we don't have a cure for cancer or cystic fibrosis. there are tons of infectious diseases out there we don't know what to do with. here's an opportunity we can use to help. we have a tool that can be helpful in combating this issue. you know, i think people are inherently really good and people want to help. this is an amazing opportunity to get the nasal spray or a little prick that can really save people's lives. >> you're saying there's no cure for cystic fibrosis. we hope that changes, though. >> yes. >> which shows me something you introduced personally to me. can you tell us about emily's entourage. >> my friends and family and i have started a nonprofit organization called emily's entourage. we founded it in december 2011. since then we've raised $1.5 million, over $1.5 million to find treatments and cures for cystic fibrosis. there have been big breakthroughs, but, unfortunately, i have a rare form that hasn't been able to benefit from any of the advances. we're pouring our hearts and souls into vigorously trying to find a brea

. >> monica, this past saturday, cystic fibrosis foundation hosted the breath of life gala honoring mytner joe jacovini, raising over $1 million. not that long ago, people who had cystic fibrosis, the death sentence was that you couldn't see kindergarten. today people live long into their 40s, and very soon, c.f. will mean "cure found." >> wouldn't that be wonderful? all right, thanks to all our insiders for your ideas and your time. thanks so much to you for watching. hope you have a great week ahead, and we'll see you right here next sunday morning. ♪ i'm nydia han along with eva pilgrim. grew breaking news, several firefighters are injured when a car arrest fire truck collide in west philadelphia. >>> a police officer in western pennsylvania is gunned down in the line of duty while responding to domestic issues and police have the suspect in custody. >> authorities in colorado released disturbing details about the man accused of killing three people at a planned parenthood. >>> those stories and more next on "action news." love or like? naughty or nice? calm or bright? but at bedtim

anne: consumers can buy things like cystic fibrosis tests without having to go through a counselor or a physician. they can buy them directly from 23andme and get that information. emily: this tests for things like recessive genes. things you could pass on to your children. anne: there are things like your eye color. that teaches people about genetics and caffeine metabolism. that's really interesting. emily: i would like for you to take me back to that day when you got that letter from the fda. anne: we were at an off-site planning for the future. we were all in great moods. just hired a great number of people. we had a lot of people that had started that week. what we learned is how much there was a disconnect because of what we thought we were doing and what the fda needed us to do. emily: did you think you could lose the company? anne: it took a while to understand. there were six weeks where we talked to a number of lawyers. we talked to the fda. it became clear that there were not -- there was no easy option forward. emily: did you consider selling? anne: no. the idea that genet

center will start performing lung transplants. 3 at 6 months old trent allsman was diagnosed with cystic fibrosis."i've been with these doctors and these nurses and this staff for my entire life." for the past 28 years nebraska medicine has been allsman second home...but a few weeks ago...he almost had to leave home..."people travel all over the country to find the right transplanting institution for them."allsman was about to go to minneapolis for a lung transplant evaluation when he received word that nebraska medicine was launching a lung transplant program..."being able to continue being here with those same people, yah it's hugely beneficial."the news is not only major for allsman...but for other nebraskans needing a lung transplant..."those people now have the opportunity to be evaluated here and potentially be transplanted close to home where their family is available to support them." andrea mayberry knows how important it is to stay close to home for a lung transplant..."being close to family and kinda potentially still having a normal routine is very important to help you emotionally an

travel to other cities for those transplants. 3 at 6 months old trent allsman was diagnosed with cystic fibrosis--- [notes:we have a baby picture of him getting treatment]<"ive been with these doctors and tse nurses and this staff for my entire life">for the past 28 years nebraska medicine has been allsman second home...but a to leave home...<"people travel all over the country to find the right transplanting institution for them">allsman was about to go to minneapolis for a lung transplant evaluation when he received word that nebraska medicine was launching a lung transplant program...<"being able to continue being here with those same people, yah it's hugely beneficial">the news is not only major for allsman...but for other nebrasasns needing a lung transplant...<"those people now have the opportunity to be evaluated here and potentially be transplanted close to home where their family is available to support them"> andrea mayberry knows how important it is to stay close to home for a lung transplant...<"being close to family and kinda potentially still having a normal routine is very importa

