As tuberculosis outbreaks pick up speed in the US and abroad amid deep cuts in funding for local, state and international public health programs, a resurgence of the deadliest infectious disease – including drug-resistant tuberculosis – could be on the horizon.
Increasing funding for public health responses could end tuberculosis (TB) altogether, says James Brookes, an IT specialist from Idaho, who told this to his representatives in Congress on Wednesday.
Unlike many advocates, Brookes has no personal connection to tuberculosis. No one he knows has gotten it, and it was not top of mind until fairly recently.
But he has followed John Green, the prominent vlogger and author, and his brother, Hank, on social media for nearly two decades now. When Green created a group called TBFighters, Brookes joined; after Green, along with the non-profit Partners In Health, asked for volunteers to travel to Washington DC, to participate in a TB Hill Day, Brookes booked flights and a hotel.
“I’m looking for a way to help in any way I can. I can help here. I can do this,” Brookes said. “We’re a global community, and how the least of us is doing in the world impacts how the best of us is doing.”
About 250 TBFighters gathered in Washington this week to learn more about advances in TB testing, treatment and prevention and to attend a total of 210 meetings with senators, representatives and legislative aides representing 49 states on Capitol Hill.
Organizers were stunned by the response. Last year, only 35 or so advocates attended a handful of TB Hill Day meetings.
Tuberculosis has long suffered a PR problem. Despite impressive advances in treatments and progress toward effective vaccines, it has been championed by only a few dedicated people in the field.
But John Green, as close to a celebrity as authors can get, wants to change that.
“We know how to live in a world without tuberculosis, and that means, ultimately, that we’re choosing to live in a world with tuberculosis,” he told TBFighters on Tuesday – an argument underlying his new book, the bestseller Everything Is Tuberculosis. “But all of y’all are making a different choice. And that is my great encouragement.”
While there’s an effective cure for TB, developed in the 1950s, it has persisted. It’s now known as a disease of poverty that tends to hit hardest among people living with HIV or malnutrition and those with unstable or crowded housing.
“We should have eliminated this scourge decades ago,” Green said.
Kate O’Brien, a television producer, became a TB advocate after contracting the illness in New York while pregnant with her son. She still doesn’t know how she got it.
“I truly, truly believe that eliminating this disease is possible,” O’Brien said. “It’s just a little fucking money.”
Recent cuts to public health efforts – including the US Agency for International Development (USAID), the US Centers for Disease Control and Prevention (CDC) and local and state heath departments – have possibly set back progress on TB by years or decades.
Nick Enrich, a former deputy administrator at USAID, estimated in an agency memo projections of a 28-32% increase in TB cases globally, including drug-resistant TB, which becomes more of a risk as people are unable to access care.
“We are looking at a world whereby, two years from now, 2 million people will die of tuberculosis, instead of 1.25 million,” Green said. “This is getting worse, not better, and I really, really hate it when we have the ability to make something better and we let it get worse.”
after newsletter promotion
For his part, Green and the TBFighters had recent success pushing to lower prices of the drug bedaquiline and diagnostic tests.
“I’ve mobilized them, but they’ve also mobilized me,” Green said. They developed a 100-page document about how to respond to the crisis. “I think probably most people weren’t aware of tuberculosis, but when they became aware of it, they became very angry, like I did.”
Like Green, Brookes found the more he learned about tuberculosis, the more important it is to fight to keep everyone safe.
“It is the number one infectious disease currently and throughout history, and the only thing stopping us from eradicating it is logistics? Let’s end TB and start working on the harder stuff,” Brookes said.
Before this week, he was involved in some local activism; his daughter has cerebral palsy and autism. He is hoping the skills he’s learned now will translate into more advocacy for people with disabilities.
“I didn’t know how easy it was to just reach out to my senators and be like: ‘Hey, can we have a meeting?’ And they just say ‘Yes’?” he said, in disbelief.
Of his daughter, Brookes said: “This is one piece of a larger picture for us just to learn how to advocate for and make a better world for her. The better the health outcomes are for our community and for the world, the more protected she is.”
Brookes was nervous as he walked into the US Senate and House buildings, donning a suit and a pin that read “TB is not over”.
The meetings went much better than he expected. He is now following up with Partners In Health to send more information to his Congress members.
“In a lot of ways, this trip is just the beginning,” he said.
