‘We Cannot Choose the Air We Breathe’: Q&A with Jezza Neumann
Tomorrow, March 25, the day after World Tuberculosis Day, the Public Broadcasting Program Frontline will present TB Silent Killer a new documentary that looks at tuberculosis in Swaziland, the country with the highest incidence of the disease.
While many people, especially in the United States, think tuberculosis has long since been eradicated, there are in fact more than 8 million new infections every year, many of them virulent new drug-resistant strains that are passed—throughout the world—through a cough or a sneeze. According to the World Health Organization, tuberculosis has become the second-leading cause of death from an infectious disease on the planet.
Jezza Neumann, the filmmaker who created TB Silent Killer, tells the story of several people in Swaziland suffering daily from the disease, including ten-year-old Nokubegha, whose mother recently died of a multidrug resistant strain of tuberculosis and whose 17-year-old brother cares for her.
“In Swaziland, a quarter of all adults are HIV-positive, which means their immune systems are compromised and especially susceptible to TB infection,” said Neumann, “But globalization and international travel mean that these infections have the potential to spread all over the world.”
NewPublicHealth spoke by phone with Jezza Neumann a few days before the documentary was scheduled to air on Frontline (Check local PBS schedules here.)
NewPublicHealth: Why did you choose tuberculosis as your topic?
Jezza Neumann: The idea being to make films that make a difference and give voice to the voiceless. In doing so, we’ve made and kept relationships with nonprofits and NGOs and other organizations and look to find the issue that’s hidden in the background that no one is hearing about, that’s not getting the platform that it needs.
One of the organizations we’d worked a lot with is MSF, Medecins Sans Frontieres, or Doctors Without Borders as it’s known over here. The press officer at the U.K. office knew that Doctors Without Borders had been struggling to get the issue of tuberculosis out on the mainstream. People had done small reports but she knew there was a big impact possible with a documentary because the reality is if you combine the facts, stats and figures in documents with a film that has a human face and a human cost of those facts, stats and figures, it becomes something so much bigger. The documentary becomes a platform that has a life far further reaching than just the transmission.
Once we had a pilot, the BBC took the move to commission it and then we spoke to the producers at Frontline and said, “Yes, Swaziland is a far-away place, and no, for a lot of Americans, they have probably never even heard of it, but I’m confident we can make a film that will bring Swaziland to America in a way that people will be able to identify with it and with the people in the film.“
NPH: What did you learn about tuberculosis and its worldwide impact that you didn’t know before you started filming?
Neumann: One of the biggest things was how catastrophic the side effects of tuberculosis treatment can be. You may hear that some people have hearing loss—that’s the most commonly documented complication—but what you don’t read about necessarily is what that actually means. It means that you can’t do some of the things you used to do.
Or for someone whose complication is aching joints, those can be so bad you literally may spend hours in bed, and you can’t do what you used to do. So you see people who were previously highly active and went about a very active life are now unable to do many things. And if your active life was actually your livelihood—perhaps you collected wood and sold it, or tended cattle or grew maize—if now you can’t do those things, not only are you suffering from pain, you’re also falling into greater poverty, and you eat less. Your nutrition levels decrease, and therefore the disease takes a greater grip on you. So what I saw on the ground was how the treatment was almost for some people making life worse than the disease itself.
NPH: What did you want to portray about the people we meet in the film?
Neumann: What I want people to see and take from the film is that these people aren’t so different from you. The little girl loves football, she plays with dolls and she collects flowers. She loves to dance. She loves music. Her brother listens to Dolly Parton. These kids could be the kid next door, and they have the same aspirations. They have the same dreams, and they are suffering because this disease was considered a disease of the past in the West, so we decided we don’t need to worry about it anymore. So the drugs that are being used to cure these children are 40-70 years old and there has been no real investment in new drugs. So the reality is that as the world grows smaller and as Western culture is starting to feel the crippling effects of an economic collapse and we see poverty levels increasing and housing conditions deteriorating, there’s a very real possibility that the world that they are living in could come to your doorsteps here.
NPH: With so many options competing for people’s attention, what is the compelling force for people to watch the film?
Neumann: I think that on a simple level of compassion you would like to think that Americans have had a strong history of supporting issues in faraway lands. America was at the forefront of tackling HIV when it first came out. Historically America has given its eyes and ears to other countries’ problems, and I’d like to think that hasn’t diminished at all and that people would still have compassion as human beings toward people over in a place such as Swaziland.
And while cases of tuberculosis in America today may be the result of travelers brings some cases back, the reality is that there’s a clear possibility that won’t be the case for long. I filmed a documentary for Frontline called “Poor Kids” where I highlighted the growing levels of poverty in America, and in that film you saw how people were living in shelters and sleeping on chairs. That people were having to scrape around for food and go without meals, so that means their nutrition levels are diminishing, and therefore their immune systems aren’t as strong as they should be, and that’s exactly the environment that tuberculosis loves. So the fact is it’s a real possibility that you will start to see greater numbers of tuberculosis cases here, and the thing that we’re so good at in the West is being reactionary rather than preventatory.
