coming up --r betty rollin reports on parents of desperately ill chi$l)en whoq don't qualify for a@1%9%1ñfá trial, anw> the other option is watching our son deteriorate and die and( we are not going to stand by and do that.ñiñiçó >> and bob faw talks with you a& thor+ amandañzlindhout who was áh @&h(lc& and spent 15 months in captivity.ñi how did she overcome her ordeal and find the power of forgiveness? 4k,p major funding for "reli and ethics newsweekly" is e1çóçó provided by the lilly endowment, an indianapolis based private family foundation dedicated to

its founders' interest in religion, community devj> welcome. i'm hari sreenivasan, sitting in for bob abernethy. as conflicts continue to rage in many parts of the world, úv strong plea for peacaú#his weekó from pope francis. pmpthe start of world war one, f francis urged the international community to remember the lessons of histo- especially the impa of war on children.t( "i beg you with all my heart," t(ju)áuixd to stop."fáw3xdyq5]!á between israel and hamas, a aith-based ñi humanitarian groups specifically

+ jewish religious and community leaders convened a summit to show their solidarity and unity they heard from members of r congress and administration officials who pledged to continue helping israel defend ó

ñ urged the u.s. to provide e1 ^(jc&itarian aid to christians é been uprooted by the violence.u according to the u.n., more tha a million iraqis have been displaced because of the recent events.xd 4ie state department said in itr annual religious freedom report this week that in 2013, more xdr people around the world were forced to flee their homes than at any other point in recent memory. the report said millions of christians, muslims, and hindus are disappearing from their traditional and historic homes.ó the state department also added turkmenistan to its list of worst religious freedom j7çfá violators -- a list that includes china, saudi arabia, iq and sudan, alo with five otheri] countries.ok this week x$;sident obama fá announced that he was tapping rabbi david saperstein to be the next u.s. ambassador for religious freedom.r

the 66-year-old saperstein is a influential rabbi who has led çó the religious action center of ñqú religious action center of he would be the first ñi non-christian to hold the position.ñiw3 in other news, religious groupsi prayed for the victims of a deadly ebola outbreak in west africa, said to be the worst in history. several u.s. h(y(áíuoárp' groupd are pulling volunteers out of africa amid reports that health txme workers were iected, fá samaritan's purse was founded by franklin graham, the son of evangelist billy graham.t(fájfx; authorities in sierra leone, guinea, and liberia are working disease, which has a fatality r rate of up to 90%.nblp here in the u.s., faith leaders( uááj participated in civil disobedience in front of the

the u.s. has soug(5"uj)n+tq"ite the process of deporting them ti their home countries. protesters urged obama to expand aid to migrants and to protect á children from being deported.w3 religious leaders also turned out at public hearings held by the epa to show their support i] for president obama's new plan m%=9m9ñ groups including interfaith power and light and the progressive evangeli# fd sojourners welcomed the clean power plan as an important step (hátq(rp& report.ko in order for a drug to be on thd market, it has to be tested ti sure it is safe and effective. but many patients do not qualify for clinical trials. parents of critically ill

children desperately seek ñi experimental drugs through the fda and pharmaceutical companies and there are ethical issues w3 surrounding who gets the drugs and who doesn't. betty rollin has our report. ñiokfáe and jason fowtee their two child(mt'u&iet and ñi jack, recently moved to r mundelein, itl99=%m1:á @qu)eatment for his life- threatening disease. it's called hunter syndrome.t( he lacks an enzyme needed to break down sugar molecules and, uffers damage t( throughout his body.r >> he has hydrocephalus in the brain, so he has large ventricles with a shunt. he has joint contractures, he k has stenosis in the spinevqñqúóc carpel tunnel2s[ndrome in his hands.qs

>> jack is on an enzyme replacement drug called elaprase, which gave him some relief initially, but no longer. there is a phase ii-iii clinicaó trial going on now that the fowlers tried unsuccessfully to get jack enrolled in. >> so the trial that's going on1 right now is a reformulation of] that elaprase, and it's injectek directly into the spine, and th1 fluid in the spine takes that t( drug to the brain and then it ñi helps the brain, and so it treats that tissue that normallk isn't treated. and so we've be;$6ess q to that because of jack's 3e8hyt he has on his head. >> fo÷@áq%qm:jr(áq ineligible to be !vá of a ñi clinical trial, another option i exists.xd the fowlers tried to get access3 to the treatment they wanted through the program called expanded access or compassionat3 use.t(

but in order for jack to get thl treatment, the drug company, shire pharmaceuticals, would have to comply. but they did not.t( drug companies want to get thei] drug to the market as quickly as possible, and a clinical trial r is the only way to do that.t(fá often drug companies say they td must rej5#) compassionate use because of ñi their concern that their clinical trial process would be compromised.fá nd drug developer çóokçó who chairs the bioethics committee for the biotechnology industry. >> how do we balance the rapid@c and accelerated approval of okjd drugs that we can establish, definitively e and effective versus the needs ] and immediate needs of çó individual patients who cannot wait for us to come to those fá final determinations?jf something that people probably don't quite understand is we only make as much as we need for the clinical trials.r and certainly one or two pab)cnts that we agree to do

