When many Americans think of tuberculosis, they imagine a disease of the past — a relic of the Victorian Era, long since relegated to history books. But for the students, professors and activists gathering in Washington, D.C. on April 8 and 9, the tuberculosis disease is a present and pressing global crisis. 

Among those advocates is a small but passionate delegation from Brandeis, joining what is expected to be the largest tuberculosis-related congressional lobbying event in United States history. The effort, coordinated by the grassroots organization TB Fighters in collaboration with Partners In Health and Partners in Health Engage, involves over 200 meetings with congressional offices.

The mission is clear: secure increased federal funding for tuberculosis programs, protect those programs from budget cuts and change the narrative surrounding a curable disease that continues to kill over one million people each year. “I think one of the things that shocks people is that we’ve had a cure for TB since the 1950s,” explained Hana Miller ’25, co-president of the university’s chapter of PIH Engage in an interview with The Justice on April 4.

According to the World Health Organization, in 2023 alone, 10.8 million people contracted tuberculosis and an estimated 1.25 million died. “TB is a disease of poverty,” Miller emphasized. “It has become really clear that it is a choice to share the drugs and the resources that we have for this disease … It is affecting those who don’t have these resources, and that’s really unfair, and that’s also really dangerous in terms of what we know about biosecurity, about global health.”

The Brandeis delegation includes Miller, professor and Stop TB USA board chair Dr. Cynthia A. Tschampl (Heller) and Brandeis alum Noah Risley ’23. Their presence is part of a broader effort to ensure all 50 U.S. states are represented by constituents in the Hill meetings. Shampel “was a global health advocate fighting for an end to TB (starting in 2001) with a great anti-poverty grassroots group called RESULTS,” she told The Justice on April 6. “Then [she] moved to Boston, learned about TB in Massachusetts and was appointed to the Mass. Medical Advisory Committee for the Elimination of TB.” She explained that following all of this experience and the intersection “with health equity and economics and all the issues we study at The Heller School, it made sense to do TB research as well.”

The team’s involvement in Hill Day is rooted in the work of PIH Engage, the student and community-led advocacy arm of the Partners In Health organization. Unlike many aid organizations, PIH is known for its model of “accompaniment” — a philosophy of standing in solidarity with communities, rather than parachuting in with temporary solutions.

“PIH doesn’t do what I call ‘helicopter care,’” Miller explained. “We don’t fly in, hand out medicine, take a few pictures, and leave. We stay. We build infrastructure. We train local health workers. We embed ourselves in communities, and we don’t leave until those systems are strong enough to function without us.”

In addition to direct care, PIH Engage members focus on political advocacy, working to influence public health policy and secure legislative support for global health initiatives. The group’s recent advocacy helped push the End Tuberculosis Now Act — a bill focused on tuberculosis research and treatment — through the Senate, with rare bipartisan backing.

“To have a health bill co-sponsored by both a progressive Democrat and a very conservative Republican? That’s almost unheard of these days,” Miller said. “But it happened. And that gives us hope.”

The Hill Day effort has received a major visibility boost from an unlikely source: bestselling author and YouTube personality John Green. Green, who has a long-standing interest in global health, published a book on March 18 titled “Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection.”

More than just a public figure and author, Green has become a leading public voice in tuberculosis advocacy. His influence helped launch TB Fighters, a volunteer-led movement now partnering with major public health organizations. Green’s fans — often young, politically engaged and internet-savvy — have mobilized to write to their representatives, attend training sessions and join the push for change.

The Hill Day participants, including those from Brandeis, spent weeks preparing for their meetings with congressional staff. That preparation involved policy briefings, message framing and extensive training in how to speak with elected officials and their aides — many of whom, Miller noted, are just a few years out of college themselves.

“We’re not walking in and winging it,” she said. “We’ve got a team of experts — including Dr. Shampel — who can explain the science. We’ve got talking points tailored to each district. And most importantly, we’ve got stories — personal stories. That’s what moves people.”

That personalization has already paid off. When the Arkansas delegate originally scheduled to attend had to cancel, Miller reached out to Risley, a Brandeis alum from the state, who immediately agreed to step in. “That’s such a Brandeis thing to do,” Miller laughed. 

Still, the work is not without obstacles. In an increasingly polarized political climate, advocacy around global health — especially funding for international aid — has become more difficult. “We’ve definitely had to shift our messaging,” Miller acknowledged. “There are representatives who used to be strong supporters of this issue, but now feel they can’t publicly back it anymore, because of optics or party pressure.”

To navigate that landscape, the team has reframed their arguments to emphasize national security, economic efficiency and public health preparedness. “If COVID taught us anything, it’s that ignoring infectious diseases only makes things worse,” said Miller. Shampel emphasized that one of the team’s main goals for Hill Day is to lead to “restoration of all USAID programs recently and unilaterally cut off, despite all lives it will cost and all the disadvantages to the United States.”

While the Hill Day represents a high point in the campaign, organizers say the work won’t stop when the meetings are over. One of their long-term goals is to change how the public — and policymakers — talk about tuberculosis.

“People still think of it as ‘consumption,’ this old-timey illness from the 1800s,” Miller said. “But there are over 10,000 cases in the U.S. every year, and that number is rising. If we don’t act now, it’s only going to get worse.” They also hope to build lasting relationships with congressional offices, ensuring that tuberculosis remains on the policy radar beyond this one-day event.

Above all, the advocates want to drive home one message: every death from tuberculosis is preventable — and therefore unacceptable. “Paul Farmer, the co-founder of PIH, used to call them ‘stupid deaths,’” Miller said. “Deaths that happen not because we didn’t know what to do, but because we chose not to do it. We chose not to care enough.”

“That’s what this fight is about. It’s about justice. It’s about equity. And it’s about making sure that no one dies just because they were born in the wrong place or the wrong zip code.”

As the Brandeis delegation prepares for a full day of back-to-back meetings in the Capitol, they remain grounded in a sense of collective purpose.

“I’m not leading this,” Miller insisted. “I’ve just been lucky to be part of it. This is a team effort — just like the fight against TB has to be. No one can do it alone.”