Diane speaks with Dr. Roger Kligler who is living with advanced stage cancer on why he's suing the state of Massachusetts for the 'Right to Die' and with Dr Jessica Vitter, and intensive care and palliative care specialist on why better communication is so needed between doctors and patients facing end-of-life issues.
It is estimated that around 3.2 million Americans are infected with Hepatitis C. Often referred to as the “silent killer,” the blood-borne virus can cause serious liver damage – and even death. Recently, the Centers for Disease Control and Prevention recommended that all baby boomers, born between 1945 and 1965, be tested for the virus. These new guidelines are expected to save more than 120,000 lives. While awareness has increased and more treatments have become available, many Americans still don’t know they have it. Diane and guests talk about how to better identify and treat Hepatitis C.
- Martha Saly director of the National Viral Hepatitis Roundtable.
- Paul Roepe chemistry and biochemistry professor at Georgetown Medical University and co-director of the Georgetown Center for Infectious Disease.
- Dr. David Thomas director of the division of infectious diseases at Johns Hopkins Medicine and former director of the hepatitis C clinic at Johns Hopkins.
- Dr. John Ward director of the division of viral hepatitis at the Centers for Disease Control and Prevention.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. It's estimated that more than two million baby boomers in the U.S. are infected with Hepatitis C, but many don't know they're living with the virus. Joining me in the studio to talk about how to better diagnose and treat Hepatitis C, Dr. David Thomas. He's director of the Division of Infectious Diseases at the Johns Hopkins School of Medicine. Paul Roepe is co-director of the Georgetown Center for Infectious Disease, and joining us from a studio in Santa Rosa, California, Martha Saly, director of the National Viral Hepatitis Roundtable.
MS. DIANE REHMDo join in our conversation, call us 800-433-8850, send us email to email@example.com, follow us on Facebook or Twitter. And good morning to all of you.
REHMGood to have you with us. First, we're joined by Dr. John Ward from Atlanta, Georgia. He is director of the Division of Viral Hepatitis at the Centers for Disease Control and Prevention. Good morning to you, sir.
DR. JOHN WARDGood morning, Diane.
REHMWalk us through the recommendations that the CDC has released.
WARDThe CDC now recommends a one-time test for Hepatitis C for all persons born between 1945 and 1965, the so-called baby-boom generation. And Diane, as you've already mentioned, the reason we're making that recommendation is because many of those persons are unaware of their infection, between 45 to 85 percent of those persons. Hepatitis C can lead to liver cirrhosis, end stage disease liver cancer, and that the disease and death from those conditions are rising in the United States, and indeed, if you look at deaths from Hepatitis C, they have recently surpassed a number of deaths from HIV/AIDS, and about three out of every four persons that die now from Hepatitis C are in this baby-boom generation.
REHMI guess my question would be why such a broad call for testing, since I gather Hepatitis C is transmitted either by use of infected needles or by blood exchange, or blood transfusion. Why wouldn't you rule out those people who haven't engaged in any of these?
WARDWell, that's correct. Hepatitis C virus is a blood-borne virus.
WARDAny exposures to blood can result in transmission. The particular predicament of persons of this birth cohort is that they were infected decades ago, before the virus was discovered in 1989, and there were multiple routes of transmission. Indeed, drug is one of those, either injection, less commonly, but can be a risk of other forms of drug injection -- drug use I should say. Sexual contact can lead to transmission although not as frequently as blood exposures, and then exposures in the healthcare setting, blood transfusions, exposures to other blood products, and just exposures to medical procedures where infection control is not rigorous, and which was more often the case back in the '60s, '70s, and '80s, than it is today.
WARDAnd when we look at national surveys, we do find that persons who report that they injected drugs in the past, have a much higher prevalence or frequency of Hepatitis C, but in those same surveys, we find that people who are infected with Hepatitis C almost 50 percent of them report no risk for infection, either representing those who are reluctant to report a risk, or truly don't know a risk that may have happened in a healthcare setting, or through some other exposure that led to transmission that they were aware of.
