Minister for Pacific Peoples and Associate Health Minister (Pacific Peoples), Aupito William Sio, has opened up about contracting rheumatic fever when he was younger.
He said he went from playing team sports at school, to not being able to get out of bed by himself.
“I ended up being hospitalised for about three and a half months,” he said.
His mother had to stop working in order to care for him once he’d been discharged from hospital, taking his household of nine children to a single income.
“It really disrupted our life,” he said.
Looking back, Sio realises he was feeling fatigued for a year prior to diagnosis, however his family didn’t realise this meant something was wrong.
“It was only until I struggled to get out of the bed one morning that my mum decided to take me to the doctors.”
He said there are still families today who don’t understand the signs and symptoms of the disease, but said work is being done to bolster education resources around the illness.
“Covid-19 gave us the opportunity to use technology for engagement, and recognised that we don’t all use the same language. Getting the right information in the language that people can understand is a powerful thing.”
Sio shared his story as the Government unveiled a $10 million investment into researching a potential vaccine for rheumatic fever.
Often dubbed a Third World disease, it’s been described by one Kiwi doctor as an “endemic in Aotearoa”.
On average, the illness infects 170 New Zealanders per year, but kills 130 in that same time frame, with Māori and Pacific people accounting for 95% of cases.
The disease can leave sufferers with life-long damage to their heart, and some children suffer strokes.
Last year saw an overall reduction in case numbers, with just 107 diagnosed, however Wellington saw a dramatic spike in the number of children hospitalised with the dangerous disease.
Fifteen Māori and Pasifika children from Porirua and Lower Hutt had rheumatic fever in 2020, according to Capital & Coast DHB, nearly double the number recorded in 2019.
Scientists at the university of Auckland will be working alongside their Australian counterparts to create a jab that helps to prevent the disease and its long-term side effects.
New Zealand and Australia are the only wealthy countries that continue to see cases of the illness.
“It shouldn’t be here,” Sio told 1News. “None of our children should have to experience what it’s like.”
Associate Health minister, Dr Ayesha Verrall, made the vaccine plan announcement at Takapūwāhia Marae in Porirua.
“It’s an incredibly complex disease and we need to be working on every front, and there isn’t going to be another country that’ll develop a vaccine,” she told media.
“It [rheumatic fever] has a profound impact on the young people that have it. Not only on their health, but they miss out on opportunities in education. We really need to do something about this.”
Verrall used to work with young children suffering from the sickness when working as an infectious diseases doctor, so knows what impact it has on children and whānau.
“As an infectious diseases doctor, I cared for rangatahi who experienced some of the worst outcomes from this illness. Several had heart valve replacements that became infected, and some suffered strokes. I remember one young woman who needed a heart transplant, and later tragically died.”
She said the $10 million investment will go towards boosting laboratory capabilities, medical surveillance, and then the infrastructure to support a clinical vaccine trial.
But, she did point out the work is to see if a vaccine can be created, rather than a promise that one is coming.
“Vaccine development work is speculative. But if we don’t try, we won’t get anywhere.”
Despite the government’s efforts to dramatically reduce cases of rheumatic fever, rates have remained high according to a report published today by the Prime Minister’s Chief Science Advisor.
“The evidence that previous interventions have not resulted in sustained decreases... highlights the need to re-evaluate and redouble efforts in areas that may make a difference,” it said.
It found preventing strep throat infection through vaccination could make a significant difference to rates of infection and complications of rheumatic fever and rheumatic heart disease.
The paper called for a more holistic, collaborative, and Māori and Pacific-led prevention and control plan going forward, pointing to the multipronged approaches in places like Costa Rica, Cuba, the French Caribbean, and Tunisia that have resulted in significant reductions of the illness.
The vaccine research programme begins next year.