Generally World TB Day is meant to commemorate progress, and the opportunities to conquer an ancient disease that opened when physician scientist Robert Koch identified the bacteria that causes it more than 130 years ago. This year, though, the day also offered a glimpse of what happens when progress stands still. The short answer: The disease gains ground.
Last Thursday was the first World TB Day commemoration since the World Health Organization declared tuberculosis the leading infectious disease killer — “again,” noted Dr. Jeffrey Starke, professor of pediatrics at Baylor College of Medicine. Starke was among the speakers at a World TB Day briefing on Capitol Hill who discussed the new numbers, new plans, and old ways of confronting a modern public health crisis. Starke has treated hundreds of young patients with the disease and is an expert on the impact of tuberculosis on children, which is unsettling, he points out, when you realize he practices in the United States, as opposed to one of the high-burden, low-medical-resource countries of the world.
It also was the first World TB Day since the White House released its National Action Plan for Combating Multi-Drug Resistant Tuberculosis, a plan to scale up and strengthen research and responses to the disease domestically and worldwide, and a plan that remains not only unfunded, but requiring new resources at a time when the same administration has proposed a cut in funding for tuberculosis efforts.
And, as a representative of the the U.S. Centers for Disease Control and Prevention discussed at the same Capitol Hill event, this year’s World TB Day was the first in more than two decades, to see the United States facing an increase in the number of tuberculosis cases nationwide. That increase, of 157 cases from 2014 to 2015, means 9,573 people got tuberculosis in the U.S. last year. The cost of treating each of those who could be treated with first line drugs was about $17,000. For each whose disease was resistant to first line drugs the cost was $150,000 each. And for patients with extensively drug resistant, or XDR TB, the cost was close to half a million dollars each.
But first, the same event offered a look at just one of those cases, and arguably, another look at the cost of denial. That came from Carrie Fritschy, the mother of an child who was 18 months old in 2013 when she first started showing signs of being sick with tuberculosis, but nearly two years old by the time she was diagnosed. Fritschy told a harrowing account of the time in between, of doctor and emergency room visits, of night sweats, 104 fevers, and a string of misdiagnoses — cold, ear infection, pneumonia — that made the eventual correct diagnosis nearly a relief, because it was treatable. Her daughter now recovered, Fritschy works now with We are TB, a group she and others affected by tuberculosis founded with the National Tuberculosis Controllers Association and Stop TB USA, to spread word of the impact — as well as the existence — of tuberculosis in this country.
She does this, she explains, because the case of her daughter, while unfamiliar to the family practice and emergency room physicians who first saw her, was not unique. In fact, she was relatively lucky.
Starke told of one child he treated who now is deaf, another who is on a waiting list for a liver transplant, both from side effects of anti-tuberculosis treatment.
Another cost of denial, he noted. “There’s no other disease I know of that is diagnosed with tools a hundred years old,” he said. “Almost equally embarrassing are the drugs — first line drugs are all at least 49 years old,” he added.
Then there was the bigger picture. The great majority of U.S. children who become sick with tuberculosis were exposed through an international connection, Starke noted (far more often than not, here legally, he added). As the CDC report on the data noted, the increase of tuberculosis cases in the U.S. reflects failures to adequately address the disease on a global scale.
Dr. Ya Diul Mukadi of USAID gave examples. While heightened attention to global infectious diseases in the last two decades saw numbers of new cases, as well as numbers sick and dying from tuberculosis decline worldwide, roughly 4 million people sick with tuberculosis go undiagnosed, untreated, and continuing to transmit disease every year, he said. Less than a third of cases that are resistant to first line treatments are identified as such. Only half of them are successfully completing treatment. All of this reflects needs — for new diagnostics and medicines, for greatly increased access to existing ones.
Which brought Mukadi back to the Plan. Ten countries — the ten hardest hit worldwide — will be the focus of the Plan. Nine have been decided, one is up in the air. The Plan aims to make a difference in the next three to five years, with straightforward goals of numbers treated, systems strengthened, development of technologies delineated. The focus of the day, like the discovery it commemorates, was after all, opportunity, and the White House National Action Plan for Combating Multidrug-Resistant Tuberculosis, is all about creating opportunities to once again conquer the disease.
But, Starke noted, as he followed Mukadi, “Let me remind you, as of right now, there is no budget for this plan.”
The event Thursday was hosted by the American Thoracic Society, Aeras, RESULTS, and the National Tuberculosis Controllers Association.