Yet “nobody that I know of in the world has done anything about trying to treat this disease before,” said Gallo, who is also co-founder and scientific director of the Global Virus Network and chairs the network’s HTLV-1 Task Force.
“There’s little to almost no vaccine efforts, outside of some Japanese research,” he said. “So prevention by vaccine is wide open for research.”
An ‘extraordinary’ prevalence in remote Australia
“But if we look globally, we know about HTLV-1 in a number of countries,” he added.
HTLV-1 is present throughout the world, but there are certain areas where it is highly endemic, such as the rare isolated cluster in central Australia.
Elsewhere in the world, such as in the United States and the UK, prevalence remains low.
“The interesting thing about central Australia, of course, is you can go back 25 years, and the high rates of HTLV-1 were published 25 years ago in that community,” Taylor said.
It’s unclear whether the sample in that old study was of the same population currently experiencing a higher prevalence rate, and it’s unclear whether that previous rate was measured with similar methods used to assess prevalence today.
Nonetheless, the current prevalence rate, exceeding 40%, is “extraordinary,” Taylor said.
“It’s causing a problem of bronchiectasis. People are dying of bronchiectasis in association with HTLV-1 infection, and what is the response? If you can’t see a response, then you might say it’s neglected,” he said. “The virus is neglected, and the diseases that it causes are neglected.”
The reason why HTLV-1 prevalence in an already endemic area is exceeding 40% remains something of a mystery, Gallo said.
While musing on possible reasons, he questioned whether the HTLV-1 seen among indigenous communities in central Australia could be a variant that transmits more easily.
“Nobody knows that either,” he said. “That’s possible.”
However, he added, there is no reason for the rest of the world to be concerned about the virus spreading more widely.
Likely, “this virus, I don’t care what the variation is, will not transmit casually,” Gallo said.
“In short, I would not be afraid to use towels, drink out of the same glass, be part of the family, et cetera,” of an HTLV-1 positive person, he said. But he added that the virus certainly can transmit through breastfeeding, blood contact and sex.
‘We have to make up for what we didn’t do before’
On the other hand, why the HTLV-1 virus has been neglected in certain regions — especially Australia’s indigenous communities — appears to be not as mysterious.
Many regions around the world impacted by HTLV-1 are poorer communities that often go overlooked by the medical establishment and don’t have as many health care resources, Gallo said.
Around the world, there appear to be not many efforts to screen for HTLV-1, Taylor said. For instance, few countries have antenatal screening programs for it.
“Then, you have the situation where blood which is infected with HTLV-1 can be given to a recipient, an organ can be given to a recipient,” he said. “So there are public health issues.”
Additionally, just a few years after HTLV-1 was discovered, HIV was identified for the first time. Between HTLV-1 and HIV, the latter got the most attention, Gallo said, partly because HIV is more efficient at transmitting.
Now, “we have to make up for what we didn’t do before,” he said. “We have to get attention to HTLV-1 quick.”
In other words, the high prevalence of HTLV-1 in central Australia has become something of a wakeup call for the world to do more to prevent and reduce infections from the virus.
“There’s a lack of knowledge about HTLV-1,” Taylor said.
Source : Nbcnewyork