The trouble is by the time we react to it, it’s often too late. The damage has been done. The houses have been destroyed by the flooding or the people have already started dying from whatever it is. Right now in America, tuberculosis cases are not at the levels being seen in Swaziland or other parts of the world, so there is time. There is time to start to invest and do research into new drugs and new ways to treat. The reality is that we do need to look into this.
New drugs need to be developed and new regimens need to be found, because if we don’t, by the time we think it’s time, it’s too late because it will already be here. Consider that you have to have hospital beds 13 feet apart, which reduces a hospital’s patient capacity. Or, if you stay at home for treatment, which is the preferred method, how many people in cities have the accommodations to have a separate dwelling from the rest of their family? Maybe in suburbia they’ll have a garden shed you can live in for six months while you have your injections, but if you’re living in Manhattan, highly unlikely.
In life, there is always that moment, that seed, that thing that evokes change, and for everybody it’s a different moment. It’s a different thing that makes you go, “Yeah, really. We need to do that, don’t we?” Why can’t this be the moment that we say, yes, we do need a concerted effort in looking at how we make sure that in the western world tuberculosis does not become the situation it is in the developing world, and at the same time, how do we make sure we stop the increase in suffering in the developing world and produce drugs that are affordable and available to those countries, so that then we eradicate it completely.
NPH: What is next for you?
Neumann: I’m actually working locally back in the U.K. I’m developing another film for the BBC. In the U.K., as in America, there has been a big spike in families having to turn to food banks. My film is about families being forced to make the choice between putting on their heating or eating a meal. There are enough people in the U.K. whose lives are getting to almost Dickensian levels. You’re seeing diseases that we thought were gone, conditions that we didn’t think we’d see again. Rickets, for example. In a way, all the films I make I suppose are inspired by one another because it’s about just trying to raise awareness of issues.
Why do you, at 9 o’clock on a Tuesday night, want to switch on the television and watch people whose lives aren’t great? You want to disappear into some game show or something. You want to escape your world. You might have had a bad day at the office, and I get that and I understand that and I completely empathize with that, but I also like to say that within the context of the films that I make, I do my best to bring you people that you will engage with, that you will take something from. It’s not all tragedy and heartache. There is inspiration there, too, and maybe they’ll just make you think about something. Even if all this film does is you take away from it a decision to go, “Hmm, actually, when I saw the bravery of that little girl and what she overcame, well, yeah, my day wasn’t so bad after all.” Even if it’s just as simple as that, then the film has done something. And I just implore people not to take the easy path and switch on the game show. Take the slightly harder—but I think the much more rewarding—path and actually give a bit of space to these brave people who have opened their lives to us to show us about something that we might not know very much about.
A review published recently in the Morbidity and Mortality Weekly Report (MMWR), a publication of the U.S. Centers for Disease Control and Prevention (CDC), finds that cases and rates of tuberculosis continue to fall in the United States, however a higher burden in some populations—such as foreign-born individuals and racial/ethnic minorities—keeps tuberculosis elimination out of reach. Preliminary data from the CDC National TB Surveillance System shows that a total of 9,588 cases were reported in the United States in 2013, which is a 4.2 percent decline from the 2012 rate (from 3.2 to 3.0 cases per 100,000 population). However, despite the overall progress the tuberculosis rate for foreign-born individuals is 13 times higher than among individuals born in the United States, and the proportion of tuberculosis cases in the foreign-born group continues to increase for a number of reasons:
- Racial disparities persist. Hispanics, blacks and Asians face higher tuberculosis rates—7, 7 and 26 times higher, respectively—than do whites.
- People infected with HIV and people who are homeless are also especially vulnerable to tuberculosis.
- Although the proportion of drug-resistant cases remains relatively small, drug-resistant tuberculosis is a concern because it is difficult and costly to treat and more often fatal. In 2012, multidrug-resistant tuberculosis accounted for 1.2 percent of cases (86 cases). Two cases of extensively-drug-resistant tuberculosis were reported in 2013.
According to the MMWR report authors, eliminating tuberculosis in the United States requires continuing to address it in affected populations and improving awareness, testing and treatment of the disease.
A second report in that issue of MMWR also found that updated CDC recommendations for overseas tuberculosis screening of immigrants and refugees has resulted in twice as many cases of tuberculosis being diagnosed and treated before immigrants and refugees arrive in the United States, when compared with the previous screening program. Since the new requirements were implemented, reports of cases of foreign-born tuberculosis have declined. In addition, the increase in people diagnosed and treated overseas is projected to result in a savings of more than $15 million in U.S. health care costs.