REHMFinally, I gather there's been an uptick in infections through people injecting drugs like Oxycontin. How big of a problem is this, how does it compare to the use of drugs and injecting them back in the '60s and '70s?
WARDWell, we do have an emerging problem of Hepatitis C transmission among adolescents and young adults in a number of different states, such as in Massachusetts and in Wisconsin as we've already reported from CDC. And again, it's a reminder that Hepatitis C transmission is occurring in the country. We haven't stopped all transmissions, and new infections are happening among young persons.
WARDWe are concerned that this problem is growing as more states are identifying increases in their number of new infections, and we're hard at work at that. So we see testing as having two functions. One to identify this leading edge of new infections that are occurring that you just referred to, but then we have this large population of two million persons who are in this baby-boom population who are unaware of their infection and have been infected for several decades now, and are progressing toward end stage liver disease and liver cancer at a time when curative therapies that can clear that infection are becoming more widely available as new drugs come on the market.
WARDAnd the link between that population who's unaware of their infection, and these new therapy opportunities is Hepatitis C testing, and that's CDC took this move. We really consider this a health crisis for baby boomers that we can do something about.
REHMDr. John Ward. He's director of the Division of Viral Hepatitis at the Centers for Disease Control and Prevention. Thank you so much for joining us, Dr. Ward.
WARDThank you, Diane.
REHMAnd turning to you know, Dr. David Thomas, what's your reaction to the CDC recommendations?
DR. DAVID THOMASWell, I think in a nutshell, what we were doing wasn't working, and the fact that it wasn't...
THOMASBecause as John mentioned, there were up to two million people who had Hepatitis C and didn't know it. And the consequences of that were increasing because the treatments were improving. So you could have said well, at one point in time when we had just discovered the virus and our treatments worked less than one out of ten times we gave them, that what's the point? Why detect the infection? Why make someone...
REHMIf we can't treat it.
THOMAS...miserable if you can't do anything about it anyway?
THOMASSo just don't bother. And that was once the prevailing attitude. Recently the treatments have improved, and looking into the next couple of years they're going to improve rapidly, and the consequences of treatment, the side effects will also diminish, and so the convergence of these factors, that so many people have the problem, that it's increasingly likely to cause harm to them, cirrhosis and liver cancer, and then the opportunity to stop that with treatment.
THOMASThose are the factors that when you bring them all together have made the Centers for Disease Control say we've got to do something different. What we've been doing hasn't worked.
REHMDr. David Thomas of the Johns Hopkins University School of Medicine. Paul Roepe, what do you see as these recommendations, do you see pushback combing from them?
DR. PAUL ROEPEVery good question. I think there might be some in certain corners. Again, in part perhaps because of the social stigmas with the frequently cited IV drug use as one principle route of transmission.
REHMBut isn't that the reason for calling for everybody to be tested, just exactly that in order to avoid that social stigma?
ROEPEAbsolutely. Absolutely. And another good point is, well, there are projected to be somewhere around a million deaths if we don't start doing testing between 2020 and 2030, so that's, you know, we're not talking anything that isn't incredibly serious. The therapies up until fairly recently were only about 50 percent effective, but they're now 70 to 80percent effective, so we can cure people a lot more easily.
REHMOkay. First of all, how much is the testing going to cost, how much is the treatment going to cost?
ROEPESo there are even home tests available. People can go online or talk to their physician and get a home Hepatitis C testing kit if they wish, and those are oh, around a hundred dollars or so. Testing in a physician's office setting is probably going to -- the real costs are probably $50. I don't know what various insurance companies are going to reimburse for, and so on. I couldn't quote you the numbers and the different companies out there, but it's modest costs, but not terribly expensive.
REHMAnd the treatment?
ROEPEThe treatments right now, as Dr. Thomas eluded to, are substantially better. So just a year ago the standard of care probably cleared about 50 percent of infections, and now we're -- it's still preliminary data, but up to 70 or 80 percent in some studies, and we're going to do a lot better than that very, very shortly.
