Interview: Dan Cohen of “Alive Inside”

Posted on July 26, 2014 at 8:00 am

Dan Cohen is the gifted and passionately committed man who transforms the lives of people with dementia and other severely debilitating diseases. He is featured in the documentary “Alive Inside.” He is the founder of Music and Memory, which provides resources to help bring these programs to people with dementia.

How did you get started playing personal music for nursing home residents?

I’m a social worker by training. In 2006 I heard a journalist on the radio talking about how Ipods are everywhere. I Googled “Ipod in nursing homes” and even though there were 16,000 nursing homes in the US I couldn’t find one that was using Ipods for their residents. So I called up a nearby county-owned nursing home, and I said, “I know music is already your number one activity, you have live music, you play recorded music but what would be the added value if we were to totally personalize the music? And they said, “Sure.” So I sent them a laptop and some Ipods for the residence.

How do you personalize music for somebody who has lost so much memory that they can’t tell you a lot about who they are?

They can tell you nothing about who they are or what they like. So this is where if the family is available, we’ll speak to family. We’ll speak to friends, whoever is visiting. What did they listen to when they were young? Did they sing in choirs? Did they go to musicals? Did they play an instrument? Are there old records sitting in storage somewhere that we could look at? We really try to discover what that might be. We try for music from when they were young then we watch for their reaction to the songs. So build out a list based on their reaction to the songs.

Is it very important to personalize it to the individual’s experience?

That is exactly what is special about it, so back to Dr. Allen Power, who wrote Dementia Beyond Drugs: Changing the Culture of Care. He’s a geriatrician and a leader on how things should be in the nursing homes. He says that the typical nursing home facility is playing that 50s songs and it just becomes background noise. For the rest of us, everybody has their devices, and what do we put on? We put on what we really want to hear and that’s what we listen to.

We have that ability but these folks in nursing home are in like a digital isolation from the modern age and of course it takes technology to make this happen. But with music that is personalized, if somebody has advanced dementia and they can’t recognize their own family members and they can’t speak, if you give them music that has personal meaning for them they will awaken. Even with Alzheimers where you have short term cognition that is seriously degraded, your emotional system is very much intact. So you can say to somebody. “I’m here this is your daughter” and they do not react. But once you put on something, “God bless America,” Frank Sinatra or whatever, they will awaken literally as Henry did in the movie and start reminiscing and start being more social instead of just being in a slump and non-verbal.

One woman seems to indicate that the music connects her to memories she cannot access without it.

As you could see she had a lot of angst and it was really difficult to get through the day, and so this just allowed her to be herself, enjoy herself and that was huge for her. And that’s a massive benefit. That really changes their day. And it changes the way they interact with the family.

What kind of neurological research is being done on this kind of therapy?

There have been hundreds of studies over the last 50 years. Most of them have a really small sample size but the one study that I base this on, one piece of it, is research by Linda Gerdner on the impact of individualized music to reduce agitation. And it was so good; her research said that every one of the 16,000 nursing homes in New York should be using individualized music to reduce these agitations. But there is no money behind it, no requirement to do it so how do you do this anyway?

Dr. Concetta M. Tomaino who co-founded the institute for music and neurological research with Oliver Sacks, was with the New York State Department of Health funding in the 90s that did research on working on individuals with late stage dementia and playing music that personally related to them for an hour three days a week and repeated this three hour routine for 10 months. And after 10 months, these folks scored 25 percent better on the cognitive test. And then the neurologists who are brought in to assess by looking at these folks, how advanced the dementia was, they were unable to accurately assess how advanced the dementia was because these folks were uncharacteristically awake and alert instead of just head-down slumping.

If somebody came up with a pill and said, “After 10 months of taking this pill, your mom’s cognition is going to improve on average by 50 percent” well, it would be a multibillion-dollar blockbuster and every doctor would be prescribing it and every family would say, “I want it.” But because it’s not coming in the form of a pill, and we have medicalized our society, we are very much left with just word-of-mouth. We now have about 16,000 nursing homes and it’s just the living and hospice and home care and hospitals adult day care all using this in 45 states in eight countries. And then they see their benefits and then they tell everyone else in the community and that is how it this thing spreads because they are seeing it work.

