B is talking about a sickness that has killed her family member and
is a potential tragedy facing Aboriginal communities in central
Australia, who have the world’s highest rates of a fatal, human immune
virus for which there is no current cure, no treatment and no
coordinated public health response.
Human T-lymphotropic virus type 1 (HTLV-1) is transmitted through
sexual contact, blood transfusion and from mother to child by
breastfeeding. It can cause a rapidly fatal form of leukaemia. Some
people die within weeks of diagnosis. HTLV-1 also causes inflammation of
the spinal cord leading to paralysis, severe lung disease known as
bronchiectasis and other inflammatory disease.
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.
Despite its high prevalence here, HTLV-1 is considered by the world
to be a neglected virus. Its obscurity is such a source of shame that
this softly spoken grandmother agreed to talk to Guardian Australia on
condition that we don’t use her name or reveal where we are sitting.
“People are scared,” B says. “We should work quietly, telling people
in language. We should show love and care to people who are sick.”
Researchers say HTLV-1 is more widespread across central and northern
Australia than previously thought. Dr Lloyd Einsiedel is an infectious
diseases clinician with the Baker Heart and Diabetes Institute based at
Alice Springs hospital.
“We cover all the way out to the western desert and we have patients
from northern South Australia, and it’s endemic throughout our entire
catchment area of a million square kilometres,” Einsiedel says.
“So it’s very suggestive that we have a major problem and it really
pays no attention to borders, these very artificial constructs of
Europeans.”
Einsiedel worries there will be “significant mortality” over the next
five to 10 years from HTLV-1 related bronchiectasis (lung disease). The
region already has the highest reported prevalence of adult
bronchiectasis in the world.
Einsiedel says testing and treatment are a priority. There also needs
to be a public awareness campaign in Aboriginal languages, and all
remote area health workers need to be educated too.
However, HTLV1 presents a unique set of problems.
First, the world doesn’t know enough about it. In the early 1980s,
HTLV-1 and HIV were discovered around the same time but HIV was a major
global emergency that rightly got attention. HTLV-1 was thought to be
asymptomatic; people might carry it their whole lives and never show any
adverse effects. Five to 10% of patients might develop fatal lung
disease or leukaemia in later life but most would be fine. A map of the
world’s HTLV-1 hotspots reveals another clue as to why it’s so
neglected.
“There are close to 20 million people affected and they don’t live in
Sydney or Tokyo,” Einsiedel says. “These are people who overwhelmingly
live in Papua New Guinea, the Congo, Peru. They’re the poorest members
of society. In terms of drug companies and media interest, there’s very
little in the way of advocacy.
“Even if it didn’t cause anything else, I suspect we would have dealt
with the problem before now if it was in Sydney,” he adds wryly.
Einsiedel sees this disinterest as a major barrier to research funding.
“We need the NHMRC’s support to address this issue.”
“People are dying now. It’s associated with death, this virus. If you
can’t control the amount of virus in your blood, you’re at risk of very
bad outcomes.
“We could move now with a public health message around HTLV-1 and sexual transmission.
“Then we need to look after the people already infected. That means
we need to give them clinical support and we need to stratify risk so
that we’re not frightening people.”
In central Australia, “stratifying risk” means testing to identify
not just who has HTLV-1 but their viral load. The higher the amount of
virus in the bloodstream, the greater the risk of serious complications
like lung disease.
The six-month wait
Which brings us to problem two. The HTLV-1 blood test is not covered
by Australia’s medical benefits scheme (MBS). It costs $169 each time it
is performed, there is only one HTLV-1 laboratory in Australia and
results can take six months to come back because, at present, these are
done as part of a research program. All the testing Einsiedel and his
team have done so far – more than 900 people – they have paid for using
an NHMRC project grant.
Arrernte man Joel Liddle is a senior research officer with Baker. He
spends much of his time talking with people in their primary languages
(he is learning Arrernte language), taking blood, measuring lung
capacity and delivering “feedback” (test results) as kindly and
respectfully as he can. When he is not on the road, he is writing
research papers or he is in the lab, prepping blood samples.