expanded access on is probably going to be fine.fá it'll probably be acceptable. but if it's hundreds, and we're only studying hundreds of patients, where's the drug to come from? it's not something that's sitting on our çlves.t( >> the goal of clinical trials is to establish whether drugs t( are both safe and effective.r it's usually a lengthy process.k but desperate patients are not concerned about safety.lp j therapy, based on early and çó preliminary results, was calledp high-dose chemotherapy for breast cancer. it involved using toxic levels i of a drug and replacing the bone marrow. it was the belief then of physicians and patients that q this was better, even though the data was not definitive.ok many patients demanded it, and ultimately insurance companies began to pay for this therapy, which was unproven based on jf7o tz%q"uát+q" the conclusion of te definitive clinical trials by years.r

and when those final trials ñi results were reported out,?;ko this very toxic therapy was no better than standard chemotherapy, and in fact it did harm. é çóñiágx his office fields more and moref calls from patients who, having received permission from the drug company, now need the fda to grant their request for thesó unapproved drugs. most of the time the request is granted, but he often feels tha] >> peopl!nq+yujráu(rá confidence that because it's new, because it's in development it's going to be effective, it' going to be a cure. people always say, "well, if a person is in a deadly situation and they'r9going to die anyway," as people often say, i] "what could possibly be worse?" and it could be that people xd+d would be hurried to a death. you can die much sooner taking i certain chemicals. or it could prolong life without

any benefit in terms of quality of life.qçó >> but that view has not lpñrçóp jt+htjtáápáient çóçóñr advocate, who after her own sonf jacob, died created kids v cancer, an organization promoting drug access and development for children.w3 >> the most serious obstacle, r frankly, is the relatively small size of the market for pediatric +y diseases.fáok we have to find ways in our society to either give companies a reason to come in this market or really pour in significant government resources into developing these drugs.q

missouri and louisiana, and in u)s& be on ok the ballot in november.ñrlpa5ok drug companies in these states, however, are not obliged to make the drugs available, and insurance companies don't have d to pay for the treatments. richard klein has some doubts about the new legislation.çóñr >> the agency has a pasá/e9ñe1çr it seems to work quite well, and i'm not sure what the state fu

>> we're working with some ñi physicians to take jack's elaprase and have it reformulated so that they could administer it the sas(ayreoh)ic( supports the compassionate use  program, he sometimes worries that people's desperation to get unapproved medication for their loved ones may not be what theik loved ones truly want.t( >> i've seeét more than once ht& where it's the family members simply can't let go or decide wm canq leave no stone uéhi91ñ

whether or not it's what the patient really wantst( andt( fe is the best thing for the patient. >> all the harder to know if the patient is a young child. xd for "religion and ethics newsweekly" i'm betty rollin in mundelein, illinois.çóe1xdxdçót(

ak-47s seized them and demanded a ransom of $3ñr million. >> i found myself lying face down on the dirt spread eagle with a gun held to the back of my head.fár our kidnappers told us they were going to kill us. they told us that they would behead us if the money wasn't paid. >> in her book, lindhout talks about converting to islam during her captivity and reading the koran multiple times. you say it wasn't surrender, and it wasn't defiance. this was to islam. this was simply a chess move. we were doing what it took to survive. >> what i wanted out of it was to understand what motivated my captors. they believed that we were enemies and that based on these particular passages in the koran that it was justified under islamic law then to abduct us and ask for a ransom. >> using what she learned in the koran, she pleaded for her freedom. you said, i am your muslim sister.

you have to help me. allah says muslims have to help one another. >> well, muslims have the belief that everything is preordained, and so, therefore, i was exactly where i was supposed to be at that moment in time. the more i came to understand how liáerally they take it that everything is preordained, i realized that i couldn't argue with them about this being wrong, what they were doing was wrong. >> after being held for five months, lindhout and brennan tried to escape and fled to a local mosque where a woman tried to help. >> when nigel and i ran in, our captors ran in right behind us with guns, so the danger, the real dangers that existed that day makes what that woman did at the mosque all the more remarkable because that woman, she saw a stranger, a woman in need of help, and she just reacted, and she came directly over to me and embraced me and

called me her sister, and she did everything she could that day, putting her own life on the line to try to help me. >> recaptured, her kidnappers made her life almost unbearable. >> i couldn't move because my captors had wound a thick metal chain around my ankles, which they secured with heavy padlocks which remained on my ankles for the next 10 1/2 months. i couldn't sit up. i couldn't even lie on my back. i could lie only on my side on this very thin, filthy foam mat on the floor in the dark for 24 hours a day. >> lindhout was repeatedly abused, nearly starved, and in excruciating pain. >> i just couldn't understand how people could be capable of reaching those kinds of depths to inflict that kind of suffering on another human

being, and i became consumed by anger and confusion and self-pity and rage. >> you flirted with the idea of suicide. you had a razor. you could have. why didn't you? >> i very calmly made this decision to end my life, but i had this unbelievable experience that probably almost sounds like i'm making it up. it was a spiritual experience that absolutely changed everything for me. as i looked over towards the door, there was this little brown bird hopping around in this square of light. and i hadn't seen a bird in a year. and this bird, to me, was a messenger to hold on. all of the desire to end sv own life left me in that moment, and i became fueled by this desire to continue to live, to choose life no matter what they were going to do to me.

