. >> so you have cystic fibrosis. >> that's right. >> and how long have you had this? >> i was born with it. >> and you are going to be walking this 3,000 mile journey, explain to us why? >> it's one of the most difficult trails that anyone can attempt in the united states. and growing one a terminal illness, where i was told a lot of times that i couldn't do things. two years ago i made a promise to my sister when she was dying that i would carry her ashes to british columbia and raise money for cystic fibrosis. >> and your sister passed away. >> yes, two years ago? >> and now this is all in her honor. >> it's kind of become a message of keeping her alive and how she risked her life and how to help other people in her flame as well. >> and you said you're going to be carrying her cashes with you? >> i was telling her about this high water hike and i wanted her to do it as a fund-raiser. and she said she wished she could go. and she knew at that time that she was not coming out of the hospital again so i promised her that she still could go in a way and i said i'll car

medical policy and delivery point of view is since we had information on every encounter, in cystic fibrosis there's a metric that tells you quality of care. one key metric which is how normal or healthy are kids' lungs as a function of age. and we took 150 centers and could evaluate them in terms of the quality of care. that indeed, some of the centers were in the top 10. some were in the bottom 10. of course, every center thought they were in the top 10. initially, we fed this information back to each center privately. it greatly increased their attention to what are the practice patterns that deliver the best health outcomes to our cystic fibrosis patients. the registry also allowed to us correlate which practice patterns were associated with better outcomes at the best centers. we can drive that kind of analysis across the health care system if we invest in it and if we continue to develop the people and the expertise to do that right. so i think that's another example of a practice that indeed allows physicians to do what they want to do, which is why they went into medicine, which is t

a good portion of them were people dealing with various forms of cancer: prostate, cystic fibrosis, multiple. and there were people in there with hiv. the stink was that somebody said-- a writer in the new yorker was saying that i was using my own status as a kind of license to make people-- to manipulate people. and that, she says, thinking people-- the only thing they can do is just-- because she said, "i'm not interested"-- how did it go? "in disenfranchised blacks, abused women, fat people," such and such, which is all things that she thought that i was-- the menu i was promoting. i was just talking about marginalized people in general. she said, "i'm not interested in any of that, "and therefore all we should do, and i encourage you to do, is just don't go," you know? as she didn't go. she didn't go see it. she had made up her mind that i had, "worked dying people into my act." there were videos manipulated by a professional video artist, quite beautiful portraits that only happened at a few places through the piece, and at the end. primarily, it was my transposing the materials from th

a disease-modifying treatment for cystic fibrosis would certainly be easier to analyze on the obvious adding value end versus evolved treatments for chronic diseases for which we do not have a good, agreed-upon standards at this point. so, you know, adding together the data itself and some agreed definitions and analytics around those, a platform for sharing those and, very quickly, analyzing them from an infrastructure standpoint. and then last but not least, some flexibility in the system and a broadness to apply all of the things that we would need to analyze in order to actually communicate at the end of the day to freda that she could get her best outcomes by doing the following things and that that conversation can be had and then reimbursed for. >> thank you. rob? >> thank you. thanks for being on the panel, it's a thrill for me to be here although following freda's always a tough act. glad to be here with you today, freda. also glad to be the token representative of the payer community on today's panel. [laughter] i just want to make a few background statements and then provid

a disease-modifying treatment for cystic fibrosis would certainly be easier to analyze on the obviousr chronic diseases for which we do not have a good, agreed-upon standards at this point. so, you know, adding together the data itself and some agreed definitions and analytics around those, a platform for sharing those and, very quickly, analyzing them from an infrastructure standpoint. and then last but not least, some flexibility in the system and a broadness to apply all of the things that we would need to analyze in order to actually communicate at the end of the day to freda that she could get her best outcomes by doing the following things and that that conversation can be had and then reimbursed for. >> thank you. rob? >> thank you. thanks for being on the panel, it's a thrill for me to be here although following freda's always a tough act. glad to be here with you today, freda. also glad to be the token representative of the payer community on today's panel. [laughter] i just want to make a few background statements and then provide a few insights or thoughts. by way of backgr

fertilization, and the cell was analyzed for the presence of a mutation in a particular gene, say cystic fibrosis. if it ran in my family, and i have not had a screaming test, or even if i had, i would want to know if the embryo. that mutation. -- a if that embryo had that mutation. within the food, it is penalized for the presence of a mutation, and pregnancies are sometimes terminated on the basis of genetic information that results. this can lead to an interesting questions. one of the more interesting questions is illustrated by a scenario in which a first child may develop a really severe disease, franconia anemia is one such disease. it is a devastating disease that often leads to death in childbirth. the only way to treat the disease is to give the child they transplant of bone marrow, basically, progenitor blood that basically pretty new blood supply. there is a requirement for that to be successful. the transplant must be genetically matched to the child. you probably will have heard of searches for genetically- suitable donors and banks that house say umbilical blood, or blood samples.

she has cystic fibrosis. >> we are crazy about this family. >> can't go without saying i saw two showsat reviews for that. the whole cast of "catch me if you can" the group that brought you "hair spray." my friend linda hart, we went out and had a little bite. it was all theater day. we are so packed today. >> we are? >> i've gone on and on but i can't. >> watching it live. there are some nos on there. yes, going to wear a fabulous hat and make a traditional english breakfast. can't wait. >> i'll be curious to see what the tally is at end. >> coming up next, you can't avoid it. less than 24 hours until kate and will say "i do" we'll head live to london. [ boy ] there's something inside your mcdonald's happy meal. where? it's really good. do you see it? it's called hope. hope? yeah, hope. i don't see any hope. i don't see any hope in here. you can't see it there, but you can see it here. 'cause every time you get a happy meal or a mighty kids meal some of the money goes to ronald mcdonald house charities to help lots of kids and families. hope's good! happy meals. the simple joy of help