REHMPaul Roepe, professor of chemistry and biochemistry at Georgetown University Medical Center. When we come back, we'll talk with Martha Saly of the National Viral Hepatitis Roundtable.
REHMAnd we're back talking about hepatitis C. The Centers for Disease Control has now recommended that all individuals, the baby boomers who were born between 1945 and 1965 be tested for hep C. It is often a deadly disease, can turn into cancer of the liver or cirrhosis of the liver and be deadly. I want to turn now to Martha Saly, who's director of the National Viral Hepatitis Roundtable. Good morning to you, Martha.
MS. MARTHA SALYGood morning, Diane. Thanks so much for having me.
REHMI know you were diagnosed with hepatitis C in the 1990s. You were fortunate enough to be treated and cured. How did you find out you had the virus and what kinds of treatments did you receive?
SALYI actually found out quite early on in the '80s that there was something abnormal going on in my liver. At that time they called it non-A, non-B hepatitis because, as Dr. Thomas pointed out, they didn't have a test yet for hepatitis C. Later in the late '90s my physician noticed that I had this in my record and suggested a hepatitis C test. And so I was tested, came back positive and went through treatment. In 1999 through 2000 I went through 48 weeks of interferon treatments.
REHMHow expensive was that, Martha?
SALYWell, I was quite fortunate at the time that I had excellent health care insurance. And so it didn't cost me a penny. I believe at the time the treatments were about $30,000 a year. And that -- it was the sort of old form of treatment where I took a shot three times a week and took some oral medications. Those treatments have changed and improved, as the other doctors have mentioned, and they have gotten more expensive.
REHMMore expensive? David Thomas, how expensive?
THOMASWell, as Martha just said, to the individual patient it can be a $5 or $10 co-pay each month and it can be relatively insignificant...
REHMIf you have insurance.
THOMASIf you have insurance. If you don't, it's really inconceivable to pay for medications. The current treatments can range from $50,000 a year to as much as $120,000 a year for a 48-week course of treatment.
REHMAnd that is the only treatment available.
THOMASThat's the standard care.
REHMThat's the standard care. What's the difference between treating hepatitis C and HIV infection?
THOMASWell, there are a lot of similarities between the viruses, but the treatments are completely different. They don't have similarities in their lifecycle or anything that allow you to use one medicine for both of them. So...
REHMIs there a co-infection rate?
THOMASThere is. About one out of every four persons with HIV has hepatitis C. Somewhere in one out of twelve with hep C has HIV.
REHMMartha, what was your reaction to the CDC recommendations?
SALYI was very pleased to see the recommendations, not only as a former patient, but in my work as the director of the National Viral Hepatitis Roundtable. We've been advocating for this for quite some time.
REHMSo you believe that people will come forward even if perhaps they were infected because of drug use? Or -- I mean, is this kind of a no questions asked approach?
SALYWell, I'm certainly hoping so. In the past, patients with hepatitis C were sort of relegated into categories of, I did something really stupid or I did something illegal or I'm an innocent victim. And to have to explain yourself every time you talk to somebody about having hepatitis C becomes more and more stigmatic, especially in physicians' offices. This hopefully will allow doctors not to have to ask those embarrassing questions that they may not even want to ask and certainly will help the patient not have to deal with that stigma.
REHMDr. Thomas, when you talk about hepatitis C and you say a lot of people don't even know they have it, what are the symptoms? What does it look like?
THOMASWhen you first get the infection only about one out of every five individuals feels anything. They don't get jaundice, they don't -- they might feel like they have a cold, but not enough to make them go see a doctor and get checked. Afterwards, the infection causes no symptoms that would tell you, hey, I've got a liver infection and make you got get tested. You might feel fatigued, you might have some weakness or depression, but nothing that would say, hey this is hepatitis. I think I need to have a hepatitis test. And that's the problem.
REHMCan you -- if you -- suppose you end up jaundiced, you're going to know that you have something. Can you treat yourself?
THOMASNo. There's no treatment that you can buy over the counter that would work against hepatitis C.
REHMBut there is a good diet that one can treat oneself with.
