. >> ♪ at the very first long it -- a real performance for cystic fibrosis are rented to an old collegeoommate who organized the event. >> so the kids like to have never used to make it to first grade. so we're very thankful for modern medicine because we're at a point where he has some life expectancy but there is miles to go. >> people doing magic. >> even quiet action with cystic fibrosis that could affect the child's reading. when your child was born with that that means taking action is therapeutic. >> there really makes us feel we're doing as much as we possibly can. >> they both have very good health insurance and a half out of pocket expenses for their performers so when faced with a challenge they put on the show. >> and then to keep them updated by half to take of it real quick. >> it went all right. [laughter] then somebody cackles then five seconds later then people start laughing. [laughter] his older brother richard you went to college with us with a performance artist to know that this show it is hilarious. >> it was never really about love. all in all $2,500 the the grea

the uk's insurance government agency refused to offer a very high reimbursement rate for a new cystic fibrosis drug. when we look at whether will medicare be around and be able to fund our health care needs there was a report that was going to deal with drug pricing and that report looks like it's delay de so it looks like we're going to see no action and no action is good news because the fear is we will see price controls from count some day. >> are there drugs that you're aware of that are in the pipeline or soon to come to market that will be extraordinarily high priced like the ones that treat help at this time tis c that came out in the past couple of years and how burdenensome might they be and i assume those are the ones that medicare might be targeting. >> that's right. when we look at the new group of drugs that are personalized medicines and something called car t, they're very expensive, anywhere from $200,000 to maybe $1 million a person. how are we going to pay for that? that concern is starting to creep into the marketplace as the reality of these drugs gets closer in terms of t

or cystic fibrosis is recessive, or diabetes or many, and it takes up to 20 generations for recessive mutations to express themselves. so we're talking about eons of time for expression of genetic disease--that's the second thing. the third thing is if the man's got plutonium in his testicles--and every male in the northern hemisphere has a tiny load in his gonad--it's from weapons testing days, and plutonium istill falling out. and the man is cremated, the smoke goes up the chimney with the plutonium, so you can breathe it in, another man can, and it's ad infinitum because plutonium has a half-life of 24,400 years and lasts for a long time. but the other thing is that the body thinks plutonium is iron--it's an iron analogue--so it's stored in the liver, where it causes liver cancer. it's stored in the bone marrow to cause--to produce hemoglobin in the red blood cells, but it causes leukemia or bone cancer. it crosses the placenta into the developing embryo--which lets nothing through it, incidentally, except plutonium and a few other nasties. it's stored in the testicle, too. so it's

if you have cystic fibrosis gene mutation in both parents of father and mother in disney 100 percent. if you have another mutation i could tell you from your embryonic cell you will have that diseases 100 percent so that is reading it and now it is more complicated now i can tell you more, but they did things -- complicated things and people started to explore but potentially it is about our identity so those of the territories that we should have some moral concerns about and writing it means not only can i just read it but now i can actually go and make directional and intentional changes through astonishing technologies that we can learn to use that allow us to go into the 66 volume and pick out one of them the race one word put back and we think we're not sure yet all the other 66 volumes and touched. so it seems to me once and never acquired these technologies we need to learn about them we cannot let this happen in the laboratory. last week there was a meeting at harvard were they proposed synthesizing the entire human genome by splitting together the single letters so that you

but if you tweak it you could say i am going to try to erase the cystic fibrosis mutation from my heritage. i will try to change the variation that causes alzheimer's disease from my heritage. in thebizarrest scenario you could say i want to add information back to the human genome which you could do. you could have information to the human genome. >> host: you want to make people taller or something? >> guest: i talk about this. height is genetic but at least 5-7 genes govern that. could you change 5-7 genes? probably. you could add information back to the human genome. >> host: that is a surprising think. >> guest: we should take that very, very seriously. >> host: we will be taking questions from all of you in just a couple minutes but before we do i want to -- just how do we make sure -- be thinking about your questions -- but how to we make sure this kind of work goes in the right direction and not some place we don't want to think about? >> guest: there has to be national agreement. therethex thick you know there will be an -- the next thing you know is there will be an arms race. lo

all of the things you are imagining but at the same time it could be used to care children with cystic fibrosisi think the positives will far outweigh the negatives. emily: since we last spoke it has only gotten worse for sarin notes. should they be running the company? >> that is up to the company. i do not know how it gets better for here -- from here? emily: do you think they could turn it around? >> i do not think there is any way to turn around. i do not think that the technology exists. emily: the public markets about been kind to the bio sector. >> i think the public markets are always wrong in the short-term and right in the long term. if you look at the prospects of sector inike any full's and out of favor over time it may be quite out of favor now but the reality is it will transform not only the length but the quality and duration of our lives. recently leftdel unceremoniously. what went wrong and should we be worried about the future of ness? >> i would not be worried. i think it was reported unceremoniously, but how many successful founders still working today companies that acquir