In 2007, neuroscientist Lisa Genova self-published her first novel, “Still Alice.” It tells the story of a Harvard psychology professor and her experience with early-onset Alzheimer’s disease. The book became a best-seller and is now a major motion picture. Join Diane and her guests for a discussion of “Still Alice.”
One third of the world’s population is infected with tuberculosis. That means every time you take a subway, taxi or board a plane, chances are you’re coming into contact with TB. While the number of tuberculosis cases reported in the U.S. is on the decline, in less developed countries the disease never went away and is getting worse. A new study finds that 1 million of the 8 million new infections each year are in children -– twice as many as previously thought. And worse yet, more than 30,000 of those children have drug-resistant strains of TB. Diane and her guests discuss the global health challenge of treating tuberculosis.
- Dr. Anthony Fauci director, National Institute of Allergy and Infectious Diseases at the National Institutes of Health.
- Dr. Ann Ginsberg chief medical officer of Aeras, a non-profit biotech firm working to advance the development of new tuberculosis vaccines.
- Jezza Neumann producer, writer and director of the Frontline documentary, "TB Silent Killer."
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Many Americans believe tuberculosis, like polio, is a disease of the past. But TB, passed simply by a cough or a sneeze, has become the world's second-leading cause of death from infectious disease. And a growing number of TB cases are proving resistant to drug treatments.
MS. DIANE REHMJoining me in the studio to talk about the continuing scourge of TB in much of the world: Dr. Anthony Fauci of the National Institutes of Health, Dr. Ann Ginsberg of the non-profit biotech company Aeras, and award-winning filmmaker Jezza Neumann. His documentary titled "TB Silent Killer" airs tonight on the PBS series "Frontline." Do join us, questions, comments, call us on 800-433-8850. Send us an email to email@example.com. Follow us on Facebook or send us a tweet. Welcome to all of you. Thank you for being here.
DR. ANTHONY FAUCIGood to be with you.
MR. JEZZA NEUMANNYeah, lovely to be here.
DR. ANN GINSBERGThank you, Diane.
REHMThank you. Dr. Fauci, give us the latest numbers there. Was the study saying that we're actually underestimating the number of children worldwide with TB?
FAUCIYeah. Right. Well, if you look at the broad issue, it's the numbers are really stunning. If you took about TB, not necessarily as a disease but as an infection, one-third of the world's population is infected. That's over 2 billion people. If you look at the number of cases of active disease, it's about 9 million per year. It's about 1.3 million deaths, which, as you mentioned, is just a little bit less than HIV deaths with the second-leading cause of death by an infectious disease.
FAUCIThe original estimate from the WHO is that there are about a half a million children getting infected. The newest study that came out of Harvard and the Brigham -- Peter Bent Brigham Hospital -- Brigham and Women's Hospital is now saying that it's probably closer to 1 million. So this is a very serious global infectious disease threat.
REHMSo, Dr. Ginsberg, when you include adults as well as children, you've got a huge problem.
GINSBERGAbsolutely. As Dr. Fauci said, it's an enormous problem and the second-leading cause of death from an infectious agent in the world, and vastly underappreciated, I think, here in the more developed countries because we brought it under control since the age of antibiotics. But in Africa, in Asia, India, China, Eastern Europe, it's still an enormous problem with many millions of people getting sick from the disease and, as Dr. Fauci, said over a million dying per year.
REHMAnd, Jezza Neumann, you saw firsthand the toll that TB is taking on individuals and communities while filming your documentary. Tell us about some of the individuals you encountered.
NEUMANNSo the film opens with a little girl called Nokubheka who's 12 years old. And two weeks prior to us meeting her, she had actually become an orphan as her mother had died of TB. And we meet this little girl who's living with her 17-year-old brother Melusi. (sp?) The thing I wanted to try and do with this film is not let Swaziland be this place that's a million miles away that nobody could even put a finger on a map.
NEUMANNSo the part of the process is not only to educate you about this disease but also to educate you about different cultures, different people. And so, Nokubheka, when you meet her, she loves the color pink. She loves flower arranging. She loves to dance. And for me, she's just like the little girl living next door. So the idea is that if I can connect the heart, then the head will follow. So...
REHMBut of course Swaziland is in one part of the world, and here in Montgomery County, we have a report just this morning that there has been an individual identified with tuberculosis. We don't know if it's a child or an adult. We don't know, and we certainly hope it's not the drug-resistant type of TB. How often does it occur in this country, Dr. Fauci?