THOMASWell, I think there's -- eating healthy is something that we encourage no matter what. There's no proof that a particular diet's any better than another. We like to encourage weight control and there's some evidence that keeping your weight under control's helpful.
REHMIsn't there something to the effect that carbohydrates -- during a period of active hepatitis C that carbohydrates should be kept to an absolute minimum. Protein should be emphasized?
ROEPEThere are a variety of studies out there. I don't think anything is conclusive. I think there are a lot of suggestions and potential correlations out there. But one of the strongest that I've come across anyway is alcohol use. And it's important to recognize that after the acute hepatitis infection there's a chronic infection period that can be 20 years or longer. During that period when you're -- when you have the infection, but you're still mostly asymptomatic, lifestyle changes can have a huge effect -- soft studies suggest anyway -- in curtailing the emergence or the seriousness of the hepatitis C disease that eventually may or may not come.
ROEPEAgain, it's important to recognize that everyone that's infected is not going to develop cirrhosis or hepatitis C-related liver cancer. that's going to be, you know, 20, 30 percent or so. Of those people maybe 5 percent will die so there's a lot of people that are going to be infected with a chronic disease where lifestyle changes -- best evidence we have right now -- can indeed have an important effect.
REHMThere was a recent story on NPR about a medical technician, David Kwiatkowski. Do you know about this story, Paul Roepe?
ROEPENo, I don't know the story actually.
SALYWell, I understand -- I don't know a lot about the story, but I do understand that this individual was responsible for exposing a number of people in a hospital in New Hampshire as well as other states that are popping up where he worked. And It certainly is a big concern to the people who put their trust in going to the hospital for a surgery or for a treatment and then finding out later that they were exposed to a possible deadly disease.
REHMDr. Thomas, do you know anything about this story?
THOMASWell, I do and I've read about it in the papers as you have. I think that what the story helps us get our heads around is how -- let's say that this particular instance, as unfortunate as it was, where an individual was giving to the patients hepatitis C.
THOMASWell, or it just occurred through his appropriation of -- I think the investigation's still going on. But the point that is worth underscoring is that the individuals infected in this way -- what if this wasn't such an extreme example? What if it weren't all up and down the east coast and in the news and everything? The individuals that were infected would never have known. And that goes back to the fact that you can get hepatitis C without knowing it. And you can have it and you would want to know it if you had it because there are treatments. And so that's kind of the core issue with this testing recommendation. If you have it, you want to know it so get a test.
REHMAll right. Let's open the phones, 800-433-8850. First to Detroit, Mich. Good morning, Dennis. You're on the air.
REHMHi there. Go right ahead, sir.
DENNISI was diagnosed with hepatitis C in 1998, although I had been told two times prior to that that I had something I needed to go see my doctor about, but I was too busy denying it at that time. I was told that the only cure was, at the time I was diagnosed was the interferon therapy and I really didn't want to have the flu continuously for a year, as well as possibly losing hair and everything else.
DENNISSo I sought an alternative route and I discovered that through diet control, loading up on a lot of Vitamin A, drinking carrot juice daily, as well as taking milk thistle to repair the damage of my liver and using licorice root because the sugar that's in the licorice root stimulates my thymus gland to generate alpha interferon within my body. It's a slow going process, but after five years, my viral count was undetectable.
REHMThat's great news. What do you think of that, Dr. Thomas?
THOMASWell, Dennis brings up a lot of important points. As Paul mentioned earlier, it is important to discover you have the infection so that you can cut down on alcohol and move towards a...
THOMAS...a healthy diet and a healthy lifestyle. The types of treatments that he's mentioning I'm not aware of having been tested. One of the -- but it's clear that in his case having the virus gone in his blood is the important thing, and congratulations, Dennis.
REHMI should say. And to Melissa in Cincinnati, Ohio. Good morning, you're on the air.
MELISSAGood morning, Diane. Thank you for taking my call.