Wisconsin rolled out 100 nursing homes with this six months ago. They are doing an 18 month study with 1500 residents with dementia. While they are waiting for their final results from this 18 month study, they already got funding approved to roll out a phase two, 150 nursing homes.

Have you been surprised at all by some of the musical choices that have had the biggest impact?

It really runs the gamut. It could be something their mom listened to when they were young and it was her song from the old country. Even though two people could be very similar in age, religion, culture and they have some overlap as a result of that, every playlist is like a fingerprint. That’s the hardest part sometimes to find that. But once you have that, you have it for this individual for the rest of your life and it will change their experience and the experience of their caregivers. My recommendation is to train all these nursing homes to have as large a playlist as possible no matter how advanced the dementia is.

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AFI Docs: Three Great Documentaries About Failures of Law Enforcement

Posted on June 20, 2014 at 8:34 am

We had a great first day at AFI Docs, the most important documentary film festival in the country. I am very proud to be a sponsor. Yesterday, we saw three of the films featuring one of this year’s key themes, failure, abuse, and over-intrusiveness of law enforcement, all followed by panel discussions with the filmmakers and those featured in the film.

“1971” is the story of a group of young anti-war protesters who broke into a field office of the FBI in Media, Pennsylvania and stole all of the documents filed there. Before Daniel Ellsberg, Julian Assange, Chelsea Manning, and Edward Snowden, these eight people, anonymous until they came forward four decades later, sent files to newspapers that revealed shocking and illegal activity at the FBI. What they uncovered led to the first-ever oversight hearings and guidelines for FBI activities. Reporter Betty Medsger, who covered the story for the Washington Post, wrote a book about it last year: The Burglary: The Discovery of J. Edgar Hoover’s Secret FBI.

“The Newburgh Sting” is the story of four men who were arrested for planning a terrorist attack on a plane and two synagogues. But the movie reveals that the man who planned and financed the operation was an FBI informant.

“The Internet’s Own Boy” is about Aaron Swartz, a brilliant, passionate young man, the co-founder of Reddit and one of the leaders of the anti-SOPA campaign, who killed himself at age 26 because he was being prosecuted for downloading scholarly journals. He was facing a 13-count indictment with the prospect of a 35 year sentence.

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Documentary Festivals

Interview: Sister Stephen, End of Life Nurse from “American Nurse”

Posted on May 21, 2014 at 8:00 am

Director Carolyn Jones told me that she learned more from Sister Stephen than anyone she has ever met. Sister Stephen is an end-of-life nurse featured in Jones’ documentary, The American Nurse. I also learned a great deal from her, even in a very brief interview.

What do you think that Carolyn Jones learned from you?

Well I think one of the things we talked about and she seem to really have some questions about is this whole thing about dying and how is it for these people at the end of their lives. What do you think is out there for them after they pass away? What are some of your beliefs about that? We talked about that and I think she saw also just being here how our residents really die with dignity and with the peace and the joy and the love surrounding them. That really that’s the way it should be if they all they pass on and I think that that was impressive. It wasn’t a negative experience for her at all.

She said you really bring the entire life cycle into the facility. Tell me why that’s important.

We’re so very fortunate that we are able to do that. We have animals here, we have children here. So there’s not the concept of when you go to the nursing home you’re just gonna sit and rot and die, nobody is gonna care about you and there is no life. I do believe that there is a lot of life here and that we do the best we can to make their last days feel full of life. Having animals and the children around, there is always something going on. We have grandchildren here all the time. Many of our residents are from rural areas and so they get to participate in feeding baby goats or going on hay rides. We do a lot of outings with them. There are children who come here from respite care to interact with them. They bring the residents outside, they bring the animals in to them, they play games with them. So it’s really not just sitting some place and meditating, they’re really involved and I think they feel that. We used to do a lot more activities in the evening, but by evening they want to just rest because their days are full, and they really want to participate in all of that.

What have you learnt from working with people at the end of their lives about the fears and regrets that they are experiencing.

