"quadriga" and we're going to talk about it with three people who watch u.s. politics very closey. it's a pleasure to welcome crist jana maya, a correspondent be with the morning show and former by reported for a.i.d. from washington. she says we look at -- with shock and no awe at a u.s. campaign at a man who be -- would be fired from any school for his hateful, racist remarks writes our next guest about politics. she says one of the biggest challenges for hillary clinton see that her s to conventional qualities as a candidate matter more than donald trump's populism. and erik kirschbaum now works as a correspondent for the "los angeles times" in berlin. he says there is a lot of frustration with the government n europe and it the moon i fests itself in support for right-wing candidates like pen. but it's hard to imagine americans electing anyone by clinton. can we really be sure it's going to be clinton against trump when it comes to the general election? or i iit possiblble there could be more surpriseses in store at the parties' conventions in july? >> after all the surprises, it looks like trump and clinton. clinton got enough delegates with the wins in california the other day.. it would take a miracle to prevent trump from being the nominee so it looks like trump and clinton in november. >> even though trump is alienating the republican party bosses and elights, the people he had tried to curry favor with recently, like speaker paul ryan, who now says trump's remark is racist but he will vovote for him. >> it is remarkable that trump is uniting, needs to be uniting his party around him but he seems to be cuzzing more division. went a bit too far, calling a judge a mexican and it raises a lot of ghosts thee republicans don't need right now. it was a total own goal for trump and not going to do him any good. >> hillary clinton could -- would be the first woman president of the u.s., she's the first female nominee for president. she was celebrating that very openly this week. but not all that many americans are perhaps are -- not as many as one might expect are celebrating with her and supporting her. why is that? >> good question. it's probably because she is roareded as the person who stands for establishment and that seems to be a bad thing in america, obviously because so many people seem to be unhappy with the established politics. it falls back on her. she has been in power for a long time and has the experience trump doesn't have and that doesn't seem to be to her advantage, which is kind of interesting to watch. on the other hand, many women obviously and many immigrants are really behind her and think she's got a very good chance to actually succeed even though she comes across add maybe a little bit -- maybe not as warm as people would like her to be. but then again you don't go drinking beer and coffee with a candidate, right? >> it surprised me last time i was in new york how unenthusiastic people are about hirg -- hillary clinton. there is no real buzz for hillary right now. >> but do you think that would would -- could change now that the general election phase is starting? and can she also win over the young people who supported bernie sanders? >> i think that's absolutely crucial. obviously they're trying to match sanders in behind her. if he would more or less give up and say all right, i'm going to support her and if he can get? of his issues across, for example, education is very important for young people and doesn't come across as the old, grumpy old man not able to give up, if all that happens, i think there could be more enthusiasm for hirg -- hillary clinton because it's been divided between obviously the young people and older people. i'm not optimistic, actually. >> you mentioned people in america who feel that the american dream is dead in that opening statement that i quoted. of course, those are the people to whom both sanders and trump have been appealing. trump, of course, is seen by many of those as an outsider with a fresh, authentic point of view and as a self-made man but in fact he's neither. >> no, he's not but he's very smart and appealing to people i think that have a lot of frustration and anger, frusustrated with the politicia in washington, d.c. he appeals to people that are older, male, white, that had the american dream in their mind that they can have one job in their lifetime, buy a house, buy a car, support the children through college and then that's it but that life if america is over. there is no longer the american dream they wish for and donald trump just stands there and says w well, if you vote e for i'm bringing back the american dream, bricking back the 1980's, which is not going to happen but he's smart in appealing to that demographic which i think may not be there in future elections, so this is his shot and he's doing well. >> in germany, france, elsewhere, disenfranchised people are going for the eatsy answers to very complicated political quesestions and i thi it's obviously very easy to fofollow a person who comes across like that. >> when you don't realize what thworld is really all about -- >> he also says you're afraid and if y you vote for me, all your fears are going to go away. i think the american society has bececome a very afraid society. afraid of terror, different people, their next-door neighbor, african-americans. there's a lot of fear in the society i believe. i talk to a lot of people there and they're all afraid of so manyny things. he stands there and says i'm not afraid of anything or anyone and if you vote for me i'm going to be the strong person in the white house. >> but here's something very puzzling. many are disillusioned with the politicians in washington. they say they are lying, promisising things and don't deliver. the fact is trump has promised lots of things he dididn't dedeliver. started a school for real estate provokers where there has been clear fraud and that has beenen reported upon, canne yet nothing seems to stick. hits supporters stick with him despite the fact that he has been shown to be telling lies. how can that be? >> yeah, i'm surprise bid that as well, but i think it has been reported but i don't know if the people have heard him, necessssarily, are reading the big piece in "the new york times" or "l.a. times" about what he has done wrong. then there are out lets like fox news that are just giving hihim air time and air time and that's part of the problem is the media that's -- that's been not very good on reporting on what he has promised and did not do. whwhat i think w we have to see is a very much more critical civil land scay. a civil society like america cannot vote for trump if they want too uphold the established ekenny wallace for minute orkts for gay people. all the issues are so important and so much on the line and we need to stand up and address that more and make people hear that. >> one thing's for sure, the media has been keen to report some of the more outrageous statements that have been made by donald trump. let's take a look. >> 4ir8 clinton has to go to -- hillary clinton has to go to jail. all right? she has to go to jail. >> i will leave it be to the psychiatrists to explain his affection for tyrants. >> hillary clinton is a weak person. totally scripted. >> he is tempt -- temper aamerican leaguely unfit to hold an office that requires knowledge, stability and immense responsibility. >> instead of saying crooked hillary, a very accurate description, wonder if i could say lyin '. >> we all know the tools donald trump brings to the table. bragging. mocking, composing nasty tweets the >> she does not look presidential, that i can tell you. she doesn't. this is not a president. >> i believe the person the republicans have nominated for president cannot do the job. >> so, hillary clinton there talked about the tools that donald trump groings the table. he has made it clear that among those tools will be vicious, vicious attacks. he is not afraid to hit employee the belt. he has done it plenty in the past. he has indicated he's perfectly happen i for example, to make bill clinton's past affairs grist for his mill. won't hillary clinton be thold a different standard in can she really fight with the same kind of weapons? or will she be in a disadvantage in this kind of, what could become really a mud wrestling match? >> if it stays nasty like this, she will havave a problem but she's already shown she's going to take on trump where he's most weak. e gavavey -- a gave a speech about foreign policy that week that went t down really well. don't forget, donald trump has a lot of people on his side. there say much higher turnout and we see m many of these peop who never voted before are voting. maybe it was betteter when turnout was lower. but trump has pulled it off. but it could hurt him in the general election because he'e's got it win these middle of the road voters and he's behind in so many states that it looks now like an easy win for the democrats unless trump gains 10 percentage points acrososs the board. >> clinton, as erik just pointed out. did make quite a strong speech last week. clearly she had been doing some thinking, training and also undoubtedly had a lot of consultants at her side telling her or working with her on how to address the kind of polemics trump has been throwing her way. she's a very tough politician. do you think that will stand her in good stead? will she stand up and put up with or even trounce these attacks? >> i'm sure she will. she can keep her calm. whereas