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Further information and research
Global context UK context South Asian communities in the UK Common methods of transmission Specific issues relevant to the UK Pakistani population Prevention Treatment References Global context
The World Health Organisation endorses only four awareness days for health conditions – hepatitis is one of them, held annually on 28th July. The other three are TB, malaria, and AIDS. This illustrates the level to which it is of global concern – 500 million people worldwide are infected with hepatitis B or C (or both).[1] The viruses affect the liver – ‘hepar’ means liver in Ancient Greek. Both can be fatal if left untreated, leading to liver cancer and cirrhosis. 57% of liver cirrhosis worldwide and 78% of primary liver cancer is caused by hepatitis B or C.[2] It is known as the ‘silent epidemic’, as both viruses can be asymptomatic for decades, and only present when it can be too late for treatment. Globally, 1.5 million people die annually from hepatitis B or C;[3] this is more than twice the annual death rate from malaria.[4] It is estimated that 1 in 3 people have been exposed to either or both viruses at some point in their lives.[5] Not all people who have been exposed to the virus will contract it; some people will contract and develop an acute infection, which usually lasts a few months, and can be cleared by the body’s immune system or through treatment. Rates differ for hepatitis B and C - about 20% of hepatitis C infections will clear naturally,[6] while for hepatitis B it depends much more on age. Only 5% of children who contract the infection clear naturally, whereas about 95% of adults who contract the infection clear it as the immune system is much more developed.[7] Some people go on to develop chronic infection of hepatitis B or C, where the virus lives in the body and causes damage over a number of years. This can then lead to other life-threatening diseases such as liver cancer and cirrhosis. In Europe, hepatitis B or C affects 1 in 50 people.[8] Low levels of awareness and education are hindering testing and treatment for both viruses, which can be preventable and treatable. This is contributing to a vast global disease burden of hepatitis-associated diseases, which are usually end-stage and chronic, where drain on resources is very high and quality of life for patients is very low. Early diagnosis can combat this. UK context
215,000 people in the UK are thought to be infected with chronic hepatitis C,[9] and 180,000 with chronic hepatitis B.[10] Every pregnant woman in the UK is now screened for hepatitis B. Department of Health and NHS campaigns regarding both hepatitis B and C have focused on the White British population, and the common ways the viruses are contracted within this group – primarily, intravenous drug users, and men who have sex with men. The association with drugs, sex and alcohol means that the illnesses are stigmatised and very rarely talked about in other communities. However, there is variation in common ways to contract the viruses across different groups of people. As both viruses are transmitted through blood-to-blood contact or through bodily fluids, there are various ways they can be contracted. Current resources, government campaigns and levels of practitioner knowledge do not reflect this variation, and therefore alienate and do not necessarily support other groups or communities. South Asian communities in the UK
Surprisingly for the severity and extent of the viruses, very little peer-reviewed research has been conducted on rates of hepatitis B and C amongst specific populations in the UK and worldwide; however, several studies[11] show that in East London, 5% of Pakistan-born people are infected; almost 4% of Somalia-born people are infected, and 2% of people born in Bangladesh are infected. “These data [testing 4998 people of South Asian origin] indicate that nearly one in twenty people born in Pakistan and living in England has chronic viral hepatitis.”[12] There is particular concern for the prevalence of infection amongst minority communities, as rates of testing are quite low, which suggests many are living with infection and are undiagnosed. This then could lead to unintentional transmissions to others, particularly as knowledge levels are so low regarding this, as well as prevention and better management. Common methods of transmission
The most common way to contract hepatitis B amongst the Pakistani community in the UK is through mother to child transmission (MTCT), where the mother already has hepatitis B and passes it to her child while giving birth. For hepatitis C it is through poor medical practices, most often back in the home country, and includes re-use of needles for injections, vaccinations and other blood-related medical procedures such as transfusions. Re-using razors for shaving and haircutting is also a risk factor for transmitting hepatitis C. For the Muslim community, particular care must be taken around the head-shaving ceremony for babies (traditionally undertaken seven days after birth), circumcision, and preparation for Hajj and Umrah in terms of removal of body hair. Some people do experience symptoms of hepatitis B or C, which are similar for both viruses and include a general feeling of being run down, feeling depressed, a yellowing to the skin which indicates jaundice, fatigue, nausea, possibly poor concentration and aches and pains. Many people report a sense of feeling ‘not right’ without being able to pinpoint anything in particular. However, hepatitis B or C are often not accompanied by symptoms of illness. People may have been infected with the virus many years earlier, while receiving medical treatment or a haricut as a child in Pakistan. Specific issues relevant to the UK Pakistani population
