. coming up -- experimental drugs be administered before they've been officially approved? betty rollin looks at the efforts of some parents of critically ill children. and my special report on faith communities and the rising heroin crisis. one grieving father criticizes what he calls a religious "code of silence" about drug abuse in the pews. >> the price is more parents who bury their children, their sons and their daughters. ♪ ♪ major funding for "religion and ethics newsweekly" is provided by the lily 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 customized, individual and group retirement products. that's why we're your retirement company. welcome. i'm kim lawton, sitting in for bob abernethy. thank you for joining us. religious groups were among those condemning a new york grand jury decision this week not to bring charges against a white police officer for the death of an unarmed african-american man. the police were trying to arrest eric garner for selling loose cigarettes and placed him in an apparent chokehold that led to his death. the united church of christ called the decision "an inexplicable travesty." southern baptist leader russell moore said, quote "a government that can choke a man to death on video for selling cigarettes is not a government living up to a biblical definition of justice, or any recognizable definition of justice."

the decision came as tensions remain high over the missouri grand jury's decision not to indict a white policeman for the death of michael brown. earlier in the week, president obama met with law enforcement officials, civil rights leaders and clergy to find new ways to build trust between the police and local communities. the president said faith groups must be part of that effort. >> when any part of the american family does not feel like it is being treated fairly, that's a problem for all of us. the u.n.'s world food program this week was forced to suspend food aid for 1.7 million syrian refugees. the agency said it had to take that action because international donors had failed to meet their funding commitments. wfp has provided syrian refugees in jordan, lebanon, turkey, iraq and egypt with electronic vouchers to buy desperately-needed food. officials say many hungry

families have no other source of assistance. during his visit to turkey last week, pope francis denounced what he called the "degrading conditions in which so many refugees are forced to live." he met with nearly 100 young syrians and iraqis in istanbul and urged the international community to work harder to resolve the conflicts that have generated the refugee crisis. the main purpose of francis' trip was to visit ecumenical patriarch bartholomew, spiritual leader of the world's 300 million eastern orthodox christians. the two issued a joint statement pledging to work for unity between their traditions, which have been divided since 1054. patriarch bartholomew said with the persecution of christians across so many areas of the middle east, the two churches are "already regrettably unified through the blood of martyrdom." after he returned to the vatican, francis hosted a wide array of religious leaders who

signed a declaration calling for an end to modern-day slavery by 2020. the leaders represented christians, buddhists, hindus, jews, and muslims. they called slavery a crime against humanity and said it is a moral imperative to end practices such as human trafficking, forced labor, prostitution, and organ trafficking. here in the u.s., as the number of states allowing same-sex marriage continues to grow, a new study says that roughly half of americans now favor splitting civil marriage from religious marriage. according to lifeway research, 49% of respondents agreed with the statement that "religious weddings should not be connected to the state's definition of marriage." the united nations and the world council of churches joined together this week urging more cooperation between the international community and faith leaders in fighting ebola, especially in west africa. meanwhile, the world health organization said the number of infections worldwide has surpassed 17,000, most of them in guinea, liberia, and sierra leone.

the humanitarian group doctors without borders said the international response has been too slow and called for more aid to the region. one of the questions that has arisen during the ebola crisis is whether it is ethical to administer untested and unapproved treatments because of the desperate nature of the situation. it's a question that has also confronted others, including parents of critically ill children. some have been seeking experimental drugs through the fda and pharmaceutical companies, but there are ethical issues surrounding who gets the drugs and who doesn't. betty rollin has our report. >> reporter: jamie and jason fowler and their two children, juliet and jack, recently moved to mundelein, illinois where jack can get treatment for his life-threatening disease. it's called hunter syndrome. he lacks an enzyme needed to break down sugar molecules and, as a result, suffers damage throughout his body. >> he has hydrocephalus in the

brain, so he has large ventricles with a shunt. he has joint contractures, he has stenosis in the spine, carpel tunnel syndrome in his hands. he's had surgeries done. he has heart stuff going on, liver and spleen enlargement. >> reporter: is he in pain? >> i think his tolerance for pain is high, but i think that there's definitely pain involvement. >> reporter: jack is on an enzyme replacement drug called elaprase, which gave him some relief initially, but no longer. there is a phase ii/iii clinical trial going on now that the fowlers tried unsuccessfully to get jack enrolled in. >> so the trial that's going on right now is a reformulation of that elaprase, and it's injected directly into the spine, and the fluid in the spine takes that drug to the brain and then it