FAUCIWell, we have a little bit less than 10,000 cases a year, about -- the latest numbers that we have are 9,900 and something. Of those, about 70-plus, 72 are drug-resistant. So it's unlikely, not impossible that'll be drug-resistant. We hope it's not. But we do see intermittently a case that comes up in a school. And usually it's a young person that might have gotten infected. The large proportion of infections of TB in the United States are among immigrants who come in from other countries into the country.
FAUCIAbout 65 percent of all the TB cases in this country are among people who are immigrants. And when you look at the multiple drug-resistant form, more than 80 percent of them come from people from the outside. So you have to stay heads-up. You want to hope that that's not a drug-resistant case. But it's an unusual situation 'cause we have 10,000. But that's still not something that should be acceptable. We should get it down essentially to eliminating it if possible.
REHMNow what's the relationship between TB and HIV infection? Is there one?
FAUCIWell, there's an epidemiological relationship which means that people who have HIV have -- a considerably higher proportion get TB than in the normal population.
REHMBecause their resistance is low to begin with?
FAUCIRight -- is low. If you talk about so many people who have latent TB that would not otherwise activate itself, when you have HIV, you have a suppressed immune system. And you have a higher likelihood of activation. If you look throughout the world, anywhere from 20 percent to 30 percent of people who are HIV-infected have tuberculosis. And in Africa, tuberculosis is the leading cause of death of people who have HIV infection.
REHMDr. Ginsberg, why are more strains of tuberculosis resistant to drugs?
GINSBERGSo drug resistance happens in a few different ways. It used to be when the rates of drug resistance were still quite low. But almost everyone who became resistant became resistant either because they didn't take their full course of treatment. The treatment for TB, even if you have drug-sensitive TB, is very long, very complex, and has lots of side effects. So...
GINSBERGWell, so you have to take four different drugs for at least six months. People feel nauseated. Their joints ache, vomiting, diarrhea. You can have hearing loss. There are lots of side effects that are really unpleasant. And people start feeling better from the disease within a couple of months. And then the drugs are making them feel sick, so it's very easy for them to decide to stop taking the drugs. And then the bacteria in their bodies that have mutated just by chance to become drug-resistant are the ones that can most easily grow out. Now...
REHMNow, as I understand it, your biotech company, which is a non-profit, Aeras, is trying to develop new drugs to treat those who are drug-resistant.
GINSBERGActually, Aeras' focus is on developing better vaccines to prevent tuberculosis. There's an organization I worked for until a couple of years ago called the Global Alliance for TB Drug Development based in New York that's focused on developing better drugs to treat the patients who are already sick with TB.
GINSBERGAnd the challenge there is that because you do need multiple drugs, you really need to treat people with drug combinations so that more resistance doesn't develop. We don't need just one or two new drugs. We need whole new combinations that'll both simplify and shorten the treatment to make it easier for patients to comply.
REHMWhat about vaccines, Dr. Fauci?
FAUCIYeah. Well, that's a real problem. If you look at a disease that's an ancient disease that we have been dealing with for such a long time, there is a vaccine that is not particularly effective. It's called BCG. It can prevent, somewhat, infection in children and mostly the meningitis in children. But for the most important way that tuberculosis spreads through the respiratory route, it does not prevent that kind of infection.
REHMSo you're saying...
FAUCISo it's not very -- we don't have a very good vaccine.
REHMEven here in this country.
FAUCIEven -- well, anywhere, anywhere...
GINSBERGIn this country -- sorry.
FAUCIAnd, yeah, yeah.
GINSBERGIn this country, we don't even use BCG. So it's typically given to newborns. About 90 percent of newborns across the world are vaccinated with BCG. But here we don't use it at all because it doesn't work very well, and it prevents one from doing the typical kind of screening with the skin test that's used to detect TB infection. So the public health decision has been it's better to be able to screen in a low-incidence country like ours than to vaccinate (unintelligible).
REHMJezza, I know you actually witnessed what happens to people who are drug-resistant, who really get very sick. Talk about that.