he goes out of his way to be nasty and horrible, she is just composed. she doesn't use bad language like he does. there is one personality on the one side which you really think is very easy to attack, and on the other side there is his inexperience in political matters so she has a lot of things to go for. what -- when you are talking about the middle of the road voter, the middle people, they don't like that when their children hear nasty language on television. i'm totally surprised how the americans can put up with that. if you were used to that language in your normal circumstances, your normal life, you would not go to a normal school. people would certainly expel you and the parents would be called. >> it's kind of old with trump. it was entertaining for a while, exciting and ditch but it's going to get old and i think trump is going to have a hard time with this crazy, profane, vulgar message. >> on the other hand, trump has had a very decided advantage in media coverage. every nasty tweet that he sends out gets picked up by the mainstream media and then retweeted and discussed and in fact the president of cbs went so far as to say trump is bad for the country but it's very, very good for cbs. they've had revenues like never before thanks to all the interest in donald trump. what do media themselves need to be doing going forward to in fact create a level playing field here? ore -- or won't there be one? >> i think it's difficult because within the -- on the one haund want to report on everything that is going on. that is your job as a journalist. but i think what the huffington post did, beneath every article on donald trump they say donald trump has been making racist remarks and has been unpolite. hey state very clearly where their editorial opinion is. i think you have to be more rational in covering this election. it's a very nasty race and going to be a lotot morore nast until november. i think it's going to be very interesting to see the first national debate where hillary and trump will be up on the one stage for the first time debating the issues. donald trump cannot be as vulgar as he has been so i think that is going to be very interesting. >> you don't think he'll talk.side -- size of hillary clinton's hands? >> we hope he doesn't but you can never be sure about him. he can pull off anything, apparently. bubut sometimes it might help t just take a ststep backk before you retweet and facebook something just for the attention ond - -- and the audience reach. >> but isn't america itself, brought that onto itself? having elections as a big show that is run on the media as a show event almost with all that money involved and everybody has to go out of their way to attract attention? so in a way, you have got a person who delivers the big show, you know? there he is. and honestly, they're cynical enough to say ok, the race is great. let's go for it. >> that's one side perhaps of how the u.s. brought this on is -- itself. another side might be polarization, both in the sense of in washington, that meant that in eight years all thehe parties did in congress was fight with each other, then polarization of the media, meaning even if there is critical reporting, a lot of those trump supporters maybe aren't going see it. >> the milll enyals get their information from different platforms, facebook and twitter and things like that. it's a total different race this time and there is this polarization this time. i think sanders would have a very difficult time if he were to become. , he would have a very hostile congress but hillary clinton can work with a congress dominated by the republicans and at least get something accomplished. it's a crazy election. but the democrats have won every election except 2004 all the way back to 1988. the republicans only won one. so the electoral college advantage the democrats have is pretty enormous. it's something that people who are worried about trump should think about. it's not like one big election, like in germany it's 50 individual elections. the democrats have a pretty good heat start at this point. >> i totally agree but it's easy to say the democrats are going to make it. i think it's so dangerous that donald trump came that close or might cocome that close to the white house and we don't know what happens until november. if there is one major tag in europe or even america, don't want to think about that but just imagine one big terrorist attack. i think that would give him a major advantage. >> let's briefly think about what a donald trump in the white house might mean in terms of foreign policy. of course hillary clinton's presumptive advantage is that she had advantage -- experience as secretary of state but donald trump did hold what he called a major foreign policy address recently and more or less outlined where he would go, although it left many people somewhat in doubt. let's take a closer look. >> north korean leader kim jungun, shunned by the international community because of his nuclear development program but donald trump says he'd be prepared to talk to kim north korea recently praised trump as a wise plifplgts trump also says he'd like to have good relations with moscow and beijing. >> we desire to live peacefully and in friendship with russia and china. we have serious differences with these two nations and must regard them with open buys but we are not bound to be adversaries. the statement. >> he praises dictators and picks fights with our friend. >> perhaps trump can use these now male bonding efforts to resolve longstanding international disputes. >> so is he a hawk? >> i don't know if he knows. obviously he has no experience. what he said is that in nato have a speaking role, the other countries to would to pay more. it's hard to tell if anything is thought through or not or if it is coming from -- it's a worrying thought that he should be the onene who actually holds the button the >> yes, as hillary clinton has said, he would have the codes, the nuclear codes. according to trump in that major foreign policy address i mentioned he has written a book "the artd of the deal" and he says we should be -- we need to take a mar transactional approach to things. is that a clear strategy that you think would bring gains vis-a-vis say china or russia? >> no. it's a dangerous strategy. it might work for a businessman but as a nation, it's scary. he's already upset the financial markets by talking about renegotiating u.s. treasuries and things like that. it's been the most reliable place to put money for centuries. he threatened to mess that up with jut a few unconsidered words. he doesn't have an idea and it's a scary prosspektd for a lot of america's allies. >> let's talk about the u.s. and europe going forward. both candidates have actually said that they would perhaps expect more from europe at least in regard to contributions to nato, to supporting defense within, say, eastern europe and so on. europe on the other hand is also looking to the u.s. with a mix of resentment of u.s. power and at the same time wishing somebody would fix the middle east. would either of these candidates do things significantly differently? would either -- either of them bring the u.s. back to be the role of world policeman? >> well, with trump, i agree, you just cannot tell what he's going to do. he doesn't seem to have smart survivors. -- advisors. we don't know who he would pick as the vice president. hillary, on ththe other hand, i ressh very reliable. she would be a very reliable partner for europe and the ununion. it's always like a give and take and i think if the u.s. says, well, europe has to give more in regard to nato, you can question whether the u.s. is doing enough regarding the refugee crisis. so i think there is going to be a lot of talk and negotiations but with hillary clinton it's going to be more reliable. >> trumpt -- trump's call for europe to spend 2% of g.d.p. is actually a p pretty good call. the u.s. has been carrying the ball for nato for a long, long time and countries like germany just talk about doing more for analyst but they don't. of all the things that trump has come up with, that's one that caught my eyes as one that makes sense. >> and he's already looking forward to talks with putin. so you wonder, are they going to join the juan -- sauna together or what are they going to do? it's that level. but apart from the nato thing, of course you are right on that. ththe 2% we're supposed to contribute, we don't contribute. >> why is europe drag its feet on nato? >> that's a long story! [laughter] i think it will be difficult to change but i think it will probably gradually change. >> you said hillary clinton would definitely be more reliable but in fact one of her advisors has said a key motto for hirg clclinton is "when in dodoubt, act." couldn't that lead to a more activist mflt doctor mrlt role that might in fact be uncomfortable? >> could be. i think what helps hillary clinton in some regard is that bernie sanders has been in the way for so long. he made her a better candidate, om a european standpoint a already -- more left wing candidate. and a president clinton would not forget totally about all those aspects. of course she's shown she has a strong voice on n foreign polic and is ready to act. we all r.b.i. the -- remember the picturere when bin laden wa killed and she was sitting right next to obama and she voted on the iraqi war so we don't have to forget about that. >> here comes the moment all presenters love and guests