262: Miracle Cures
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Prologue
Ira Glass
Back in the '60s, when Stephen was a young surgeon in Boston, a guy came in with abdominal pain, which turned out to be his gallbladder. He needed an operation. But the guy told Stephen this story of how, 12 years before, he'd come into that exact same hospital and had had cancer. It started in his stomach and had spread to his belly. The doctors opened him up.
Dr. Stephen Rosenberg
And the surgeons had seen cancer that had spread into his liver and throughout his abdomen. They could do nothing and they just closed the abdomen and sent him home to die. And yet, here he was 12 years later, seeming quite healthy.
Ira Glass
Stephen was skeptical. Cancer usually does not just go away with no treatment at all. The guy must have gotten the story wrong in some way.
Dr. Stephen Rosenberg
Then I went back to the patient's chart and I read, in fact, the pathology reports. And I was still skeptical. So then I went back and actually pulled out the slides to be sure in fact he had had the cancer. And we reviewed the slides, and in fact, it was a cancer. And then I made sure it was in fact the same patient. And in fact, it was.
Ira Glass
And then when you opened him up, were you fully expecting you were going to still find some cancer?
Dr. Stephen Rosenberg
Well, it was 12 years later and I didn't know what to expect. I operated on him, took out his gallbladder, examined the inside of his abdomen, and all of the cancer that had been present 12 years earlier had completely disappeared in the absence of any treatment.
It appeared that this patient's body had somehow rejected his cancer. This patient set me on a quest for the next 25 years to try to explain how such a thing could happen.
Ira Glass
And in fact, this doctor, Stephen Rosenberg, is now a pioneer in inventing immunotherapies based on that research at The National Cancer Institute, where he's chief of surgery. Now, it's interesting, you can find the story about this early case of his all over the place. It circulates on the internet, it shows up in books about people spontaneously recovering from cancer, and he is not happy about that. He kind of hates it, in fact. Because he says that this story gives people false hope. In his career, he's seen maybe 10,000 cancer patients, and this is the only case like this that he has ever encountered. It is just fantastically rare. And it is so easy, he says, for patients to get their hopes up. How could anybody not get their hopes up? And Dr. Rosenberg has seen lots of patients taken advantage of by people who play on this dream of a spontaneous recovery.
Dr. Stephen Rosenberg
People who prey on cancer patients, offering quack treatments, often take advantage of cancer patients who are desperate. And I've seen entire families devastated as their entire resources are devoted to treatments of no value.
Ira Glass
Still, hope is important. So what do you do when people place hope in things that probably are not going to work? Well, lots of times his patients come to him asking about vitamins, and herbs, and visualization, and other treatments that have not been proven by science. And if the treatments aren't actually going to hurt them in any way, he says, sure, do it. Studies have shown that patients who are embracing life, feeling more hopeful, feeling more in control of their situation, do better, respond better to medical treatment of all kinds. There are real health effects to hope itself.
And so, today on our radio show, we have two stories of hope, the power of hope, hope in some things that are not very likely, I have to say. We have stories about the great side of that and the maybe less great side of that. From WBEZ Chicago, it's This American Life, distributed by Public Radio International. I'm Ira Glass.
Our program today in two acts. Act One, a son tries to help his mom in a faraway place defy the laws of medical science. Act Two, a daughter tries to help her dad by going to a faraway place to defy the laws of the United States of America. Stay with us.
Act One: Changing The Channeler
Ira Glass
Act One, Changing the Channeler.
You may remember Davy Rothbart. He's been on our show a few times. At one point, he came onto the show to tell the story of his mother, Barbara, who's a suburban mom in Ann Arbor, Michigan, who seems like lots of funny, smart moms that you have met in your life, except that she channels an ancient being named Aaron. Aaron is a Buddhist monk. Aaron gives advice along Buddhist lines to people who come into the house. He showed up in Barbara's life-- I think that's the right way to say that. He showed up in Barbara's life years ago. Barbara is also deaf. She hasn't been able to hear anything for decades. And a while back, she heard about this healer in Brazil, a man who goes by the name Joao de Deus, John of God, who, people said, could make the deaf hear. And she wanted to go down and see if he could help her out.
Davy is really close to her and he agreed to along.