MELISSAI, too, like the last gentleman, was diagnosed in 1998. I didn't know I had anything. My doctor just did a regular test and said you need to go get this checked out. I did. I was on interferon and ribavarin for like eight, ten weeks and I broke out in a rash from head to toe. They ended my therapy with that and said -- this is what the doctor told me. One day you're going to start hemorrhaging from your orifice and when that happens, get in the ambulance and go to the hospital. Don't drive yourself and you're going to need a liver transplant.
MELISSAIt ruined my life. The job that I had which was the best job I ever had, everybody there started treating me like I was the scum of the earth. I don't have tattoos. I don't do intravenous drug abuse. I don't know how I got it, but nobody knows. I have it now where I work and I've been here for ten years. I work hard. I watch my diet, but I've told my children that if it comes to liver transplant, I don't want one. I just want to go. It ruined my whole life and I'd hate to see the world mandated to have to go through what I went through.
REHMMelissa, how do you feel now?
MELISSAI feel really good.
REHMI'm glad to hear that. You're listening to "The Diane Rehm Show." What about these extreme reactions to interferon, what she went through, Dr. Thomas?
THOMASNo, those are -- the treatments that we have now are difficult. They're difficult to take and they can be required for up to 48 weeks. And so both Dennis and Melissa brought up both the fear, the concern of these side effects and the actual experience with them are major issues. Now we're looking forward to new treatments that don't have the same kinds of consequences, that don't even include interferon as a matter of fact.
REHMDidn't the FDA approve a couple of new drugs last year?
THOMASYou're right. And after going since 2002 from our last new drug approval all the way up until May of last year, we had no new ones. Then last year we had two in the month of May. Now it's important to notice that those two new drugs don't take the place of interferon and ribavarin. They're added to interferon and ribavarin. They make it more effective, but they make it more difficult to be treated.
THOMASFor sure they make treatment more effective and that's why they were approved unanimously. But they also make it more difficult to take treatment and that's why we're really looking forward to being able to have safer medications that are easy for patients to take.
REHMMartha, you talked about receiving treatment when you were diagnosed. What did you take? Was it interferon and did you experience the kind of side effects Melissa talked about?
SALYYes, Diane, I did take interferon and ribavarin and it was previous to the treatments that came out in 2002 that sort of made the interferon a little bit easier. And I did have a lot of side effects. I had depression, I had headaches, I had -- I was tired. I felt like I had the flu, however I was luckier than Melissa because I was able to get through those. I didn't have the, it sounds like, extreme rash that she had.
SALYI just want to, you know, talk about Melissa's concerns about the stigma that she felt and her sort of trying to distance herself from having hepatitis C. I think it's really important what Dr. Thomas said about new treatments that are in the pipeline that will get rid of the need for interferon. And people like Melissa are the kind of people who are waiting for that. I also hope that Melissa continues to see maybe a better doctor than the one who told her to go home and wait to die, because that really doesn't have to be the case.
REHMPaul Roepe, how do you explain that some people can get rid of the virus on their own and other people must go through this extraordinary treatment?
ROEPEThat's an extremely good question. I think if I could explain it, I might be in the running for a Nobel Prize or something along those lines. It's an extremely difficult question. There are a lot of studies going on to try to get at the bottom of this. But right now, all we can really point to are associated factors that seem to be in people that spontaneously clear versus people that don't. But again, nothing's definitive, nothing's been proven so...
REHMWhat percentage of people do spontaneously, on their own, get over it?
ROEPESure. It probably depends on the cohort of people you're referring to, but overall, in general, about 20 percent, roughly one in five will spontaneously clear.
REHMDr. Paul Roepe. He's professor of chemistry and biochemistry at Georgetown University Medical Center. Short break here. More of your calls when we come back.
REHMAnd we'll go right back to the phones as we talk about baby boomers and Hepatitis C. Let's go to Vivian in Annapolis, Md. Good morning, you're on the air.
