by
Katayoun Chamany
Science, Technology and Society Program
Eugene Lang College of the New School University
The phone had been ringing all morning. Aisha picked up the receiver and, after a few moments of conversation, put the caller on hold. She turned to her mentor, Dr. Sanjari, who was busy shuffling through a pile of paper and asked “Do you want to take this call?” Barely taking her eyes off the stacks of paper, Dr. Sanjari replied “English or Spanish?”
Ever since the Morbidity & Mortality Weekly Report (MMWR) had come out a couple of weeks ago, the Division of TB Control at the New York City Department of Health (NYCDOH) had been bombarded with phone calls from concerned citizens and policy makers. The publication of the report coincided with World TB Day, March 24th. Aisha always thought it was interesting that even though only 10% of those exposed to TB became infected, one-third of the world’s population was currently infected with the bacterium that causes tuberculosis. So the World Health Organization (WHO) dedicated a day to TB to raise international awareness of the nine million new infections and the two to three million deaths caused by this disease each year. Since 1982, World TB Day has served to promote advocacy for prevention, screening, and treatment of tuberculosis.
Soon after starting her DOH internship, Aisha realized that New York City, like many urban centers, had experienced a TB outbreak because TB control had become lax. For many years, TB rates were low, so funding for TB public health programs were cut. But in the late 1980s, HIV and increased immigration both contributed to higher rates of TB incidence; HIV+ individuals were susceptible to new infections, while recent immigrants were entering the country with high rates of latent TB infection, which had the potential to develop into disease later in life. Other more consistent factors, such as drug abuse, incarceration, and poverty, continued to fuel the outbreak.
Aisha recognized that poverty could result in inadequate health care and that drug abuse could weaken the immune system and the sharing of unclean needles could spread HIV, but she had been unaware of how incarceration could lead to higher rates of transmission. As an intern, Aisha learned that prisoners in cells share the same air for extended periods of time, and movement within the prison system as well as the cycling that occurred between the prison and general population presented a challenge in terms of monitoring patients’ completion of extended TB treatment. New York City was able to mount an aggressive TB control program to reduce the transmission rate and provide treatment, resulting in a 95% drop in case rate.
But beyond the city, TB rates continued to rise. Though antibiotic treatment and vaccination exist for the disease, Aisha was discouraged to learn that in communities around the world many people did not have access to TB screening and treatment facilities. For those who had access, other challenges surfaced; women who were concerned about their marriage potential would avoid a TB diagnosis for fear of rejection, others were not interested in knowing their diagnosis if there were no funds for treatment.
Aisha saw the international situation as important, since TB is transmitted through aerosol droplets that are dispersed when someone who has the disease coughs. Those who are in close contact for sustained periods of time are most at risk and these are often the children of those with the disease. As people continued to move from rural areas to urban centers to find work, TB often migrated with them, and these urban centers were populated with people from around the world. Aisha knew from her first days at the internship that “TB has no borders,” and she was not surprised that in 1993 the WHO declared TB a global emergency, emphasizing the importance of solidarity in fighting this epidemic.
As a DOH intern, Aisha was particularly interested in outreach that could increase New Yorkers’ awareness about TB screening and treatment, and minimize the stigma associated with the disease. She was researching international programs and hoped to identify those that dropped the TB case rate but did not further discriminate against those most underserved by society—underrepresented minorities, the poor, sex workers, drug users, and prisoners.
What was interesting to Aisha was that in her “History of Medicine” course she had read about affluent and prominent individuals who had suffered from tuberculosis. Keats, the Bronte sisters, Kafka, and Chopin were all revered for their work and contributions to society, and the disease was portrayed as an affliction of passion or a curse of the talented. How ironic, she thought, that with improved healthcare, living conditions, and nutrition, those with access to these resources no longer suffered, relegating the disease to the margins of society where health was no longer seen as a human right.
Her internship last year on the “Access to Essential Medicines Campaign” at Médecins Sans Frontières (MSF) had given her hope. There, she learned about Partners in Health, a program founded by physicians Paul Farmer and Jim Yong Kim. They developed the program to provide second-line antibiotics to individuals infected with multi-drug resistant TB (MDR TB). Though these antibiotics proved more toxic, less effective, and more costly, under directly observed treatment (DOTS) the program was successful in saving the lives of entire communities. Their work convinced the WHO to revise their guidelines in 1999, which until that time recommended no treatment for individuals with MDR TB. In an effort to expand DOTS-Plus (DOTS plus second-line antibiotics), the WHO established the Greenlight Committee in 2000. This committee works with programs and pharmaceutical companies to secure the necessary drugs at 99% less than the open market price.