hate. i'm going to ask you to give a forecast, who you think is going to win the election. and you are allowed to explain or one or two sentences. >> i think trump is going to have a hard time even finding a vice president candidate. i think clinton is going to win in a land slide, a very big victory. >> i totally agreement she might not be loveved but she's respected, she's reliable and that will carry her through eventually. she's going to win. >> i have to agree. hirg -- hillary clinton is going to make it. her conventional qualities will reassure the american public that she is a good president. >> so, what could change that calculus. all three of you have given your vote for clinton. what, if anything, could lead to a different outcome? >> if she has a big legal problem in the fall with the emails. if she ends up in the court and has problems with that, that could be something in the works for her. if bernie sanders doesn't do the right thing and bowow out gracefully, if the left-wing supporters of bernie sanders don't vote for her. if trump were to get his act together and start sounding more presidential. it could be a closer race but doesn't look like it's going to happen right now. >> yeah, if trump would change his personality all of a sudden that mide -- might be dangerous. all the other points dangerous, yes, but probably will not cost her the victory. >> i think changing his personality would help him, but it's not going to happen. as a mentioned before, i think we wouldld have to sigh -- see major terrororist attack. i don't think it would make him necessarily win the white house but it would make it much closer. >> thank you very much for all of us for being with us here on "quadriga" and for you out there for tuning in. hope to see you next time. bye bye. announcer: this is a production of china central television america. mike: illnesses can sometimes run in families. inherited genetic mutations can increase a person's risk of developing different diseases, everything from cancer to mental disorders. but now relatively new genetic testg is changing the way these illnesses are diagnosed and treated. this week on "full frame," we'll meet some of the top doctors at the forefront of medical research along with patients who are struggling with the decision about whether or not to test. i'i'm mike walter in los angele. let's take it t full frame. to know or not to know? for scottish born actress and filmmaker marianna palka, that was the question. she watched her father deteriorate from huntington's disease. so marianna made a brave and life-altering decision--she underwent testing to see if she had inherited the incurable degenerative disorder. in a clip from the award-winning short documentary "the lion's mouth opens," marianna discusses her fears with her closest friends. jason ritter: i's probably my biggest fefear in mymy whole li, is that marianna has this. marianna: growing up, i was always like, i just don't have it, even though the science says the chances are 50/50. jason: there always will be a--a scared part of me that's watching her face for r tics or odd things.. [marianna laughs] jason: but she doesn't-- she doesn't have any of these e things. marianna: i'm not even nervous about the dinner. i'm like, i can make whatever they want. i'm just, like, nervous about my life. mike: the title of the film is a fragment from bob dylan's poem written about woody guthrie and his battle with huntington's disease. the film has garnered worldwide praise and raised more than $100,000 toward hereditary disease research. marianna palka joins us now to discuss the film, her family, and what she learned about herself and others during this life-changing chapter. and we want to welcome you to "full frame." marianna: thank you for having me. i'm so excited to be here. i'm so moved. i think that you're so special, and i'm so excited to talk to you. mike: oh. i... you say that to me? that's pretty amazing because i think you're pretty special. and, well, first of all, let's start with the disease. marianna: yeah. mike: what it's like from the perspective of a young girl growing up with your dad dealing with it? marianna: it's pretty harrowing. i mean, the disease is d definitely-y--um, it's s jt the worst thing imaginable. like, it's sort of a nightmare to sort of deal with, especially as a child, but my dad is actually in stage 5 of the disease at this moment. like, he's actually still alive, but he is, um, close to dying. so, um, they're quite unsure at thth point, umum, why he's still alive. um... and it's so hard because he is a shell. you know, i mean, his--if you look at a brain that has huntington's disease and is showing signs of it in that stage, the brain is missing pieces. you know, it's actually rotten, um, you know, versus a healthy brain that's completely fine and--and fleshy. and, um, i think that--that what i'm trying to do is educate peopople and have an understanding--have people-- like, for people to have an understanding of what it actually is right now that--like, what we can actually do right now to help peo--people who have it in their family and people who have less resources or people who, um, need, you know, like, more care. like, the huntington's disease society of america helps people negotiate and navigate the insurance companies because it's so difficult right now. like, i met a young woman who is dealing with her mother who's showing signs of huntington's disease. and this girl is a young woman, and she has two jobs. and she's the one who's trying to fund her mom's nutrition and her mom's medical bills because there are so extravagantly expensive. and i realized when i met her that that's who i made the movie for. like, i didn't make it for me. it's not about me. that film is not even about-- like, even though it seems like it's about, like, my dad and my family, it's actually--you know, lucy walker did such a an incredible job. she made it about all of us as human beings and how we can help each other. and... and i want to help that girl and people like her because it shouldn't be that way. like, it shouldn't be that we don't have--like we have the resources, so we have to give the resources to the sick people. and it's so wonderful to live a healthy lifestyle and be able to spend money on food and stuff that makes you feel great and essential oils. like frankincense essential oil literally helps, um, the brain and it stops, you know, hd. like, it stops these degenerative diseases, and so does lion's mane mushroom. but this is not something that's available at your local store, you know? and i want to educate people about nutrition, which is why on my website, i have a whole big, long, amazing, exciting, like, essay ababout health and why i ththink health is part of who we are and part of our own healing. and i i feel like we are the cu. that was a long answer... mike: but it was a good one. marianna: but i feel you. ha ha! i could see i... mike: you get an "a" for the answer. it was a good one. marianna: thank you. i was like... mike: we covered a lot of ground with that one answer. um... one of the most moving-- there's--there's so many moving parts in this--in this film. marianna: well, thank you. mike: but one of the ones that reallyly hit me was you reciting dylan's poem from heart. marianna: yeah. mike: and it's--in the words, i mean, and him describing woody guthrie... marianna: right. mike: it's exceptionally powerful, but it's even more so because it's almost you talking about your dad in a way, too, and how... marianna: it is. it is. mimike: so talk to me aboutt the firsrst time youou heard tht poem... marianna: yeah. i love that poem. mike: ...why it's up here. i mean, you recited it, uh, and what it means to you. marianna: i heard it on a cassette tape. i mean, that's, like, so funny that it was a cassette tape, but i heard it on a cassette tape that just said "bob dylan" on it that was in my house. and i thought that it was the most beautiful thing i'd ever heard. and i knew that it was about huntington's disease. and so i was so moved, and i learned it. i wrote it down in my diary, and i learned it word for word and would recite it to people kind of as this, like, very intense party piece. like, in the uk, we have--in scotland, we have a thing that happens on halloween where you have to kind of perform on halloween. you can't just, like, get candy. it's not just about, like, free candy. like, you have to do a performance piece. so that's called a party piece. so on halloween i would be like, "this is my woody guthrie poem that bob dylan wrote. it's about huntington's disease. you want to give me candy now?" and people were, like, crying and being like, "yeah, we'll give you whatever you want." so i feel like that's what i'm doing now, just on a bigger scale. and i think that woody guthrie would be proud, i believe. and i think that bob dylan would be proud and i think that my dad would be proud, which is really what i'm doing it for, you know, because he's voiceless, and i'm doing it for the people who can't speak for themselves. mike: let me ask you about, uh, you know, you've been an actress, which means you kind of put your hands in the-- you--you put yourself in the hands of a director and then they--but it's different when it's, you're putting your life in the hands of a director. marianna: true. mike: so talk to me about--first of all, i mean, this is a life-shattering decision, either way. i mean, it's gonna impact you, whatever you find out the answer