VIVIANThank you. I keep asking myself why baby boomers. On one hand, is it because maybe we were the heaviest drinkers or use more drugs? There's not a concise answer. On the other hand, for me, I think about the baby boomers were -- and I am a baby boomer. We were the ones who would go to school, nurse would show up and we would line up and they would give us booster shots. And I don't remember them cleaning those needles or that gun that they would shoot us with in the arm that left a scar. And I don't know much about hepatitis C, how long it would sit in a body before it shows up. So maybe somebody could answer that. Why baby boomers and not other generations?
ROEPEYeah, that's a real good question. And I think it's very complicated. I think there's a number of factors sort of adding together here. I think it's also perhaps important to step back and look at where medical practice has gone during our lifetimes, if we're in the baby boom generation. So other risk factors like hemodialysis, all sorts of surgical procedures that we may not have done very many of prior to 45.
ROEPEImmunizations potentially, there are famous examples of this, when immunizations have not been done properly, like in Egypt where 20 to 25 percent of the population is infected with hep C due to a massive -- most likely due to massive immunization campaigning (unintelligible) . So maybe there's a variety of risk factors associated with this cohort of people, so it's not just one thing or another. It's not just immunizations.
REHMBut tell us what else would be in that group of risk factors, Dr. Thomas.
THOMASRisk factors for acquiring hepatitis C?
THOMASWell, the dominant risk factor is clearly -- in the United States is clearly drug use. Now, it's important that -- injection drug use in persons that have ever injected are at the highest risk. Interestingly when we say injection drug user, we get a picture in our mind of a certain person who doesn't look very healthy and has a very difficult lifestyle. But when baby boomers were in high school and college, they know -- I mean, whether you did it yourself or not, you certainly knew friends who would inject a little bit at some party or do something like that, but not -- you know, and today 30, 40 years later they're not going to consider themselves a drug user.
THOMASBut none the less, they could've acquired hepatitis C that way. And, in fact, that's where a lot of people got it. Cocaine, there's evidence that it can be passed by intranasal use of cocaine. Get blood on the straw, give it to the next person and the blood goes into the next person. So you can almost use your imagination and start to think of ways in which blood goes from one person to another. And all of those are ways that hepatitis C can be spread.
REHMVivian, did you ever have a blood transfusion?
VIVIANNo. And I wasn't drug user, never tried one. So to me, I'm wondering why just us? Because when you say that, the drugs, I mean, I'm sure the generations, you know, like of the '80 kids, they're doing the same thing, but why not them? But -- okay.
REHMIt's a good question. I mean, you've got an awful lot of people now who are using drugs who -- why aren't they included in this cohort of people that CDC is saying get tested?
THOMASWell, the short answer to that is that statistically they're not as likely to have it. The chances of baby boomers having it is almost -- it's more than three times persons who were born later. So it really comes right down to that.
THOMASNow, why that is...
THOMAS...may have to do with when I was a kid, I wasn't worried about blood. I remember the blood brother kind of thing where you would, you know, just kind of scuff yourself up and two people would rub their hands together and get blood. And that would be sort of a covenant between you and a close friend. I don't think -- I don't see my kids doing that. I just don't think -- the casual regard for blood that we had is gone. And HIV drove it out of society.
REHMAll right. To South Bend, Ind. Good morning, Alan.
ALANI have a question about blood banks. I assume that blood banks test for HIV and hepatitis. And couldn't those baby boomers who haven't engaged in high risk behaviors altruistically give blood and be tested in that fashion?
ROEPEYeah, absolutely. And it's becoming standard, if it isn't already. Prior to I think 1992 most blood banks and organ donation centers did not test. But since '92 they have.
THOMASYeah, but we would not encourage someone who has concerns that they have hepatitis C to use the blood donation mechanism as a way of finding out. If you -- in fact, when you go to donate blood, the first thing they're going to do is give you a detailed questionnaire.
REHMAnd one of those questions is have you ever had hepatitis.
THOMASHave you ever had -- have you ever done illicit drugs?
THOMASAnd so that's the kind of thing that we would just encourage you to get a test by another mechanism.
REHMAll right. Thanks for calling, Alan. To St. Louis, Mo. Good morning, Nick.
NICKGood morning, Ms. Rehm. How are you, ma'am?
