This weekend, nearly 200 people marched through the streets from Washington Square Park down to Projective Space in the Lower East Side in support of a cause that, not too long ago, posed one of the largest public-health threats in New York City.
New York’s annual TB walk is held each year in commemoration of World TB Day on March 24, which the World Health Organization has recognized since 1995. On that day in 1882, Dr. Robert Koch announced his discovery of the tuberculosis bacillus, the bacterial cause of the deadliest infectious disease in history. An antibiotic cure has existed since the 1940s, but some 9 million people worldwide still get TB each year—and 1.5 million of them die.
Only a small sliver of patients with TB live in the United States, but New York is nonetheless an important site in recent TB history. On Friday, the New York City Department of Health and Mental Hygiene (DOHMH) released its annual report, showing only 585 new cases for all of 2014— a historic low for a city threatened with a serious epidemic only 25 years ago. For many of the longtime TB pros at the Walk, the rosy new stats are a symbol of just how much TB in New York has changed, even if progress against the scourge has a long way to go.
Before its dramatic resurgence in the late 1980s, TB in the U.S. had been on a steady decline for several decades. Thanks to the dawn of antibiotics and effective hygiene and education campaigns, one of humanity’s longest-running mycobacterial adversaries was almost wiped out. But the rise of HIV in the 1980s attacked thousands of people’s immune systems and hence their ability to fight off germs that most healthy bodies can easily deflect—and TB numbers ballooned as a result. The effect was especially pronounced in New York, with its tightly-packed populace and high concentrations of HIV patients, which created an environment conducive to the transmission of tuberculosis bacillus. By 1992, there were 3,811 TB patients in New York, and 40 percent of them were also infected with HIV.
An even more worrying statistic from the early ’90s showed just how serious a threat TB could become. Out of the thousands of cases in NYC at the peak of the epidemic in 1992, 441 cases were multidrug-resistant, or MDR TB, which conventional antibiotics can’t treat. Drug-susceptible TB is far from easy to cure—it takes a course of four different drugs, taken for six to nine months. But the meds are only effective if taken faithfully—and it turns out to be an awfully easy thing to flub. Botched treatment leads to the development of MDR, which is much tougher to tackle. It takes longer to treat, costs more, and requires more toxic drugs.
The New York Health Department had a lot of catching up to do in the early years of the crisis, having underfunded TB programs for years. Dr. Lee Reichman, the founder of the Global Tuberculosis Institute and one of the world’s authorities on the disease, detailed the revival of TB in New York in his 2001 book Timebomb. He argued that HIV was certainly the epidemic’s proximate cause, but its real roots were found in the systematic defunding of TB control efforts since the early 1970s. For Reichman, predicting a TB outbreak is a no-brainer—it’s a direct consequence of pulling funding prematurely, a phenomenon he dubbed the “U-shaped curve of concern.”
Despite the city’s underfunded anti-TB infrastructure, New York eventually triumphed against the disease. To accomplish this, the city implemented an innovative strategy devised in response to one of TB’s greatest challenges: getting patients to successfully complete their treatments, even as treatments are incredibly tough to endure and execute properly. The solution was a method called directly-observed therapy, or DOT. New York City provided free diagnostics, testing and treatment to all patients who, in turn, took their daily pills in the presence of a certified public health worker. Depending on the patient, DOT was sometimes arranged at a health clinic, at home, or at a public meeting spot like a local McDonalds.
For certain risk groups, arranging DOT visits proved a special challenge. “There were times when we’d go and we’d meet people living under bridges,” Dr. Joseph Burzynski, the TB program director at the NYC DOHMH, told me. “Our DOT workers would go into situations that took a lot of courage, established relationships with people in unusual circumstances…and they were often very successful.”
While the draconian underpinnings of such a strategy have sparked some debate, the $1 billion intervention was undeniably effective. Dr. Reichman called it “one of the great public health victories of the 20th century.” After all, taking an entire course of medication properly for months or years would be hard on anyone. Furthermore, many TB patients in the early 1990s came from populations that lacked external support—people without homes, IV-drug users, and current or recent inmates. Along with medicine, DOT workers provided these patients with transportation vouchers, food coupons or nutrition supplements to make their treatment easier to sustain. Given the long-term relationships some DOT workers developed with their patients, deaths hit clinicians especially hard—Health Department employees were even provided with grief counseling at the height of the epidemic.
Dr. Burzynski told me that he, too, appreciated the supportive relationships he built with TB patients. “I have patients of mine that I had in my clinic 10 years ago,” he told me. “I’m still in contact with them. They’re doing great.”
Dr. Burzynski started working in the city’s TB control program 20 years ago, and I asked him how he would have felt back then about where we are today. In 1995, cases were still well into four figures, even if the worst of the epidemic had passed. “I would say there would've been no way I would see our case numbers would be down to 585,” he said. “That’s really because of the political commitment, the support we have, the infrastructure we have to keep clinics open and keep medication free for our patients, the diverse workers we have from communities of the people who have TB, and the dramatic improvement of HIV care and treatment.”
These advantages have also helped the NYC DOHMH adapt to the changing profile of TB in New York. Patients now have different needs than those in the early 1990s, when the disease was highly associated with HIV and substance abuse. Today, the vast majority of TB patients in New York are foreign born, and many are undocumented.
One recent TB outbreak among young Chinese migrant workers in Sunset Park, Brooklyn, illustrates how innovation and technology can help health workers reach these sometimes elusive communities. At a conference on March 20 at the Department of Health headquarters in Queens, epidemiologist Jeanne Sullivan talked about the role genotyping has played in case finding. For every new case of TB in New York, mycobacteria from the patient’s sputum (a nice word for “loogies”) is analyzed in a lab.