But now the MMWR was making Aisha anxious. The report had been picked up by the media, and the inflammatory information about the rise in drug resistant TB and the distribution of these cases in the population could be presented in a way that would reverse all the positive outcomes of the last year. Aisha hoped the “cycle of neglect” that left marginalized populations infected with TB would not be revisited and she scanned the report to look for positive indicators. On the one hand, the report presented good news. The U.S. TB case rate was at an all time low in 2005. But the decline in case rate was leveling off, and those who continued to be infected were those with inadequate health care due to financial, linguistic, cultural, or legal barriers. This is what had Aisha most concerned. The TB rate in foreign born individuals was 8.7 times higher than U.S. born. Equally upsetting was that Black Americans had a 7.3 times higher TB rate than white non-Hispanic Americans. The statistics on drug resistance were just as dire. Drug resistance was becoming more extensive and more frequent. In 2004, the number of MDR TB cases increased by 13.3%, the largest one-year increase since 1993, the peak of the period of the TB outbreak in New York. Furthermore, the countries of origin for these foreign born cases were identical to those with the highest rates of immigration.
Aisha stood up and went to speak to Dr. Sanjari, who had returned to her office. Enough mulling things over. They needed to develop a plan to counteract any potential damage that might stem from the recent news. She knocked on Dr. Sanjari’s door and broached the subject: “What do you make of the news coverage of the report?” Dr. Sanjari looked up and said, “Well, we certainly have our work cut out for us.”
Aisha agreed and reminded her of the case in California, “Remember that high school student, Debi French, who was infected with TB by a Vietnamese peer? She ended up losing a lung, suing the department of health, but in the end, became a poster-child for extremely drug resistant TB, and never placed blame on the immigrant student. Instead she raised awareness for the need for better diagnostics and screening protocols. Her illness demonstrated that anyone can contract TB. The healthy, the young, no one is immune.”
Dr. Sanjari suggested that they focus on the portions of the report that would most affect New York City. What puzzled Aisha and Dr. Sanjari was the new nomenclature “XDR TB.” The Centers for Disease Control and Prevention (CDC) wanted to distinguish XDR TB from MDR TB. The latter is resistant to first-line antibiotics, while XDR TB is resistant to all first-line and three of the six second-line antibiotics. Dr. Sanjari turned to Aisha and said, “As you know, this kind of bacteria, ‘XDR TB,’ has caused one to two cases of TB in New York City every year since the last major outbreak in the early 1990s.” She turned the page and noticed that in the same MMWR there was another report titled “Emergence of a Mycobacterium tuberculosis with extensive resistance to second-line drugs—worldwide, 2000–2004.” Dr. Sanjari wrinkled her brow and read the grim statistics of the report, “The case rate of XDR TB increased from 5% to 7% between 2000 and 2004.” She sighed, “In just four years this thing has spread around the world, and some of these strains are no longer responding to any antibiotics we have available. I hope those six new antibiotics specific for TB hit the market soon. If not, we could have a serious problem on our hands here in the city.”
Aisha then noticed something of particular importance to urban centers that serve as ports of entry for immigration, “The percentage of MDR cases that were XDR were 4%, 19%, and 15% in the U.S., Latvia, and South Korea, respectively.” Because she had studied the New York City TB epidemic in the early 1990s, she was aware that the TB strain, W/ Beijing , had migrated from the Russian prison system to New Jersey and New York. DNA fingerprinting had revealed the similarities in the strain’s drug resistance genes. But she did not understand the inclusion of South Korea in this study, so Dr. Sanjari explained, “South Korea is one of the few countries that performs a drug susceptibility test on all its culture-positive TB patients at its National Reference Library.”
Dr. Sanjari anticipated that inquiries about the report would become more frequent, so to prep Aisha for phone duty she asked Aisha to join her in a debriefing meeting to review the protocols for answering some of the most pressing and challenging questions. She stressed the importance of answering these questions from a biological and social perspective.
Read the following articles, view the videos, and try to answer the questions that callers might pose to Aisha.
Date Posted: 08/14/06 nas
Image Credit: Copyright © American Lung Association, image obtained courtesy of National Library of Science.
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