Published: 01/07/2004, Volume II3, No. 5912 Page 28 29

Unknown to them, thousands in the UK have a highly infectious virus.They may die of it, while the DoH delays action. Ann Dix investigates the hepatitis C scandal

Take a potentially fatal blood-borne virus, up to 10 times more prevalent than HIV.Many people can be cured using the latest antiviral drugs, but as many as 90 per cent of sufferers do not know they are infected. Untreated, it can cause cirrhosis, cancer and liver failure, placing a heavy burden on health services.

The condition is hepatitis C. But primary care trusts can be forgiven for not having it on their priority list.

Although the Department of Health published a draft strategy for hepatitis C two years ago, an action plan for implementation didn't materialise. The DoH now says it will be published this week. A long-awaited public awareness campaign to encourage those at risk of infection to come forward is expected in autumn.

'It has taken much longer than we expected, ' admits DoH hepatitis advisory group and hepatitis C strategy steering group chair Professor Howard Thomas.He says there was a need to raise awareness of the disease among primary care professionals and to ensure that services could respond before encouraging those at risk among the general population to come forward for testing.

He claims a series of DoH regional roadshows have raised awareness of the disease in primary care, although he admits 'there is much more to be done'. The parallel development of a national plan for hepatology services by the liver community shows how liver services should be organised and will soon be circulated to PCTs ('Can of worms', pages 28-29, 4 March). A national service framework in all but name, this will provide 'a shopping list for PCTs'.

Add to this the first steps in setting up a nationwide system of managed clinical networks for hepatology: a pan-regional commissioning network was set up by the five sectors of London at the start of this year.

'We have the beginnings of a structure to deal with patients in the hospital, ' Professor Thomas says.

The DoH will also release guidance for the NHS on hepatitis testing, including groups at risk of infection to whom testing should be offered, pre and post-test discussion and arrangements for referral.

Currently, the greatest risk of infection is through sharing injecting equipment. But Professor Thomas warns that people do not necessarily have to be drug addicts to contract the disease. 'Many of those infected will be people in influential positions who dabbled with drugs years ago while at college, ' he alleges.

But if more people come forward for testing, are not services in danger of being swamped? It is a scenario the DoH is keen to play down. 'It is likely that these new diagnoses will occur gradually, rather than in the shorter term, given that some of those at risk may still be reluctant to admit previous risk behaviours, ' says a DoH spokesperson.

'One advantage of the local formation of clinical networks is that patients with more severe problems should have easier access to the wider range of clinical services (and expertise) necessary for their care. If activity increases significantly in certain areas, it will be for local decision makers to decide how service provision and quality should be improved.'

But as observers point out, the rate of uptake will depend on the public awareness campaign.Hepatitis C Trust chief executive Charles Gore fears that 'the DoH's understandable desire to prevent an avalanche of unnecessarily concerned people running for testing' might result in 'too soft an approach'.

'Getting people at risk to come forward will be much harder than the DoH thinks, ' he argues.He also questions whether the money for the campaign, 'a fraction of what was spent on publicising HIV', will be enough.

'If you do not create the demand, you do not create the services. It is numbers that will move [hepatitis C] up PCTs' priority lists.'

Failure to act now will, in the long term, increase the number of people presenting with chronic hepatitis requiring 'hugely expensive interventions', Mr Gore adds.

He stresses the need for central funding to improve surveillance, which at the moment is 'very poor'. 'For an infectious disease with very large numbers, [data collection] needs to be organised and funded centrally.'

Professor Thomas also emphasises the need for central funding for data collection and setting up the managed clinical networks. The National Institute for Clinical Excellence recently recommended combination therapy with peginterferon alfa and ribavirin as the gold standard treatment for chronic hepatitis C.

'I feel quite strongly that the Healthcare Commission should audit implementation of the NICE guidelines, ' he says. 'PCTs have a lot of competing priorities and people with hepatitis C are a disadvantaged and not particularly vocal group.We need national audit to make sure they have a fair crack of the whip'.

For a modest investment, he says, managed clinical networks could provide a data collection system similar to that used for cardiac and cardiovascular surgery which could be used to monitor activity and outcomes and feed into the audit process.

The steering group had estimated the need for an overall investment of£20m for 'setting up the networks and getting the management structure in place'.

This was based on the assumption that the 10 existing hepatology centres would be expanded to 20, including the five London centres. The cost of around£1m per centre would include the cost of antiviral therapy for three years, based on the estimate that only 10 per cent of patients would need or want treatment: 'Once this is set up then you might rely on PCTs to fund them, but this is only acceptable if there is an audit system in place, ' adds Professor Thomas.

'It needs to have administrative teeth, or it will be nothing more than a wish list.'

St Mary's Hospital, London, consultant hepatologist and British Association for the Study of the Liver secretary Mark Thursz believes lack of awareness among GPs is still a major problem. 'Regional conferences hardly constitute an educational programme.'

Even patients with abnormal liver function are often not being tested, he says.He also points to the fact that hepatology is bottom of the list when it comes to specialist commissioning.

'Hepatology is dumped in the general medicine budget which means there is virtually no funding, ' he adds. 'A potential solution could be the development of national tariffs for hepatology and other specialist services'.

This could come on stream in 2005 and would allow 'trusts to identify how much income was generated from liver services and budget accordingly'.

But while improvements are on the horizon, Charles Gore is frustrated by the slow rate of progress. 'Hepatitis C is a major public health problem, ' he says. 'There are people out there unknowingly wandering round with the virus who will die due to this delay.'

To contribute articles to HSJ's clinical management section, please e-mail ann. dix@emap. com

Key points

Hepatitis C is officially recognised as a major public health problem, but DoH delays in tackling the problem mean it has not been on PCTs'priority lists.

A public awareness campaign due to be launched by the DoH is set to change this by encouraging people to come forward for testing.

Services will need to invest in IT for improved surveillance and respond to the patient influx this may create.