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28th July 2018

Hepatitis: finding the missing millions

Until a few years ago, Michelle Tolley was one of the approximately 300 million people who are unaware that they carry viral hepatitis. Now she’s on a quest to help find the rest of the ‘missing millions’.

Despite having contracted the viral infection in the late 80s or early 90s as a result of receiving contaminated blood during a transfusion, Michelle was only diagnosed in 2015. “I’d suffered from fatigue and gastrointestinal problems for years, but the cause was always put down to other things,” she tells This Is MedTech.

Meanwhile, in 2004 Michelle developed Type 2 diabetes which meant going for regular blood tests. It wasn’t until over ten years later, however, that one of these tests flagged up a bigger problem. “My liver function tests came back way off the scale,” she recalls. “The doctor and I were trying to work out what it could be and suddenly it popped into my head to mention the blood transfusions that I’d had over two decades earlier when giving birth to my children. That was before the UK started screening donor blood for hepatitis.”

The doctor ordered a blood test for hepatitis and within a few days, he confirmed that Michelle was carrying the Hepatitis C Virus (HCV). ‘Hepatitis’ means inflammation of the liver and viruses that primarily attack the liver are called hepatitis viruses. There are several types, with A, B and C being the most common.

“The doctor wanted me to come in for a talk, but I needed to digest the news first. I couldn’t see past a coffin,” says Michelle. “I went through a grieving process and became very withdrawn because of the stigma attached. There’s a lack of knowledge and people often make judgments.”

Approximately 325 million people worldwide are estimated to be living with viral hepatitis – and it’s responsible for 1.3 million deaths a year – but only 1 in 10 are aware of their infection because like Michelle they can go for years without any acute symptoms. Unless these people are detected and treated they face the risk of liver disease, liver cancer and passing the infection on to others. The delay in Michelle’s diagnosis led to the development of cirrhosis, a scarring of the liver due to long-term liver damage.

Following a gruelling six-month treatment with anti-viral drugs, Michelle was given the all clear and the HCV is no longer detectable in her blood. But her life will never be the same. “I went through a period of anger, because I had actually approached a doctor for a blood test in the 90s and had been told it wasn’t necessary,” she explains. “There were other missed opportunities for diagnosis over the years, too.”

Michelle knew she had to find a positive outlet for her anger. “I kept thinking that if it happened to me, how many more of ‘me’ are out there walking around in the same situation?” That’s how she got heavily involved in raising awareness about hepatitis, working with patients and encouraging people to get tested.

One project that she’s working on is the World Hepatitis Alliance’s (WHA) campaign to Find the Missing Millions of undiagnosed people with viral hepatitis. The aim of this programme, which is being launched on World Hepatitis Day, is to have diagnosed 30% of people by 2020 and 95% by 2030.

World Hepatitis Day takes place every year on 28th July to raise awareness of the global burden of viral hepatitis and to influence real change.