More than 100,000 people living with hepatitis C in the UK are undiagnosed

Just one in three people with hepatitis C in the United Kingdom has been diagnosed according to the latest estimates released at this year’s World Hepatitis Summit in São Paulo, Brazil (1-3 November).

The estimate comes from a global synthesis of data on hepatitis C prevalence and diagnosis carried out by the Polaris Observatory, led by Dr Homie Razavi. The Polaris Observatory study shows that out of an estimated 162,000 people living with hepatitis C in the UK, only 62,200 (38%) are diagnosed, Aidsmap reports.

“Even these numbers overestimate how many people are available for treatment because the majority of the ‘diagnosed’ are not in touch with services for a variety of reasons”, says Charles Gore, CEO of the national hepatitis C charity, The Hepatitis C Trust, and also President of the World Hepatitis Alliance.

“Many were diagnosed years ago. They were never informed how deadly hepatitis C can be and they do not know about the new drugs and how extraordinarily effective and easy to take they are.”

The poor rates of diagnosis in the United Kingdom call into question the possibility of achieving the World Health Organization target of hepatitis C elimination by 2030, according to Dr Razavi.

“To make the 2030 elimination target, at least 10,000 patients need to be treated each year, and there are already signs that it is becoming harder to find diagnosed patients to treat,” said Dr Razavi. “Although in 2016 some 10,000 people were treated and in 2017 this could reach 12,500, the projections suggest the annual total will drop to an estimated 5,000 patients treated per year by 2020 without better diagnosis and linkage to care.”

When direct-acting antivirals were introduced in the United Kingdom treatment was tightly rationed in order to contain costs. As a result of large price reductions negotiated with pharmaceutical companies it has been possible to expand the number of people treated, but according to the World Hepatitis Alliance, some areas are already running out of patients to treat. Having vetoed two years ago a Hepatitis C Improvement Framework designed to improve diagnosis and linkage to care, the NHS is now scrabbling to put in place initiatives to do just that.

According to Public Health England’s most recent report on hepatitis C, the number of tests carried out for hepatitis increased by around 20 to 25% between 2011 and 2015. Public Health England suggests that the World Health Organization’s European target of diagnosing 50% of people with hepatitis C by 2020 has already been met in England and Wales, and points to a high rate of testing among people who have ever injected drugs, the group with the highest hepatitis C virus prevalence in England and Wales.

But, although hepatitis C virus prevalence is high among people who have injected drugs, anyone exposed to blood in the past could be infected. People who received blood transfusions or blood products prior to the introduction of screening in the United Kingdom in 1992, and people who have received blood or undergone medical procedures in countries with lower infection control standards, could be living with undiagnosed hepatitis C.

“We have at least 100,000 people to find,” says Charles Gore. “If we don’t find them, not only will we never reach the goal of elimination, but significant numbers will die. To be honest, with these new drugs available, if anyone dies of hepatitis C, it should be viewed as an appalling failure of the system.”