One of my favorite parts of my nursing career is to be with residents at the end of life. One of them was quite a bit younger, he was a hospice resident and he had a battle with alcoholism and never believed in God. At the very end of his life, he did not want us to pray with him. He did say, “I deserve what I’m going to get.” It was kind of sad but we still tried telling him no matter what God loves you and He’s the Father, he’s the Good Shepherd, He’ll call you by name. I think we helped him the best we could and at least he was surrounded by love, he was surrounded by the spirit of God. I really believe that and the rest is up to God and him at that time. Most of our other residents are very ready to die, they’ve lived a full life and most of them are faith-built people and when they get to that age it is like, “I’m ready, let the Lord come and take me, the Lord can come and take me anytime, I’m ready.” It’s not the same when you’re taking care of someone that’s young and have a family. A very few of our people expressed regrets to me, very few. The big thing is the population we work with here is in a rural community I’m sure is different than somebody in a big city that has loss of contact with their children and they do feel alone and maybe part of the loss of contact with their family is something that they contributed to and they may have regrets but most of our people their families are close, they’re here with them when they are dying and in my experience you do not see a lot of that.

Even though the person who is dying may be ready, sometimes the family is not ready.

Exactly, exactly. I’ve gone through it twice with my own parents. They both died here. Both of them had dementia. My father was 71, my mother was 80, so he was a little bit younger. One of the things that was so helpful for me when my mother and dad were dying, and me being a nurse in geriatrics and long term care and seeing all of the many residents that have passed and work with families, I had kind of a difficult time at that point, being sure I was making the right decisions. My nurses were there to support me and help me. So that is what I try to be for the families. We sit down with them and it’s not always just me it’s often our social worker and our team that help them work that through. “What would your mom or dad really want?” Well they don’t want to be on life support. And are the decisions we are making what your parent or loved one would like or is it what you want to do because of your own guilt or comfort or whatever it might be? And it’s ok to let them go, that’s what they wanted. It’s ok not to send them to the hospital and pump IV’s and antibiotics if they are really ready and it’s nothing we can help…they’re not going to get better, they’re just going to be in discomfort.

What changes in the way we do health care in this country would be most beneficial to your work?

This sounds really, really kind of materialistic but I think with the elderly, I think reimbursement is a big issue. There’s still many more things that we would like to be able to do for our residents and have more time for them especially at that time with the families and reimbursement is a big issue. It’s a big issue on who we can actually take care of which is unfortunate. When we were a bigger congregation and we had most of our sisters we never looked at what the financial situation was unfortunately now we have to and that’s very bothersome to most of us.

Medicaid reimbursement is horrible and there’s some people you’d really like to help out but you can only do so much of that or you’re gonna sink. That’s one thing, the other thing I really think are some of the regular regulatory situation. And that’s getting better, I have to say it’ getting better but before when residents were at the end of life and I have to call the doctor regardless of what is happening or what the wishes are, you’ve got to call the doctor and many times if you get an on call physician and it’s like, “I’m not going to do anything unless you send them to the hospital.” They need to be evaluated and, they’re afraid of a lawsuit. Do we really have to be putting them through CAT scans and MRIs to save our butts? It’s not really for the betterment of the residents. It’s probably to save our butts or because of the regulatory issues.

Do you have a favorite bible verse that you like to share with people as they approach the end of their life?

One of them is The Good Shepherd. “I am the good shepherd and I know my sheep and I call each of them by name.” And I really feel, and I said to a women that was dying last night when I prayed with her and I said, it happened to be Good Shepherd Sunday in our church and I said, “Jesus said I’m the good shepherd, I know my sheep, my sheep know me and He will call you by name.” He will call you by name. And I guess that’s one of my very, very favorites.

What was it like to see the film about your work?

When you see the movie on big screen, I was telling my administrator about it this morning, she had tears in her eyes and I had tears in my eyes. It is phenomenal; it just really restores your hope. Sometimes you get in a little bit discouraged because there’s a staffing issue, there’s a financial issue, there’s a regulatory issue and sometimes you wonder what happened to what we really got into nursing for? And you see this and it just like restores your hope. Oh yeah, but there’s a lot we can do, there is many ways we can still serve.

