More than 200 children in England have been cured of hepatitis C in a world-first treatment programme on the NHS that is likely to eradicate the disease.
Hepatitis C is a devastating virus that can infect the liver. Left untreated, it can cause life-threatening damage, including liver cancer. Amid global concern over the disease in recent years, the World Health Organization tasked every country with eliminating it by 2030.
After the launch of a pioneering scheme to track down and treat every single person affected, England is on track to become the first country to consign the disease to history. It will be wiped out by 2025, senior NHS officials believe.
Deaths from hepatitis C have plummeted by 35% since NHS England struck a £1bn deal to buy antiviral drugs for thousands of adult patients in 2018.
The programme has been expanded to include treatment for children, and more than 200 – some as young as three – have been cured of hepatitis C. Each of them took antiviral tablets once a day for eight or 12 weeks. Two follow-up negative blood tests confirmed they were healthy.
“This milestone of 200 children receiving potentially life-saving treatment is an extraordinary achievement for the NHS as we continue to make progress toward the goal to eliminate hepatitis C in England way ahead of the 2030 target set by the WHO,” Prof Sir Stephen Powis, the medical director of NHS England, told the Guardian in an exclusive interview.
“Giving children this treatment as early as possible can cure them of this devastating disease, stopping them from developing serious liver disease as well as hepatitis C-related liver cancer later in life.”
The medical breakthrough is even more remarkable given that until recently there was no cure for the disease, and tracking down children affected was virtually impossible – because there is no national screening programme and no national antenatal screening programme.
It means the condition is difficult to diagnose unless either the mother is known to have hepatitis C or the child becomes sick later in life and the condition is detected.
After a string of scientific developments in the last two decades, hepatitis C can now be cured relatively swiftly. But even with the arrival of effective drugs, treatment has still proved far too expensive for many patients around the world.
After NHS England struck a deal with the makers of a new class of drugs, it has been able to launch its world-first programme to identify and treat everyone with hepatitis C.
Since the launch of the service, a national NHS treatment team has been formed to track down children in England by working with local health services, charities and GPs. Once identified, children receive treatment locally and are treated within four weeks.
Children with the virus are typically infected via their mother during birth, or when receiving immunisations or other healthcare abroad. Previously, children with the disease were left to deal with it as they grew older, with some dying young.
Families affected hailed the NHS drive to stamp out the disease, saying it would enable their children to live “normal, happy lives”.
The father of one of the 200 children described the “amazing” and “emotional moment” he learned that his 10-year-old daughter, Dominika, who inherited hepatitis C from her mother, had been cured.
“We didn’t realise she had it at the time, but my wife passed the virus to my daughter when she was pregnant,” said Darius Gmurkowski, from Coventry. His wife, Lucy, still does not know how she herself contracted hepatitis C.
“Although my wife was treated immediately, my daughter was too young to start treatment. After waiting for Dominika to be old enough, we finally got the call for her appointment when the programme expanded.
“The new drugs that are used to treat the condition are absolutely brilliant. She had no side-effects and just needed to take one pill a day. There was no problem at all. It’s hard to explain how amazing we felt when she was cleared of the virus, as it was such an emotional moment. We had waited a long time for her to be eligible, so it was great to have peace of mind. Thanks to the treatment, we can carry on with normal, happy lives now.”
Rachel Halford, the chief executive of the Hepatitis C Trust, said she was thrilled that so many children with hepatitis C had been tracked down and cured.
“The sooner the virus is treated, the less impact it will have on a child’s mental health and the less damage it will cause to the liver,” she said. “Although it is rare that children are exposed to hepatitis C, they face the same risk as any adult if they come into contact with infected blood.”
Not every baby born to a mother with the disease will inherit it, Halford said, and there are other ways people can become sick.
“A small minority – about five in every 100 babies born to mothers who have hepatitis C – will get the infection,” she said. “Children can also contract hepatitis C if they come into contact with infected blood in other ways, such as if they receive medical treatment in a country where infection control is poor.”
Hepatitis C often does not have any noticeable symptoms until the liver has been significantly damaged, which means many people have the infection without realising it.
Symptoms can include flu-like illness, feeling tired all the time, loss of appetite, stomach ache, and feeling and being sick. “If you are concerned, ask your GP for a hepatitis C test,” Halford said.