>> from that point on, as described in her book, it wasn't just her willpower, but her imagination which helped amanda lindhout to go on. >> in my mind i built stairways. at the end of the stairways i imagined rooms. >> and because of that imaginary house in the sky, because of what she could envision, amanda lindhout was able to endure. >> it was essentially a place that i could go in my own mind to escape my daily reality, and so in my house in the sky it was everything from remembering the life that i had lived and so recreating trips that i had been on in the finest detail to imaging what it would be like to sit around a table and share a meal with my family. the more i used these practices, like going to my house in the sky, the easier it became. and believe it or not, i could close my eyes and escape my

reality, and i could even -- i could smile at a nice memory, i could laugh at remembering a joke. >> now, looking back on that terrible ordeal, lindhout remembers another turning point as she was being assaulted by two of her captors. >> i remember it so clearly looking down on those three people on the floor, one of whom was me, and the two young men, teenagers who were torturing me and hurting me, and so it surprises people to hear me say there was a sense of compassion that i had for the fact that those young men were the perpendicular pet waiters of violence, that they were also the victims of it. and this is not stockholm syndrome, and i am not saying that they were innocent at all, but that is just the truth of the situation. >> and at that point, she would write, "i began to nurture something i'd never expected to feel in captivity, a seedling of compassion for those boys." >> physically i was in chains on

the floor and i had no power, no control over that, but i still had the power to choose my response to what was happening to me, to hold on to my own morals and my own values. i knew somehow at the deepest part of my being that if i chose forgiveness, that experience just would not have the power to crush me. >> lindhout still wrestles with hatred and anger, as she did in captivity. but then and now she tries to choose forgiveness. >> of course, i was angry for everything that was happening to me, but as time went on in captivity, i just realized for my own self, for self-preservation, that i couldn't stay trapped in that emotion, that i had to try to find ways to let it out, and that's when i started developing practices like choosing forgiveness in captivity. >> you said the mind at one point, this is i think when your hands and your feet were bound, the mind almost became muscular

you say. but you also said you didn't know whether that was a survival tool or a glimpse of lunacy. >> i was alone for the first time, so really alone for the first time in my life. i remember that being the period where i was absolutely terrified of losing my mind. but the more time that i spent alone, i mean, i had 13 months in captity alone, the mind became very, very strong, and that's what i mean when i refer to it as muscular. the more that i used these practices, like going to my house in the sky, the easier it became. >> finally they were released after a ransom of $300,000 was paid by lindhout's and brennan's parents. she has spent the last four years recovering and writing her book and starting a foundation, raising over $3 million to help somali refugees living in neighboring kenya. >> this work has really become my life.

it's what i call compassion in action and it's really all about the choice that i make every day to forgive that allows me to step into this work. >> now 33 and enrolled in a canadian university, she still has dark moments and wrestles with ptsd from an ordeal which has left her both wounded and stronger. >> i pray many times in a day now, and for me now my prayers are very, very different. they're more like a statement of gratitude for everything that i have, for my freedom now, for the ability to experience the beauty of the world again. i'm really profoundly grateful for that, and i think it's really important to express that. >> amanda lindhout, traveling from darkness into light and from a house in the sky to an inner peace. for "religion and ethics newsweekly," this is bob faw in new york. finally, on our calendar

this week, jews mark the solemn holiday of tish bav. for jews, it is a day of fasting and lament for the destruction of the first and second temples in jerusalem, and for other tragedies in jewish history. that's our program for now. i'm hari sreenivasan. you can follow "religion and ethics newsweekly" on twitter and facebook and watch anytime on the pbs app for iphones and ipads. and visit the website where there's always much more, and where you can also listen to or watch each program. join us at pbs.org. as we leave you, scenes of muslims around the world celebrating eid-al-fitr, the end of ramadan.

♪ major funding for "religion and ethics newsweekly" is provided by the lilly endowment, an indianapolis based private family foundation dedicated to its founders' interest in religion, community development, and education. additional funding also provided by mutual of america, designing kos tumized individual and group retirement products. that's why we're your retirement company.

>> rose: welcome to the program. i'm charlie rose. the program is "charlie rose: the week." just ahead, the ebola outbreak in africa. a conversation with the leader of hamas. and a new exhibition of classic american fashion. >> perhaps the one that we were really thrilled to be able to borrow from the victorianlbert in london is james' puffer coat from 1938. i think that's one of my favorite pieces. >> rose: we have those stories and more on what happened and what might happen. >> there's a saying around here: you stand behind what you say. around here, we don't make excuses, we make commitments. and when you can't live up to them, you own up and make it right. some people think the kind of accountability that thrives on so many streets in this country has gone missing in the places where it's needed most.