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Interview

Interview: Carolyn Jones of “American Nurse”

Posted on May 19, 2014 at 8:00 am

“American Nurse” is a deeply moving documentary about the men and women who are, as the bumper sticker says, “patient people.” The film explores aging, war, poverty, and prisons through the work and lives of nurses. Jason Short drives up a rugged creek to reach a home-bound cancer patient in Appalachia. Tonia Faust runs a prison hospice program where inmates serving life sentences care for their fellow inmates as they’re dying. Naomi Cross coaches an ovarian cancer survivor through the Caesarean delivery of her son. Sister Stephen, a nun, runs a nursing home filled with goats, sheep, llamas and chickens, where the entire nursing staff comes together to sing for a dying resident. And Brian McMillion, an Army veteran and former medic, rehabilitates wounded soldiers returning from war. This film will touch, uplift, and inspire you. It was a great pleasure to speak with writer/director Carolyn Jones. I also spoke to Sister Stephen, and that interview will be published later this week.

Did this project start as a book?

Yes, it began as a book. I’ve actually published a number of books. And Living Proof: Courage in the Face of AIDS is probably the most similar for me kind of emotionally to this one, more so than any other project. I’ve really spent my career taking pictures and telling stories of people that I think are admirable, that I think we can learn something from, that we can be inspired by. I’m always eager to shine a light on those stories. So I was asked to do a book that celebrates nurses back in the end of 2011 by a global health care company came to me. They wanted to sponsor a project that would be a photo-journalistic study of nurses all across America and show the best nurses, meet the best nurses. It was a perfect sponsorship for someone like me. They had absolutely no editorial control and so it was kind of like a PBS sponsorship where they would just support the project and get behind what I was doing. I think they knew what kind of work I like to do so it was a really great match. Anyway it started off that way and I have to say as I travelled across the country my mind was completely transformed by the over one hundred nurses that I had the chance to photograph and interview. By the time I was two months into the project I knew this was an extraordinarily special group of people that I was going to want to get to know.

They’re really dealing everyday with this critical balance between being very caring and compassionate and yet holding on to some kind of sense of themselves where they don’t get washed away in it.

And that’s a very, very fine line to walk. I had no idea what nurses do. I mean zip! I had gone through chemotherapy with breast cancer and my nurse really got me through that on a personal level so I knew what that kind of nurse does. But I really knew nothing about the diversity and the depths of knowledge that nurses have and all the different things that they deal with so when that lid got blown off I was really struck. My first feeling was “Oh good heavens they’re all saints!’ and I honestly would talk to someone and just think, “You are just from a different planet than I am.” And it got very interesting: “Are you born like this? Are you born to be caring for your fellow man and completely non-judgmental?” They seemed to me, to be people that were just on a higher plane than the rest of us.

And then I kind of got comfortable and caught my stride and I realized that a lot of the qualities that nurses have are qualities that I believe as human beings are innate within us. I believe we will care for our neighbor for the most part and I believe we will help one another given a certain set of circumstances. So I started to get a little bit comfortable with it. Maybe somewhere within me I had some of the qualities that let me inhabit the same earth that they do. And then by the end of the project I was convinced they were saints and decided that they have a completely different DNA structure than I do! And I will never be anything like them, they’re incredible. Everything I want to be, everything that I think matters during life and at the end of life are things they think about and act upon everyday and just to be in their presence makes you a better human being.

Do you think that we as a culture do enough to support them, particularly with regard to the way that we structure health care?

No! I mean, not even close.

We’re so far off from understanding what nurses do and how they can contribute. We haven’t even begun to scratch the surface. We have got this group of people in this country that are non-political, can’t be bought, they see us holistically, they know how we suffer, they know what makes us healthy, they know where we find joy, they know how to make the hospitals run smoother, they know the full effect of war on our young men and women coming back from fighting, they know what poverty looks like, they know what working in the coal mines look like, they know what end of life is. They should be a part of every conversation, there should be always a nurse sitting at the table to remind us whatever choice we’re making, whether it’s about health care, going to war, food stamps, closing down a school, I don’t care what it is, they can tell us what effect this is going to have on our health and ultimately on our children.