NEUMANNYeah, absolutely. I mean, the side effects as mentioned are quite debilitating, you know. So I witnessed, you know, somebody who was vomiting because of the drugs. And it puts the doctors into a really difficult position because it's, well, what do I do? If I keep giving them medication, then they're going to keep vomiting. And then they'll die from lack of nutrition, you know. But if I stop the drugs, equally the TB might mutate again into what's known as extensively drug-resistant, and then their chances of survival diminish again. I saw men becoming highly depressed, talking about suicide.
NEUMANNAnd one doctor even told me that there were cases she had of people who got so depressed, they actually hung themselves in a hospital ward. So, you know, this is pretty serious. These side effects are really quite horrific. They tear your life apart. You have to go into isolation. You can't be around your friends and relatives. There are stigmas attached with that where people don't want to know you. And so it really is quite tough.
REHMJezza Neumann, he's the producer, writer, director of the new "Frontline" documentary titled "TB Silent Killer." It premieres tonight on PBS and online at PBS.org/frontline. Stay with us.
REHMAnd we're talking in this hour about the violent and awful presence of tuberculosis in the world. It is now thought that one-third of the world's population is infected with tuberculosis. We're talking about what's being done around the world which, frankly, is not a great deal. We're talking even about what's happening in this country where, just this morning in The Washington Post, a student in Montgomery County -- I take that back -- an individual in Montgomery County School is said to be infected with tuberculosis.
REHMHere in the studio, Jezza Neumann. He's the producer, writer, and director of a new "Frontline" documentary titled "TB Silent Killer," going to premiere tonight on PBS. Also here in the studio, Dr. Ann Ginsberg. She's chief medical officer of Aeras. That's a non-profit biotech advancing the development of new tuberculosis vaccines.
REHMAnd Dr. Anthony Fauci, he's director of the National Institute of Allergy and Infectious Diseases at the National Institute of Health. Jezza, just before the break, you were talking about individuals, how discouraged they get. They're sent away to hospitals. They've left their families if their families are still alive. They've left them behind, and they become so discouraged, they are actually suicidal.
NEUMANNYes, absolutely. And it's just purely down to the treatment they're receiving. A lot of the time, it's not actually down to the disease. However, you know, the disease itself too, if it takes hold and mutates further, it gets to the point that the drugs become less and less effective. So the more it mutates and the further it gets, then the worse it gets.
REHMCan you talk about Sinakiel? (sp?) That's a young patient shown in the film.
NEUMANNYeah, she's a beautiful young girl. She's incredibly intelligent. I think the thing that you have to really keep reminding yourself when you see her in the film is she's completely deaf. But yet she speaks word-perfect English.
SINAKIELI am deaf 'cause of TB. I lost my parents and my sister 'cause of TB. I've been out of school now 'cause of TB. I can't enjoy my youthful days 'cause of TB. I'm not living like every other people with their siblings in the same house 'cause of TB. Like, seriously now, how many things are going bad for me just 'cause of TB? You see, I really don't care about the stigma 'cause I'm now able to stay alone. But, like, seriously, all these things just 'cause of TB. It's not fair. It's really not fair.
REHMIt's not fair.
NEUMANNNo, absolutely, it's not fair. And she's a beautiful girl who's highly intelligent. And what you need to remember, this girl is not HIV-positive. This girl comes from a middle class family. She's well fed. She has a good standard of living. So, you know, she's a classic case where this disease has passed to someone who doesn't fit your stereotypes. And I think this is really important within the context of the film that, yes, in Swaziland, HIV is the predominant factor of why people's immune systems are down.
NEUMANNBut this is a social disease. So in other parts of the world, it's not HIV. It can be living conditions. It can be nutrition levels. And I think this is why we need to think about this strong in America because right now it might not be a problem. But the last documentary I made here in America was "Frontline" "Poor Kids," and there I showed a high increase in poverty levels in America with people becoming homeless, families becoming homeless. These are the breeding grounds of TB. This is where the bacteria will love to thrive and turn into full-blown TB.
NEUMANNSo, no, it might not be a problem today. No, it's unlikely that these cases are MDR in the schools. However, why wait? Why wait when it becomes a problem where you are sending your children into isolation wards where your families are ripped apart? When these drugs are nearly 40 years to 70 years old, they're highly toxic. You know, surely we need to do more, particularly right now when TB budgets are being cut.
FAUCIAgree, agree. We have a problem. One of the things, talking about neglect, early on, when we had a cluster of good drugs, which we still do, against tuberculosis, there was a lack of interest or incentive to develop new drugs for TB. We had a drug just recently approved this year, was -- been the first drug in over 40 years that was approved specifically for tuberculosis. We've repurposed other drugs to use for TB.
