A public awareness campaign on HTLV-1 in remote communities is urgent and needs to include potential transmission of the virus through breastfeeding, health expert Dr Vanessa Lee says.
The virus is not new. HTLV-1 is thousands of years old and was first identified in Australia thirty years ago, but to date, there has been no public health campaign to educate about the virus and how it is transmitted.
HTLV-1, human T lymphotropic virus type 1, can cause a particularly aggressive form of leukaemia and spinal cord damage. It is also associated with lung disease, inflammation of the skin and eyes, and a weakened immune system.
The virus is sexually transmitted, passed on through blood-to-blood contact, and can be transferred from mother to child through prolonged breastfeeding. Carriers of the virus are often asymptomatic; generally, people in Australia are not being offered testing. There is no cure.
With recent media attention on the high prevalence rates in five remote communities near Alice Springs - the highest in the world - the federal government on Friday announced $8 million for a new taskforce.
Dr Vanessa Lee, a Yupungathi and Meriam social epidemiologist at the University of Sydney, says it's incredibly important to develop a health strategy on HTLV-1 together with community-controlled health organisations and those affected by the virus, but there also needs to be an immediate 'stage one' information campaign.
She stresses breastfeeding must be addressed alongside the other ways HTLV-1 can be transmitted.
"You need to target sexual health and you need to target needle and syringe exchange. From there, you need to do the link across to breastfeeding and that can be easily done, very easily done,' she told NITV News.
“It needs to be culturally appropriate, but at the same time we don’t have time," she warned.
"Even if that stage one approach is as simple as a flyer that sits at the Aboriginal community-controlled health service telling people to come and have a blood test, 'if these are your symptoms come and have a blood test, we’d like to talk to you about HTLV-1'.
“That could go out relatively quickly. The government has the potential and the funding to make it happen fast.”
However, it is likely to be months before the new taskforce set up to investigate and combat HTLV-1 develops a public health response.
In a statement, Indigenous Health Minister Ken Wyatt said the "first step" will be to hold a forum with Aboriginal communities, Aboriginal community health services, researchers and all levels of government on HTLV-1. It will be hosted by the Commonwealth Chief Medical Officer (CMO).
This meeting will "discuss current HTLV-1 research and the challenges surrounding the virus, including potential transmission through breastfeeding and the importance of an extensive testing regime".
"The results from the forum will inform our collective approaches to this sensitive issue, in close collaboration with remote communities," Minister Wyatt said.
Separately, the Central Australian Aboriginal Congress has organised a meeting in early August with Aboriginal-controlled health services, the Alice Springs Hospital and health experts - which the CMO will also attend.
“We plan to be part of a meeting of Aboriginal leaders and organisations from across the tri-state region in Central Australia to discuss the current state of knowledge on HTLV-1 and what needs to be done," Congress CEO Donna Ah Chee said in a statement.
The delicate balancing act on breastfeeding
An open letter to the World Health Organisation (WHO) on May 10, on behalf of HTLV-1 positive patients, clinicians and researchers working on the virus, appealed to the UN body to do more to promote effective prevention strategies.
"Worldwide it is mostly women who carry the burden of HTLV-1 infection and its associated diseases: Women, who become infected through condom-less sex, and their babies, who are infected through breastfeeding."
The letter called for WHO to develop an online fact sheet for the virus, focusing on condom use, risks surround blood transfusions and organ transplants, using sterile needles, educating health professionals and "advising HTLV-1 antibody positive mothers not to breast-feed their babies (if deemed safe) or reducing duration to 3 – 6 months".
"We need routine antenatal care testing and advise against breastfeeding by mothers who are HTLV-1 positive where safe, alternative methods of infant feeding are available."
However, breastfeeding is actively encouraged in remote communities, and researchers working on HTLV-1 in Central Australia have instead focused on raising awareness around the sexual transmission of the virus.
“It is really difficult because what we don’t want in Central Australia is mums to stop breastfeeding.”
Dr Lloyd Einsiedel is an infectious disease physician at Alice Springs Hospital and lead researcher on HTLV-1 with the Baker Heart and Diabetes Institute.
The work of his team uncovered the high prevalence rate of 45 per cent across five remote communities near Alice Springs. There have also been high rates of infection, around 33 per cent, among Aboriginal patients at Alice Springs Hospital, which has a catchment that extends into South Australia and Western Australia.
The Baker Institute is now working on a similar community prevalence study in three town camps, and researchers have commenced a pilot mother-to-child transmission study.
While Japan has had success in reducing rates of HTLV-1 by targeting breastfeeding, any approach that would discourage breastfeeding in remote Australia is not considered appropriate until more is known and culturally appropriate, primary language resources are developed.
"The benefits of breastfeeding are very, very clear, particularly in remote communities," Dr Einsiedel told NITV News.
"In many cases, it’s going to be very difficult for mothers to make sure that alternative fluids are introduced in a safe way, and these are the sorts of things that have to be thought through.”