And it’s critical that we stop and listen to them because we don’t have another group of people with this incredible treasure chest of knowledge. We don’t have them; there isn’t anybody else that we can turn to that is as, dare I say, pure and straight forward and non-judgmental and non-political as this group. They are capable of great things because they do have something innate that they are born with that make them different than the rest of us. But they are educated constantly to be non-judgmental, to look at things at face value, to accept everybody and try to understand the cause of someone’s behavior rather than just react to it. And it’s absolutely invaluable and I think this country needs them desperately and doctors are great, this is not a project that is trying to say nurses are great and doctors aren’t. That’s not my message at all.

We don’t know many things about our nurses and “Nurse Jackie” just doesn’t cut it. I’m a huge fan of Edie Falco. She’s brilliant and I wish she had lent herself to something else because it did a great disservice to nurses. I haven’t met a nurse in the last three years that had anything good to say about that. It’s not who they are. And I was lucky enough to meet some of the finest in this country.

How did you find the nurses you followed in the film?

First we would settle on a topic like returning war veterans and what the military had to say about what those women and men were facing. And so we went to the place in America that had more returning war veterans from Iraq and Afghanistan than any other place in the country. That was the VA Hospital in San Diego. Then we went to that hospital and asked them to nominate a few nurses that not only can speak to this issue but also represent the hospital really well, that are like the finest nurses in the industry. So that’s the way we functioned all across the country. We were able to meet nurses that were nominated by their peers and by their supervisors, and all of them are kind of the best of the nurses in that particular facility or place where we were. And so I say that because I’m not trying to say that all nurses are without fault either, they’re human just like the rest of us. But there are more great nurses than any other pocket of a profession that I have certainly encountered in my life and I’ve been interviewing and meeting people for over 25 years. This is an extraordinary group.

It reminds me a little bit of documentaries like “Twenty Feet from Stardom” or “Only The Strong Survive,” where we turn our focus to the people at the side and not the ones that usually get the leading role. Their job is to help other people.

I happen to love stories like that because you find the richness in life there. And you can do a deep dive in and find out makes things work and I love that. But I think in this case in the process of uncovering that I discovered that there is a reason that they don’t have a loud enough voice right now. We don’t know what they do, we have this preconceived notion of what nurses do and it involves holding hands and taking your temperature, and caring for people and being empathetic and all of those things.

We don’t realize how smart they are; we don’t realize the kind of education it takes to become a nurse and we don’t realize how they continue to educate themselves. I heard this so many times, they’ll get a patient who…it could be anything, a burn victim that is hurt in a different way that they didn’t encounter before. They dig in and find out how to help that person. And they get more certifications to be able to help the next person who is dealing with the same thing. That’s just the way their minds work. That’s why there are so many darn letters after all of their names. They have like this long list of number of letters, all of them. Half the time I couldn’t keep straight to who have what but that’s because they are so well educated and they continue to educate themselves because they’re driven by taking the knowledge that they had from the person that they just cared for and using it for the next person. And it’s remarkable.

And what do they do to keep from not falling apart over the tragedies they see around them all the time?

I was thinking, “Do you all get in your cars and drive for 45 minutes and sing Dionne Warwick songs or something to let it go?” But they all do different things. So for some of them there are groups of their colleagues in the hospitals, so there might be something that happens and they’re able to meet right after someone has died, and they can talk about it and kind of get beyond the moment by finding strength in others. Some of them actually do get in their cars and cry or sing or just try very hard to leave that moment behind them and drive home and then walk in the front door, take of their scrubs and make dinner for their families. That just blows my mind on so many levels, it’s incredible! And some of them aren’t able to cope, frankly. Some of them have a difficult time having personal relationships because it’s so hard to talk. Nobody wants to hear that stuff. Nobody wants to know what your day was like.

Naomi Cross is a Labor and Delivery nurse at John Hopkins and is also a Bereavement Counselor. So she’s the one helping moms when their babies don’t live. She’s married to this guy named Jason Cross. We should clone him because he’s so supportive and so aware of how important the work that Naomi does is. And he cooks and he’s there and that’s the way they solve it. They have a young boy who is just adorable, he’s in the film as well, and they kind of have found this balance in life so that she can get in the car and go home and walk through the door and leave it outside most of the time and just enjoy and build herself back up with the love of her family.

