Just one in three people with hepatitis C in the UK have been diagnosed according to the latest estimates released at this year's World Hepatitis Summit in Sao Paulo, Brazil (1-3 November).
These latest data from The Polaris Observatory (led by Dr Homie Razavi and his team from the Center for Disease Analysis Foundation, Lafayette, CO, USA) show that out of an estimated 162,000 people living with hepatitis C in the UK, only 62,200 (38%) are diagnosed.
"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."
Initially worried about being overwhelmed by a tsunami of patients wanting treatment, the National Health Service (NHS) in England introduced rationing but now finds itself confronted with the opposite problem. Big falls in the prices of the new drugs have allowed the NHS to significantly increase treatment numbers within a fixed budget to a level that would lead to elimination by 2030 but some areas are already running out of patients to treat. Having vetoed 2 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.
"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 Homie Razavi of the CDA Foundation. "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."
The UK's All-Party Parliamentary Group on Liver Health, made up of members of both houses of Parliament, is so concerned about this that it is holding an enquiry into the elimination of hepatitis C and has just finished taking evidence from experts. Its report is expected in early 2018.
Finding the undiagnosed is not an easy task. Hepatitis C is a blood-borne virus endangering anyone who comes into contact with infected blood. It is very prevalent amongst injecting drug users but it is far from just a drug users' disease. Many people in the UK were infected before blood and blood products started being screened for hepatitis C in 1992 and after years of pressure the UK Prime Minister Theresa May has recently ordered a public enquiry into what happened. Hepatitis C can also be transmitted through unsafe medical and dental work abroad, unsafe tattoos and sharing household implements like razors and can be transmitted from mother to child at birth.
Hepatitis C often has few, if any, noticeable symptoms until it has caused life-threatening damage to the liver. Indeed, deaths from hepatitis C-induced cirrhosis and liver cancer had almost quadrupled over 15 years until the introduction of the new direct acting antiviral drugs (DAAs). These drugs are now so potent that they can cure more than 95% of those infected. But only those who have been diagnosed can access them.
"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."