is. to have somebody trail along and then to have the confidence in them telling the story in such a beautiful way, that's a leap, isn't it? marianna: it was a leap of faith for sure. i'm definitely a believer. like, i--i will give you my trust, you know, and i--and i definitely gave her my trust, but she gave me her trust, too. i mean, she gave me her time. and it was definitely a love-fest in every possible way with something that usually would be too difficult to share. i was able to share with her because she is such a vast person and such an incredible artist. and her film, "the crash reel," uh, kevin pearce is such an inspiration to me. and i saw that movie and i felt, like, less alone as a human being. and i feel like that's what her movies do--they make you feel less alone. and "waste land" is an example of that. all her movies if you look at them, they have this theme about sharing pain, and--and she's just such a champion. like, i think that, bryce and, um, jocelyn towne and my other friends who are in the film, like jason, and other people who were there that night--like carly ritter--everyone was so loving. and i felt like that was also so easy for me then because they were there, you know, and it wasn't just about--again, it wasn't about me. it was about this moment that we were all sharing. and "it wasn't a party" because you can't, like, celebrate it, you know? but... mike: right. right. marianna: but it is something that as a sort of a-- as human beings, we need, you know. we need that ritual moment when something is terrible. it's like we--that's why we have wakes and funerals. like, we have to sit around and eat so we can be, like, "all right. this happened and we're the ones who are still alive, and what are we gonna do now?" mike: well, what i really liked about the film was that it's such a great entry point to have this meal and you're there with all your friends. and it really kind of helps--in such a short period of time, you get to know you and your friends and how close you are. marianna: yeah. mike: but then you also-- i think there's a part of you watching this, saying to yourself, "god, will i have the courage that she has?" marianna: really? that's what you thought when you watched it? marianna: well, i would be like, you know, being ignorant, sometimes that's good. i kind of don't... marianna: it's bliss, kind of. mike: i'm not sure, i don't... marianna: it's kind of bliss. mike: want to know, you know? marianna: yeyeah. mike: was ththere ever a a poini time where you'rere like, youou know, , "this is a fanantastic dinner. i think i'm not gonna go tomorrow"? or... marianna: yeah. i mean, you want to never deal with it. that's the--the human instinct, you know, is to be in denial forever. i... i spent my 20s being like, "i don't want to deal with this." um...and--and some people go their whole lives and they never deal with it. and i think that that's completely respectable. i mean, i would have done that, too, if i had--um, if that is what i felt, you know? there's no reason-- the movie definitely isn't like an advert to get tested for the gene or to even get any genetic tests because those in themselves are completely, um, complex and complicated. um... but i think that--that there's something really beautiful about manifesting healing, you know? like, i--i really was meditating a lot of the time, and i wanted to--to heal something that people didn't talk about, which is this illness, you know. i wanted to talk about the things that people don't say about it i waed to say them. if i ha't ne t thenner w wk deining wi all theynamics that hunngngton's s diase inin your filily,ike, b bris up, then ion'think i uld have had e streng to--to get test oro evenen concee e of mingg a moe e abouit.. because e e moviwentnt t suance. . ke, lots of people saw itanand itot shortisted for o oscarit''s on h h right now.ikike, ls ofof pple caca watcit. so it's memethinthatat i definitely out and autut in e world. mike: ll, i can't thk of ything probly moreeautif than sebody ying, ey, you're in suance." d then y get to to ndance. d then pple receed theilm in suc a posive way. so descre for me. marian: i love tt festiv. i lovehem. ty're mfamily. mike: ye. so whawas th like? becae it'not justour familyittinghere watchg is film. 's peect straers, i mn... marian: well, ah, itas a-- it w a perct place becae sundan actual is a buh of pple who know, um, cause i've mada lot of filmbefore that he gone tre. li, um, ood dick,"y movi-that was first fm that i direed. um, 's narrativ lo story. d--and tt nt to ndance whei wareally yng. and i- also hathis mie, "sonful," th i wasn with my fend, frank shaw, tt jenee marquewho'also anotr genius fale direor, she madehat moe. and tt's a breasteding moe that 'm so pud of. um.but soso-- we h been fore. you ow, itasn't ke an unown plac so tt was sortf an eas steplike, tror gro and hn coope charlieeff-- althe pele at sundce-- mielle satte they've been suchngels, hestly.ike, um, theyelped meind of d the first hurdle of--of people seeing the movie. and it was--it was truly like the best place the film could have premiered. mike: what did lucy tap into with that film you--that--that hits across so many different levels? marianna: well, i think what you were saying about it being so powerful even though it's so short has to do with lucy as a filmmaker. and it's her as a documentary filmmaker because i--i feel like a documentary filmmaker is a person who is a cross between a film director and a journalist. and i think that those are two beautiful jobs. and if you can--and if you marry the two and you make a great documentary, um, then you're so lucky, and we're so lucky to see it, you know? mike: where would you say we are in research? i mean, are we... marianna: we're so close. i was just at--the chdi. in palm springs every year, a bunch of scientists who are curing--the only thing they're working on is curing huntington's disease--they... they come to--to palm springs every year. and i got to go there and talk to them this year, and i was so excited. i was the only person who wasn't a scientist, and i was like, "i don't know if you guys know, but i don't know anything about science, and i'm talking to you." you know what i mean? like, it was really funny. um... but they're just little geniuses, and i'm so inspired by them. and so they've cured it in mice and they've cured it in primates this year. mike: wow. marianna: but the difference between going from mice to primates is-- is not the same as going from primates to humans. and so we're looking at all these different really exciting, um, things. and a lot of the money that we raised at the freeze hd event actually went to the scientists who i've met. so i got to meet, like, the young women and men who are doing this stuff. and i was hugging them so hard, and they were hugging me so hard because they watched the movie and they got to connect the dots between, like, their little lab research that they're doing and, like, the wider world of the hd community. because some of the scientists hadn't met anyone who had huntington's disease in their family, or they haven't met anyone who is showing signs of huntington's disease. and when you see that footage in the documentary, i think it's really moving because as human beings, we're all, you know, usually empathic. and i think that we want to help each other. and so it was just such a full circle for me to meet those scientists, so it was cool. mike: and the, uh, point i want to make which i haven't--at this point is we're not revealing what happens in this film. marianna: that's true. mike: you got to watch it. and it's on hbo go, right? marianna: it's on hbo right now. and all my other movies are online, too. so it's very easy to find me. mike: and, trust me, um, you will really feel like, "wow, that was 27 minutes? i can't believe it." it's just an incredibly powerful... marianna: and it makes a grown man cry because you cried when you watched it. mike: : yeah, i did. i--honestl, i cried more than once. and you reading the poem was very, very powerful. marianna: oh, thanks. mike: and, again, i'll say it again, watch this film. incredible, very p powerful. marianna: thank you so much, mike. i want to come back and talk to you later. mike: you--you're going to. it's a deal. marianna: ok. good. ha ha! mike: coming up next, we hear from the doctors using genetic testing to help women living with the threat of breast cancer. in 2013, hollywood actress angelina jolie made headlines not for a new movie. no, she made news by revealing she had genetic testing that showed she was at a high risk of breast and ovarian cancer. the mother of six responded. she became part of a medical trend and decided to have both breasts removed in an effort to reduce the risk of cancer. since then, she's also had her ovaries and fallopian tubes removed. in the past decade, doctors are seeing more and more women, some who, like jolie, hahave a genetic mutation choosing to remove healthy breasts instead of having breast-conserving surgery, even though both procedures offer the same odds of survival. to help us understand why, we turn to ucla's director of the breast oncology program-- that's dr. sara hurvitz-- and ucla gynecological cancer surgeon dr. sanaz memarzadeh. difficult name but she's really interesting. she conducts extensive research on ovarian cancer. and we want to welcome both of you to the broadcast. so this brca gene test, uh, some might say it's a--it's a game changer instead of--in terms of