Arrernte man Joel Liddle is a research officer with the Baker Institute. While his background is in remote health engagement, he hadn't heard of HTLV-1 before going for a job with the Institute.
He told NITV News what struck him the most about the virus was its association with lung disease.
"Because lung disease is so prevalent around here and you just see it with family and people out bush and ... in the hospital it’s huge here."
With his Eastern and Central Arrernte, and the Central Desert languages spoken by his Aboriginal research colleagues, the consent process for the study provides an opportunity to sensitively introduce the virus to participants.
“We’ll talk through the consent form and that’s all done in primary language so that people actually truly understand what they’re consenting to, and what the tests we’re doing," he said.
"When we engage with people talking about the sickness, we’ll say something like you know, in language, ‘we’re here to talk about HTLV-1 and it’s a sickness' - or we use another term which is like poison."
He's currently working on a presentation that can be delivered in primary languages on HTLV-1. He says the issue of breastfeeding needs to be tackled sensitively and led by Aboriginal women.
"A lot of our patient base are impoverished people with very little access to fresh food and money, and so children and mothers, mothers and children are reliant on breastfeeding and, in some cases, young babies are breastfed until they’re three, four, five years old," he said.
“I think without anyone having knowledge of it, they don’t have a choice either. So there’s a whole spectrum of health literacy work and it’s not a small job, and it needs to be done with cultural sensitivity and by the right people and in primary languages.”
Dr Lee suggested the 'stage two' phase would be developing a culturally appropriate comprehensive approach by working with Aboriginal medical services where the virus is most prevalent, as well as people who have been living with HTLV-1.
"So we’ve got prevention at the frontline and then the community discussions about the cause coming up at the next line of defence, so we’re making a massive impact with the way we’re targeting the information and targeting Aboriginal and Torres Strait Islander people about this information.
"Because no two Aboriginal and Torres Strait Islander communities are the same, and a message that could work up in Yolngu country may not work down in Alice Springs or work across over in the Cape York."
Is a cautious approach paternalism?
Dr Lee believes it is important that people aren't deciding on behalf of women not to pass on a message about potential transmission of HTLV-1 through breastfeeding.
“I think knowing this country, I think people would do that deliberately, and they would do that because they believe that they’re doing the right thing and again it comes back to paternalism, and the paternalism approach that we take to biomedical health," she said.
"And that biomedical health [approach] means that we make a decision for you, about you, without you, rather than taking that holistic approach where we talk to you and we engage with communities."
She says services could be developed and delivered in a way that encourages a community response.
"So your aunties are aware and people that you would know... the other mothers who are part of breastfeeding can talk to each other and have that comfortable conversation, ‘hey sis, did you get screened, cause we don’t want bubba to get this disease because bubba could die’."
A factsheet on HTLV-1 the NT Centre for Disease Control has made available for clinicians working in the territory:
Dr Einsiedel agrees that ensuring the agency of mothers is important, but says it's a challenge when testing is not currently being offered.
“It is really difficult because what we don’t want in Central Australia is mums to stop breastfeeding," he said.
"I’d put it in terms of if a mother thinks she might be at risk of transmitting to her baby then she has every right to ask for a HTLV-1 test.
"But that has to be done with pre and post-test counselling I think."
With HTLV-1, researchers think around 30 per cent of people are at risk of developing complications.
"You run into problems with HTLV-1 if you're unable to control the amount of virus in your blood," Dr Einsiedel said.
“So, there’s a question of testing to see whether someone is positive or not, but then after that, we need to know how much virus they have in their blood and that’s not readily available... And that probably also predicts [the] risk of transmission from mother to baby as well.
"There’s a lot more that we can do to develop appropriate guidelines. That would be then fed back to the mother so that she can make decisions about when it’s appropriate for her to stop breastfeeding."
Federal Health Minister Greg Hunt has asked the Medicare Taskforce to consider including the HTLV-1 test on the Medicare Benefits Schedule. Currently, the test costs a prohibitive $169 and the results take up to six months to be returned.
"One of the issues is that people aren’t at the moment being offered testing in remote communities so that they can make decisions about protecting themselves from an infection that does appear to be highly endemic in our area," Dr Einsiedel said.
Mr Liddle, who has been travelling to nearby town camps to introduce the research studies, says he thinks the spread of the disease is very likely, and that this is "not just an Aboriginal disease".
"I think we’ll find with the movement of people, people being so mobile these days, is that it’s right around the place."
He's hoping the recent notice being taken on HTLV-1 will lead to more research funding so the virus can be further understood.
"If this was in Sydney or Melbourne I think ... there’d be a totally different response to HTLV-1," Mr Liddle said.
"There’s been inaction for 30 years on this problem, it’s now 30 years and it shouldn’t be ok for Aboriginal people in remote places to have HTLV-1 and to pass it on to their families.”