FAUCISo we really have got to do a number of things with regard to the treatment of TB. We need a better pipeline of drugs. And we've got to get drugs that don't require the duration of therapy that we currently have, for even sensitive -- drug-sensitive TB, but certainly for drug-resistance because, as Dr. Ginsberg said, one of the real problems we deal with is that the good news is that when you start on drug and the microbacterium response...
REHMYou can get better.
FAUCIYou feel better.
FAUCIBut then you have to treat yourself for many months more. And the incentive to stay on a drug that's making you feel badly, when the TB part of your illness is feeling better, is really a difficult dilemma. We need better drugs, shorter duration, and more effective.
REHMSo with this worldwide population of TB sufferers growing, why is it taking so long to focus on what's happening, Dr. Ginsberg?
GINSBERGWell, a lot of the reason is that it's not a huge problem in the wealthier countries. And most people -- even today, if I go to a cocktail party and say, I work on tuberculosis, the usual answer is...
GINSBERG...why? Didn't we solve that a long time ago? And people are shocked by the numbers we've talked about today. We've done -- well, we -- WHO and its partners, the Global Fund, the World Bank, over the last couple of decades have spent billions of dollars trying to control this epidemic with the current tools, with the old drugs, the current diagnostics, and the old vaccine BCG.
GINSBERGAnd despite those efforts, which are making a difference, right -- mortality rates have come down -- but incidents, the number of TB cases per 100,000 population is only decreasing by 2 percent a year. That's not nearly enough to really get this epidemic under control.
REHMSo are we talking primarily -- when you talk about the development of cases in this country, are you talking primarily about immigrants, Dr. Fauci?
FAUCIWell, percentage-wise, that's the case. It is.
REHMThat's the case.
FAUCISo 60, 63 percent of the new cases this past year have been among immigrants.
REHMWell, aren't they tested before they come in?
FAUCIThe answer is no. They -- the fact is that immigrants come in. They could be infected -- by the way, the tests that we have are not very sensitive sometimes.
FAUCISo that's really one of the things we've got to be concerned about. But then the spread doesn't know national boundaries or racial or ethnic boundaries. It just happens, and that's one of the problems.
REHMSo besides vaccines, what is new on the horizon, Dr. Fauci?
FAUCIWell, what's new on the horizon is trying to get better diagnostic tests. And one of the things is it's something what we call point of care where someone can come in and get a diagnosis right away, not only about whether you're dealing with tuberculosis or not but whether you're dealing with a resistant form of tuberculosis. And there has been recently a test -- a molecular test called GeneXpert, which is, unfortunately, a bit expensive but nonetheless is being now much more widely used, particularly in southern Africa.
FAUCIThe standard way of diagnosing it, the way we've done has not really improved broadly over the last decades and decades. When I was in medical school, we were looking under the microscope to see the famous acid-fast bacteria. People are still doing that now, even though there are better molecular tests. But we have to get a test that's specific, that's sensitive, that you can do very, very quickly. That's one of the really important things we need to do among...
REHMHow much money is going into that?
FAUCIWell, you know, from the research standpoint, the NIH is the leading funder of HIV -- excuse me, of tuberculosis research. But our money is really not enough. We need to get pharmaceutical companies, we need to get biotech companies, and we need to get big Pharma more involved not only in the development of something but also in the research to get there.
REHMYou know, I'm really interested that tuberculosis was once a big problem in this country. How did we manage to get control of it? And how come now it's in all these developing countries and very few here in this country?
GINSBERGSo it was really a combination of factors that brought down the rates of TB in this country. They decreased -- so I told you that TB is now decreasing about 2 percent per year. After World War II in the United States, Western Europe, TB decreased at about 10 percent per year. Now, partly that was due to the availability of antibiotics for the first time. But a lot of it was probably due to improved living conditions. So there was less crowding. There was better economy, less poverty, better nutrition. All these things make a difference.
GINSBERGSo the countries where there are still -- there's still overcrowding, poverty, malnutrition, et cetera, those are the places where the rates are highest. But also it takes enormous resources to bring the disease under control. In the United States there was an outbreak of largely MDR-TB in New York City in the late '80s, early '90s. In 1990 dollars, it took about a billion -- that's with a B -- U.S. dollars to get that one outbreak in New York City under control. So you can imagine developing countries. The resources just aren't there.