preventive care. h-how do you see it? sara hurvitz: i think for the 5 to 10% of women who are affected by the brca gene mutation, it is a game changer because knowledge of carrying that mutation and the impact it can have on one's decision to do preventive, uh, therapy, such as angelina jolie did, is huge. um... women who are diagnosed with the e brca1 mutatition have aboa 55% to 65%5% chance of d develog breast c cancer athehe age of 7. and for brca2, it's around 45% to 50%. so by removiving both of her brbreasts beforere being d diagd with breast cacancer, she's reduced her r risk by abouout 9% ofof having brstst cance and sanaz can talk to the risk-reducing surgery she had on her ovaries and... and the amount that that reduced her risk of ovarian cancer, but i think it's huge. sanaz memarzadeh: yes. i do agree that it has--it is a game changer. and knowledge is power, basicalally, for women. it's important to know if a woman carries this genetic mutation. particularly, i think it's important in the case of ovarian cancer because we, unfortunately, don't have early diagnostic tests and because of that, a majority of patients present with advanced disease. so if a woman knows about the fact that she carries the brca gene by having what we call prophylactic surgery, meaning removal of her ovaries and tubes before something happens, she significantly decreases that risk. and that risk is not negligible. and women who are brca1 carrieiers, um, by a age 50, 21% hahave develeded ovarian c canc. by age 80, 54%. and women who are carriers of brca2, which is in essence, a sister gene but t less commonly mutated. by, um, age 50, 2% have developed ovarian cancer. and by age 80, upwards of 27% of these patients have ovarian cancer. and consider-- considering that ovarian cancer to this day still to some extent is a lethal disease, this--this is important knowledge to have because you can do something about it with preventive surgery. mike: it's--it's much more difficult to--to tackle once it gets--as you said, uh, breast cancer, it seems like there's been advances. ovarian cancer-- still very, veryry difficult, correct? sanaz: correct. so-- and when we talk about ovarian cancer, there are many types of ovarian cancer. but the type that we're gonna focus on today, because this is the type that--that brca patients who carry the brca gene are predisposed to--and it's the most common susubtype are--- epithelial ovarian cancecers acaccount for 9595% of all ovavn cacancers. and, yes, it's difficult to tackle. it's difficult to detect. thus far, efforts in terms of trying to measure blood tests with the biomarker ca-125 or doing ultrasounds, uh, together or independently has not been able to catch this problem early. as a result, a majority of women who present with ovarian cancer already have stage 3 or 4 disease. and part of the challenge is that this very disease that we call ovarian cancer, we've just--we've learned recentltly actually does not start in the ovary. it starts in a neighboring organ, the fallopian tube. so to o some extent, a as doctc, we've also been looking in the wrong place. so a lot of knowledge has been emerging over the lalast, uh, fw years about the origins of this disease, but i really hope and i think that through our research and others' will get us--help us get to the bottom of this and be able to detect it earlier and also treat it more effectively. mike: well, i think that's really interesting what you were just saying becacause the knowledge base, i mean... we've come so far as a society and yet in many respects, there are still mysteries out there for the folks in your profession. um, let me-- let me talk more a little bit about angeli--angelina jolie, though, in the respect that somebody like that writes something in the "new york times,s," gets a huge e splash. yoyou see all these stories on the news. it does raise e awareness, butut also creates confusion, correct? sara: yeah. absolutely. mike: i mean, wh--what do you both of you see? sara: in my own practice-- and i i treat primarily women who've already been diagnosed with breast cancer, so women who've already received a diagnosis of a pre-invasive cancer or an invasive cancer. and most of them have already made their decisions about what type of surgery they're gonna have. and the vast majority do not carry a brca mutation. so what i saw in my own practice were a lot of phone calls and a lot of emails from these women concerned that their choice to have breast-conserving surgery or a lumpectomy may in some way have been detrimental to their long-term health. and that's absolutely not the case. so angelina jolie's decision to remove both of her breasts before being diagnosed with breast cancer was a primary preventive strategy--a way to prevent cancer from ever happening. um, and it did. 95% or a greater chance has been lessened by thatat decision.n. for a woman whwho's s been didiagnosed with an early ststae breast cancer r in her breast, having the breasast entirely removed or having both breasts removed does not improve survival compared to removing just a part of the breast that's affected by the tumor. um, and multiple studies have now shown this. so the jolie effect, as we call it in the medical community, is that, it has increased awareness. it's made women question whether they should be genetically tested, whether they should look at their own personal family history. so it's had d very good benefits in raising awarenesess. on the other hand, for a woman who's already walked the path ofof--of having breast cancecerd has gonene through the decision-making process regarding what type of surgery she will have, um, it created a bit of confusion which is our responsibility as physicians to sort of untangle for them. mike: lots of emails, lots of phone calls. um... breast cancer seems to get, you know, there's a lot of cancers out there, and--and it seems like breast cancer gets a lot of attention. the cancer that you deal with on a daily basis, perhaps not as much. so in that respect, was it a blessing for you that you--suddenly could be talking about another cancer, ah, but also sorting through the confusion? sanaz: we're always talking about ovarian cancer. as an ovarian cancer surgeon and researcher, it's my responsibility to talk about it. and i owe it to my patients. and i do think that what happened in angelina coming forth with this operation that she had, actually, opened a very positive dialogue in that respect. so here is the challenge, i mean--you know, she--so in terms of her medical decision making, um, i think it's absolutely the right thing to do--what she did. and that's exactly how i counsel my patients. at this moment in time, because we don't have a any good way of detectcting these cancers earlier. a woman who carries the brca1 gene, the recommendations are that by age 40, she has removal of both ovaries and tubes. a woman who has a brca2 gene by age 50, it's recommended to have this prophylactic surgery. now, had we had better early detection tests or had--if we had more effective treatments, perhaps that would not be the recommendadation. but at this point in time, that is the recommendation. mike: let's talk about mastectomies. because, uh, we--we've got a graphic that kind of illustrates--there are various stages. so let's--let's take, uh, the first one. maybe wewe can talk a a little bit a t itit. uh, the didifferent typep- the preventativeasastecty. talk to meme about this,s, sara. sara: so p prophylactic c mastey is essentialally--is also called a total l mastectomy, , and it's essentially removing the breast and the nipple, um, but lymph nodes are not removed in--in general. um... in some situations, surgeons are offering women nipple-sparing or nipple-- and skin-sparing prophylactic mastectomies, um, which allows a better cosmetic outcome in certain circumstances. so that's something that the surgeon and patient would discuss, um, between themselves in terms of their risk-benefit ratio. um, a modified radical mastectomy is removing the breast and l lymph nodes in the regioion. andnd tt wowoue for womemen who have alreadydy been diagnonosed with b breast cancerer, uh, in the breast. and typically, it's offered to women who h he a very large tum, , severa parate tumors that are i differenququadnts of the east, umbubut doesn''t remove t pectolis muscler l of theodes in thregion. um, it is--i's le deforminand le, uh, problematic down the line for patients who have that. this is in contrast to the radical mastectomy, which is shown on the top there, which was a a traditional l mastectomy that wililliam halsteded pioneed in t the 1800s. umum, and this s done all the way through 1970. actually, bey y fo had a a radil maststtomy. mike: -h-hmmsure. sara: anththats where the pectorisis mcle is reved, a the lymph nodes were rememed, e ideaeing thathe only wafor brea cancer spread from t breast by goin througan orgized patay thugh the mph nodeand onto oth organ if thawere thease, then moving me of thereast tissue and surrounding tissues and all of the lymph nodes would improve survival. the problem was that halsted never really looked at that in a scientific way and compared the outcomes of women who had lesser surgery. and that--when that was ultimately done in the fifties and sixties by bernie fisher, it was shown that women who have an invasive cancer can have less surgery and a very similar--or the same overall survival. and that's what led to the partial mastectomy... mike: right. sara: ...or lumpectomy, breast-conserving