But it’s not easy and it takes a very, very special person to be married to a nurse because of what they go through in a day. The film takes us over the threshold into the patient’s room so that we can see them caring for other people. You actually see a baby come into this world and you see a prison nurse attending to a nasty wound on a man’s leg and you get a little glimpse, a little understanding of how dramatic and profound these moments can be that nurses go through. And a lot of the nurses who have seen the film have said things like: “I can’t wait to show my sister and my mother and my cousin or even my husband or my wife because now they’ll get it. Because there isn’t any way for us to understand. They put their hands inside our bodies, they deal with gruesome things and they’re fearless.

I’m going to speak to one of the nurses in the film, Sister Stephen.

Oh my gosh! Sister Stephen transformed me, I want to you to know. There is more life at Villa Lerado than any place I’ve been. I live in Manhattan and I think we very often spend time in the here and now. Oh come on…we all do right? We are very focus on right now and one of the things I think is wrong with the way we live, we’re so trying to hang on to our youth we’ve forgotten that there is a cycle to life, that we’re born and we die. And we try to stay young for so long.

Sister Stephen has the full cycle of life at Villa Laretto. She’s got all these animals that she uses as animal therapy. I’m not just talking about a couple of ducks. She’s got llamas and woodpeckers and monkeys and these animals all give birth and she brings those baby animals either into the facility herself and puts those little babies into the laps of the elderly or she puts the elderly in wheelchairs and takes them out to witness all those baby animals on the farm. And then on top of that this woman is a genius, she also brings in respite kids from the town, kids that have all kinds of different problems either developmental problems or problems at home. She brings them in and they help her care for the animals. And those young people relate to the elderly in such an extraordinarily beautiful way.

We need to be reminded that our time here is so precious. She reminded me of that. I think of her every day. She’s reminded me that we are born, it beautiful here, we are lucky to be here. We need to cherish it, we need to make the most of our time and then we leave. And that can either be a beautiful moment or a difficult moment but that’s the way it’s going to be for all of us. And I think she lives that every day. She taught me more in the amount of time that I have known her probably than anyone else in my life and she’s a very, very special human being.

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Directors Documentary Interview

Interview: “Fed Up’s” Laurie David and Stephanie Soechtig

Posted on May 12, 2014 at 3:59 pm

Oscar-winning producer Laurie David is back with an even more inconvenient truth: our food is killing us and the government is powerless to stop food companies from making it worse. I spoke to David and director Stephanie Soechtig about the film.

I want to start with the end — to me the most interesting part of the movie was what I call the Citizens United problem,orporate involvement in making policy decisions about health and nutrition and disclosure. One of the most devastating revelations of the film was the story about the way the industry softened findings of a World Health Organization report on the impact of sugar on health.

SS: What’s interesting about the WHO report was just how hard it was to actually find that story. Peter Jennings, who appears in a clip, was the only American newscaster who covered that. I found it initially, in a paper from the UK, and I contacted the head of the World Health Organization at the time and asked him more of the story but I couldn’t find anything in the press on this other than that one Peter Jennings clip. We really had to dig hard to unearth that and it really didn’t get any mainstream press attention in the US. And the headline in the UK paper was “George Bush is beholden to sugar barons and he is jeopardizing the future of American children.” It was an incredibly damning letter the WHO had sent to Tommy Thompson at the time. I’m a journalist by trade and had I seen that, it would have been my lead story. It was a really damning letter and it got no coverage. So it was just interesting to see just how the media was a bit complacent in what happened as well.

And what do you think is the reason for that? Do you think it’s because of their advertisers? Do you think that they sensed that there isn’t an interest in this as an issue?

SS: Yeah, a hundred percent. Look at the recent effort of the voluntary guideline to stop marketing to kids. Some of the people that were up there lobbying against it were some of the major networks and you saw Viacom and Nickelodeon and all of them up there because they are reliant on the advertising dollars. So everyone has a dog in this fight it seems.

LD: No one cares about the health of the American public.

Another area where that came up was the lack of transparency around sugar on labeling of food. What went into the decision not to have a percentage displayed?