anne: consumers can go and buy things like cystic fibrosis tests without having to go through a physician. emily: and this is a test for recessive genes, a thing you might pass on to your kids. anne: correct, something you might pass on to your children, and other things like your eye color, things like caffeine metabolism. emily: i would love it if you could take me back to that day when you got that now infamous letter from the fda. anne: it was november 22, 2013. we were at an off-site planning for our future. we had hired a great number of people. i think what we learned after that moment is how much there was a disconnect between what we thought we were trying to do with the fda and what they really needed us to do. emily: did you think for a moment, oh my goodness, that's our company. anne: there was probably about six weeks there where we talked to a number of lawyers, we talked to the fda, and it became really clear that there was no easy option forward. emily: did you seriously consider selling the company? anne: no, the idea that genetic testing is going to be a foundation for h

anne: consumers can go and buy things like cystic fibrosis tests without having to go through a physician. so they can buy that directly from the website and get that information. emily: and this is a test for recessive genes, a thing you might pass on to your kids. anne: correct, something you might pass on to your children, and other things like your eye color, things like caffeine metabolism. which, again is just really interesting. emily: i would love it if you could take me back to that day when you got that now infamous letter from the fda. anne: it was november 22, 2013. we were at an off-site planning for our future. we were all in great moods. we had hired a great number of people. we had a number of people who had started that week. i think what we learned after that moment is how much there was a disconnect between what we thought we were trying to do with the fda and what they really needed us to do. emily: did you think for a moment, oh my goodness, that's -- i could lose the company. anne: there was probably about six weeks there where we talked to a number of lawyers, we ta

center will start performing lung transplants. 3 at 6 months old trent allsman was diagnosed with cystic fibrosis."i've been with these doctors and these nurses and this staff for my entire life." for the past 28 years nebraska medicine has been allsman second home...but a few weeks ago...he almost had to leave home..."people travel all over the country to find the right transplanting institution for them."allsman was about to go to minneapolis for a lung transplant evaluation when he received word that nebraska medicine was launching a lung transplant program..."being able to continue being here with those same people, yah it's hugely beneficial."the news is not only major for allsman...but for other nebraskans needing a lung transplant..."those people now have the opportunity to be evaluated here and potentially be transplanted close to home where their family is available to support them." andrea mayberry knows how important it is to stay close to home for a lung transplant..."being close to family and kinda potentially still having a normal routine is very important to help you emotionally an

with orcom-b, the cystic fibrosis drug, it's something that we pay for. we're incurring a lot of expenses for, but we don't see the danger of abuse around that. we don't see the issues with adherence around that. and so it's something that we're much more comfortable with, that that is a success story by providing that to as many people and as broadly as possible. we're not in danger of getting knocked sideways. >> andrea, let's go to you and talk about employers and what they view as their most effective set of tools. it's not necessarily their tools, it's tools that they ask others they work with whether they be pharmacy benefit managers or their insurers or others to engage in. but employers have tried a whole lot of strategies from mail order, from formularies, from tiering, et cetera. as we move into the specialty sphere in particular and these cost pressures, how are employers thinking -- what are they thinking are the most effective purchasing and utilization strategies that they will have at their disposal? >> it really depends because employers'

and some 23 years later we've raised some $130 million in the fight against cystic fibrosis. he's living, breathing, and succeeding. and he's doing what he really, truly loves. he's coaching football. as for east islip football they're never far from boomer's thoughts.current coach sal jr. : boomer is still so visible and he's still out there every day. he's on either their radio or their tv. maybe because their parents are listening. a lot of these kids do know exactly who he is. (nats:sal jr: the best coach and the best player to ever be a part of this teams history. my father sal ciampi and boomer esiason. (cheers)) boomer: football brings a lot of people together. it brings families together. it brings men makes men into men. (nats: boomer: somebody who's meant so much to be in my life, sal ciampi.)ciampi sr: he's never forgotten where he's come from and you know what? so many people do. ciampi jr: last year, when we won a championship the first thing they asked me at the end of the game was, "have you heard from boomer yet?" you know a cathere is going to be verthat are

23 years later and raised 133 against cystic fibrosis he is living and breathing and succeeding and doing what he truly loves. he is coaching football. >> whoa! >> reporter: as for east islip high school football they are never far from boomer's thoughts. >> boomer is still so visible and out there every day and either on radio or tv maybe because their parents are listening. a lot of these kids do know exactly who he is. >> the best coach and the best player to ever be part of this program in its history, my father, sal champee and boomer esiason! >> yea! football brings a lot of people together. it brings family together and brings men together and makes men into men. so many who was meant so much to me in my life, sal champion. >> he has never forgotten where he has come from and you know what? so many people do. last year we won a championship the first thing they asked me at the game, have you heard from boomer yet? a lot of schools will have a lot of trophies in the trophy cases but very few with something like that so i think it's a great thing for the school. >> east islip! >> boo

