The Incurable, Mysterious Disease Ravaging Australia’s Indigenous Population
HTLV-1, the most lethal human-immune virus known, is capable of killing people within weeks—but it’s not getting the public-health attention it deserves.
The Australian indigenous population is being hit by HTLV-1, the most lethal human-immune virus known thus far, with “no current cure, no treatment and no coordinated public-health response,” according to a report in The Guardian.
An acronym for human T-lymphotropic virus type 1, HTLV-1 is related to other diseases like T-cell lymphoma. The disease is transmitted similarly to other human immune retroviruses: through sexual contact, blood transfusion, and via breastfeeding. In some cases, it can very quickly transform into leukemia.
The infection is vicious. It can kill people within weeks—or inflame the spinal cord, rendering a patient paralyzed. It can also lead to a series of painful inflammatory diseases like bronchiectasis, a condition that affects the mucus-clearing system of the lungs and makes it difficult to breathe.
What’s especially odd and frightening about the disease, however, is the fact that it’s attacking the indigenous population at higher rates than others—and not much is being done about it.
Despite its higher rate of incidence among the indigenous population, it’s a disease that hasn’t seen much in terms of blaring headlines and public-health initiatives. According to The Guardian, the reasons are twofold: There’s shame associated with having the disease given its sexual transmission, and because it has a mostly aboriginal patient base, it’s lacked public-health attention for years.
Those with HTLV-1 are often ostracized and ignored, left to suffer by themselves without proper medical attention. “People are scared,” a woman who goes by B told The Guardian. “We should work quietly, telling people in language. We should show love and care to people who are sick.”
The disease also remains mysterious. It’s thought to have existed among aboriginal populations for at least 9,000 years. Discovered in Japan in 1977, the virus is unlike most that doctors know of. While it's incurable, 90 percent of patients are asymptomatic. Twenty million people worldwide are thought to carry HTLV-1, but the virus itself can show up in a range of corollary diseases. One of those is LUNG. Scientists aren’t quite sure why the virus acts the way it does and shows itself in unpredictable ways; a 2010 study in the journal Clinical Microbiology Reviews suggests that HTLV-1’s persistence in a class of lymphocytes known as CD4+ might be why HTLV-1 expresses itself so broadly.
But how it acts—whether it’s the virus acting on the immune system, or a consequence of the immune system attacking the virus—is not known. A screening process was developed in 1986, and in 1993, blood donors started to be screened for the virus.
But these preventative measures have not stemmed the rise of the disease. In fact, researchers are now worried more than ever that the disease could blow up into a silent epidemic of epic proportions. Lloyd Einsiedel, an infectious-diseases clinician, told The Guardian that he fears the death rate from HTLV-1 could prove to be “significant,” with a sharp rise in adult brochiectasis (Australia already reports the highest rate of adult bronchiectasis in the world).
There’s reason to believe the disease is actually further along and more deeply embedded within Australia than we know of, particularly because HTLV-1 is a hidden disease. Indeed, HTLV-1 was discovered around the same time as HIV, the latter of which received the vast majority of the world’s attention. There’s also the fact that HTLV-1 almost always is asymptomatic, with many people carrying the disease their entire lives without showing any sign or facing any medical trouble.
Nearly half of aboriginal Australians carry the virus—but it’s not just Australia that is dealing with it, Einsiedel told The Guardian.
“There are close to 20 million people affected and they don’t live in Sydney or Tokyo,” he said. “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.”