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narrator:"second opinion" is brought to you by blue cross/blue shield, accepted in all 50 states. blue cross/blue shield -- live fearless "secondopinion" is produced in conjunction with u.r. medicine, part of university of rochestermedical center, rochester, new york. peter salgo: this is second opinion. i'm your host, dr. peter salgo. this week, myth or medicine -- hepatitis ccan be transmitted through a mosquito bite? hepatitis c is present in 1% of the u.s. population,so there's about 3.5 million people in this country who have it. and special guest kimberlybossley is here.

she has the same disease that she watchedher mother die from. kimberly bossley: just the depression, seeing no cure. knowing your own mortality was right in frontof you was difficult. peter salgo: thanks so much for being here, kimberly. i know you've got a lot to tellus, and i want to get right to it, but first what i'd like to do is introduce you to your"second opinion" panel. first of all -- by the way, they're goingto be hearing your story for the first time. we have primary care doctor lou papa fromthe university of rochester medical center. and dr. raymond chung from massachusetts general hospitaland harvard medical school.

and, kimberly, to understand your story, we'vegot to go back quite a way in time. tell me a little bit about your past medicalhistory, and share it with everybody. kimberly bossley: um, my mom actually was a 1965 kidney transplant. peter salgo: can we just stop just for a moment to pointout, that's early. kimberly bossley: mm-hmm. peter salgo: we didn't do a lot of transplants of anythingin 1965. so your mom was a pioneer. kimberly bossley: yes. peter salgo: okay. go ahead.

kimberly bossley: and always wanted kids, but was told thatshe couldn't because they didn't know how it would end up with being a kidney-transplantpatient. peter salgo: because the anti-rejection medication mightaffect the children and all. kimberly bossley: exactly peter salgo: so i'm guessing she went ahead and had kids. kimberly bossley: yeah. peter salgo: you're here. kimberly bossley: so she talked to the doctors, and they said,"go ahead," and was born in 1968, first baby in the u.s. under a kidney-transplant patient. and about fifth in the world.

peter salgo: so what happened when you were born, aroundthat time, for your mom and for you? kimberly bossley: she had lost a lot of blood during the birthand had to receive a transfusion. and i began a sleeping sickness, and theyweren't quite sure what was going on. it was then found out that they attributedthe sleeping sickness to being addicted to the anti-rejection medication -- prednisoneand imuran. peter salgo:so what did they do? i understand that they transfused your mombecause she bled. and did they transfuse you as well?

kimberly bossley: i think it was transfusion/infusion. peter salgo: they exchanged. so you had a total exchange transfusion. kimberly bossley: totally. peter salgo: all right, it's 40 years later, your mom isbeing monitored, she still has kidney transplant, and what did they find about your mom? kimberly bossley: they diagnosed her with hepatitis c. peter salgo: okay, now, lou, you're a primary care doc.40 years have gone by. she was transfused quite a bit, right, inthe delivery room?

how come nobody figured out that kimberly'smom had hepatitis c if that's where it came from? kimberly, was she ever transfused since? kimberly bossley: she had several after that point, but my sisterdoes not have it, and my father did not have it. peter salgo: okay. the presumption is that she got it from thattransfusion around the time kimberly was born. so she's in your office, any primary carephysician's office, wouldn't you check? dr. lou papa: if you got that history. so the key is, if that was 40 years ago, itmay not have come up, unless she specifically offered it or you specifically asked aboutit, because i find it interesting, myself, when i'm speaking to patients, that even gettinga transfusion history, you have to specifically

ask for it, 'cause no one thinks there's anyharm, if it's 40, 50 years ago. peter salgo: well, isn't that the problem with hep c sometimes,it just sits there, slowly growing? raymond chung:it's a silent disease, and so, as such, unless you can probe, as lou just pointed out, probeabout specific risk factors, then you will very much run the risk of missing it. peter salgo: and it was a mysterious disease. back then, we didn't really have a probe forit, right? it was called "non-a, non-b," which is, "wedon't know what it is -- it's hepatitis."