NEUMANNAnd the reality is, at the moment, we're playing catch-up. You know, GeneXpert came to Swaziland. It was supposed to be the great, you know, god of detection that was going to solve all. There are strains of MDR now that are not detected by GeneXpert. So they're still having to go back to the culture tests, grow the culture to be absolutely certain. So already that new piece of developed, you know, technology is not foolproof now.
NEUMANNAnd so it's always like we're always one step behind this. And just to draw back, what people need to remember is, when we talk about this pill regime, when we talk about length of time, you know, if I said to you, oh, let's go to dinner in four weeks or five weeks, you can handle that, maybe six months. But when we talk about, let's do something in two years' time, you can't grasp that. And that's why people fall in depression. We're talking about, on average, it'll be approximately 240 injections and 14,600 pills you will have consumed in being treated with MDR.
REHMAnd you're listening to "The Diane Rehm Show." Going to open the phones now, 800-433-8850. Let's go first to Cori (sp?) in Cambridge, Mass. You're on the air.
CORIHi. Thanks to your guests for dealing with this issue. I have a question. I used to work on MDR-TB in northeastern Nigeria. And the question is about generation of multi-drug-resistant strains. One of the main issues that I saw was in corruption in terms of distribution of first-line drugs. So I would go to visit the local distribution centers.
CORIAnd they would have received the first-line drugs and started to distribute them for about a month. And then suddenly, they would disappear. And so this is a huge problem in terms of, you know, taking drugs short term and then stopping. And I'm wondering what kind of efforts are being put into work with governments and maybe religious organizations to try to, you know, head off the problem at that point.
REHMJezza, what did you find in your own filming there?
NEUMANNYeah, well, one of the things that the Swazi government have in fact done is actually maintained supply. That's been sort of their key thing. But for them, they're struggling with finances to decentralize care. And they are finding it difficult to get global funds through because of previous cases of corruption and, you know, accusations of money not going where it should go.
NEUMANNSo I actually see this as a major problem because here you have a fantastic TB program. Themba, who runs their in-country, is awesome in what he's trying to do, but he can't get his hands on the money. And there isn't really a structure for policing global funds or policing these funds when they go into a government. So I believe, too, yeah, there is something that somebody somehow needs to work out. How do we -- because the minute you stop Themba getting that money, he can't cure his patients. And it's going to spread.
GINSBERGAnd drug shortages are a problem all over the world, even in the United States.
FAUCIParticularly injectable drugs, right.
REHMWe have an email from Mike in Virginia Beach. He's a healthcare professional. He says his employer does not screen anymore because of a shortage of screening materials. Is that true? And if so, why isn't there more of an effort to screen, Dr. Ginsberg?
GINSBERGSo there have been shortages not only of drugs but of the diagnostics as well. Both of the skin tests that's typically used and also the newer generation of screening assays called -- well, they're blood assays. It's called Interferon-Gamma Release Assays. And production and supply has been sporadically a problem for those as well.
REHMYou know, I was so struck in the film, Jezza, by the patient who could no longer be treated. She was told that none of the drugs were working on her anymore. So she would have to leave the hospital and go elsewhere. My heart broke for her.
NEUMANNYeah, absolutely. I mean, that's the travesty of this. You know, these are real human beings. You know, we're not just talking about, you know -- these are real human beings, real lives. And this disease, when it gets to the point that it goes beyond the extent of the drug-resistant, there's nothing anyone can do, you know, other than sort of just keep you comfortable. But, you know, for her, she's living on her own, and the stigmas ostracize you.
NEUMANNAnd, you know, that's a big issue which is why, I mean, I suppose for me when we draw on immigration -- we don't want to draw on it too heavily 'cause I don't want suddenly a witch hunt on immigrants. You know, because I'm -- you know, people travel internationally all the time.
NEUMANNSo you've got plenty of middle class people, Americans born and bred, who are traveling to these countries, traveling to other lands who could be infected with a bacteria who could then have something happen in their lives that means their immune system is compromised, and the disease comes out. So there is a multitude way of doing it, but your life does get torn apart.
REHMJezza Neumann, producer, writer, director of a new Frontline documentary. It's titled "TB Silent Killer." It premieres tonight on PBS, online at PBS.orgfrontline. Short break here, more of your calls when we come back. Stay with us.