Language The Pakistani community refer to hepatitis B as jirkaan (yellow = jaundice) and hepatitis C as kalajirkaan (black jaundice). Jaundice however is a separate illness and can indeed be developed by those who have hepatitis B or C (though not all patients who have jaundice have hepatitis B or C). Lack of GP knowledge with regards to who is at risk of hepatitis B and C There remains a need to increase GP knowledge with regard to the increased risk of hepatitis B and C amongst different groups, and the differences - context - for this. This lack of knowledge is contributing to low levels of testing. From research focus groups and key informant interviews conducted as part of this project, it is clear that patients are being told on a regular basis that they are not at risk of hepatitis B or C, and being refused tests. Years of campaigns focused on intravenous drug has contributed to a narrowing of knowledge with regard to who else may be at risk, and why. Association with drugs, sex and alcohol creates stigma The national campaigns that focus on drugs and unprotected sex have also unwittingly created stigma around both hepatitis B and C, despite the other ways in which it can be transferred. Amongst Muslim communities, the knowledge that does exist links both to extramarital sex, HIV/STIs, injecting drugs, and also drinking alcohol (generally people link liver to alcohol). All are associated with 'bad behaviour' and/or mistakes, meaning the illnesses can be hushed up and not talked about. This contributes to a lack of support for those who have the illness, and massive stigma towards them as people fear catching it. Low knowledge around transmission methods The research groups showed that many people were unsure about how hepatitis B and C are passed on, with some thinking that the viruses could be passed on casually, that is, through e.g. touching, toilet seats, bad polluted air, contaminated food. This is not the case – both hepatitis B and C are transmitted through blood-to-blood contact, and hepatitis B can also be sexually transmitted. ‘Hep C is more serious than hep B’ Hepatitis C is seen as more severe than hepatitis B, or as a more severe form of hepatitis B. They are in fact different illnesses; one is not a more severe form of the other. They both affect the liver and have similar symptoms, but causes and methods of transmission differ. Another misperception is that hepatitis A can develop into hepatitis B, and this can then develop into hepatitis C. Barriers to testing The research groups showed that people often took years to go and be tested, for many reasons – fearing not being able to look after family if they have the illness, not being able to find the time to be tested, too many hoops to jump through, poor communication with doctors or doctors being seen as being dismissive, treatment will make things worse, not wanting to be a social outcast, not wanting to be associated with the illness (occasionally it was seen as potentially damaging to marriage prospects), etc. Urban/rural Main populations at risk tend to be from urban areas, where there are more opportunities for transmission. This in part explains the lower rates of hepatitis B and C amongst the UK Bangladeshi population, as the vast majority originate in the rural region of Sylhet. The Pakistani population on the other hand originate from a broader range of urban areas. Age First generation immigrants, who spent their childhood and early life in their home country before travelling to Britain, may well have at some point been exposed to the virus. British Pakistanis, Somalis and Bangladeshis, if they regularly travel back to their home country or even a one-off trip, could also potentially be at risk. As Census data show that up to 80% of the immigrant population in East London are under the age of 50, and that liver cirrhosis and cancer rarely present in people under 50, it is likely that the next few years will see a dramatic increase in the proportion of people presenting with end-stage liver disease due to chronic viral hepatitis. Prevention
For hepatitis B, there is a vaccine which is approved by the World Health Organisation (WHO). Regular screenings for hepatitis B in the UK take place during antenatal checks, and babies who are at risk receive the vaccine within 24 hours after birth. People can receive the vaccination at any age. As hepatitis B can also be transmitted during sex, using barrier methods of contraception such as condoms should prevent this (particularly if you don’t know if the other person has the virus or not. The only way to know is a test. See Action for patients). Although there is no vaccine for hepatitis C, there are many ways in which transmission can be reduced or stopped.
Treatment
For hepatitis B, less severe cases usually clear the body within a few months, but this depends on the age of the person when the infection was contracted. Infection as a child is more serious than infection as an adult. More severe and chronic cases may involve antiviral medication and other things such as maintaining a good nutritional balance, but there is no specific treatment - it depends on the context of the individual. For hepatitis C, there are a variety of treatments but currently the most common is antiviral medication. Courses of treatment vary depending on the genotype of the virus, severity of the virus (what stage it’s at), the individual, and what their priorities are in terms of dealing with the illness. It is possible to clear hepatitis C for good - be cured of it. Please note: all content on this page focuses on primarily the UK Pakistani community and is based on current available information. Methods of transmission and advice may vary for other groups. References
[1] WHO Europe website, Hepatitis Data & Statistics http://www.euro.who.int/en/health-topics/communicable-diseases/hepatitis/data-and-statistics [2] World Health Organisation (2013) Global policy report on the prevention and control of viral hepatitis p ii http://apps.who.int/iris/bitstream/10665/85397/1/9789241564632_eng.pdf?ua=1 [3] WHO Europe website, Hepatitis Data & Statistics http://www.euro.who.int/en/health-topics/communicable-diseases/hepatitis/data-and-statistics [4] World Health Organisation (2013) Global policy report on the prevention and control of viral hepatitis p1 http://apps.who.int/iris/bitstream/10665/85397/1/9789241564632_eng.pdf?ua=1 [5] WHO Europe website, Hepatitis Data & Statistics http://www.euro.who.int/en/health-topics/communicable-diseases/hepatitis/data-and-statistics [6] Widely recognised statistics on disease progression, see e.g. http://www.hepatitisaustralia.com/disease-course-of-hep-b [7] see e.g. J Grebely et al (2014) 'The effects of female sex, viral genotype...' Hepatology 59:1 p109 http://onlinelibrary.wiley.com/store/10.1002/hep.26639/asset/hep26639.pdf?v=1&t=i5tscrak&s=015ebb22fadc94addb22003503a7372bca2f01f2 [8] WHO Europe website, Hepatitis Data & Statistics http://www.euro.who.int/en/health-topics/communicable-diseases/hepatitis/data-and-statistics [9] Public Health England (2013) Hepatitis C in the UK: 2013 Report p8 http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317139502302 [10] Health Protection Agency (2006) Migrant Health: A Baseline Report, Chapter 4: Hepatitis B p62 http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1202115606638 [11] see e.g. G Uddin et al (2009) ‘Prevalence of chronic viral hepatitis in people of south Asian ethnicity living in England…’ Journal of Viral Hepatitis [12] G Uddin et al (2009) ‘Prevalence of chronic viral hepatitis in people of south Asian ethnicity living in England…’ Journal of Viral Hepatitis, p3 |
For patients and practitioners
Short films in English and Urdu combine medical and cultural guidance to understand, prevent and get tested for hepatitis B & C
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