“The length of time it takes to get a test is a major problem,” he
says. “We’re not currently funded for the testing process and there’s
only one place in Australia that’ll do a HTLV-1 test, and that’s in
Melbourne.
“If you or I go to the pathologist, we want our results back in three
days. But for an HTLV-1 test we’re looking at six months-plus
turnaround. It’s not a priority, its not on the MBS, it’s something we
have to be hugely mindful of when we’re going bush, that people want
their results. This is something that needs to be immediately examined
as a priority.”
Could the federal government make the test available on the MBS? Einsiedel smiles ruefully.
“I hope that will happen. I hope,” he says. “I spend most of my life in hope.”
‘Can we Google this?’
Making health professionals aware of HTLV-1 is just as urgent. Shane
Schinke is research manager at Baker. He joined the team in May last
year, after spending 11 years as a remote area nurse in the western
desert. At the end of 2016, he found he had trouble walking, and the
symptoms grew steadily worse.
Schinke came to Alice Springs hospital, where Einsiedel tested him for HTLV-1.
“Then I was sent from Alice Springs to Adelaide. I won’t name
hospitals because they were really good. They were looking at everything
and couldn’t find anything.”
While in Adelaide, the results arrived: he was HTLV-1 positive.
“Once we had the result, the specialists were basically at my bedside
going ‘oh, can we Google this?’” he says. “These are specialists and
they hadn’t heard of it, I hadn’t heard of it and a lot of people in the
health profession haven’t heard of it. Quite frankly, had I not been
here in Alice Springs, I wouldn’t have even had the test. I still would
not know that I’m HTLV-1.”
Schinke is in a wheelchair these days.
“It’s caused a spinal cord injury for me, so I can speak from my own
experience, but I’m interested to bring awareness. People say HTLV-1
exists but it doesn’t do anything … and they even say it to my face.” He
gestures to his chair. “And I’m going OK, well maybe I’m just dreaming?
“I’m the only caucasian I know in Australia who’s diagnosed HTLV-1
but how do we know that? We’re not testing. So I’m very careful not to
stigmatise Aboriginal people with ‘it’s a blackfella disease’. We had
that same thing with HIV – it was a ‘gay disease’ – and people would
stigmatise.
“If this was affecting non-Aboriginal people we’d have a completely
different spin on it. From my perspective, even if I was the only guy,
I’d be doing something about it because my quality of life has been
affected. Irrespective of what’s going to happen with the virus, I have a
spinal cord injury. Had there been an early detection we could have
stopped the process before it got to my spinal cord, so there’s a lot we
can do in the prevention phase.
“There’s a massive problem out there but it’s not as hopeless as it
might sound. If we have the right circumstances, equipment and early
detection there’s a lot more we can do.”
Liddle agrees. He thinks there should be an HTLV-1 clinic in central Australia.
“While we don’t have those things, there’s only so much we can do,
and we’ve only got a small team. But that’s why we’re here, because
we’ve spent enough time travelling bush to know that something is not
right, and we care enough about it to do something.
“I’ve been travelling bush for 10 years, all through the NT, SA and
WA, and in my own Aboriginal family I see firsthand all this ill
health,” he says, explaining that HTLV-1 thrives in conditions where
environmental health is so poor.
“We’ve got people in their 20s on dialysis. Who’s on dialysis in
their 20s? It seems like everyone’s got diabetes, high blood pressure
from their early 30s, lung disease – all of this stuff is rampant and …
Unfortunately we know that because we’re remote here and it’s happening
to Aboriginal people, so it’s out of sight, out of mind a lot of the
time.”
The breastfeeding conundrum
The only other first-world hotspot for HTLV-1 is Japan. How it took
hold there is still a mystery but it was first discovered in the 1980s,
and the main form of transmission was from mother to child through
breastfeeding. Researchers found that, for the first six months, a baby
was protected by her mother’s antibodies but, as those antibodies were
lost, the risk of transmission increased exponentially. In Japan the
current advice for mothers with HTLV-1 is not to breastfeed at all or to
do so for less than three months, but in resource poor areas this is
thought not to be appropriate. Through rigorous testing and public
education, Japan has reduced its transmission rate by 80%.