NICKGreat show. So I'm a drug development scientist and I've worked both in HIV and HCV. My question is this, you think that we would've learned a lesson first with tuberculosis and then HIV to have some type of coordinated public health policy to not only identify those at risk, but to aggressively treat those patients to minimize resistance. So I'm curious, I guess, to the professor from Georgetown, you live in a very political town, a very political campus (unintelligible), what's being done to kind of integrate this policy so that patients can be treated -- identified, treated aggressively and then followed up to better characterize the disease? And I'll listen off the air.
REHMAll right. Thanks for calling. Dr. Thomas, a terrific question.
THOMASIt is. And actually, you know, if you developed a drug in your laboratory that killed the virus in a test tube, but didn't work in a person because it wasn't absorbed into the body, you wouldn't stop there. You would go back to the drawing board and figure out a way to alter the chemical so that it gets into the body and actually works. And likewise we have treatments that work in a few people who actually are tested and know they have the infection.
THOMASBut we haven't figured out a way to get those treatments to penetrate and to be absorbed up in the society. And so you've nailed one of the key issues. And frankly, that's why we're having this call is because these new testing recommendations are one attempt to do just what you -- what you're calling for.
REHMAll right. Here's an email from Constance, who says, "I find a suggestion that all baby boomers should get tested for hep C because we injected drugs or were promiscuous highly insulting. It doesn't apply to me. And I never got medical care in places that used dirty needles. So please tell me how else I could've gotten infected and why I should spend money to get tested." Paul.
ROEPEYeah, again, I don't think the recommendation is go get yourself tested because we think you might have used IV drugs. And due respect to the correspondent there by email, you may or may not know what happened, you know, in a medical setting. So, again, this is just a statistical association. All anybody's pointing to from CDC is that, like it or not, the facts are if you're born in this period of time, your odds are three to four times higher.
REHMThat's very interesting.
ROEPESo, you know, and why, we could sit here and debate that, you know, for the rest of the day and we're not going to hit all of the factors. It's just do it because that's what the statistics say.
REHMWhat about the different kinds of viral hepatitis? Why are we focusing on hep C, Dr. Thomas?
THOMASThat's a great question because, for example, hepatitis B is a major public health problem for which we also have treatments. Right now we're focusing on C because -- well, because they just came out with new testing recommendations. But those are driven by a rapid -- the rapid development of new treatments that can be cured of. And that's really unprecedented. We're actually facing a period of time that is quite -- the only example I can give for it would've been the treatments for HIV that came out in the '90s that just transformed the way we thought about HIV and the way we considered it for patients.
THOMASAnd I think we're about to move into one of those eras and not -- and just like with HIV, when we found good treatments for HIV, we immediately called for widespread testing so that we could find the people with it and we could give them the treatments before they end up in the intensive care unit with an untreatable pneumonia.
REHMAll right. To Arlington, Va. Good morning, Jackie.
JACKIEHi. Good morning, Diane. Thank you for taking my call.
JACKIEMy question is sort of along the lines of what your interviewer, you know, the person you're interviewing just described, which is since those treatments are available, if people are taking those treatments and if they do become cured of their hepatitis C, what does that mean in terms of their preexisting, quote/unquote, "preexisting" condition status when it comes to getting individual health insurance?
ROEPEI'm not an expert on what various insurance companies may or may not do, but if you're cured, you're cured. And in theory it should not impact upon your acquisition of medical insurance at all.
REHMIs that reality or wishful thinking?
THOMASWell, we've -- those are battles to fight one at a time. And we start with a letter that says this person's been cured and should be considered with regard to their life insurance to have -- not have hepatitis C.
REHMAll right. To York, Pa. and to Ben. Good morning.
BENGood morning. How are you?
BENI just wanted to say I experienced the exact opposite thing where I worked a few years ago. I was able to take federal medical leave a half a day at a time when I was going through my therapy with the interferon and ribavirin. And it really worked out good with my employer. They worked with me. I was lucky.
