Ms Purcell was involved in the ground-breaking project led by Charge Technologist and founder of the Hepatitis Foundation, Sandy Milne in 1984 which tested 93 per cent of the population of Kawerau in the Bay of Plenty to ascertain the extent of hepatitis B infection in the area.
Today, she is revisiting many of those people as part of the longest longitudinal hep B study ever conducted. Some of the participants clearly remember how, as children in the 1980s, they were not allowed to go on a school camp because of the stigma of the disease.
“Kawerau got a terrible name as the worst infectious place in New Zealand,” says Ms Purcell. “I have an adult patient who says ‘we were made to feel so dirty and terrible’. He remembers being told that.
“People were told it was a dirty disease, a sexual disease. It put people off from getting tested.”
Many unaware they are infected
Since immunisation became available in 1988, the incidence of hepatitis B infection in New Zealand has declined, but there are still an estimated 100,000 people with chronic hep B in the country.
Many are unaware they are infected and are at increased risk of cirrhosis and carcinoma.
In the early 1980s, Helen Purcell was a public health nurse in Rotorua, although she lived in Kawerau where Mr Milne wanted to base his study. “People didn’t want to know about hepatitis B because they were frightened about it,” she says. “They approached me for help because I knew everybody. My job was to get everybody to turn up and have a blood test.”
Nearly 8000 people were tested and more than 500 were found to be chronic carriers of the disease. A world-first low-dose hepatitis B vaccination programme of Kawerau children was funded by the community, with more than 95 per cent of susceptible children up to age 12 vaccinated. The success of this programme led to the decision to vaccinate children across New Zealand.
Her experiences in Kawerau marked a turning point for the young nurse. She went on to do similar work in Vietnam, helping set up a laboratory and going out to villages to vaccinate children.
When she returned to New Zealand, she became a hepatitis community nurse for the Hepatitis Foundation which is based in Whakatāne. She has travelled around the country taking blood samples, sometimes towing a large caravan.
Education is a big part of her job, she says, getting people to understand the importance of regular testing, preferably every six months for those with the virus, to reduce the risk of liver disease.
“The problem with hepatitis B is it’s a hidden disease. People don’t feel sick – they don’t take it on board until they get older. My main job is to find people overdue for blood tests.”
That’s not always easy in a place like the Bay of Plenty, especially when people “disappear off the radar”.
She recalls trying to trace a logger up the Ruatoki valley. “I’d been chasing him for years, him and his brother. Now he has problems with his liver. He didn’t answer his phone and didn’t turn up.”
Using her local network, she contacted his mother-in-law and managed to get a letter to him. “He turned up. That’s so reassuring to me. They know who I am and they know I will chase them up.”
Sometimes it’s too late. She recalls one patient who had missed his tests. “They moved and we lost him, I’d been looking for him over the years.” He went to a doctor with a pain in his stomach. “Two weeks after that he died.” He was 42 years old.
She says outcomes like that are devastating, “for the family and for me, especially if I know the family”.
If patients are caught earlier, even with cirrhosis, they can be put on medication. “It works wonders.” Those with liver cancer are referred to the transplant unit in Auckland.
She says she has a good relationship with GPs in her region and visits them as often as possible, taking any opportunity to share her knowledge and experience. “GPs do everything – I just do hep B,” she says modestly. “They are very interested, especially new GPs, they want to have all this information.”
She encourages GPs to test those at risk, urging them to refer all their patients with chronic hepatitis B and C to the foundation. “The doctors and nurses I’ve talked to see the benefit of what we do, as it takes a load off their shoulders.”
She believes she has made a difference to people’s lives over the decades.
“I’ve watched patients grow up, get into trouble, get out of trouble, get married and have children – many have come to accept me as part of their family.”
Ms Purcell left last month on a three-month world cruise accompanied by a fellow nurse. Speaking before she left, she was excited by the trip, but typically concerned about the people she cares for and in whose lives she has become so inextricably entwined.
“I worry about being away,” she says. “I worry about my patients.”
Story published by NZ Doctor on June 5, 2019
