More than 70 years ago, when Elizabeth Sunnyboy was a young girl living in the lower Yukon River village of St. Mary’s, two men knocked on the family door, told her father there was a plane waiting for him and whisked him away without explanation.
“We didn’t know why the plane was waiting for him. We didn’t know what was going on. My mom asked, ‘What’s going on?’ in Yup’ik. No answers, nothing,” said Sunnyboy, now 79 and a traditional healer with the Alaska Native Tribal Health Consortium. The family later learned that the reason was tuberculosis, and her father was getting treatment 1,000 miles away in Sitka. The disease wound up splitting the family, with Sunnyboy and a brother living at a mission in St. Mary’s, their father at the Sitka sanitarium and their mother and the rest of the family in Bethel.
Sunnyboy never saw her father alive again.
That experience, which Sunnyboy related at the Alaska Public Health Association’s annual summit held last week in Anchorage, showed how tuberculosis was treated up to the middle of the 20th century. At the time, it was the leading cause of death for Alaska’s Indigenous people, and they had some of the highest case and death rates ever measured.
Tuberculosis is a tiny shadow of the menace to Alaska that it used to be, but still a threat. The state consistently has rates that are two to three times the national rate. Now, Alaska is dealing with a surge, with active cases in 2022 about two-thirds higher than in the previous few years.
Alaska’s increase in tuberculosis is attributed to lapses in screening and treatment by a health care system that has been overwhelmed by the COVID-19 pandemic. It is part of a broader trend of COVID-linked health reversals that include, for example, a rise in syphilis in Alaska, delays in routine cancer screenings nationally and setbacks in the national fight against antimicrobial resistance.
In other ways, though, the increase in tuberculosis has some uniquely Alaska characteristics, including the deep reservoir of latent infections within the Native population that was devastated generations ago. Those latent infections can stay dormant for several decades before becoming active and contagious.
“We have our own strain of tuberculosis in this state that other states don’t have. We have this silent endemic disease that continues to linger, and it’s going to take a lot of time and effort,” Dr. Anne Zink, the state’s chief medical officer, said during a panel discussion focused on tuberculosis at the summit.
The surge is serious enough that it inspired a special afternoon-long workshop at the annual summit, in which providers discussed training and treatment strategies.
Overall, response to the new tuberculosis challenge will require more funding, Zink said. Increased funding will help pay for things like public health nurse salaries, better screening tests that won’t expire if plane traffic to rural Alaska is delayed by bad weather and portable X-ray machines “so people don’t have to fly in to get an X-ray and leave their home and their community.”
Gov. Mike Dunleavy’s proposed budget includes a request for $2.6 million specifically to respond to tuberculosis, Zink said. “That’s cool in a number. It’s only cool, in reality, if it passes,” she said.
Federal funding, however, can be less straightforward because it is often structured on a per-capita or block grant basis that does not match Alaska’s high rates and the geographic remoteness of the regions most affected, Zink said. The department and partner organizations are looking to numerous organizations, like the California-based Curry International Tuberculosis Center, as possible alternative funding sources, she said.
Other policy steps to help combat the tuberculosis surge are the same as those needed to improve health care in Alaska in general: investment in workforce development and education.
“The public health workforce is exhausted. The health care workforce is exhausted. And we’ve lost a lot of great people because of that,” Zink said. The state government itself is saddled with widespread vacancies, which translates to delays in necessary services and administrative tasks like applying for grants, she said.
As for education investments, Zink said there are many aspiring nurses in Alaska but a shortage of university faculty to teach them.
Keeping tuberculosis patients at home is important to modern practices.
Standard treatment is a mixture of antibiotics administered over a few months for latent cases and longer, up to 12 months, for active cases. To help people through that protracted process – and help them stay at home during it — Alaska makes use of what is called directly observed therapy, or DOT. Those therapists do not have to be fully trained medical professionals – they can even be family members, Zink said – but they need some training, which takes funding.
Among the reasons that DOT is important is that it helps ensure that infected patients complete their treatment fully, Zink said. Incomplete treatment can lead to the emergence of antibiotic-resistant strains, a dangerous occurrence that has happened in Alaska and elsewhere.
Along with making sure patients take medications and continue recovery on schedule, the DOT work can help ensure that other life needs are being met, Zink said.
A big improvement over past practices is modern open and full communication, panelists said. But that took decades to accomplish.
Evelina Achee, a Bethel public health nurse and tuberculosis team leader for the state Department of Health, said a lot of people in her generation did not even know about the disease because their elders had difficulty speaking about it.
“There’s so much trauma in that area. We had a hard time learning about our families because they wouldn’t talk to us,” said Achee, who learned about the history from her aunt, a former patient who spent 13 years away from home in sanitariums. “We didn’t know they were taken away.”
Sunnyboy agreed that communication has improved.
“Back then when it happened to our people originally, there was not a lot of talk about it. They just took people out of their homes, brought them to Sitka or wherever they brought people,” she said.
Those experiences contributed to lingering distrust, Zink discovered when she was only a week into her job and was doing an outreach meeting.
“They said, ‘You’re part of the government. You’ve never been a help. You’ve always hurt us.’ That was an eye-opening and very humbling moment,” she said.
This history needs to be considered when crafting current and future responses and policies, she said: “If we don’t think about our past, it’s going to be really hard to move forward.”
Sunnyboy had other advice, based on her family experience.
After two years of treatment in Sitka, her father was finally cured, but tragically died in an auto crash on the way to the airport to fly home to his family in the Yukon-Kuskokwim Delta. “TB didn’t kill him. A car accident killed him,” she said.
She gave her advice alternatively in Yup’ik and English. “I encourage everybody, before you leave your homes in the morning before you go to work, always tell your partner, ‘I love you,’ always tell your children, ‘I love you,’ because you never know. That might be the last statement you make to your partner or children,” she said. “We need to share this often with each other, that lesson I learned because my dad was taken away without us saying that to him.”
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