dr. lou papa: it's there, right. peter salgo: so what is hepatitis c? one of you two guys want to jump in on this? raymond chung: so hepatitis c refers to the virus that causesthe disease of the liver in which, over many years, there can be the development of chronicinflammation as a response of the body to try to eliminate the virus from the liver,unsuccessfully so in the vast majority of cases, and that inflammation ultimately leadsto the laying down of scar tissue. okay, so hepatitis c is like luggage -- youbuy it, you keep it -- unless you can do something to stop it.

how do you get hepatitis c? and who should be tested? should everyone be tested? dr. lou papa: it's being recommended now that everybody be tested. and the reason why is because there's greattreatment, and because most people don't recall or remember to report their possible exposure,which could be iv drug abuse, sharing of needles; transfusions; rarely, but it could be froma sexual partner that has hepatitis c. those are the most common ways. or if you work in the health care field, ifyou got stuck with an needle, that's another reason.

peter salgo: all right, at that point your mom tested positive-- i know you alluded to this, but just to make it clear, were you tested at the sametime? they brought in my dad and my sister -- shewas born three years after i was -- and we were all tested at that point. and they both came back negative, and minecame back positive. how were you feeling at that time? kimberly bossley: i had already started a family. started my own business.

i was feeling fatigued and started havingnerve pain, muscle, where i just couldn't open jars. and did anybody put 2 and 2 together and say,"maybe hep c is causing this"? kimberly bossley: never. peter salgo: again, lou – dr. lou papa: but let's be fair. unfortunately, you know, this is the "retrospectroscope,"so symptoms like that are fairly non-specific, and i know they always talk about, "well,you think hepatitis c." you talk to a primary doctor, they all have 50 specialists in 50different fields say, "think about my disease

too." so i think that's part of the reason why theway we approach hepatitis c is very different, that it's more screening, because most peopledon't remember or don't offer that information. so here you are. you've got hep c. they checked your viralload, and it was low. so did they offer you any therapy? kimberly bossley: not at that time. they were saying that the therapy was veryharsh, and they recommended not treating, just putting -- just waiting.

peter salgo: would you have done that? dr. lou papa: it's interesting, because back then, the treatmentswere pretty harsh, and a lot of patients of mine that went for treatment did not continueit. and the success rates were low. so, for a lot of people, it was really, youknow, a coin toss. so now we're up to about 2005, 2006. your mom had a much more active disease thanyou did, and she was getting sick. did they treat her? she was not eligible for treatment, becausethe treatment regimen would have shut down her transplanted kidney.

so she was not a candidate for treatment. oh, boy. so describe what happened to your mom. you were with her for most of her course,right? peter salgo: tell me about that. kimberly bossley: she deteriorated quickly, probably becauseof the anti-rejection medicines and everything keeping her kidney alive. so the implication is that because she hadanti-rejection meds, her immune response wasn't quite so good, so this disease was marchingon.

kimberly bossley: exactly. peter salgo: is that what they told you? so tell me about what your mom's course waslike and what happened. towards the end, she -- in a lot of pain,she was given high doses of pain medication. a lot of neuropathy pain. neuropathy is nerve pain. mm-hmm, nerve pain. her kidney was functioning great. however, the liver was starting to wreak havoc,and she was getting hepatic encephalopathy.

that means she got foggy -- her mental statuswas changing? kimberly bossley:yes. and she was taking medication for that, lactulose? lactulose. and that causes diarrhea. so what was it like at home with her? tell me about it. kimberly bossley: it was tough. it was tough seeing her go through what shehad to, knowing i had the same disease.

peter salgo: was that crossing your mind? peter salgo: "my god, here's my mom, clearly dying. and i've got the virus." kimberly bossley: and watching -- yeah. for me, it was devastating. i started getting very depressed, becausei had a young family -- daughter was 8, and my son was 2 at the time, and we all witnessedwhat she was going through, and so for me personally, just the depression, seeing nocure, knowing your own mortality was right in front of you, was difficult.