helps the brain, and so it treats that tissue that normally isn't treated. and so we've been denied access to that because of jack's hydrocephalus and the shunt that he has in his-on his head. >> reporter: for patients who are ineligible to be part of a clinical trial, another option exists. the fowlers tried to get access to the treatment they wanted through the program called expanded access or compassionate use. but in order for jack to get the treatment, the drug company, shire pharmaceuticals, would have to comply. but they did not. drug companies want to get their drug to the market as quickly as possible, and a clinical trial is the only way to do that. often drug companies say they must reject applicants for compassionate use because of their concern that their clinical trial process would be compromised. dr. russell medford is a cardiologist and drug developer who chairs the bioethics committee for the biotechnology

industry. >> how do we balance the rapid and accelerated approval of drugs that we can establish, definitively establish, are safe and effective versus the needs and immediate needs of individual patients who cannot wait for us to come to those final determinations? something that people probably don't quite understand is we only make as much as we need for the clinical trials. and certainly one or two patients that we agree to do expanded access on is probably going to be fine. 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 shelves. >> reporter: the goal of clinical trials is to establish whether drugs are both safe and effective. it's usually a lengthy process. but desperate patients are not concerned about safety. >> in the 1990s, a new form of therapy, based on early and preliminary results, was called high-dose chemotherapy for breast cancer. it involved using toxic levels

of a drug and replacing the bone marrow. it was the belief then of physicians and patients that this was better, even though the data was not definitive. many patients demanded it, and ultimately insurance companies began to pay for this therapy, which was unproven based on clinical trials. it delayed the conclusion of the definitive clinical trials by years. and when those final trials were, results were reported out this very toxic therapy was no better than standard chemotherapy, and in fact it did harm. >> reporter: richard klein directs the fda's patient liaison program. his office fields more and more calls from patients who, having received permission from the drug company, now need the fda to grant their request for these unapproved drugs. most of the time the request is granted, but he often feels that their hopes are misguided. >> people have too much confidence that because it's new, because it's in development

it's going to be effective, it's going to be a cure. people always say, "well, if a person is in a deadly situation and they're going to die anyway," as people often say, "what could possibly be worse?" and it could be that people would be hurried to a death. you can die much sooner taking certain chemicals. or it could prolong life without any benefit in terms of quality of life. >> reporter: but that view has not deterred nancy goodman, patient advocate, who after her own son, jacob, died created kids v cancer, an organization promoting drug access and development for children. >> the most serious obstacle, frankly, is the relatively small size of the market for pediatric cancer and other pediatric rare diseases. 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. >> reporter: nancy goodman also points out how difficult it can be for families to apply to the drug company for compassionate use. >> companies don't have on their websites a little button, you know, click here to apply for the compassionate use program. they don't have a stated policy as to what their timeline will be for turnaround. >> reporter: in desperation, some parents turn to social media. the idea is to get people, anyone they can, to support their efforts in getting the drug that they want from the drug company. and there is now some legislative action supporting this cause. colorado recently passed what is known as a right to try law which allows patients to receive experimental drugs without going through the fda. similar bills have passed in missouri and louisiana, and in arizona right to try will be on the ballot in november. drug companies in these states, however, are not obliged to make the drugs available, and insurance companies don't have to pay for the treatments.

richard klein has some doubts about the new legislation. >> the agency has a pathway. it seems to work quite well, and i'm not sure what the state right to try bills would really add to that, and in fact i think might take away some of the safety advantages that people have by going through the fda process, where you've got institutional review board, you've got somebody checking the informed consent, make sure that patients are fully aware of what they're getting into. >> reporter: meanwhile, the fowlers have taken their son jack's treatment into their own hands. >> we're working with some physicians to take jack's elaprase and have it reformulated so that they could administer it the same way that's done in the trial, just without shire. we shouldn't have to. is there risk involved? there definitely is but, again, we don't, you know, the other option is watching or son deteriorate and die and we're not going to stand by and do that.