. >> reporter: boomer's ongoing legacy is the result of his son gunner who was diagnosed with cystic fibrosis at the age of 2. >> i thought i was going to retire. i thought this is it. what do you do as a parent of a special needs child? don't you quit and don't you just dote on this child? 23 years later and raised 133 million dollars in the fight against cystic fibrosis he is living and breathing and succeeding and doing what he truly loves. he is coaching football. >> whoa! >> reporter: as for east islip high school football they are never far from boomer's thoughts. >> boomer is still so visible and out there every day and either on radio or tv maybe because their parents are listening. a lot of these kids do know exactly who he is. >> the best coach and the best player to ever be part of this program in its history, my father, sal champee and boomer esiason! >> yea! football brings a lot of people together. it brings family together and brings men together and makes men into men. so many who was meant so much to me in my life, sal champion. >> he has never forgotten where he has come fro

surface on this and these have been revolutionary for people that have gout, huntington's disease, cystic fibrosis. these have been revolutionary for them. and then the other thing is that spending on orphan drugs worldwide in 2020 but will be as much as 10% in the u.s. one thing i did not mention earlier, 35% of the united states is that only represents 1% to 2% of the prescriptions. leading to 35% spent. the right-hand side shows you which ones will be specialty buy lodgics, which would be traditional molecules and you see that most of the growth is happening on the specialty side and the breakdown in the middle shows you what disease state that is. to give you an illustration of this, how the world will be different, take cancer for a minute. 91% of the drugs would be targeted versus hormonal, radiati radiation. 33% would have biomarkers so we're moving in the direction that you'll be able to make sure that cancer drug is going to work on the person before you and it's 33% in 2020. these will be rare disease cancer drugs. when you look at hepatitis c, this is worldwide, this will show you the t

. >> vertex, cystic fibrosis formulation, i think it's amazing, i think ver tech is a buy. let's go to mark in vermont. mark. >> caller: hey, jim, how you doing, buddy? >> all right, how but, chief? >> caller: good, man, just started cstar started "confessions of a street addict." >> flipped some pages the other day. >> caller: tell you quick, jim that watching your show, reading your book and seeing how you use your knowledge, your passion, your resources to truly help people, it's really inspired me and you really played a big role in igniting my passion. >> thank you. that's what i'm trying to do with the street, trying to do with ax alert with "squawk on the street," trying to do with this show, trying to do with periscope, trying to do with twitter, trying to do with facebook. what's happening? how can i help? >> caller: you're doing it, man. >> thank you. >> caller: what do you think the long-term, what do you think of fire eye? >> i'm glad you said long-term, short term, i'm concerned, turned out to be more episodic than i like it, need a hack attack. and i -- when w

travel to other cities for those transplants. 3 at 6 months old trent allsman was diagnosed with cystic fibrosis--- [notes:we have a baby picture of him getting treatment]<"ive been with these doctors and these nurses and this s sff for my entire life">for the past 28 years nebraska medicine has been allsman but a few weeks ago...he almost had to leave home...<"people travel all over the country to find the right transplanting institution for them">allsman was about to go to minneapolis for a lung transplant evaluation when he received word that nebraska medicine was launching a lung transplant program...<"being able to continue being here with those same people, yah it's hugely beneficial">the news is not only major for allsman...but for other nebraskans needing a lung transplant...<"those people now have the opportunity to be evaluated here and potentially be transplanted close to home where their family is available to support them"> andrea mayberry knows how important it is to stataclose totoome for a lung transplant...<.