and you mentioned this, but i think we reallywant to talk about it once more -- the little kids. you were watching your mom die. it must have crossed your mind that they weregoing to watch you die. kimberly bossley: oh, yeah. peter salgo: wow. kimberly bossley: and that's scary. [chuckles] you don't want your children tosee that. peter salgo: now, this is a -- it's a nasty disease andpotentially lethal disease, and with that,

i want to take a little pause. we're going to come back. i want you all to stay right where you are. we want to hear more, and i want you to getyour second opinion, but first, here's this week's "myth or medicine." narrator: it's a hot summer day, and you're outside,enjoying the weather. you notice a mosquito on your arm and quicklykill it. you know that mosquitos carry disease likemalaria, and worry about other illness.

hepatitis c is spread by blood-to-blood contact,and you wonder if this pest could have infected you with its bite. makes sense, right? hepatitis c is spread by mosquitos? is that myth or medicine? dr. anil sharma “hepatitis c is spread by mosquitos" -- thatis a myth. and i'm going to tell you why.

my name is anil sharma. and i'm clinical associate professor of medicineat the university of rochester medical center. hepatitis c is, in fact, spread by contactwith blood, not by contact with mosquitos. hepatitis c does not survive in mosquitos. so, even if a mosquito were to bite somebodywith hepatitis c, it wouldn't be able to transmit it to anybody else. country who have it, but, in fact, most ofthem do not know that they have the infection. they don't realize it until they get a bloodtest or they become fatigued or tired and seek medical care.

and this can happen 10, 15, 20 years afterthey're infected. and i think what happens is, they then wonder,"well, how did i get it?" because they really can't relate to anythingthat they did that could have given them the hepatitis c. that's why they think that mosquitosare doing it, but in fact it's totally a myth. is it okay to drink alcohol if you have hepatitisc? anil sharma: in an ideal world, you really should avoidall alcohol when you have hepatitis c. in particular if you've got advanced liver disease-- if the hepatitis c has got to the point where it's caused cirrhosis, then you reallyshould have complete alcohol abstinence.

if you've just got mild inflammation in theliver, an occasional drink when you're celebrating is not going to be terribly harmful, but ingeneral we do recommend that you avoid alcohol. and that is medicine. not sure if it's myth or medicine? connect with us online. we'll get to work and get you a second opinion. with that, kimberly, you're still here withus and sharing your story. thank you so much for doing that, by the way,for sharing with us. you're 46 now, and we learned that your momhad hepatitis c and that you both probably

contracted it from a blood transfusion almost40, 45 years ago, now. and you watched your mom die of this disease, knowing that youalso have the virus. yes. and that was an awful time for you. so, once you knew you had it, were you beingfollowed up by your doctor? and what was going on? it was about every nine months that i wasbeing followed up by my primary care physician at the time. and the viral load was being watched.

now, the viral load -- let's be very clearabout this. that's a measure of virus in your blood, right? "viral load" literally means how many virusparticles there are per cc. blank right, how active the disease is. and if it goes up, that's bad, and if it goesdown, that's good. blank: right. peter salgo:okay, i just wanted to be clear about this.

so, from 2005-2010, your viral load was low. so your doctors decided not to treat? not to treat at that time. it was low enough, and they said the regimenwas really hard -- harsh. but you'd watched your mom die. and you knewwhat was in store for you, possibly. what did you think of that decision? kimberly bossley:i was worried. i was willing to do any sort of regimen, treatment. i wanted to be cured.

but at the same time, they kept telling methat because i was a low stage of the disease, i was stage one at the time. lou, you see a lot of hep c patients in privatepractice. would you treat her? lou papa: well, things are different nowadays. no, but back then. i don't want to cast aspersions on somebodywith today's knowledge. i think back then you could make the argumentabout what they were doing that was not inappropriate.

the drugs are harsh. they had a pretty low effective rate. the data on people who had low viral loadsand didn't have much liver damage -- the feeling was, back then, based on the treatments thatyou had available, that it was not unreasonable. as long as you have a reliable patient thatyou can follow, that was not an unreasonable thing back then. all right, fast-forward -- it's 2010. what happened? i got very sick.

my legs swelled up pretty good, got very,very sick. very, very high blood pressure. i was admitted into the hospital. they biopsied your liver? they biopsied my liver. and...? stage 4. wow. stage 4 is as bad as it gets, pretty much.