>> reporter: although richard klein supports the compassionate use program, he sometimes worries that people's desperation to get unapproved medication for their loved ones may not be what their loved ones truly want. >> i've seen it more than once where it's the family members simply can't let go or decide we can't leave no stone unturned, whether or not it's what the patient really wants and feels this is the best thing for the patient. >> reporter: all the harder to know if the patient is a young child. for "religion and ethics newsweekly," i'm betty rollin in mundelein, illinois. u.s. officials say heroin abuse has been rising to epidemic levels. it affects people across demographic lines, including those in small towns and in the faith community as well.

earlier this year, i looked at that crisis. and one of the nation's most prominent evangelical leaders, reverend richard cizik, shared with me the story of his own son, richie, who died of a heroin overdose one year ago this month. >> reporter: for years, reverend richard cizik has been one of the nation's most prominent evangelical voices, advocating on issues from religious freedom to interfaith dialogue and climate change. now he's taking up a new cause, one he never wanted. >> this has been my whole career, really, on so many public issues. but never did i imagine it would cut so close to home or be so personal or painful. >> reporter: on december 19, 2013, cizik's 23-year-old son, richard cizik, jr. -- richie -- died of a heroin overdose. now, cizik is urging the faith community, and churches in particular, to get more involved in fighting america's burgeoning heroin epidemic.

>> the irony of it all is that there is little, if any, community support, and no one will talk about this. it makes me fear for other families. >> reporter: richie died where he was brought up, in the family's home in fredericksburg, virginia, about an hour outside washington, d.c. >> he was a beautiful son. he was the effusive, effervescent, upbeat, kind of optimistic kid you would always love to have, who never got into trouble and was, well, he grew up from being that little baby in your hands to being 6'5". >> reporter: richie was close to his younger brother, john. >> we hung out all the time, really. every day, if he was around here. >> reporter: but richie had a secret. after breaking his wrist in a skateboarding accident, he took the prescription pain killer, oxycontin. then he moved to heroin. the family found out about richie's addiction in the summer of 2013, when he passed out in a restroom. that led to drug charges. >> he said, "dad, it's the worst thing you can ever imagine.

if there's a place called hell, this is it." and i said, "well, richie, we'll get you help." and so he wanted help, willingly went to rehab, and then came out of rehab a different kid. >> reporter: richie spent six weeks in rehab, and was set to go to another treatment facility in january. but the family brought him home from rehab for thanksgiving and christmas. >> we thought that would be safe. it wasn't safe. we did the worst thing imaginable. we brought him into our own home thinking it would be okay for just a few days. but little did we know that there's a 90% relapse rate. >> reporter: richie had his cell phone back, and cizik says without the family knowing it, richie's dealer got back in touch with him. >> just before christmas. i came down to trim the tree and said, "richie, will you help me?" he said, "i'm going out for breakfast." i said, "i'll make you breakfast."

he was beefing up and putting on weight, feeling great, after all, he was 6'5". he said, "no, i'll go get breakfast." i said, "okay. i'm going up to get a shower." the next thing i heard was a scream from his brother -- and an unconscious son. he died here, in our own home here, in my arms, with my son, john, right there with him and tayler, his girlfriend, as well, attempting to revive him, unsuccessfully, of course. >> reporter: across the nation, the number of drug overdose deaths has increased 118% since 1999, with more than 100 people dying from overdoses every day. according to the white house office of national drug control policy, those numbers represent a dramatic spike in the abuse of opioid drugs, including prescription pain killers and increasingly, heroin. >> we have more people in the united states dying of drug

related overdoses than we do motor vehicle fatalities and gunshots. and so from a public health perspective, we know that we have a huge epidemic on our hands. >> reporter: michael botticelli is acting director of the white house office, a job often known as the "drug czar." he says the vast majority of heroin users started after abusing pain medicine. >> we know that the availability of very cheap, very pure heroin, has been on our streets. we know that addiction is a progressive disorder and that people often move from one substance to another in essence to basically maintain their addiction. >> reporter: federal officials say the new heroin crisis is crossing race, age, gender and geographical lines. >> what we've seen with this, with this upsurge has really been a demographic shift. so not only do we see younger users who are using heroin, but also much more suburban and rural use. >> reporter: fredericksburg,

george washington's boyhood home, is one of the most historic small towns. but this seemingly idyllic small town has seen an explosion of heroin abuse, as 21-year-old john cizik and his girlfriend tayler beets can confirm. >> it's not surprising when you hear about people doing it. sad to say. but it's true. >> you just see it a lot in this town. like, good kids. >> you're only kidding yourself if you think it's not in your town. it's everywhere. >> reporter: toby larson is pastor of cizik's church, celebration anglican church, in fredericksburg. he says richie's death made him feel like he had failed as a pastor. >> unfortunately, we're pretty good at pastoring families that have lost people. we're pretty good at burying people. we're pretty lousy ten years earlier when problems started, and that's where you feel like, wow, where was i, where were -- was everyone when we really needed to be there?