The DNA information from each individual strain of TB is entered into a nationwide database, which is continually analyzed for patterns to inform the investigation of new cases. The Sunset Park cluster first caught the city’s attention in 2013, when a strain of TB new to the U.S. began cropping up among young men from China. By focusing on patients with matching strains, epidemiologists like Sullivan have been able to zero in on mutual contacts and likely sites of transmission. It also helps them separate coincidences from actual clusters—in 2014, 130 of New York’s TB cases were Chinese-born, but 70 percent of them were infected with a unique strain, indicating that transmission had probably occurred in China.
Through genotyping, TB workers managed to narrow their search down to a small Internet cafe and a karaoke bar in the Brooklyn neighborhood of Sunset Park. Because TB transmission tends to require prolonged exposure, there was little need to incite panic (and damage business) by tracking down anyone who could have had casual contact with the patients. Instead, public health workers dutifully “camped out” at these sites waiting for regulars, who were then tested. According to Sullivan, at least three cases were found at each site using these methods.
Gaining the trust of immigrant communities can be a challenge for the DOHMH, which has increasingly relied on culturally-competent partnerships to combat TB as the demographics of patients have shifted. The Chinese-American Planning Council, for example, assisted with outreach by bundling free TB tests with its community-based flu shot program. Chinese-Language media outlets have also been instrumental in spreading the word about tuberculosis in their communities. Since 2013, 16 cases connected to the Sunset Park cluster were been identified and treated.
Effective community outreach is crucial not only for finding cases, but also for ensuring early diagnoses. Even though TB treatment is free for every patient, regardless of immigrant status, undocumented people can be hesitant to seek medical attention when they are so used to flying under the radar.
Dr. Burzynski believes this dynamic may have exacerbated the Sunset Park outbreak, since the patients who came to the DOHMH appeared to have been ill for a long time. “In general, people sometimes don’t remember all their symptoms, or they don’t want to divulge how long they’ve been coughing—they might feel guilty,” he explained. “But it seems like these young men may have had TB for quite a long time. Some already had cavities in their chest X-rays, which suggests they probably waited.” This not only makes patients sicker, but also increases the likelihood of infecting others.
Of course, delayed diagnostics are hardly limited to undocumented workers. As TB becomes increasingly invisible in the U.S., doctors are less likely to consider it when faced with new patients. Dr. Burzynski told me that earlier in his career, TB was still fresh on clinicians’ minds. Today, he said, med students can complete their infectious disease rounds without ever seeing it.
I chatted with a patient named Bilal (not his real name) at the TB Walk who had just this sort of experience. He is one of only 10 patients with MDR in the entire city, and is on the tail end of a long and arduous treatment. Bilal is young, active and high-achieving, and doctors had the darnedest time figuring out the source of the chest pains he developed in 2013. The TB finally turned up in a biopsy after weeks of trial and error. Six weeks later, when drug-susceptibility test results showed Bilal had MDR, he began an 18-month treatment of highly toxic drugs, including nine months of painful injections.
Bilal kept his diagnosis mostly to himself, telling only family and close friends. During the injection phase of the treatment, he’d get admonished by a co-worker for showing up late. He struggled with fatigue and confusion—common side-effects of the medications. Bilal, like most of us, knew very little about TB before getting it, and the ignorance of others can be painful. “It gets to the point where you just don't want to explain everything,” he said. “You feel like you want to talk about it, but you feel like you can’t tell anyone. So your relationships start to deteriorate.”
I knew exactly what he meant—I myself contracted drug-resistant tuberculosis as a Peace Corps volunteer in 2010. I remember the wooziness of all the pills, and the way they made my stomach rumble. Bilal and I both hated the concentration difficulties the most—but today, I assured him, I can read just fine.
Even in the few short years between our diagnoses, the field of TB has undergone changes. Patients like Bilal often have the option of video DOT, which has been easier for him to arrange around his job. Every day, he logs onto an app at a prearranged time with his DOT worker, and takes his pills on camera. (Back in 2010, I had to take meds outside my office in the backseat of my DOT worker’s car.) Since 2013, new diagnostics have been implemented in New York that cut the six-week susceptibility tests down to two or three weeks.
Video DOT also increases the reach of a TB program that is still hit by increasing budget cuts. Despite 2014’s record low case numbers, the TB world knows better than to celebrate prematurely. When people stop caring about the disease, it can set off Dr. Reichman’s dreaded U-shaped curve of concern and make more people sick. Indeed, the city’s TB budget keeps falling.
As Saturday’s TB Walk snaked down Bowery, I asked Dr. Reichman what he thinks about New York’s TB outlook. Unsurprisingly, the budget cuts unsettle him, since they chip away at the powerful infrastructure that curbs infection rates: “Whose jobs are they cutting?” Dr. Reichman asked, as we trailed behind the TB banner. “Not the director’s job; not the epidemiologists. They’re cutting the little guys—the public health workers.” When DOHMH workers are stretched so thin, it can be harder to carry out all the little tasks that snuff out TB, case-by-case.
Even so, it was tough not to feel optimistic at the NYC TB Walk. Led by a drum group on a sunny day, it was nice to see so many people who care about TB in one place. (Sometimes, it feels like we’re few and far between.) I met workers from other NYC DOHMH departments, physicians, and members of a high school service club. I even noticed a few Chinese-speaking reporters at the NYC TB Walk—heartening evidence that these efforts continue.