she went from nothing to stage 4 while beingfollowed! do you see this? lou papa?: hepatitis c has a very variable progressionrate. now, kim's story for 40 years was one of clearlyvery slow progression. it took her 40 years to get to stage one. but what is interesting is that, you know,that linear slope doesn't remain linear for life. there can be an inflection --

so it took off. and things can really accelerate, particularlylater in life. we see this in persons perhaps in their 50sand 60s, but we can even see it in persons younger than that. and so this is not an exceptional story. it's one we do see. it's a terrible story. lou, at this point, you're going to treat. you're going to treat.

did they treat you? not at that point. i had other ailments going on. i had pancreas and kidney issues that neededto be addressed first. the kidney issues may, in fact, have beendue to your liver. the pancreas, i know you told me you had amass which later turned out to be benign. but some point they did put you on therapy. yes, in 2012. how did that go for you?

i was on for three months. which drugs? interferon and ribavirin. and they were very harsh. the fatigue was extreme. excruciating headaches, nausea. you're just -- you're a walking zombie. not good. all that may have been justified if, in fact,your viral load had gone down.

did it have any effect on your virus? no. so you went through all of this, and it didn'twork. it didn't work. oh, boy, so they took you off the drugs? and at the time, it was the only cure. but it wasn't curing you. and they pulledyou off. what did you think when they took you offthe drugs? i was doomed.

was she doomed? raymond chung: well -- so she was not doomed. this was now, what, three, four years agothat you're talking about being treated? at that very moment, there were clearly realadvances in the pipeline. i'm going to put you on the spot and embarrassyou a little bit. no, there weren't "advances in the pipeline." this guy found something and developed a medication. among others, but i'm just going to embarrassyou.

but tell me a little bit about sovaldi. so, sofosvubir, or sovaldi, is one of severalof these brand-new medicines that, unlike interferon, which lou described earlier asbeing the injection that produces the flu-like symptoms that you described so vividly, targetsthe virus directly. since we discovered the virus back in 1989,we've learned an enormous amount about its structure and its behavior. so these molecules now inhibit the very machinerythat replicates the virus. if you'll forgive me for oversimplifying,this is the first antiviral i know about that's the equivalent of an antibiotic.

that is, we can cure bacteria with an antibiotic. we could never do that with a virus before. this one can, we think. so they gave it to you. you were put on a clinical trial. when did that start? i started the clinical trial november 5thof last year, 2013. how does this trial work? you get a placebo and then you get the drug,or the other way around?

yes, actually i got – prior to -- november5th was the actual day i started the real drug. i was put, 24 weeks prior, on the placebo. okay, and so you got sovaldi and you got ribavirin,another antiviral drug. and what happened when you were put on thiscocktail? in five days, i had -- it was undetected. you say your viral load went to zero. from 12 million to zero. now, i don't like the word "miracle" -- idon't

believe in miracles. i believe in science. it's pretty darn good science, lou. it's fantastic science. i mean, that's amazing. what are the side effects of this drug? minimal. i feel great. i've got lots of energy.

i have mild headaches. holy moly! but nothing like the old regimen. but she had stage 4 liver disease. is this -- stage 4 -- going to get better? or does this drug simply stop the virus, andthen you are where you are? what happens? so, to the extent that the scar tissue isin cirrhosis, stage 4, known as "cirrhosis," is irreversible.

that is true, that much of that scar willremain. but we are learning, with time, that withsuccessful removal of the underlying agent driving this -- the hepatitis c -- that weare seeing some of that scar tissue roll back with time. this is giving your liver breathing room topotentially allow at least stabilization, and possibly even improvement. wow, this is an amazing drug. it's amazing progress. and now comes the hook.

it costs $1,000 a pill. so a course of this drug typically is $86,000. who gets this drug, in your opinion, lou? she does, but she's on a study. it's people with really good insurance orreally good trust funds. even insurance companies -- if everybody whotests positive for hep c gets this drug, we're broke. oh, absolutely. some of the estimates are that it would behalf of the, you know, of the u.s. budget.