surgery. there are multiple names for this procedure in which the tumomor itselflf is removeds well a as an area of s surroundg nonormal tissue,e, and the lymph nonodes are sampmpledn the axilla or armpit region. so this allows a wanan to sa the joritytyf her breast. um, it's a le c comicated ocedurure. it''s an eararer recerery. a randomized clinical trials that have compared that versus the mastectomy has shown the exact same survival, long-term. mike: so, uh, , do the patients asask a number of questions abot this? do you go over the range? uh, how--what's that conversation like? because, of course, it's jarring and... and they have to take some sort of action. it's a lot to take in. sara: these are very individualized or personalized discussions, um, that are, um, very important for the patient to have with her surgeon and oncology team in the beginning. and if, um, the surgeon or oncologist is not giving the patient a lot of information, the patient should be asking questions. what is the size of the tumor? how disfiguring would it be for me to remove the tumor and save my breast? is the tumor too big compared to my entire breast size to save my breast? um...would you recommend mastectomy and why? so there are a lot of-- of questions. and then also, is important--is reconstructive options, which should always be discussed at the same time as discussing a mastectomy. mike: she's talking about breast cancer and the different stages. ovarian cancer, very different. where do you see the research going, uh, to get us to the stage where, perhaps, we're talking about preventive measures and that sort of thing? sanaz: right. through our research, what we have found is something very interesting. in every patient tumor--and we analyzed patients who allowed us to take their tumor specimens and study it in the lab-- in every patient tumor that we've analyzed, we have found that while a majority of tumor cells respond very well to the--to the traditional chemotherapy, there's a small subpopulation of tumor cells that are clearly resistant to the chemo. and theyey are resistant, , and they're resistant from the very beginning essentially. so in every tumor, there's a prpre-existing populatation of resiststant cancer celells. and what we've also learned is that while a majority of the tumor celllls express the ca-125 biomarker, which is the marker in the blood that we use to detect the cancer, the small subset is actually negative for ca-125. it has no ca-125 expression. so, but what's interesting, we've also found is that not only the cell population is resistant to chemo, not only is it negative for the biomarker, but it also is a subpopulation of cells that very readily restarts the cancer. in essence, these are the cancer initiating cells or the cancer stem cells. so what we've learned in--in this study is that, i think this is what's happening in clinical practice that we operate, we treat patients with chemotherapy. a majority of patients-- a small reservoir of these cells are left behind despite best efforts. and these are the cells that i think likely are re--responsible for restarting the cancer. mike: right. so you need to find the achilles heel of that. sanaz: exactly. mike: once you attack that and figure out a way. but how far away are we f from that? sanaz: we arare--actually, we've done t that, so we have recently done that in the laboratory, and we have very carefully profiled that cell population that is resistant to therapy. and through this work, we find some clear mechanisms that make them resistant to the traditional drug which is carboplatin. through analysis of this work in the lab, we find that in 50% of all comerers, these cells,, uh, sort of increase the amounts of an anti-death signal, basically. so chemotherapy is supposed to tell the cell, "die, die, die, die." but these cells have signals that allow them not to die and repair their dna. so while most of the tumor cells die, these cells live on, basically. but there's a drug that can work, and it--i think can work in up to 50% of patients with epithelial ovarian cancer who specifically have this death signal in their tumor. and we've, at least in the, sort of, pre-clinical models in the laboratory--what we learned is that if we combine this drug with traditional chemotherapy, now we can get rid of all the tumor cells, including the ones that were initially resistant to the standard treatment. mike: sara, one final question, because i--i think this is of interest. and--and i was just looking at the statistics. i want to get them right. in the u.s., the rate for those with early stage breast cancers receiving mastectomies, it's right around 38%. um... the american college of surgeons recommends no more than 50% of patients with early stage breast cancer have mastectomies. but i was looking at europe. the recommended cap there is 30%. why this disparity? sara: well, actually these numbers are somewhat arbitrarily selected because there have not been good studies that have measured exactly what percentage of women should be having prophylactic mastectomies, period. so, there aren't good metrics that say, in today's world based on genomic profiling and what percentage of patients probably are at high risk of developing breast cancer, that percentage should be expected to have prophylactic mastectomies, um, per se. um, so, until we have good numbers or good metrics like that, it's hard to judge which number is-- is closer to correct. that said, clinically speaking, in my practice, we are seeing way too many women choose mastectomy and contralateral prophylactic mastectomy, um, who have no evidence that they're going to benefit from it. no strong family history of breast or ovarian cancer, um, no genetic back--background that would suggest a very high risk of breast cancer.r. um, and i think that the choice women are making to have more mastectomies in the u.s.--and actually worldwide, but particularly in the u.s.--is in, uh, many ways, very fear-based. um, patients are very afraid that brereast cancer will come again in the opposite breast when they've already been diagnosed with breast cancer. um, i think there are some, um, inappropriate assumptions that they're making regarding the fact that if they remove the other breast or remove both breasts, um, that this will improve survival. so it--it's, um, important for patients to talk very carefully with their oncologist and their surgeons about whether or not mastectomy is necessary. and my sense based on the statistics that have been coming out in the last 5 years is that we're doing way too many in the u.s. right now. mike: it's fascinating. uh, thank yoyou, both. this has just been very enlightening, very, very interesting. and, man, you're right there at the cutting edge. this is fantastic stuff. and you're getting out the warning to these women out there, and that's very important as well. thank you, both. sara and sanaz: thank you. mike: when we come back, is a cure for a genetic disorder that causes crippling pain for millions of sufferers finally within reach? sickle cell disease is the most common genetically transmitted disorder in the united states. and 1 in 400 infants of african ancestry are born infected. the world health organization estimates that roughly 5% of the world's population are healthy carriers of a gene for sickle cell disease and that the percentage of people who are carriers is as high as 25% in some regions. living with sickle cell disease is often characterized by frequent blood transfusions and chronic pain, but the care and treatment of those who suffer from the illness is advancing. there are 12 national institutes of health-funded sickle cell disease research centers in the united states, and children's hospital-- los angeles is one of them. joining us now to discuss what's new in the battle against this chronic blood disorder is pediatric hematologist dr. thomas hofstra. welcome to "full frame." thomas hofstra: oh, no. thank you for r having me. mike: first and foremost, for people who aren't familiar with it, describe it for us because i've heard it described, kind of, uh, you have doughnut-shaped blood cells-- sickle cells-- more like a sickle. talk to me about this disease. thomas: yeah, so, what--what sickle cell disease is, it's an inherited condition, anand it's calllled a recessive condition, which means that both the mother and the father have to be carriers and there's a 1 in 4 chance that any child they have will be affected. and it affects what makes our blood red, called hemoglobin. and normal red blood cells can slide through small blood vessels, but what happens with sickle cell disease is, because this hemoglobin is abnormal, it forms those sickles or those-- those crescent-shaped red blood cells that you talked about. and they become very sticky, and they block blood vessels, sort of like a logjam on a river. and then the blood can't go beyond that, and then tissues get damaged because they--they don't get oxygen. there's inflammation. and all kinds of problems can happen as a result of that. mike: so you see virtually all kids and kids going through a lot of, uh, troubling times. i mean, talk to us about these pain criseses, because they're-- they're enormous. thomas: sure. um, pain in sickle cell disease, pain crisisis is the most common problem that happens with sickle cell disease. and that's when there's enough blockage of those small blood vessels that injury occurs. and have you ever broken a bone, mike? mike: sure, yeah, yeah. thomas: