Official Forum Update: Australian Government, Department of Health
On August 28 and 29 in Alice Springs a Collaborative Forum on HTLV-1 was convened by the Central Australian Academic Health Sciences Centre and the Australian Government Chief Medical Officer. The forum included Aboriginal leaders, community and patient representatives, researchers, representatives from Aboriginal community-controlled health services, clinicians, public health officials, and representatives from Commonwealth and state and territory health departments. The forum reaffirmed the importance of Aboriginal leadership in this process and agreed on the following statement.
HTLV-1 in Central Australia
Human T-cell Lymphotropic Type-1 (HTLV-1) is a virus that occurs in diverse communities around the world and has been present among Aboriginal people in Central Australia for thousands of years. The type of the virus found in Central Australia, type C, is unique to our part of the world. Preliminary data suggests high rates of this virus in some communities in Central Australia.
Current evidence shows that infection with this virus is not likely to cause disease in a majority of people. International research shows that, in a small proportion of people after many decades, HTLV-1 causes a rare form of leukaemia and/or a spinal cord disease. Studies have suggested associations with other diseases but it is not yet known whether it causes those diseases or not. The true burden of disease of HTLV-1in our communities needs further research.
HTLV-1 can be prevented in adolescents and adults by safe sex and not sharing needles. The significant health benefits of breastfeeding are well established and, whilst transmission through breastfeeding can occur, current evidence does not yet warrant a change in practice in Central Australia.
Once acquired, HTLV-1 is present for life, but there are management options for most of the diseases that may arise from it. Further treatment options are being investigated.
There needs to be a major long-term study, developed in partnership with the affected communities, to work out exactly what impacts this virus is having on people in Central Australia.
We will be working to develop better access to effective testing options together with clinical guidelines for HTLV-1 associated conditions. Although the forum did not recommend widespread testing at this stage, more research needs to be done to understand where the virus occurs.
We will continue to work collaboratively to integrate community priorities, research findings, and clinical and public health guidelines into a coordinated approach to HTLV-1 in Australia.
Considering the wide range of health concerns of Aboriginal people in Central Australia we need to continue to strengthen primary health care, address the broader social determinants of health and enable healthy lifestyles.
A Clinician’s, Scientist’s and Activist’s Representatives Perspective
As a HTLV clinician, scientist and activist it was a privilege to be invited to the HTLV-1 Collaborative Forum in Alice Springs, Australia, organised by the Department of Health’s Chief Medical Officer Prof Brendan Murphy in response to the extraordinary high prevalence of HTLV-1 oncovirus in hospital and community-based settings in and surrounding Alice Springs.
We met at the Double-Tree by Hilton Hotel on 1pm on Tuesday 28 August and again all day on 29 August 2018. Alice Springs sits between the beautiful Tjoritja (pronounced CHOOR-IT-JA) and the Yeperenye (pronounced YEP-AREN-YA) also referred to as Western and Eastern MacDonnell Mountain ranges, which are one of the most beautiful places I have ever been to. When one travels the land, one feels the thousands of years of history that connects this land with its people.
A wide range of stake-holders were invited to the HTLV-1 Collaborative Forum. Participants included government representatives, members of the Central Australian Aboriginal Congress and Centre for Disease Control Northern Territory, local clinicians, researchers, an one person living with HTLV-1, Mr Shane Schincke. Unfortunately, no Aboriginal person living with HTLV-1 was able to attend this meeting.
It was a great idea to meet in Alice Springs and to bring so many stake-holders together. Many hours of presentations and discussions were held and by the end of the meeting this communique was released (see column to the left).
In my opinion, the highlight of the meeting was the promise to make HTLV-1 serology and viral load testing free to all Medicare eligible people in Australia. This will allow clinicians to counsel people living with HTLV-1 about their life-time risk of developing HTLV-1 diseases and their risk of HTLV-1 transmission to their babies through breastfeeding or to their sexual partners through condom-less sex.
In addition, Prof Murphy welcomed the establishment of an ongoing long-term cohort study to collect additional information on how dangerous HTLV-1 is to those who live with the virus.
Personally, I was hoping that our efforts to get together and the large number of peer-reviewed, high quality, published evidence on the high HTLV-1 prevalence, disease and mortality burden in communities surrounding Alice Springs had resulted in the urgent implementation of public health intervention strategies outlined in our Open letter to the WHO: see here
My wish list includes the following actions:
At the moment these issues remain unresolved. We have formed an informal HTLV-expert group in Australia and will continue to verbalise the urgent need to include HTLV-1 in the currently successfully implemented public health prevention strategies against other dangerous viruses such as HIV, Hepatitis B and Hepatitis C virus.
The HTLV-1 Collaborative Forum in Alice Springs was a beginning of a long-term collaboration to reduce the suffering caused by HTLV-1 and I hope we will meet yearly to evaluate the outcomes of our collaboration.
Sexual Health, HIV and HTLV Physician
A Patient Representatives Perspective
On August 28 and 29 a Historic event took place in Alice Springs, the first Collaborative Forum on HTLV-1 in Australia.
The Forum was organised by the Federal Government of Australia in response to recent articles in the media drawing attention to the high prevalence rate of HTLV-1 among Aboriginal people in Central Australia.
I applaud the quick response by the Australian Chief Medical Officer Prof. Brendan Murphy for convening the Forum, together with the Australian Academic Health Science Centre.
The forum also included, community and patient representatives, researchers, representatives from Aboriginal community-controlled health services, clinicians, public health officials, and representatives from Commonwealth and state and territory health departments. Following two days of presentations and discussions a Communique was released, highlighting the need for further research into HTLV-1 and the need for public health guidelines.
Whilst the Forum is a step in the right direction, by recognising HTLV-1 within Aboriginal communities in Central Australia, it didn’t go far enough in addressing HTLV-1 in the context of the wider community.
The current doctrine in Australia in regards to HTLV-1 is that we know that it exists, but that infection with this virus is not likely to cause disease in a majority of people. But where does it leave patient that are HTLV-1 positive and have associated diseases, like myself, and can we afford to wait until long term research have been conducted, before we act?
Several Participants even went as far as to express the view that we should not test patient at all,” because we can’t do anything about it anyway”, or are willing not to disclose blood results to the patient because it would worry them unnecessarily. From a Patient Advocacy perspective, I find those views quite disturbing.
There are currently no services, health literature or clinics available for HTLV-1 patient’s.
Most GP’s and Specialists in Australia are not aware HTLV-1 exists. A lack of knowledge and understanding of the Virus is making many health practitioners uncomfortable to either discuss or respond to HTLV-1 with their patients.
Whilst we still have a long way to go in accepting that HTLV-1 does pose a health threat in Australia, I am hopeful that the right steps have been taken with the Collaborative Forum on HTLV-1.
Let’s watch that space!
HTLV-1 Representative Australia