That kind of approach may not work in central Australia. It certainly
runs counter to the popular mainstream message that “breast is best”,
and it raises questions about how mothers feed their babies in remote
communities where nutritious food is expensive and hard to come by.
Culturally, breastfeeding is a big part of how children are cared for.
Liddle says: “We see children breastfed until they’re four and five
years old around here.”
Central Australian Aboriginal Congress is the largest Aboriginal community-controlled health organisation in the https://www.theguardian.com/australia-news/northern-territory" rel="nofollow - Northern Territory .
The last thing Congress wants is for mothers to stop breastfeeding out
of fear. Its CEO, Donna Ah Chee, says a “potentially devastating”
problem like HTLV-1 requires a careful response, one that is devised and
led by Aboriginal people.
“As any mother in any culture in the world would know, the prospect
of unknowingly causing harm to your child through this virus is beyond
understanding,” she says.
“For this reason we cannot allow a hysterical response, let alone for
it to become yet another item of negative, deficit reporting of our
people.”
To avoid mass panic – and for there to be any chance of success – Ah
Chee says the response must be culturally safe and community-led. There
might need to be changes to health screening, doing it “the right way so
it doesn’t make people feel shame”.
“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 says.
“And we have to do it very carefully. What we don’t want to happen is mothers who stop breastfeeding.”
The need to avoid panic has been always been the cause of trepidation
for researchers who have tried to tackle HTLV-1 in the past, and why
the virus never seems to leave the too-hard basket.
Prof John Kaldor from the Kirby Institute for Infectious Diseases has been tracking HTLV-1 and supports Einsiedel’s work.
“The research community has known about HTLV-1 for decades but
there’s been considerable uncertainty about how to respond to it among
many competing health priorities,” Kaldor says. “New research is
starting to clarify who is most at risk of disease progression and
should be harnessed to develop prevention and treatment guidelines.
“The public health dilemma is how to develop guidelines and do
research in a way that supports affected individuals and communities.”
Vaccine research overdue
Slowly, the world’s virologists are coming to admit they could have done more, and now is the time to make amends.
Dr Robert Gallo is the director of the Institute of Human Virology at
the University of Maryland’s school of medicine, and one of the world’s
most eminent scientists. In 1984 he co-discovered HIV, helping prove
the link between HIV and Aids. He discovered HTLV-1 at the same time.
Late last year he spoke about HTLV-1 at a Melbourne meeting of the
International Global Virus Network, a group of world leading
virologists.
“I think it’s time to be a bit more muscular for HTLV-1, this virus that’s been forgotten about,” he says.
“You might ask, why isn’t there a vaccine against HTLV-1? I don’t
know how hard it’s been tried. We never did. I heard they’re trying in
Japan. But we need to stimulate more governmental involvement, we need
to push the importance of the disease, the seriousness of it. We could
do much better. We need to do significantly more with HTLV-1.”
The
Japanese have developed an antibody that will target the affected cells
and destroy them, delivered via an injection every few months. A
clinical trial is underway. Einsiedel hopes maintaining links with his
counterparts in Japan will pay off, because that’s where treatments will
be developed.
He hopes he will find funds to continue his work. A spokesman for the
federal health minister, Ken Wyatt, told Guardian Australia: “The
government has allocated $6.1m to the Central Australia Academic https://www.theguardian.com/australia-news/health" rel="nofollow - Health Science Centre, with its first priority project to be a study addressing HTLV-1.”
Out on the edge of the riverbed, it’s gone midday. The sky is an
uninterrupted, brilliant blue. It is a beautiful, silent place, watched
over by tall river gums. A few wild horses graze on distant pockets of
grass. It is hot, though, and we are done sitting on this upturned log
in the bright sunshine. B pauses before she stands.
“In the past, all our people been dying with this thing,” she says.
“We need more medicines for our kids’ future too. We want strong people
to be speaking up to the health department and governments to give us
money to fight this – or Aboriginal people won’t have a future.”