REHMAnd welcome back. As we talk about the spread of tuberculosis throughout the world, Dr. Fauci, you were saying that of the 8 million people…
REHM…9 million people diagnosed that…
FAUCIThat of the 9 million people who get sick each year with active tuberculosis, 3 million of them don't have access to care in the sense of even getting under the care of a physician or a healthcare worker, much less getting on drug. They refer to them as the missing 3 million.
FAUCIThat's really bad because that means that they are individuals who clearly have a higher likelihood of spreading tuberculosis to someone else.
REHMHow easily is it spread?
GINSBERGSo the good news is that typically you need close contact with someone over extended periods of time. So the usual places where TB is spread is in the home, in schools, in these, you know, crowded busses and taxis in developing countries -- those are the places -- and in what are called shebeens, so the bars in South Africa, for example, which are often in the basements of churches and other buildings.
FAUCIRight. Or the mines, the mines in South…
GINSBERGAnd the mines, absolutely.
FAUCIYeah, in Africa were crowded mines, yeah.
GINSBERGThere's a huge problem of TB amongst the miners in South Africa.
REHMOf the people you talked with, Jezza, do any of them understand how they contracted TB?
NEUMANNYeah, absolutely. Little Nokubheka, the 12-year-old we see, it's believed that her father contracted TB in the mines and passed it on to the mother, and then the mother passed it on to her.
REHMThe mother dies. The father dies.
NEUMANNAnd the mother dies.
REHMAnd then she gets it.
NEUMANNShe gets it.
REHMAnd her brother does not get it.
NEUMANNNo. He didn't get it. In part, that was because little Nokubheka slept on the same bed as her mother. So that's that close proximity we're talking about on a regular basis, and so that's how she ultimately contracted it.
REHMAll right. Here's an email from Susie in San Antonio who says, "I was exposed to TB. A co-worker was diagnosed with it many years ago. Ever since, I test positive for TB but have never had any symptoms. My doctor told me if one tests positive, that means the disease is present, even if there are no symptoms. An earlier doctor told me I was testing positive just because I had been exposed. He said not to worry about it. Which is true?" Dr. Fauci.
FAUCIWell -- OK. So if you are negative -- namely you have a negative test -- and then you get exposed -- the doctor said disease. The person is infected. If the person is not feeling ill, but they go from a negative test to a positive test, that's an acute conversion. The recommendation for those people is that they get what's called a prophylaxis against getting the disease because, yes, they are infected because they've converted from negative to positive.
FAUCIAnd the recommendation is to give a single drug called isoniazid for -- if you give it for six months, you have a 90 percent decrease in the likelihood that you're going to get any active disease at any time.
REHMHow sick is she going to feel if she gets these drugs?
FAUCIWell, isoniazid, like any drug, has some toxicities. As Dr. Ginsberg had said, to be on a drug for six months -- and then some people even recommend going up to nine months for the prophylactic -- but six to nine months.
REHMSo if you were Susie in San Antonio…
FAUCII would go on isoniazid. If I converted from negative to positive -- because sometimes people have been positive ever since they were children, and nothing ever happened. So you don't want to…
GINSBERGYeah, so the problem is that someone's who latently infected, as Susie appears to be, can develop the active disease at any time in her life. So as she ages and her immune system becomes a little weaker, if she develops diabetes or anything else that impacts her immune system, she could develop the active disease.
GINSBERGTaking isoniazid, as Dr. Fauci said, cuts down the chances of that ever happening probably by over 90 percent, assuming you live in a country like the United States where you're not likely to get re-infected.
REHMAll right. Here's an email from Lynn in Gettysburg: "When I entered college in 1966," she says, "a skin test was positive. I was diagnosed with inactive TB bacillus in my lung. Drug treatment was not recommended then or since. I came from a middle class American background, no special exposure to immigrants or impoverished conditions. Am I at any special risk of developing active disease as I age? I'm now 66, in reasonably good health."
FAUCISo there's a 10 percent approximate chance that over the lifetime of a person who has no other issues that they will go from a latent to an activated TB. If you're HIV-infected, which she obviously is not, but if she's HIV -- if someone's HIV-infected, there's a 10 percent per year chance that you will go from an inactive to an active form. So her specific question to you, Diane, am I at any risk? And the answer is, yes, you are. You're at a 10 percent lifetime risk of going from inactive to active TB.
