UPDATES: #1

The presence of HTLV-1 in Australian Aboriginal people is not new and it has not been hidden from those best suited to do something constructive to contain its spread and impact.

So why, about 30 years after it was first reported in Australia, is testing so rare and so hard to access?

One answer sits apart from the rest in Australia and perhaps in other communities around the world where HTLV-1 is endemic; this is not an epidemic affecting big city wealthy people, but poor, poorly resourced and marginalised populations. And they are not white.

I’m new to realising this virus has been in Australia for decades. If I have unrealistic expectations here, I hope you will forgive some of them.

Ebola virus in West Africa presented a lot of evidence for the importance of understanding and working with communities when battling an infectious disease that can be contained. This is highly applicable to the problem of HTLV-1 in Australia.

Improving our understanding of this virus will be a big task and taking action to address the problem and even bigger task. Governments are well-placed to resource such a task. These are tasks that require us to be good at communication, collaboration, to be humble and ultimately, to help Aboriginal and Torres Strait Islander peoples.

 

The HTLV-1 problem won’t be solved by parachute measures; dropping in but not staying for the long haul.

To date, there have been a few standout researchers who have identified and begun to characterize Australian HTLV-1. They’ve started defining the infected population, raising awareness, providing limited testing, understanding the HTLV-1 research that is already out there and essentially explained that there is a problem.

The next step, eradicating the virus, will take more and from higher levels of governance.

Don’t test, don’t find, can’t understand

One aspect that concerns me a lot about HTLV-1 in Australia manifests in this quote…

The mostly wrongly rehearsed HTLV mantra is that ‘Nothing can be done for patients, because there is no treatment or cure for diseases caused by HTLV-1.’[1]

Within this statement lies the implication that testing should not proceed until we have a treatment or cure. We should extend this mantra to include, until we have a support system in place.

So the question becomes, is it ethical to provide a diagnosis of infection or disease if there is no support structure in place, no treatment, no method to shorten disease or to moderate its effects?

My personal view here is that yes, it is ethical. It would seem to be unethical to withhold care and permit unknown transmission to continue because a diagnosis was delayed, not easily accessible or because a support structure didn’t exist.

Do we need a support network for HTLV-1 diagnoses?

Absolutely yes.

Supportive networks could provide counsel and information to patients and community to understand such things as:

• sample collection
• what a diagnosis means
• what this virus does
• how HTLV-1 spreads
• reproductive and postnatal decisions
• what medicines are available to moderate disease
• what research is underway to create antivirals or vaccines
• what patients can expect of their quality of life
• who else is infected and put people with the same diagnoses in contact with each other

HTLV-1 support networks could help with paperwork, finances, groceries and provide mental and emotional help. Such structured support already exists for cancer diagnoses.[11]

The network must learn and convey issues around managing the stigma (‘us and them’ prejudices that affect the person and community) associated with a diagnosis of infection or a related disease. Experience with HIV may be very helpful here.[12] The psychological impact of stigma are enormous and up to uninfected individuals to rise above, but help and a sharing of that burden are essential.[13]

Support should be funded and structured as a matter of urgency. This is an important first step. The kind of support we affluent city folk expect to have when we’re given a diagnosis of an infection or a chronic disease.  It needs to be enacted in collaboration and consultation with Aboriginal and Torres Strait Islander peoples. Once again, governments already have experience with funding support networks. They are arguably better able to help this part of the process. They are needed here. It is expected of them.

Why should Australians have easy-to-access, subsidised testing for HTLV-1?

This is neither an exhaustive nor an expertly crafted list, but I think it makes the point:

• Because people are scared of the unknown.[3] Knowledge is power.
• Because awareness among health professionals and at-risk populations needs to be raised to improve care, diagnosis and reduce transmission.
• Because the scientific and medical literature on HTLV-1 is far from complete.
• Because there may be differences in transmission, virus survival, replication, disease manifestations and prognosis due to infection by Australian HTLV-1c compared to other HTLV-1 strains.
• Because we need to ensure that preliminary findings which suggest that adult T-cell leukaemia/lymphoma (ATL) and HTLV-1-associated-myeIopathy/tropical-spastic-paraparesis (HAM/TSP) are less common among HTLV-1-infected Australians compared to populations elsewhere in the world are solid.
• Because under-diagnosis can be reduced.
• Because transmission can be dramatically reduced.[16]
• Because contact tracing within communities can be conducted and long-term follow-up and support is then possible.
• Because research into antivirals, vaccines and drugs to treat diseases doesn’t get funded or products manufactured if the need is not clearly defined and the aetiology and pathogenesis not fully understood.
• Because we need an Australian public health strategy to combat HTLV-1 to ensure a well-resourced and ongoing program ensues.
• Because only a few people know of the virus and the extent and location of its presence, although arguably many more since the Guardian started to write on the issue a few weeks ago.[2-6]

Without proper testing we cannot diagnose, we limit awareness and traceability of the virus and its associated diseases, we cannot measure and then track genetic change and we won’t be able to see the effects from any future measures we deploy to reduce transmission and moderate or prevent disease.

