that they are infected and remain undiagnosed. Left untreated, both forms of viral hepatitis can lead to cirrhosis, liver cancer and liver transplantation, yet hepatitis B can be prevented through immunisation and, in many cases, hepatitis C can be cured. The EHRN report on prevalence of hepatitis C in Europe illustrates the situation of undiagnosed cases (available at http://www.hepatitisday.info). ELPA has been supported by unrestricted grants from Bristol-Myers Squibb, F. Hoffmann-La Roche Ltd, Gilead, Novartis and Schering-Plough.

About the European Liver Patients Association (ELPA)

ELPA emerged from a desire amongst European liver patient groups to share their experiences of the very different approaches to liver disease adopted in different countries. In June 2004, 13 patient groups from 10 European and Mediterranean countries created the association. ELPA was formally launched in Paris on 14 April 2005, during the annual conference of the European Association for the Study of the Liver (EASL) and now has 20 members from 17 countries. ELPA's aims are to promote the interests of people with liver disease and, in particular, to highlight the size of the problem. This involves promoting awareness and prevention, addressing the low profile of liver disease compared with other areas of medicine such as heart disease, sharing experience from successful initiatives and working with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards.