The man had died three years prior. His widow was seeking about $700 a month in benefits under the Black Lung Benefits Act, a federal law allocating money to miners who suffer from pneumoconiosis or black lung disease.
“We were discussing all the problems that the widow had gone through, and that hit home very hard to the people who participated in the program,” said Dr. Akshay Sood who had launched Miners Health ECHO shortly after moving to New Mexico.
When Sood moved to New Mexico, he was quickly overwhelmed by patients, many of them former uranium miners who were suffering from radiation exposure and couldn’t find a single physician who would accept their federal benefits card. Many of the patients came from Latin America or were from rural isolated communities. Some didn’t speak English.
Miners Health ECHO is different from traditional telemedicine: Whereas telemedicine supports a one-to-one transactional visit between a patient and a physician, telementoring supports a community of learners.
While a number of the leading research universities with strong name recognition offer training in lung diseases, many are not congruent with the rural populations that need them most, Sood said.
“The best programs exist at Harvard, at Yale, at Seattle, at Emory,” he said in an interview with the Daily Yonder. “The need is in places like New Mexico, Montana, Wyoming, Utah.”
Some of the most well-intentioned researchers and academics working also don’t quite understand what rural people really need, he added.
“When you work in rural communities, you realize that rural people have a shortage of resources, but they don’t have a shortage of innovation,” he said. “And they innovate with what they have, and they do a really, really good job at it. And homegrown solutions are incredible, and you have to learn from them.”
And sometimes it’s giving space to people who may otherwise be unable to have a voice. Miners, Sood said, often come from underrepresented and underresourced populations. They lack advanced degrees, and in New Mexico, more than 70% come from minority backgrounds, he said.
A typical program starts with an introduction and announcements, Sood said, which lasts about five to 10 minutes. An expert usually speaks for about 15 minutes, followed by questions and answers for 20 minutes. That is followed by a case discussion, which takes about 30 minutes. Finally, the case is summarized and notes are exchanged, with the program lasting about 75 minutes.
“There’s geographic diversity,” he said. “There’s cognitive diversity, so it’s relevant to all stakeholders. Otherwise, what happens is that the two stakeholders that take up a lot of a lot of verbal space are physicians and lawyers. And so we have to make sure that there’s adequate space for other stakeholders to articulate their opinions.”
Specialized medicine is often expensive, and is typically distributed in populated areas and close to more affluent populations, said Bobbi A. Gore, program manager with Black Lung & Outreach at Miners’ Colfax Medical Center in Raton, N.M.
“Miners who need specialized services are often in rural and less affluent communities,” Gore said in an email interview with the Daily Yonder. “Telemedicine overcomes this bias, and encourages distribution of specialized medicine to miners that would otherwise be unserved or underserved.”
“These are real problems real people face,” Sood said. “They’re very few people who want to deal with the compensation system, because, typically, they’re complicated. You don’t get compensated for filling out all that paperwork… It’s very clear that you can’t help a miner with chronic disease without addressing the compensation benefits issues as well.”
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