REHMSo at 66, would you recommend if you were her doctor?
FAUCIWell, that's a judgment call. I probably, at a 66-year-old person, would watch them carefully rather than put them on the drug. But that's a judgment call.
GINSBERGThe isoniazid is not typically recommended for older people because it can damage your liver.
REHMOh, I see.
GINSBERGSo probably watching carefully is the right way to go.
REHMAll right. And we have an email from Jay. "What was the purpose of the TB sanatoriums we once had here in the U.S.? What part did they play in the near eradication of TB here in this country?"
FAUCIWell, when you didn't have drug and what you needed was, "A," rest...
FAUCI...good nutrition, sunlight, air, breathing air. It's kind of the semi-homeopathic medicine, which just -- do the right thing, get good nourishment, get good rest, get good…
REHMWhich they can't get in Swaziland.
FAUCISo that was really the purpose of it. A healthy environment over a long period of time. Because even if you look at people who have active disease, if you go and look at all the numbers, you can have -- when you don't treat people -- up to a 50 percent or more mortality. That means that about 50 percent of the people are going to spontaneously, ultimately, even if they were sick for a period of time, control it. The better way to control it is under a healthy environment. Hence the rationale for the sanatoriums.
REHMAll right. Let's go to -- let's see -- Deborah, in Wildwood, Fla. Hi, you're on the air. Go right ahead.
DEBORAHGood day, Diane. Thanks for taking my call.
DEBORAHI had the misfortune -- and, Dr. Ginsberg, you'll appreciate this. We live in a very powerful nation and the most richest nation in the world, and I somehow, someway contracted atypical mycobacterium fortuitum antibiotic-resistant tuberculosis after a very sloppy workers' compensation orthopedic total knee. It was found out years later, after the settlement, that somewhere in the operating theater, that somewhere in there, there was sloppy cleaning of the theater itself.
DEBORAHBut if it wasn't for the tenacity of the infectious disease doctor in Florida Hospital-South, Orlando, and of the orthopedic traumatologist, I would have died three times in the course of about a year. I've lost about 40 percent of my leg, but I'm vertical. I'm not horizontal. And quite a bit of my quad muscles are gone due to the much of the, you know, the (word?) necrotic tissue that was -- that got ate away.
REHMAll right, Deborah. I'm so, so sorry for your experience. It does suggest that you can get TB in many different ways. Dr. Ginsberg?
GINSBERGSo it sounds -- and, Deborah, I also am very sorry for the experience you've been through. You said it was atypical mycobacterium fortuitum, which is actually a close relative of mycobacterium tuberculosis but not the same bug. And TB, you would not typically get through surgery. It's transmitted through the air. But there are a lot of what we call environmental, non-tuberculosis mycobacteria in the world, which can be transmitted potentially through water or soil and other ways. So in this situation it actually isn't TB. It's a close relative.
REHMJezza, did you want to comment?
NEUMANNWell, I was just going to say, I mean, obviously with all of this, one thing I'd like to draw back on is just to remember that, you know, people can get through it though. And I think that this -- I don't want people to suddenly be going -- leaving this show now and go, oh, God, I'm not going to watch that tonight. That's going to be horrific.
NEUMANNBecause there is -- as I say, Nokubheka is a spirit you can't miss out on because on any level you might take this documentary as a piece of informative information that you'll learn about TB. But equally I think it's a great piece on human spirit and how she gets through what she gets through…
REHMThat little girl is just so special.
NEUMANNAnd she retains the smile and the twinkle in her eye. And when you're driving to work tomorrow, I guarantee, when you're stuck in traffic, if you just take one little moment to think back on Nokubheka, you'll realize your life isn't quite as bad as you think it is.
REHMShe's dancing the entire time, even as she's taking these drugs.
REHMAnd she does go through a healing process.
NEUMANNShe does go through a healing process, and it proves it can work if it's caught early. And I think one of the most amazing little lines from her is -- she's been in the hospital. We've seen her on several occasions. And she's reminiscing about it. And then she goes, I have learned a lot about TB since I've been here.
REHMNot that one really wants to, but there she is.
NEUMANNExactly, at her age.
REHMBut it doesn't seem to have affected her ability or her desire to learn. She says she wants to be a computer analyst. She wants to work in a big corporation in one of those tall buildings. So she's just really -- I don't know how you found her.