so i've never broken a bone, but intellectually, i've heard everybody say it hurts a lot. and we had a kid with sickle cell disease-- 3 years old-- came to the hospital two days after breaking h h arm, becacaue their parents said she's not nearly as fussy as she is when she's having pain from her sickle cell disease. so intellectually, i said, "that's pretty bad." but, um, have you ever hit your finger in a car door? mike: yup, yup. thomas: yeah, i can tell you the exact day and time it happened. that was in the tenth grade. and one of my kids with sickle cell disease--one of my teenagers came to my clinic and his finger was bandaged. i said, "brandon, what happened?" and he said, "dr. hofstra, i smashed my finger in a car door." so i said, "aha. now, i can emotionally understand the pain of sickle cell disease." "so, brandon, how does that feel compared to a sickle cell crisis?" he looks at his finger, and he looks at me, and he said, "dr. hofstra, the pain was almost as bad as the pain that brings me to the hospital for my sickle cell didisease." so, we have to treat these young men and young ladies with sickle cell disease with powerful pain medicines-- morphine, dilaudid, and other powerful pain medicicines becaue of that amount of pain. and if we don't treat them properly, it's like smashing your finger in a car door for a week, because these papain crises last on average 5 to 7 days. mike: talk to me about the arc, where the--where the, uh, treatment has gone, uh, longevity--how long these kids lived when you first got into this business, how long they're living now. thomas: sure. yeah, when i first started at children's hospital--los angeles over 20 years ago--oh, my goodness! um, wow!--uh, we would have 10 to 15 kids in the hospital at any given time with sickle cell pain c crises or otr complications from t their sickle cell disease. now, with advances and treatment, we now average two, maybe 3 patients hospitalized at any given time. and a lot of that is because newborn screening has happened. so in the united states, every state in the country in the united states now tests for sickle cell disease because early intervention, early education of parents and families of children with sickle cell disease improves their outcome. so, historically, people were dying before the age of 5. but now with the institution of prophylactic antibiotics, educating families about the signs and symptoms of stroke and other complications, in the united states, 95% of children make it to 18 years of age. but if you go to other areas of the world, like sub-saharan africa and parts of the middle east, 50% of children with sickle cell disease--or even up to 90% in rural areas--die before their fifth birthday. and that's because they don't have organized newborn screening. it's--they've got a lot of--of trials where they've looked at it, and said, "yeah, it can happen on a local basis, but on a national basis, it's very difficult to institute." and so, if we could geget newbon screening in these emerging nations and start these children on prophylactic penicillin, start them on medicines that help prevent the sickling, we could really make a huge impactct. mike: pediatric work, i mean, you work with kids all the time, but--but back in the day when you, you know, 20 years ago, if i came in with my child, i mean, if you were gonna level with me, the chances were they were not gonna be adults. as the care improves, as they become adults, adult doctors don't know how to do what you do, do they? i mean, is that another issue? thomas: that's a--that's a huge issue. andnd it's recognized boh nationally and internationally, the transition of sickle cell disease from pediatrics to adult providers is fraught with problems because historically, adult pedi-- adult hematologists didn't take care of these kids because they are--they were dying. so here-- at children's hospital, we actually developed a transition program that we kind of called non-transition transition, where we work with community physicians and, um, and adult hematologists and say, "please, you know, there's a lot of internal medicine things that we, as pediatricians, don't deal with. but we deal with sickle cell. if you will work and partner with us, we can actually make a difference in these... young men and young ladies' lives." the highest risk of death in sickle cell disease in the united states is between the ages of 18 and 25. and whether it's just because they're not given the care that they need or whether the disease is changing at that time, there's a lot of issues involved, but we need to do that to--we need to work and partner with adult physicians to improve the health of our young men and d young ladies wih sickle cell. mike: you kind of did broad strokes, of course, but i'd like maybe if you'd go a little-- d--dig deeper. uh, internationally, where do-- where do you find the disease? and--and it's not just, obviously, here in the united states. it's elsewhere. you kind of touched on--on the fact that in some areas, children live to be 5, th--they don't have a longevity that perhaps you'll find here in the united states. thomas: in--in nigeria alone, 150,000 children are born with sickle cell disease annually in any given year. we have only 80,000 to 100,000 people in the entire united states of all ages with sickle cell. so in sub-saharan africa, 200,000-plus children are born every year with sickle cell disease, and over 50% of them are not gonna make it to their fifth birthday unless we can start recognizing these--this disease early. starting these children on penicillin prophylaxis, helping families, and clinicians recognize that a fever is an-- could be an overwhelming infection and needs to be treated aggressively, showing them how to feel for a spleen, because the spleen is an organ in--right under your ribcage on the left side, and your entire blood volume can get stuck there when you have sickle cell disease because of that log jamming that happens. and, you know, i care a great deal about kids with sickle cell disease. i want them to grow up to be as healthy as they can be. we are going to have a cure for sickle cell disease in the patients' lifetimes that i'm taking care of right now. mike: so you've got to create that lifeline until they... thomas: i want my--yes. i want these children to be healthy as long as they can be until the cure is there. and we--we're starting now. gene therapy trials are happening right now. children's hospital is partnering with ucla. we did a lot of pre-clinical work on gene therapy where we gave--our patients volunteered bone marrow for people to experiment in the lababoratory onon how tot in nonon-sickle gegenes in--ini. sickle be e marrow. and now, because of that devotion that my kids and their families had, we're now able to have a clinical trial to try and do gene therapy for sickle cell disease. mikeke: twenty y years agogo whu were at the starting line-- to see the finish line, i mean, you can literally see the finish line. you may not know where it is exactly. what's that like? thomas: ever since i started doing sickle cell disease, i said, "we're going to have gene therapy in 10 years"; "we're gonna have gene therapy in 10 years"; "we're gonna have gene therapy in 10 years." to be able to now at least have the first steps of gene therapy is unbelievably exciting. and i say to my children and their families every day, "you need to do what you need to do, stay healthy so you will be cured of this condition." mike: so what is it for the layman, and why is it so promising? thomas: um, right now, um, gene therapy, it's-- for sickle cell disease, it's a single gene, one gene, one small error in the dna in a single gene creates all these problems--the pain crises, the stroke risk, the infection risk. and if we can take a healthy gene and replace the sickle gene or make it so that gene is more effective than the sickle gene, we can make it so those red blood cells stay around and can get through the blood vessels instead of blocking and jamming and causing problems. mike: so that's that genetic trait. how do you detect it, and--and how many people are carrying it, and--and how do you know that your kid has it? thomas: so, um, ag--again, in the united states, all children are tested with newborn screening for hemoglobinopathies for red cell problems specifically because of sickle cell disease. so 1 in 12 people of african descent is a carrier of the sickle cell gene, which means that, 1 in 400, give or take, is going to have a child with sickle cell disease in the united states. but if you go to parts of nigeria, as many as 1 in 4 people are carriers or have the sickle cell trait, which means a much higher incidence of children being born with sickle cell disease. 