LD: I think that the industry has been fighting that from day one. I don’t think that anybody even tries to do it anymore. It’s all part of the conventional labeling, completely accepted. That’s got to be some serious under the table stuff that’s gone on to keep that off the label. But you know what’s funny about it? What the truthful daily recommended amount of sugar that you need per day is? It is zero, zero! You can imagine how damning that number would be for all these products!

That chart that you show about the amount of sugar in our food is really shocking. Every morning I take calcium vitamins and because of the movie I looked at the sugar content and I was shocked! As soon as I’m done with this jar I am going to try to find some calcium that doesn’t have sugar in it.

SS: Exactly! And that is the whole point of the movie. We want to level the playing field for people. It’s heartbreaking that families think they are doing the right thing, think they are making the healthier choice and what they are eating is making them sick. It’s not right! And just look at yogurt as a great example right now. Yogurt is marketed to death as a healthy choice for breakfast and if you look at the sugar content of most of these fruit filled yogurts, honestly it’s a dessert.

The other thing that surprised me was about the takeover of full lunchrooms by fast food companies. Is that based on lobbying at the local level or is that a purely economic decision — where did that come from?

SS: We met with a principal and she was just as distraught as anyone that her student body was able to buy diet soda and candy bars for breakfast. And she felt that her hands were tied as well too. She said, “There’s nothing I can do about it.” And I think everyone just feels a little hogtied about the policies. What is missing is a common sense approach. We all know that tomato paste isn’t a vegetable and that french fries aren’t vegetables. And I think that we were all really shocked when we saw the footage that these kids were sending us back that they had slushy machines and McDonalds in their cafeteria.

How did you find the kids that struggling with obesity and their and the families?

SS: We spent a little over a half a year just calling schools, churches, synagogues, different hospitals, doctors that specialized in diabetes and obesity and we’d say, “We’re looking for some families that could give us sort of a look into their world. What was making it so hard to make good food choices?” And it was incredibly difficult to find people. It was incredibly labor-intensive. But it’s incredibly courageous of the families. You saw how candid they were with. It all just kind of fell into place I think the way it was supposed to because we found these incredible families who really opened our eyes to things that we had no idea were happening.

And yet they didn’t really make much progress.

SS: We weren’t making a reality show. This wasn’t “The Biggest Loser.” We didn’t send trainers to them. This was asking them to show us what was happening in their lives. They were our field reporters on the ground showing us life on the front lines. So how could they make progress? What they showed us is how much misinformation is out there. And the answers to what is happening is this film. So I think the real story now is to see what happens once they’ve seen the film, what progress they make then.

LD: You saw the end of the movie that Tina and Brady started cooking real food and they changed their lifestyle. Tina has lost 100 pounds. Of course, Brady has had a tougher time. It’s the entire food carnival environment we are living in. So Brady went on to get a job at Bojangles and his school asked him to sell candy bars to raise money. Te second he left his house, this is what he is dealing with so it is not a big surprise he gained the weight back.

SS: I don’t know why are so shocked that his school asked him to sell candy bars. I mean, there are Girl Scouts selling cookies right on every corner. It’s crazy.

And the ads for these foods are always saying, “You deserve this,” or “This is going to help you get your energy back.”

LD: “Open happiness.”

SS: And happiness is used as a marketing tool for everything! I mean it’s really outrageous, it’s outrageous!

What kind of research material are you developing for people to have to follow up and learn more?

SS: We have a great website. We have some school curriculum on there already and a discussion guide. And one of the goals of the movie to get our 60 minute version of it into every school in the country. We made the movie with kids in mind, we want kids to see movie and be empowered by it. Another thing we are doing and it’s never been done before, we have dubbed a Spanish language version of the movie which is going to be released on May 16th in certain markets. So I think we’re doing as much as we can and we are hoping that the single most important thing is for people to come out to the theaters and see this film.

And I have to say, the things I think we put out are so powerful. I mean, look at our poster. I think the poster really breaks through the haze of media stuff out there. I think it is iconic. It was one of the most popular Instagrams the week it came out. We have an incredibly powerful trailer which kids are posting on their Facebook page and helping us get the word out so I think that we’ve got lots of ambassadors and social media support so I hope we are getting the word out.

LD: I think the film really unfolds like a murder mystery thriller. It is not a dry educational documentary. It really plays like a film more than a typical documentary.

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