Labor’s health spokesman has called into question the government’s progress in tackling HTLV-1 in Aboriginal communities in central Australia, which have the world’s highest rates of the fatal virus.

In April last year, Guardian Australia revealed that in five communities around Alice Springs, more than 45% of adults tested have the virus, a rate thousands of times higher than for non-Indigenous Australians. There is no current cure and no effective treatment for the virus.

Quick Guide What is HTLV-1? Show What does HTLV-1 do? Human T-lymphotropic virus type 1 is spread through contaminated blood, unprotected sex and breastmilk. Like HIV, there is no cure. Like HIV, the virus causes potentially fatal complications but unlike HIV it takes much longer for symptoms to appear. Some people carry the virus for 30 years before chronic complications appear. Five to 10% develop a rapidly fatal form of leukaemia – nearly all of those will die within 12 months of diagnosis. Other life-threatening complications include kidney failure, lung disease, inflammation of the spinal cord leading to paralysis and other infections. The higher the viral load in the bloodstream, the more likely serious the symptoms. Who’s at risk? HTLV-1 infects up to 20 million people worldwide. It’s endemic to sub-Saharan Africa, South America, Papua New Guinea, Japan and central Australia, which has the highest transmission rate in the world. Essentially, once it has taken hold in an area, it is impossible to eradicate. Why isn’t there a vaccine? HTLV-1 was discovered in te 1980. It was eclipsed in scientific interest by the 1984 discovery of HIV, which caused a global epidemic. Possibly as a result, HTLV-1 has been neglected by the global research community. Testing, research and clinical treatment need to be conducted before any cure can be sought. Japan is most advanced in treatment. It has reduced the transmission rate over time by 80%, through mass testing, and is trialling drug treatments. In 2014, the Global Virus Network set up an HTLV-1 taskforce, led by experts from 11 countries, to help speed up the development of drug treatments and vaccination, and educate the general public.

Following that reporting, the federal health minister, Greg Hunt, announced an $8m taskforce to look at HTLV-1 and other communicable diseases in remote communities, and has since announced a $4.5m longitudinal study to work out exactly how widespread – and how dangerous – the virus is.

The HTLV-1 taskforce is led by Australia’s chief medical officer, Brendan Murphy, and the Central Australian Academic Health Sciences Centre (CAAHSC). It has met with Aboriginal leaders, patients, researchers, Aboriginal community-controlled health services, clinicians and federal, state and territory health departments.

In its first and only public statement last year, the taskforce said more research needed to be done to understand where the virus occurs.

But Labor’s health spokesman, Chris Bowen – after writing in The Australian earlier this week – now wants the taskforce to provide regular updates to parliament, “so we can assess and review efforts to tackle the disease”.

“We need to cast a wide lens to tackle this issue and ensure culturally appropriate education, testing, research and treatment for HTLV-1 is funded,” Bowen said.

Hunt dismissed the suggestion, saying Australia is already “leading the international response to this poorly understood virus”.

“Contrary to the assertion made by Mr Bowen, the government’s response to HTLV-1 in Indigenous communities is an exemplar of how complex issues such as this should be resolved in partnership with Aboriginal and Torres Strait Islander communities, and by listening to the voices of Aboriginal and Torres Strait Islander leaders,” Hunt said.

“Screening interventions and public health campaigns for any disease or condition need to be based on solid evidence, and need to be informed by the views of those affected by it,” he said.

The government is sponsoring and, in partnership with the Japanese government, co-convening the first World Health Organisation Global Consultation on HTLV-1 later this year in Tokyo, the minister said.

But Bowen remained unconvinced by the effectiveness of the approach.

“This isn’t a disease in isolation. If a life-threatening disease effects 50% of some communities, this is a national crisis that deserves our attention.

“Of course there are other critical health issues that deserve our attention too, but why on earth does the minister think that Indigenous health issues need to compete for funding or attention?

“Funding Aboriginal community controlled health organisations is hugely important in providing appropriate Aboriginal health care and closing the gap.”

Bowen said parliamentary oversight was important to ensure the government was held to its promises.

“I will be focusing my attention to Aboriginal health and will hold the government to account to appropriately fund it,” he said.