Washington: The obscure but devastating virus affecting thousands of people in central Australia is a “very significant problem”, according to international experts on HTLV-1.
The UK’s leading human T-lymphotropic virus clinician said he was “shocked by the extraordinary rate” of infection among central Australian Aboriginal communities, and warned that governments and health professionals needed to mount a “strenuous effort” to tackle the problem.
Prof Graham Taylor is the head of the UK’s National Centre for Human Retrovirology at Imperial College, London.
“Central Australia has the highest recorded prevalence rate of HTLV-1 in the world. A 45% infection rate in communities is shocking to me,” he said.
In Japan, a concerted public campaign has reduced the transmission of HTLV-1 by 80% over the last 20 years. Prof Yoshi Yamano said Australia needed an “urgent” comprehensive study to map the spread of the virus, as HTLV-1 could be more prevalent than first thought.
An infectious diseases clinician at the Baker Institute in Alice Springs, Dr Lloyd Einsiedel, also found a strong link between high rates of HTLV-1 infection and the fatal lung disease, bronchiectasis.
This research is of great interest to his UK counterpart Taylor.
“It’s different to what everyone else has seen, though he is describing a disease that is known elsewhere. But the patients he’s seeing are dying, and dying young.
“Every person counts,” Taylor said. “We should not neglect further this community, the disease rates in this community, and the death rates in this community.”
Taylor is concerned that Australia doesn’t “even have a testing regime”.
A poster in Japan, where a concerted public campaign has reduced the transmission of HTLV-1 by 80% over the last 20 years. Photograph: Justin McCurry for the Guardian
“It’s a very significant problem and there needs to be a strenuous effort to deal with it. It will not be easy, it’s complicated by culture and remoteness, but this is a preventable infection. These are preventable deaths,” he said.
In the UK, an estimated 20,000 to 30,000 people have been diagnosed HTLV-1 positive. This puts it in the rare disease category. Nevertheless, since 1991, the UK has maintained a national centre for research and treatment of the virus and its lethal complications.
“As an outsider, it’s extraordinary,” Taylor said about Australia’s health response. “Internationally, there’s more interest in what is happening in Australia from outside Australia.”
The federal Indigenous health minister, Ken Wyatt, told Guardian Australia: “Indigenous health improvement is a top priority.”
Wyatt said HTLV-1 would be considered in the new blood-borne viruses and sexually transmissible infections strategy, which is being finalised. In the meantime, “further research is contributing to a better understanding of the risks of infection to help guide control efforts in Australia”.
One barrier has been the availability of blood tests to determine who has the virus and, most importantly, their viral load. The higher the viral load, the greater the risk of serious complications.
Testing for HTLV-1 in Australia is expensive and results can take six months to return because these are currently done as part of a research program. The proviral load test is not publicly available yet.
“If a medical service is not covered under the MBS [Medicare Benefits Schedule], applications can be made to the federal health department for its medical services advisory committee [MSAC] to consider whether the service warrants public funding. Presently, no MSAC application has been lodged for the HTLV-1 blood test,” Wyatt said.
The MSAC assessment can take 22 weeks to complete, and includes a thorough assessment by the Therapeutic Goods Administration.
The Northern Territory health minister, Natasha Fyle, told Guardian Australia she would write to her federal counterparts “to consider the inclusion of blood testing”.
“Every Territorian wants and deserves access to high quality health services, including blood testing for HTLV-1,” she said.
“More research is critical to informing a much-needed public health response, however the research funding is being stretched to cover costly blood testing.”
In Japan, there’s a clinical trial of a monoclonal antibody called “mogamulizumab” that targets affected cells and destroys them. Yamano said a potential drug treatment emerging from this trial could be three to four years away but in the meantime, Australia needed to move to halt the spread of HTLV-1.
“An epidemiological study is very important. Australia needs to develop precise data,” Yamano said.
“It needs a long-term commitment. It costs a lot. Education for nurses and doctors, and counselling for people infected is very important. Awareness is improving in Japan – the government’s decision to conduct a national screening test helped a lot.
“This virus is endemic in Aboriginal people. Many authorities may just not know about the facts. They think this is a problem in local places with local people, like Japan was thinking 20 years ago,” he said.
“We should hear the voice and opinion of those people who are suffering from this – not only the infected but their families. That is very important.”
Central Australian Aboriginal Congress is the largest Aboriginal community-controlled health organisation in the Northern Territory. Its chief executive, Donna Ah Chee, told Guardian Australia this week that HTLV-1 required a careful response, devised and led by Aboriginal people.
“The role of Aboriginal community-controlled primary health services will be critical in working through the issue of HTLV-1. Through our sister Aboriginal community-controlled services in Western and South Australia, we must develop a public health response covering education and prevention,” she said.