i mean, it's an enormous amount of money. so it's one of those things where you go,"hooray," and then you go, "oh," because... peter salgo:who should get this drug? everybody. great -- who's going to pay for it? do you have an idea? do you have a solution? i wish i did. peter: salgo:

okay, researcher... what are you going to do about this? you know, clearly, as has been said here,we have a curative regimen -- we have a regimen that, as you pointed out, can produce cureof a chronic viral infection. and i want to stop there for just a moment. the word "cure" and "hepatitis c" -- i'llmake it even broader -- "cure" and "virus" -- i've never heard that before in the samesentence. big news. who's going to pay for it?

so, so i think that as we think about theimmediate prospects of how we get through this, we've been -- i think we're facing akind of stratification game, where we simply have to decide who's going to be approvedfor those treatments. and that decision has been made by payors,for the most part, basically to support the treatment of those with the most advancedforms of disease. okay, so i'm going to use the "r" word, 'causei want to leave you some time. we're rationing this drug for now. we're going to have to come up with a creativesolution, and it isn't easy. but i do want to leave you some time.

you've got real experts here. this is your shot for a second opinion. fire away. kimberly bossley?: [ chuckles ] what questions do you have? my question for you would be, what could ido, being stage 4 cirrhotic, personally, to maintain my health on my liver? dr raymond chung?:

well, first of all, stage 4, the diagnosisof cirrhosis is not a death sentence, okay? cirrhosis actually can take many, many yearsto progress. and the best thing moving in your favor wouldbe the elimination of the virus itself, because, as i suggested, if it's early enough, evenin cirrhosis -- cirrhosis can be a wide spectrum -- if it's early enough in cirrhosis, therecan still be even some remodeling and rollback of that scar tissue. peter salo: so stay off the liver toxins, stay off thealcohol, the basic stuff, lou? eat healthy, but also make sure if you haven't,you've got a hepatitis a and hepatitis b vaccine.

stay away from shellfish, 'cause there arecertain infections you can get from them that could be disastrous. now, you started a foundatio n in your mom'sname. i did. that's wonderful. and how are you feeling? great. that also is terrific news. feeling great after what you've been throughis amazing.

is this typical? so what's remarkable about these direct antiviralmedicines that we've just described is that they're not interferon. [ laughter ] first you start with"non-a, non-b." now, "not interferon." and i want to leave it right there, becauseinterferon is a tough drug to take. kimberly, thank you so, so much for sharingyour story, a dramatic one. i'm glad you're doing so well. and i want to thank the panel, of course,for being here -- both of you. and i want

to know about your insights in this case. let us know what you think about today's discussionand kimberly's second opinion by tweeting us or commenting on our facebook page. and now, for the last word on hepatitis c,here's this week's "second opinion 5." dr. malikkal: hello, i'm dr. maliakkal, and i would like to tell you fivereasons to get tested for hepatitis c. the first reason is because hepatitis c showsno signs in most patients for over 20 to 30 years. that is until they develop cirrhosis withliver failure or liver cancer.

hence, what you don't know can hurt or killyou. the second reason is that, while patientswith risk factors like drug use, blood transfusions prior to 1992, or unsafe tattooing shouldbe tested, nearly 1/4 of patients with hepatitis c have no known risk factors. the next reason to get tested is because,out of nearly 3 million patients in the united states with active disease, almost half arestill undiagnosed. most of these patients are between ages 45and 65 years. hence, if you have a risk factor for acquiringhepatitis c or you are in the 45- to 65-year age group, you should get yourself tested.

the fourth reason is because testing for hepatitisc is easy. a simple blood test can detect whether youhave been exposed to the hepatitis c virus with a high degree of certainty. and the final reason to get tested is that,in 2015, hepatitis c will be curable in over 90% of all patients with a simple 12-weektreatment consisting of a few pills a day with minimal side effects. and that's your "second opinion 5." well, thank you so much for watching, andremember that you can get more second opinions and patient stories on our website.

that's secondopinion-tv.org. send us your show ideas. share your own story, and maybe we'll inviteyou to be on the show with us. you can continue the conversation on facebookand twitter, where we are live every day with breaking healthnews. i'm dr. peter salgo. i'll see you next timefor another "secondopinion."