We expect diagnoses and support.

In rich countries – of which Australia is one – we have a host of expectations when it comes to us or our relatives getting sick. We expect a diagnosis for one. We require of expertise that it has already created support networks and interventions and treatments. We put our faith that those in charge of these things have already considered these. That faith can be misplaced, but often isn’t.

Faith that such structures exist equally for all communities within our nation is most definitely misplaced. We see that again and again. Australia’s peak Indigenous and non-Indigenous health bodies, non-governmental organisations (NGOs) and human rights organisations have worked together since 2006 to create a plan to reduce the gap in health outcomes that exist between Aboriginal and Torres Strait Islander peoples and Australians of other descent. This gap is seen in higher rates of preventable illnesses among Aboriginal and Torres Strait Islander peoples, who die 10-17 year sooner. Their babies die at twice the rate of those born to parents of other descent.[8] 

Most Australians enjoy one of the highest life expectancies of any country in the world — but this is not true for Aboriginal and Torres Strait Islander people.[8]

The ‘Close The Gap campaign began in 2008.[7]. Its 2018 decadal review revealed that it has not lived up to any of its goals.[9] HTLV-1 provides a parallel example of unsatisfactory action and progress.

We wealthy big-city dwellers expect to get an answer when we go to a doctor. We expect a diagnosis. We probably also expect to be cured, despite that frequently being unrealistic. All Australians should be able to expect that.

You get diagnosed with other currently incurable diseases and virus infections, why not HTLV-1?

Technically, what we’ve been talking about here is using existing tests (yes, testing does already exist) to provide a laboratory result that confirms the presence of the virus, HTLV-1.

The current gold standard is to look for antibodies in a patient’s blood sample. The presence of these indicates recent or past infection with the virus. Antibody detection is the most common approach to diagnosing HTLV-1 infection. The laboratory can also detect signs of the virus in the lymphocytes through PCR-based techniques. These are highly sensitive and may sometimes detect an infection that antibody tests miss. I’ve yet to read a comparison of the two approaches.

We also receive disease diagnoses not just diagnoses of infection.

Looking to precedent, it is very clear that our medical professionals already pass along diagnoses of fatal diseases, chronic diseases, degenerative diseases, debilitating but not fatal diseases, diseases which will change our lives forever…you name it. For some diseases, we may have interventions that prolong life but do not really halt spread or progression. So, it’s hard to find evidence to support ant mantra that results in failing to provide a timely diagnosis of HTLV or an associated disease.

A non-exhaustive list of diseases, complications and life-altering events that fall broadly into the categories above was collated from a quick recent survey of my Tweeps. These include conditions following infections by viruses like Ebola virus, Hendra virus, Nipah virus, HIV, SARS-CoV, MERS-CoV, rabies virus, Australian bat lyssavirus, avian influenza, parechovirus, pan-resistant bacterial, and prions.

The list also includes non-viral (for today anyway) diseases: mitochondrial disease, ataxia-telangiectasia, type 1 diabetes, motor neuron disease, muscular dystrophy, cystic fibrosis, myalgic encephalomyelitis, fibromyalgia, repetitive strain injury, tinnitus, calciphylaxis ,rheumatoid arthritis, cerebral palsy, Parkinson’s disease, Huntington’s disease, ankylosing spondylitis, macular degeneration, Frontotemporal dementia , schizophrenia, autoimmune diseases, mesothelioma, pancreatic cancer, glioblastoma, diffuse intrinsic pontine gliomas, Progressive multifocal leukoencephalopathy, adult T-cell leukaemia, cystic fibrosis…and the list goes on.

What can we do about HTLV-1?

At the top of the list, we can stop making excuses for not doing more.

There is evidence that transmission of bloodborne viruses like HTLV-1 can be averted.[10] In studies from other countries, 80% of HTLV-1 infection is transmitted sexually, so condom use is important.

Transfusion and transplantation of HTLV-1 contaminated materials can be avoided.

Managing breastfeeding where safe to do so. As was pointed out to me last night by a paediatrician who works with children in some of these communities – with some fantastically specific detail for which I am most grateful – this item alone is an excruciatingly complex one.

