Adding up tolls of drug resistance, threats to research and hurdles to progress, TB survivors, scientists and advocates gather on Capitol Hill

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“We’re not here because tuberculosis is like the common cold and makes you feel bad, we’re here because TB kills people”

Washington, DC – From a six-year-old girl who came home to the U.S. sick after a visit to her grandparents in India, and from a long-distance runner from Peru, an audience on Capitol Hill Tuesday heard stories of the loneliness, fear, struggle and lost time that surviving tuberculosis entails.

Melquiades Huauya Ore, a marathon runner from Peru, describes his experience with multidrug-resistant tuberculosis to a Capitol Hill audience on Tuesday

From a researcher at the U.S. Agency for International Development, the audience heard of the many more people the two represent, the 10.4 million worldwide who got sick with TB in 2015 alone, and how lucky the two who came Tuesday were — the little girl who spent months behind a face mask, not allowed to play with her friends, the young man who had run a marathon before he was sidelined in the hospital and at home, for months that turned into years — because that year also, 40 percent of people sick with TB went undiagnosed, and 1.8 million died.

The audience heard from the USAID researcher how that could be  — the missing diagnoses, the untreated, the dead — with a disease that has been known through history, has been diagnosable for more than a century, and curable for more than half a century, and about the efforts the U.S. leads around the world to catch up with the bacteria that got ahead of the research, programs and funding allocated to fight it. They heard about new diagnostic technology developed in just the last decade, of promising new treatments that have yet to reach the vast majority of the people who need them, and of the advances still needed, in less toxic treatments, medicines made for children, diagnostic devices for remote and resource limited places, a vaccine, and strengthened local responses. And they heard about the costs — to individual and public health, to families and communities, to economic stability and global health security, when a disease develops resistance to the already toxic and insufficiently effective drugs available to treat it.

“We’re not here because tuberculosis is like the common cold and makes you feel bad, we’re here because TB kills people,” is how Charlotte Colvin of USAID summed it up.

From a Johns Hopkins physician scientist, the audience heard about new treatment regimens for tuberculosis that could shorten the ordeals the little girl and the marathon runner endured, making completed treatment more likely and less expensive, and better protecting public health. And the audience heard from an advocate for the Global Fund Against AIDS, Tuberculosis and Malaria, about why all of those efforts are pivotal to the success of the international response to infectious diseases that the United States supports.

These messages, from the little girl, the marathon runner, the researchers, the advocate, were delivered with particular urgency this week that encompasses World TB Day, in the aftermath of a Trump budget outline release the week before proposing radical reductions in foreign aid and science funding, as well as deep cuts to social and health services at home. The messages carried optimism, because as dismal the numbers presented are, they also reflect improved systems of capturing public health data worldwide, and because progress begets progress — the new medicines contributed to the shorter, more effective regimens. The meeting, at the Russell Senate Office building, was well attended. What remains to be seen, with a full Trump budget proposal to be released in May, and Congressional funding plans to come, is whether anyone was listening.

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