Part one of a three-part series in which Henry Grahame-Smith looks at hepatitis C in the UK today
 Illustration: John Clarkson |
Separate strategies for dealing with hepatitis C have been issued by the English and Scottish Health Departments. But the problem is - they don't know how big the problem is. We need an idea of how many people have hepatitis C, or are vulnerable to it, and what their needs are before we can work out how to help them.
The World Health Organisation has estimated that there are more than 170 million people worldwide infected with hepatitis C - four times as many as HIV. The surveillance studies, to accurately evaluate how many people in the UK have hepatitis C, have not yet been done. Estimates range from 200,000 to 400,000, with the majority of people not knowing they have it.
Only 20 per cent of people with hepatitis C clear it from their system. The other 80 per cent go on to develop chronic infection with hepatitis C. It usually takes at least 20 years for serious medical problems to develop. But co-infection with HIV can considerably shorten this period.
Hepatitis
C could become, in the next few years, a major strain on health service resources.
Last year, the Department of Health and the Health Education Board for Scotland
published separate national strategies to tackle the problem. Current evidence
suggests that in the UK hepatitis C is mainly spread by sharing drug injection
equipment. Around 90 per cent of people with hepatitis C acquired the virus through
current or previous injecting drug use.
These
statistics have led the authors of Great Britain's National Strategies to prioritise
the needs of intravenous drug users (IDUs). England's strategy examines ways of
improving prevention and services for people with hepatitis C, whereas Scotland's
strategy currently focuses primarily on prevention.
The prevention approach towards IDUs is multi-faceted. It builds upon harm minimisation methods that have been used in the past:
Both the Scottish and the English strategies emphasise the need to address intravenous drug use in the prison population. Methods recommended include:
These cleansing tablets have already been successfully provided within Scottish prisons for several years. An English project aims to make them generally available in all prisons by 31 March 2004.
The
English and Scottish Hepatitis C Strategies are to be praised for going as far
as they do in addressing the needs of IDUs within the prison system. However,
there are inherent difficulties in providing the services they recommend. These
are guidelines, not rules; and like most they are open to local interpretation.
Implementation will vary according to each institution's in-house culture.
For instance, in one prison you may be able to get hold of cleansing tablets without recourse, but in another prison you may be targeted for mandatory drug testing. This sort of variability can cause the individual to feel very unsafe and can lead to poor access of services.
There is also a basic lack of knowledge about how long the hepatitis C virus survives in different items of injecting equipment and what methods of sterilisation work. The English Strategy states that research should be undertaken to clarify the issue. However, it would be unfortunate if this were used as an excuse not to provide interventions, such as cleansing tablets, as this recognises that injecting drug use does occur in prisons.
Both
national strategies raise the issue of the need for a public awareness campaign
on hepatitis C. The Scottish strategy already recommends that this should be done
for the general public and should also address the information needs of decision
makers, policy makers and politicians.
The English strategy, on the other hand, asks whether a public awareness campaign is actually necessary. Though the consultation process came to an end in November 2002, it has yet to answer this question - and others raised in the document.
I find the lack of public awareness alarming, and the English strategy's questioning of it surprising, considering that we may be looking at 10 times as many people with hepatitis C in the UK as people with HIV.
The role the media can play in any public awareness campaign should not be underestimated. In the early days of HIV many people learnt about it from celebrity cases such as Rock Hudson and, later, Freddy Mercury. About the only thing that many people currently know about hepatitis C is that Pamela Anderson has it.
We learned from the approach taken toward HIV in the late 1980s that public awareness campaigns, while raising general understanding, can lead those affected to experience prejudice and fear. The campaign needs to be structured carefully to take this into account. It should not rely on ill-informed mass media to give out the information about hepatitis C.
A major part of the Hepatitis C Strategy for England addresses the need to improve services for people with hepatitis C. Key messages highlighted in the strategy include:
The development of managed clinical networks is of major importance for people who have health or social needs above and beyond those raised by hepatitis C.
For instance, people with both hepatitis C and HIV would benefit from the development of a range of co-ordinated services to reduce the impact each disease has on the other, and the confusion that can arise from being treated by more than one specialist. This is a major source of confusion and complaint amongst co-infected people. These services could include:
The National Strategy also emphasises that GPs, who are already involved in the management of health services for IDUs, could have considerable impact on their client group by helping to improve hospital attendance and adherence to treatment plans.
All of these improvements in service provision and the future development of prevention campaigns have major resource implications at a local level.
But
until the research to identify incidence and prevalence of hepatitis C in the
UK has been done, local commissioners and planners will be working partially in
the dark. They will have to plan on the basis of best-case and worst-case scenarios.
Guidelines may not adequately influence commissioners, because of conflicting priorities, until performance targets are clearly defined. How can we set out best practice until we know what practice works best?
We need to find out how best to prevent initial hepatitis C infection and treat it to reduce chronic infection. We need to reduce the prevalence of undiagnosed infection. I trust these targets will be outlined in subsequent documents, but this will obviously be difficult to do until the current prevalence levels are accurately known.
National strategies are generated on the basis of evidence that is currently recognised by the medical profession. Since this is such a new area of research there are still questions that remain unclear, such as the incidence and prevalence of hepatitis C in the UK. This has led many people to call this the "silent epidemic".
Above
all, we need a flexible strategy that remains open to the possibility of changing
evidence, until a better understanding of hepatitis C and the groups that it affects
in the UK is determined.
One last and crucial question is this: the evidence that supports and quantifies the risk of sexual transmission seems to be changing to indicate that it is greater than was initially thought. Are we seeing an infection that was originally considered to be spread almost exclusively by blood-to-blood contact break through to become another sexually transmitted infection? Or has a percentage of hepatitis C always been spread sexually? Ether way, we need the answers and we may then need to meet a different set of prevention and treatment needs, directed at a different group of people. We will not meet these needs if we are hamstrung by an inflexible, 'blood-borne virus' strategy.
Next month I will try to unravel the evidence surrounding the routes of transmission of hepatitis C and what it could mean to you and the community.