REHMWell, it does sound as though he was lucky. I mean, it's going -- you talk about insurance companies, it's going to vary from employer to employer as to exactly how sympathetic and understanding they'll be. Thanks for calling, Ben. And to Beaufort, N.C. Good morning, Woody.
WOODYGood morning, Diane. I'm a long time fan.
WOODYI just wanted to share with your listeners, I suffered from hepatitis C for about -- I was diagnosed and had it for about 20 years. There were indications that it wasn't doing a great deal of damage and I waited for the new treatments that are coming out and that have just come out this past year. When I went for the final screening before we began the new drug therapies, they discovered a small liver tumor. And this past January at Duke University I was transplanted and received a new liver...
WOODY...for which I'm eternally grateful to the anonymous donor.
WOODYI just really want to encourage the viewers to follow the guidelines to have the test, and if at all possible, to arrange for the treatments. We consciously deferred on the earlier treatments because they were unlikely to be successful in my case and because it did not appear that a great deal of damage was occurring. But we now in hindsight realize the liver was much more severely damaged than some of the blood tests indicated. And in my case cancer was almost premature. I think I had a blood transfusion in '83, 27 years later the small tumor turned up.
WOODYAnd I apologize for being run on here, but I do want to encourage the lady who had such a negative impression of liver transplants. I'm seven and a half months out and I never experienced any pain. And it has been just a remarkable experience.
REHMWell, Woody, I certainly am glad you came through well. Congratulations and do take good care of yourself. You're listening to "The Diane Rehm Show." And to you, Martha, I know you've become an advocate for those with hepatitis C. What kind of work does your organization do and what do you hope to accomplish in the next 15 years?
SALYThe next 15 years I hope to have eliminated both hepatitis B and hepatitis C. But there's a lot of work for us to do if that's ever going to happen. The National Viral Hepatitis Roundtable really does take a policy focus. We are working in Washington, D.C. We are on the hill a lot. One of the previous callers asked about a public health response. And that's exactly what NVHR is asking for. We're asking for the federal government really to take a stand on this and to do something.
SALYThere is a bill that was introduced into this congress that calls for increased funding for testing. And we're very hopeful that that bill will continue to get attention and continue to get supporters so that the federal government will have the money that they need to be able to do a widespread public health campaign.
REHMIndeed. All right. And we'll take one last quick caller in Moore, Okla. Good morning, Larry.
LARRYHi. I'm a first time caller. I was diagnosed with hepatitis C about five years ago. I'm 65, an upper end baby boomer. About three years ago, they started me on the interferon and another oral drug treatment. After four weeks, they noticed my hemoglobin count and white cell count had dropped precipitously. They cut the dosage in half, took another test. And right after I took my six, my white cell count and hemoglobin count were down to almost zero. And so they had me stop immediately. You mentioned some new things coming on. What are they? I'd like to hear about them 'cause I can't do the interferon.
REHMAll right. Paul.
ROEPEWell, again, unfortunately right now the standard of care, and Dr. Thomas can address this in more detail, is combinations between the previous therapy and new therapies. The new therapies are more specific inhibitors of a specific viral enzyme known as protease and so it's somewhat similar -- although the drugs are very different, somewhat similar to one of the strategies used to treat HIV, which is to inhibit the ability of the virus to promote its own replication by processing its proteome with a specific protease.
ROEPESo these drugs that are out and the new ones, several of the new ones coming down the line, are protease inhibitors. Many of the other new ones coming down the line that we haven't yet seen in the clinic are going to be nucleoside analogs that are going to inhibit other aspects of the viral replication.
REHMAre you optimistic, Dr. Thomas?
THOMASI'm very optimistic. And I would encourage Larry to go see a physician that's experienced with hepatitis C and take another look at the situation.
REHMDr. David Thomas of the Johns Hopkins University School of Medicine, Paul Roepe, he's professor of chemistry and biochemistry at Georgetown University Medical Center, and Martha Saly, director of the National Viral Hepatitis Roundtable. I do hope that you, our listeners, will take these comments seriously and follow-up with your own physicians. Thanks for listening. I'm Diane Rehm.
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