As a baby, Bill McKeown gasped for air one Sunday afternoon and his parents were worried.
"Me and my wife didn't know what to do," his father Dan McKeown said.
"We could hear this terrible sort of breathing."
They called an ambulance to their home in Rosebery, Northern Territory, which led to the first of three hospitalisations over the next year before they discovered Bill had asthma.
"Most of the doctors didn't know what they're looking for," Mr McKeown said.
"When you see little kids that can't explain what's going on, it's all very strange and they get very scared."
Foundation funding reduced
Asthma Foundation NT (AFNT) chairman Ian Crundall said regional children like Bill might not get the attention they needed after a hole appeared in its funding model.
Dr Crundall said it could no longer complete remote face-to-face visits after its annual federal funding was reduced from $160,000 to $42,000.
AFNT has been in a stoush with Asthma Australia over funding since the National Asthma Strategy was launched in 2018.
Dr Crundall said AFNT refused to join a state and territory merger in 2018 due to concerns about how remote asthma management would be funded.
"We've been supporting work out of our reserves for the last five years in the hope that we'd get the money back," he said.
Dr Crundall estimated one in nine Territorians had asthma.
"However, this is likely to be an underestimate," he said.
"Remote Aboriginal detection has been hampered, precisely because of the current issue, so there are many who are misdiagnosed as short-winded, or simply not diagnosed.
"It is apparent too that smoking rates in communities are notoriously higher."
Face-to-face consults required
Dr Crundall said Asthma Australia's telehealth model fell short of providing enough care.
"It's critical that those initial contacts need to be face-to-face," Dr Crundall said.
"Patients can be told how to use their medications and what they're for and see how devices are supposed to be properly used.
"That sort of service also requires very extensive health infrastructure like GPs and chemists, and they're just not available remotely."
'I do forget'
Beverley Wilson lives in Katherine — 270 kilometres south-east of Darwin — and said in-person consultations were vital for managing her asthma.
"They came down and tested me, reviewed everything and put me on my medication," she said.
"I'm elderly and so I do forget how many puffs of ventolin I have.
"But in person, they know where you're at and the right adjustments to make.
"Having a phone consultation is not the same as a one-on-one appointment."
Amalgamate or diversify
Asthma Australia chief executive Michelle Goldman said the AFNT could remain independent and diversify its revenue.
"Or they can consider amalgamating as many other asthma foundations have done," she said.
"We merged so that we could pool our resources, reduce duplication, and ensure we could maximise funds that are allocated to direct service delivery.
"It's not a feasible or sustainable model to provide face-to-face services, including spirometry, to every person in the Northern Territory with asthma who needs one.
"Funds are distributed in a fair and considered way, balancing both the size of the population that needs to be serviced, and also the outcomes that can be achieved through that investment."
Darwin-based registered nurse and chronic disease health educator Marie Bottolfsen said it was a "classic case of decisions being made by other states with very little knowledge about how the entity works".
"If I send patients to Asthma Foundation NT they will get quality service," she said.
NT contract secured
AFNT has recently secured an NT government contract worth $320,000 per year over five years.
"It's a highly competitive market now to try and get some corporate sponsorship, particularly in the Northern Territory," Dr Crundall said.
"We're only asking for the money that we used to get.
"We're likely to miss people suffering from asthma."
Back in the McKeown house, Bill is now nine and his six-year-old brother Jim also has asthma.
"For new parents, it's pretty scary," Mr McKeown said.
"It's great to have someone that can support you and walk you through exactly what's happening so you're fully informed about what's taking place."
