“I started Googling. I knew nothing about it whatsoever,” said Asha Kurian-Farris, George’s daughter, who is based in California.
“It was amazing to me that it had been around, or at least people had known about it for 40 years at this point, but there’s just not much outside knowledge of it,” she said.
The first detection and isolation of HTLV-1 was in 1979, and the discovery was published in 1980. Decades later, in 2015, Kurian died of his cancer, which doctors believed was caused by the virus. Now, Kurian-Farris says she knows that her father — a man from Kerala, India, with a big heart and a big love for science — would want more awareness raised about the virus.
“He was just hoping that he could contribute knowledge to this larger puzzle,” said Kurian-Farris, who is HTLV-1-negative and suspects that the virus was transmitted to her father from his mother. The virus can spread from mother to child, particularly through breastfeeding.
‘I don’t blame WHO at all. I blame us’
The strategies include testing for HTLV-1 in sexual health clinics, testing for the virus in blood and organ donations worldwide, testing in routine prenatal care and advising against breastfeeding by infected mothers.
“We need WHO to make noise on this, to be aware of it, to make sure all health communities know about it, to push testing for it, et cetera, and we need (the US National Institutes of Health) and others to promote funding for it to make up for lost years of poor funding,” said Dr. Robert Gallo, co-founder and director of the Institute of Human Virology at the University of Maryland School of Medicine, whose laboratory was the first to detect HTLV-1.
“It’s time to really correct that,” he said.
A family comes face-to-face with HTLV-1
A first sign that Kurian was carrying the HTLV-1 virus emerged in the form of mouth sores, his family said. He visited a dentist and his doctor, but the sores came and went every few months.
Kurian’s doctors took a closer look. They noticed a high white blood cell count and continued medical testing. They found HTLV.
In the days after Kurian’s diagnosis, his family searched for treatment options.
Now, they hope his story illustrates the need for more research.
‘They’ve been orphaned’
There is no cure and no vaccine for HTLV-1, but some scientists around the world are hoping to change that.
“Our research group has primarily focused on trying to better understand how HTLV-1 replicates, with the ultimate goal of trying to develop new therapeutic strategies to prevent virus spread and transmission — and that’s one of the open areas that’s not been well-supported globally,” said Louis Mansky, a professor and director of the Institute for Molecular Virology at the University of Minnesota, who was not involved in the new letter.
“The number of researchers is fewer than you would expect for such an important human infectious agent that causes cancer, as indicated in the open letter,” he said. “The awareness of it and the support for research to better understand its prevalence, and for treatment of the viral disease, has lagged behind compared to some other viruses: HIV, hepatitis B virus, hepatitis C virus.”
HTLV-1-infected patients often contact Mansky’s lab, seeking new developments in treatment, and so he has seen their plight first-hand.
“Infected patients and loved ones feel as if they’ve been orphaned,” he said. “So for those who are not infected or they do not know somebody who is infected, it may not have an impact on their lives, but when it’s you or a loved one, it can make all the difference in the world.”
Although the virus can be found throughout the world, there are certain endemic areas, such as the isolated cluster in central Australia.
Elsewhere in the world, such as in the United States and the UK, prevalence remains low.
‘I do believe it is possible to eradicate HTLV-1’
More research is needed to determine the true global prevalence of the virus, Gallo said, adding that he wonders about prevalence in other regions in the Middle East, Africa, Russia, China and South America.
“So, there are still unknowns. This has been a way under-studied and a way underfunded problem,” he said, adding that there are several reasons why HTLV-1 has become a neglected virus.
“The major reason has been that it doesn’t efficiently transmit. Even though its mechanism of transmission is very much the same as HIV, it’s much less efficient,” he said. “And it’s maintained itself in certain populations,” where not much medical attention has been provided.
Many regions around the world affected 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.
“I believe that now is a critical time to support continued research and application of that research to take us over the goal line in the fight against this deadly virus,” said Susan Marriott, a professor in the Department of Molecular Virology and Microbiology at Baylor College of Medicine in Houston, who was not involved in the open letter.
With additional work, she believes, it is possible to eradicate HTLV-1 around the globe, but it will be difficult.
“First, the virus may not be detected until a patient shows signs of disease, which can be 40 or more years from the time that they were infected. During these 40-plus years, an infected person can unknowingly spread the virus to others,” Marriott said.
“Second, some of the people who are most affected today live in remote parts of the world with minimal access to early detection options and state-of-the-art health care,” she said. “I do believe it is possible to eradicate HTLV-1 from the world population, but it will be a challenging task.”
News credit : Cnn