counties last year so we are literally treating iowans and their kids with cancer, diabetes, cystic set fibrosis, kids that need surgery. all kinds of care that we provide right here. alyx: this is the 32nd annual festival of trees and lights. last year was record-breaking, they raised $500,000 and had 20,000 people walk through the festival. it is on track to beat last year, a record attendance for the gala. they have a record number of trees, about 79. don't forget all the festival favorites like scavenger hunts, santa claus, children's trains, they will even have a film on friday that will play at 5:00 at regular attendance price and it will be extra special underneath all the trees. of course there's arts and crafts, food, shopping, all of the favorites are here. i would like to take a quick moment to show you a special tree, the blank children's hospital memorial tree. it's adorned with forget-me-not hearts representing the precious children the hospital has cared for that are no longer with us. the hearts will be given to the families of those children who passed away this year, so they ar

it's open and roman and there are no denials, what happens with people with cystic fibrosis who signs up with one company and their risk goes to the dickens? we know that does not happen with kidney disease because that has been federalized. distorted risk pool like that -- host: we lost him. guest: this is more complicated. one of the fundamental. as if you believe that competitive health plans are better than having the government fix prices, you have to go with risk selection. used to be that insurance youanies -- we used to joke want to avoid sick people. the exchanges, we put in something called risk adjustment. it says if you have a really sick patient, on average, everybody is a 1.0 risk. marathoner maybe less. if you get the patients coming in, you get different risk scores. general, if aetna gets more sick people and their risks or tends to be 1.2 in the blue cross plan is a 0.9, they get paid differently. it encourages the insurance companies to find six people and cover them because they will get -- to find sick people and cover them because they will get paid for it. we ha

it's open and roman and there are no denials, what happens with people with cystic fibrosis who signswith one company and their risk goes to the dickens? we know that does not happen with kidney disease because that has been federalized. distorted risk pool like that -- host: we lost him. guest: this is more complicated. one of the fundamental. as if you believe that competitive health plans are better than having the government fix prices, you have to go with risk selection. used to be that insurance youanies -- we used to joke want to avoid sick people. the exchanges, we put in something called risk adjustment. it says if you have a really sick patient, on average, everybody is a 1.0 risk. marathoner maybe less. if you get the patients coming in, you get different risk scores. general, if aetna gets more sick people and their risks or tends to be 1.2 in the blue cross plan is a 0.9, they get paid differently. it encourages the insurance companies to find six people and cover them because they will get -- to find sick people and cover them because they will get paid for it. we have b

a few years ago, sara american han nearly lost her life to cystic fibrosis. they initially denied her the chance for a lung transplant because she was too young for the plagues. luckily, that decision was overturned due in large part to public pressure that we here at fox newschannel are proud to be a part of. our next guest is continuing to fight for patients like sara. darcy olson is the awe nor of the book the right to try, how the federal government prevents americans from getting the life-saving treatments they need. good morning. thanks for being with us. >> good morning. thank you. >> when you hear about a piece of legislation like this being vetoed, you think about all the patients and their family members going, we don't have time to wait. >> right. >> i mean, the right to try laws are about giving people with terminal illnesses the right to try to save their lives when their mortality hangs in the balance. we're talking about, i like to say, let's get the lifeboats in the water. >> the fda is saying they're trying to streamline the process. they sai

specific one that has it gotten much bad much attention was the news is stick by birch's drug -- cystic fibrosisrug but that doesn't get as a much attention as hepatitis c. but with those dangers associated with then that would push upward. but with those expensive we don't see the dangers is much more comfortable web and then they would get knocked sideways. >> with those effected a set of tools. for those two engaged in but two of all strategy's of mail orders and formulas with that specialty's year in particular our employer thinks with the utilization and strategy. >> depends the strategy is the total business strategy. >> but it is available with the utilization management. to make sure they are having different formulary options. en to feel that those are enough. with those types of arrangements that christie was describing that they do not be as effective. >> it is dependent upon the strategy and we gave to focus. >> and the point he was making an with the health insurance side and from your perspective thinking about the most important tools. >> and then using the same tools to help us r

and these have been revolutionary for people that have huntington's disease, cystic fibrosis.ve been revolutionary for them. and then the other thing is about spending on orphan drugs worldwide will be one to 2% of the spam in 2020 will be as much as 10% in the u.s. one thing i did not mention earlier is that when you look at specialty spend which is 35% in the united states is that only represents one to 2% of the prescriptions. so one to 2% of the prescriptions is leading to 35% of specialty spend. so here's an illustration of the progress that we made worldwide in terms of innovation. the right inside shows you which ones are going to be specially biologics, which ones will be traditional biologics, traditional molecules and specialty small molecules. and you see that most of the growth was happening on the specialty side of the breakdown in the middle chart shows you what that is. to give you an illustration of this of how the world is going to be different, take cancer for a minute. is that cancer by 2020 in the united states is 91% of the cancer drugs will be targeted yo