In May 2010, World Hepatitis Day was made an official World Health Organisation day, one of only seven.
This was an acknowledgement that viral hepatitis, the disease caused by the hepatitis viruses A, B, C, D and E, had been almost completely neglected, despite its immense burden, says Charles Gore, founder and CEO of the Hepatitis C Trust and president of the World Hepatits Alliance.
Now is the time to act
One in every third person worldwide has been exposed to one of these potentially fatal viruses. There are 500 million people living with chronic hepatitis B or C, and viral hepatitis kills 1.5 million people each year — the same number as HIV/AIDS. Almost every country has a comprehensive HIV prevention and control programme; almost none have such a programme for viral hepatitis.
The need for an action plan
Each of the four countries of the UK has a programme either for viral hepatitis or just hepatitis C. However, despite progress in some areas, we are failing to diagnose people effectively and we are then failing to treat them. Deaths from hepatitis C are skyrocketing — more than tripling since 1996, and will continue unless a far more aggressive approach is taken. Even in Scotland, with its worldleading Hepatitis C Action Plan, only half of those living with hepatitis C have been diagnosed. It is significantly less elsewhere. It seems inexplicable, knowing that the prevalence among injecting drug users is around 50 per cent and prevalence among prisoners is at least 10 per cent, that drug services and prisons are not automatically offering hepatitis C testing. Even more worrying is the large number of people who contracted the virus in the 1970s and 1980s through blood transfusions or experimentation with injecting drug use. Because these people have been infected for decades, they are at immediate risk of developing end stage liver disease.
Public Health England predicts that, if nothing is done, more than 4,000 people with hepatitis C in England will develop such severe disease in the next seven years that their only hope will be a transplant. Even when people are diagnosed they may not access secondary care services where they can access treatment. Drug services often fail to refer people to these services on the grounds that they are not ‘ready for treatment’, without assessment of liver damage. Even when they are referred, people do not always attend hospital appointments because hospitals are not easily accessible or they are given too little information when they are diagnosed: many do not know how effective treatment is, curing approximately 70 per cent of those who take it. We are also now seeing a phenomenon called ‘warehousing’: people who do attend secondary care are advised to wait for the more effective, more tolerable drugs in the pipeline. For many patients this might be the right decision, but they must be given enough time and information to make the decision. To clinicians, treatment can seem to be about liver disease; to patients, it can be more complicated, involving how symptomatic they feel, fear of discrimination, available support or concern about infecting those they live with.
Access to treatment
The end result of our failure to diagnose enough people, the inefficiency of the patient pathway and of the increase in warehousing is that just three per cent of those living with hepatitis are treated each year. Imagine a cancer that could be cured — not just put into remission — in 70 per cent of patients. If a mere three per cent were accessing treatment each year, it would be a national scandal. So why is there no outcry about hepatitis C? There has to be a suspicion that this is because hepatitis C disproportionately affects marginalized groups. Half of those with hepatitis C are from the poorest fifth of society and three-quarters from the poorest two fifths. If we are committed to tackling health inequalities in this country, then hepatitis C is the perfect disease to demonstrate that commitment. We need to start by increasing diagnosis across the UK. That means increasing awareness among both those at risk and healthcare professionals. World Hepatitis Day is a good time to start doing that.