The Twitter thread below from Dr Debbie Fearon is gold. It reminds us of some of the many issues around considering reducing breastfeeding in an under-resourced environment that has suffered from decades and decades of poor decision making. I wonder if we would see a local and international outcry akin to that which we have seen for HTLV-1 recently if outlets spent an intensive week detailing and investigating the issues within this thread alone…

There’s been some amazing work done with Indigenous people investigating the effect of this virus here. The blog entry posted above is a pretty good summary of things, although having been a kid’s doctor here for ten years, there’s a few more points I would make.

— debbie fearon (@debbie_fearon) May 25, 2018

Ensuring intravenous drug users have sterile needles is also important.

These are all actions with outcomes that can be beneficial, but must be carried out sensitively and alongside the community, within its wishes and accompanied by education.

There is no doubt the virus is in Australia – there is plenty of data. There is little doubt about how HTLV-1 is transmitted. We’ve known about another virus transmitted in similar ways for a similarly long time; HIV. With HTLV-1, it isn’t like we’re starting in the wilderness. The virus won’t go away by itself, it will only grow withtout intervention.

Today, the Australian Health Minister has announced the impending establishment of an $8 million taskforce of doctors, Aboriginal health organisations and all levels of government to focus on HTLV-1.[15] This is potentially fantastic news. But let’s watch carefully for the appearance of real outcomes.

They say actions speak louder than words. While it’s been the actions of just a few dedicated researchers that have so far defined the Australian HTLV-1 problem, more recently, it’s been words that have brought the problem into the light. Going forward, actions will be important.

References…

1. Highlights from the HTLV-1 symposium at the 2017 Australasian HIV and AIDS Conference held jointly with the 2017 Australasian Sexual Health Conference, November 2017, Canberra, Australia
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851185/
2. What is HTLV-1? The devastating health crisis afflicting central Australia
   https://www.theguardian.com/australia-news/2018/apr/24/what-is-htlv-1-the-devastating-health-crisis-afflicting-central-australia
3. ‘People are scared’: the fight against a deadly virus no one has heard of
   https://www.theguardian.com/australia-news/2018/apr/24/people-are-scared-the-fight-against-a-deadly-virus-no-one-has-heard-of
4. World experts call for Australia to act on devastating HTLV-1 virus
   https://www.theguardian.com/australia-news/2018/apr/28/world-experts-call-for-australia-to-act-on-devastating-htlv-1-virus
5. Treat HTLV-1 virus or risk it spreading widely, doctor who discovered it warns
   https://www.theguardian.com/society/2018/may/04/treat-htlv-1-virus-or-risk-it-spreading-widely-doctor-who-discovered-it-warns
6. Time to eradicate HTLV-1, World Health Organisation is warned
   https://www.theguardian.com/australia-news/2018/may/11/time-to-eradicate-htlv-1-world-health-organisation-is-warned
7. Close the Gap: Indigenous Health Campaign
   https://www.humanrights.gov.au/our-work/aboriginal-and-torres-strait-islander-social-justice/projects/close-gap-indigenous-health
8. Close the Gap – Oxfam Australia
   https://www.oxfam.org.au/what-we-do/indigenous-australia/close-the-gap/
9. Close The Gap – 10 Year Review (2018)
   https://www.humanrights.gov.au/our-work/aboriginal-and-torres-strait-islander-social-justice/publications/close-gap-10-year-review
10. http://gvn.org/who/
11. https://www.carergateway.gov.au/cancer?gclid=Cj0KCQjwlv_XBRDrARIsAH-iRJTKSqKL_0C3lJca8GKTUlnbXGc_ETyWeyiZkkXv8lMMq6Ra1WRKf5MaAkpxEALw_wcB
12. Us and them
    http://napwha.org.au/trials-research/social-research/us-and-them
13. The HIV Stigma Audit
    http://napwha.org.au/trials-research/social-research/hiv-stigma-audit
14. Living Invisible: HTLV-1-Infected Persons and the Lack of Care in Public Health
    http://journals.plos.org/plosntds/article/file?id=10.1371/journal.pntd.0001705&type=printable
15. Virus afflicting thousands of Indigenous Australians to receive ‘rapid action’, Health Minister Greg Hunt signals
    http://www.abc.net.au/news/2018-05-25/government-signals-rapid-action-on-deadly-virus-htlv-1/9797790?pfmredir=sm
16. Scientists are declaring war against a leukemia-causing virus that has infected millions
    http://www.sciencemag.org/news/2018/05/scientists-are-declaring-war-against-leukemia-causing-virus-has-infected-millions
17. Clinical Associations of Human T-Lymphotropic Virus Type 1 Infection in an Indigenous Australian Population
    http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0002643

UPDATES…

1. Minor edits; added in content related to Dr Debbie Fearon; new header image