>> reporter: cizik says in fact, larson and the entire congregation have been very supportive. but he believes many clergy don't want to acknowledge that heroin is an issue in their pews. >> they don't want to admit that prescription drugs are a problem nor do they want to admit in their congregation that there may be people who are abusing drugs, legal and illegal. no one wants to 'fess up and so it's a code of silence. and the price is more parents who bury their children, their sons and their daughters. that is the price. just like we did. >> reporter: the cizik family decided to be open about the cause of death in richie's obituary. >> we were told that this was one of the few times that it's ever been done, both by the people at the newspaper, as well as others in the field, who have said to us, "that's amazingly courageous." we said, "well, we're just being honest." >> reporter: in the wake of richie's death, cizik is

organizing a local task force to address the heroin crisis. >> we're going to contact community leaders, including law enforcement officials and others, to raise the profile on the problem so that people understand what the threat is, first of all, and then of course, what they can do about it. >> reporter: he says there is much that congregations can do. >> education. it's an emphasis on prevention and treatment. these are all agenda items that i think ought to be part of the church's role in society. >> reporter: larson says faith leaders have an obligation to embrace those who struggle with addiction. >> a lot of pastors don't want them in the congregation, or they pretend they're not there. so like with richie, it was hard to get him to church, because they feel like they shouldn't be there. so i would say welcome them. i mean, we need those people with those struggles in church, and the fact is they are there. >> reporter: botticelli says his office agrees that the faith community must be involved in anti-drug efforts.

>> we know local problems require local solutions, and what we want to do is make sure that all leaders in the community, but particularly faith leaders, are part of the solution of the problem. >> reporter: as a recovering alcoholic himself, botticelli says he knows what faith groups can bring. >> there is such a redemptive piece to recovery, and faith and spirituality has played a really pivotal role, in that recovery. we know that faith leaders can also, not only help us prevent the issue, but support people with addiction. you know, this is part of my own story, i've been in recovery for many, many years, and faith and spirituality has been part of my recovery for a long time. >> reporter: for cizik, a key priority for congregations is removing the shame that often accompanies addiction problems. >> we ought to have people who would love and care and sympathize and empathize enough to say, "my brother and my

sister, i'm with you and i will do everything i can to assist you" because love reigns, and there is no shame in this. >> reporter: cizik says the tragedy with richie has had a profound impact on his faith. >> even the ordained clergy ask themselves, "why god? why me? why my son? why this? how could this happen to me?" it deepens you. it gives you strength you never thought you had. i think it also gives you a concept of god that is different. not a god who has been silent or isn't there, but a god who at times allows us to go through pain for his purposes, and so what we're seeking is his purpose here. >> reporter: and he says he believes god has given him the grace to speak out so that other families won't have to suffer the same loss.

finally, on our calendar, the feast day of st. nicholas, whom many consider the inspiration for santa claus. and buddhists around the world observe bodhi day, commemorating the day buddha found enlightenment, according to tradition, while sitting under a bodhi tree. also, two feast days honoring the virgin mary. on monday, roman catholics observe the feast of the immaculate conception, which honors the teaching that mary was conceived without sin. and december 12th is the feast of our lady of guadalupe, which recalls the appearance of the virgin mary to an aztec peasant named juan diego in 1531. for all christians, it's the season of advent, a time of pre-christmas reflection. and for many, it's a time of celebration as well. in bethlehem, in the west bank, church leaders kicked off the season with festivities in manger square, next to the traditional birthplace of jesus. arab christians in israel also

held joyous events they hoped would bring christians, muslims and jews together in that often divided land. that's our program for now. i'm kim lawton. you can follow us on twitter and facebook, where i'd also love to connect with you on my fan page. you can watch us anytime on the pbs app for iphones and ipads. there is much more on our website, where you can also listen to or watch every program. join us at pbs.org. as we leave you, music from ecumenical patriarch bartholomew's liturgical chanters. ♪ ♪ ♪

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

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