NEUMANNWell, I guess it was luck. But, I mean, she's -- yeah, I mean, she is inspirational, I think. And really, at the very least, I think she shows you why these films are so important because...
REHMDo the young get through these drug reactions more easily than older people?
NEUMANNYeah, the young have a bit of a double-edged sword because, yes, the young, they tend -- the toxicity levels don't seem to affect the young quite the same way. They don't have to have the same levels of the drug. So you tend to find that the loss of hearing is not as commonplace in children as it is in others. The down side for the young is it's much harder to detect. It's really hard to detect TB in young people because you have to get a really deep sputum from deep down in the lungs. And often the sputum that they get, it's not complete enough for them to grow the cultures.
REHMI see, I see.
NEUMANNSo you find it can take a protracted period of time for young people to get diagnosed. And that's one of the big issues.
REHMAnd you're listening to "The Diane Rehm Show." Let's go now to Alison who's in Muskogee, Okla. Hi there.
ALISONHi. How are you?
REHMI'm fine. Thanks. How are you?
ALISONGreat. Well, I'm finding all this very interesting. But I was wondering, when you were filming, did you ever encounter non-profits that could help with making sure that the money needs to go to the right people? Like, you know, Rotary International has done that with polio, making sure that the on-the-ground volunteers are getting the money and the vaccines where they need to go.
NEUMANNYeah, I mean, absolutely. On an NGO level, yes. So when you look at Doctors Without Borders, Medecins Sans Frontieres, you know, the work they are doing they do themselves. So when they come in and support the government, the drugs that they are receiving and distributing go through them. So they are completely secure. But, obviously, the government has its own hospitals that it runs independently.
NEUMANNYou know, as I say, for the TB program in Swaziland, absolutely, the drugs are there. They're distributed as best they can. For them, it's about the money to do the outreach programs, which is what they're struggling with, you know. They have one vehicle that's not working very well, so they're heavily reliant on Doctors Without Borders for their 4x4s and their outreach teams. So, yes, totally, within the context of each different non-profit, within countries, they're able to manage that themselves. But what we've eluded to before was that obviously no non-profit has control over a government.
REHMAll right. And finally, a caller, Steve, who did not stay on the line, says he has a daughter in senior high school. She was exposed to TB likely on the train to school. She's been on a treatment regimen. Can you talk about exposure?
FAUCIWell, as we said before, Diane, if she has been put on treatment by her physician -- I assume that she converted from a negative to a positive. So if she's on treatment, the exposure, as Dr. Ginsberg correctly said, it's unusual for a very brief encounter with someone who has been infected that you would get infected.
FAUCIIt's usually prolonged exposure for a considerable period of time, usually within a household. The fact that she got exposed on a train must have been that she was sitting right next to the person for several hours for that to happen. Anything can happen in biology, but it'd be unlikely in a casual exposure for someone to transmit.
REHMIf every single one of us and you, perhaps most likely, Jezza, because you have spent time there -- if every single one of us underwent the test for TB, might something show up?
FAUCIWell, it depends. I get tested every year because I go to Africa, or I see patients, literally every week, some of whom have tuberculosis. So I, as a normal routine part of our screening, I'm negative. But I keep getting tested. And if I convert to positive, I'd go on treatment.
REHMHow about you, Dr. Ginsberg?
GINSBERGThe same because I travel overseas pretty extensively as well. I get tested routinely, and, so far, I've been lucky. I'm negative.
NEUMANNI've never been tested. So…
NEUMANNSo I don't know, you know. I will wait and find out. And as I stay healthy and my immune system's strong, it's not something I need to worry about.
REHMWould it be good to be tested, having spent that much time there?
GINSBERGJezza, get tested.
FAUCIDo it, yes. Go ahead. Get tested.
REHMAll right. There you go.
NEUMANNYou know, I've been asked this question several times since I've been in the country. Probably…
REHMThere you go. All right.
NEUMANNYes, because, otherwise, every time I cough, people look at me in a very strange way.
REHMJezza Neumann, he's producer, writer, director of "TB Silent Killer," premieres tonight on PBS, Dr. Ann Ginsberg, chief medical officer of Aeras, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Disease. Make sure you get tested, Jezza. Thank you all so much.
GINSBERGThank you, Diane.
REHMAnd thanks for listening. I'm Diane Rehm.
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