2% of children born in nigeria have sickle cell disease. mike: but can this be, you know, you're talking about gene therapy. can it be a tsunami where it just--you know, a lot of times we see--we see things here in the united states and it takes forever to get elsewhere in the world. thomas: yeah, gene--right now, the only cure for sickle cell disease is a bone marrow transplplant, and t that is prohibitively expensive for many emerging nations and is also difficult to do. less than 1 in 5 people with sickle cell disease has an appropriately matched donor. so gene therapy, i don't think, when we have it fine-tuned, will have the same level of cost, but it still is going to be an exexnsive thererapy. and until we can drive down those costs, the best thing that we can do is detect sickle cell early, which is by newborn screening if possible and then instituting treatments and education of those patients and families, so that they can live good, healthy lives s when we cn develop cures for everyone. mike: stroke one of ththe bigget concerns? thomas: it certainly is the scariest. um, and historically, 1 in 10--about 1 in 10 children with sickle cell disease would have a stroke where that--that logjam would happen in a--in a blood vessel to their brain. and we now have testing that helps reduce the chance of a child having a stroke. we measure the blood flow to the brain. and the higher it is, the more likely it is that they'll have a stroke. and that's what we call a transcranial doppler. by starting those patients on transfusions, we have reduced the chance of a stroke from 1 in 10 to less than 1 in 50. and--but that means, every 3 or every 4 weeks, these children are coming to the hospital, getting a blood transfusion. we don't know how long they need to continue on transfusions, um, so it's, right now, indefinitely. and then they have issues related to chronic transfusions. so, it's a a huge burden to try and reduce stroke risk, but it's worth it because if you stroked, you now have the neurologic problems of a stroke. plus, if you don't go on the transfusions, you'll stroke again. so preventing a stroke by transfusions is, in my mind the way to go until we have gene therapy. mike: for someone who's devoted 20 years, two decades of your life to sickle cell disease, it doesn't get, uh, as much attention. and i know that has to be frustrating to you. is it? and, uh, and how do you deal with that? thomas: well, yeah, it is frustrating. i don't like the fact that sickle cell disease does not get the same level of funding as somome other inherited d genc diseases, um, but i still hold out hope because we are making progress. and, you know, only-- we've only had two things that have happened that have improved the lives of sickle cell so far. and that is newborn screening and hydroxyurea. but there's a lot more on the horizon. now there are a lot of new medicines that people are looking at that will do a different way of preventing the logjam from happening. there's a medicine that actually prevents red cells and white cells from sticking to the--t-to the sidede of a blood vessssel and causing that. there are clinical trials going on for that right now. there are other medicines that may increase the fetal hemoglobin and decrease sickle hemoglobin. there are lots of things that are happening. so, i'm excited--i'm excited. i love my kids. i want my kids to grow up to be healthy. i want them to be healthy when we have the cure. it is going to happen in their lifetetime. mike: it's a very promising time. thomas: i agree. mike: it's an exciting time to be a part of all of this, isn't it? thomas: it is. mike: yeah. doctor, thanks so much for coming in and talking to us. i really appreciate it. thomas: no, i really appreciate you bringing attention to sickle cell disease. and i think this is a really good forum to do that. so thank you. mike: you bet. we'll be riright back with this week's "full frame close-up." after the nanjing yangtze river bridge in china, the golden gate bridge in san francisco is the second most used suicide site in the world. for kevin briggs, the golden gate bridge is also the site where he has saved hundreds of lives. from 1994 to 2013, briggs patrolled the bridge and talked down strangers thinking of ending their lives-- a conversation that started with asking the person how they are, followed by a very meaningful additional question. what are your plans for tomorrow? now retired from policing duties, kevin briggs continues this important work with his organization, pivotal points. briggs now hopes he can reach people in crisis and make a difference long before they have to be talked off the ledge. kevin briggs: i think people here love it as much as people who are out of country. we still like to go down and see it. i like to go down and see it. you know, it doesn't change that much, but just--it just feels different every time you go down. i look over that rail. i saw the "queen mary" go underneath it one time. so many different things occur, and you see seals, you s see porpoises. you m meet peopople m all over the worldld each and every day down there. each and every day is a new experience. it's really neat. it's a neat place to visit. people know--they hear "the golden gate bridge," and they--well, most of us think about the beauty and--and seeing san francisco... but then there's that dark side of it. as far as i know, it's the top site in the united states for loss of life to suicide. i started with the california highway patrol in 1990 as a traffic officer. my first call was a woman, i believe, in her 30s that was over the rail, standing on the cord. and i had no training. i had--d-didn't know what to do. i just walked up t to her and began talking to her, and, uh, she did come back over that rail, but you could see the--how--how scared she was, and i'm sure you could see how scared i was. so it was a crappy thing for me to have to do without trainingn. um, things are better now. there is some training invnvolv, so w we've come a longng way. i try to think if i was--if i was in their shoes, "what would i want to happen? do i want some cop with a big 5-pound badge, walk up to me, telling me what to do or being a smart-ass, telling me to jump because i'm worthless or would i want somebody who comes up who is going to have the empathy, going to say, "man, you're having a bad day, you're having bad weeks, you're havavig bad months, maybe you're having bad years, but we want you to come back over because we care," and we're going to take it to a place where they care, and, "we're going to try to get you some help." when i walk up, i'm not sergeant kevin briggs with the california highway patrol. they see the uniform. they see what i do. i'm just kevin, and that's what i want it to remain as. but with kevin when i received that call, uh, i was on my motorcycle, and i rode down the sidewalk, and i saw him around the north tower. and as i was getting off my motorcycle, he saw w me. and he was on the sidewawalk, but he went--whoosh- right over t that rail. and i thought he was gone. it wasn't until i walkeded up closr and d i saw that he was ststill there. i don't know how he managed to grab on to something and stay there. he wanted someone to listen. according to him, people were not lilistening to him, realally listening to him. we talked for about 90 minutes. and actually for that 90 minutes, i spoke maybe 4 or 5 minutes out of that whole thing. i was just thehere listenining. and almost that entire time, i am below him slightly. i want him to look down on me, not me looking over the rail at him because i want to empower him, show him that he does have significance, self-worth, and there are people that care. you know, very, very few--maybe 1% to 2% folks live after that fall. what happens when somebody jumps off that bridge, i've talked with a coroner about this, and they fall about 220 feet, roughly 75 miles an hour. you hit that water, it's--it's tough. it's really tough. you know, many people-- many people die on impact but then, quite a few pe--people don't. so it's a horrible death. and the bridge was open in, i believe, may of 1937. and there's been well over 2,000 people who have leapt to their death from that bridge. the board of supervisors for the bridge voted to put in place a safety net, a safety barrier, uh, on the bridge. and that's going to take place within the next 3 years. there are studies that show if you take away certain means that someone was going to do, uhuh, it significantly reduces the number of suicides. if you are diagnosed with a mental illness--bipolar, depression, whatever it is-- so what? it's an illness. you didn't ask for this. you didn't want it. it's like cancer or something else. we need to work on this. yoyou're still a person. there's people that care for you. tatalk to someonene about it. maybe i's not to that extreme where you have a diagnosis for mental illness. maybe you're just going through some rough times. there's a lot of people out here who can help. mike: that's it for this week. join the conversation with us on social media. we are cctv_america, on twitter, facebook, a and youtub. and now you can watch "full frame" on our new mobile app, available worldwide on any smart phone for free. search "cctv america" on your app store to download today. all of tonight's interviews can still be find online at cctv-america.com. and let us know where you'd like us to take "full frame" next. simply email us at [email protected]. until then, i'm mike walter in los angeles. we'll see you next time. - hello, i'm john cleese. the great world religions all include teachings on the nature of forgiveness, and in the scientific world, one recent study showed that people who were generally more neurotic, angry, and hostile in life were less likely to forgive someone even after many years. other studies show that people who forgive are happier and healthier than those who hold resentments. now, you're about to see an extraordinary program, a studio conversation that you may never forget. so settle back, take a deep breath, as we join our trusted guide and host phil cousineau on a most memorable episode of global spirit, the first internal travel series. 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