Davy Rothbart
She was very hopeful about it. She wouldn't say, I'm going to come back, I'm going to be hearing. But I could just tell that, in the months leading up to our trip, she was getting more and more excited about it. She started just dropping little things in the conversation, like one night, me and her were talking about-- my little brother has a new album coming out.
Ira Glass
Your brother has a band?
Davy Rothbart
Yeah, he's a musician. So my mom, she'd give me a little, funny smile, and she'd just say, I can't wait to hear it. I got excited, too. I talked to her about this on tape.
Barbara
I want to hear Peter singing. I want to hear my mother's voice, voices of the people I love. Dad's voice, which I have heard, of course, but will not remember.
Ira Glass
Oh, stop the tape for a second, Davy. We should say, your mom is deaf, but she can talk. And she reads lips, so whenever people hear you on these tapes you're talking really slowly and distinctly so she can read your lips, and you're also signing to her a lot of times, too.
Davy Rothbart
Right, to exaggerate the space between words.
Barbara
I want to hear some of my favorite music. Back at Thanksgiving, you asked me what songs I remembered, and all of my music is from the '60s. I want to hear what's happened to music in 40 years.
Davy Rothbart
Would you like to hear some 50 Cent?
Barbara
Some?
Davy Rothbart
50 Cent?
Barbara
Want to hear some 50 Cent? Do you mean two quarters clinging together?
Davy Rothbart
No, the rapper 50 Cent.
Barbara
I've never heard of the rapper 50 Cent. I want to hear everything.
Davy Rothbart
Back when my mom could hear, she loved listening to music. Now she still sings sometimes.
Ira Glass
She still sings sometimes?
Davy Rothbart
Yeah, it kind of sounds weird. Well, it sounds interesting.
Ira Glass
Because she can't hear herself at all, right?
Davy Rothbart
Right, she has 0% hearing.
Barbara
A favorite song of mine that I love to hear is "Amazing Grace." Do you know that? I can't sing it on tune. [SINGING] Amazing grace, how sweet the sound, that saved a soul like me. I once was lost, but now I'm found, was blind but now I see. [END SINGING] This song, of course, far predates my deafness, but I learned it just before I lost my hearing.
Davy Rothbart
When you can hear again, you will be able to listen to the tapes of yourself singing.
Barbara
I'd say, ahhh.
Ira Glass
So Davy, before you guys went to Brazil, what did you think was going to happen? Did you view this as, oh, my mom is going to be disappointed? Was there a part of you where you thought that she might get a miracle cure?
Davy Rothbart
You know what? I had no idea. Who knows? And I think my mom's excitement got me excited about it, too. So I had heard stories from her friend who had been down there and had seen Joao heal deaf people.
Ira Glass
Wait, and your mom's friend actually saw this happen with her own eyes?
Davy Rothbart
Yeah. So I was also nervous because sometimes it was sort of heartbreaking because I would see her begin to get so excited about it.
Ira Glass
So Davy, where are we now?
Davy Rothbart
Now we're down in Brazil. It took us 31 hours to get there from Michigan. It's in a tiny town in the middle of Brazil called Abadiania. It's just, really, like a little village with a few farms and some houses, a little factory where they make bricks. And you know, a lot of sick people wandering around.
Ira Glass
And this is the sort of place where the town's main industry is healing tourists?
Davy Rothbart
Yeah, it's like a one-company town, a miracle town. People have come here on buses from all over Brazil. They'll drive for 36 hours just to visit for a few hours with Joao and then go home. And everywhere you go, people are telling these miracle stories. There's this guy, Marcel, who owns a little pizza restaurant. He actually came there because his dad had been sick.
Man
I have a friend, Alessandro. He lives in Abadiania, and I show you when he walk around. He had multiple sclerosis. That's the right name?
Davy Rothbart
Yeah, sclerosis.
Man
OK, he could not walk, problem to move, even to talk. Only his mother could understand him. He came here today, every day you can see he go into university, walking, he play volleyball with the people around.
Davy Rothbart
I figured, while I'm going with my mom to help her out, see if she can get her hearing back, I'd try to get healed, too. I have this skin thing, it's called psoriasis. And basically, it's like your skin gets kind of all red and scaly looking. And I have it on my chest and my back and part of my scalp.
Ira Glass
We should say to people who are trying to picture this that we're not talking about like, you just have dry skin, or red skin, that it's way more serious than that.
Davy Rothbart
Yeah, there's an arthritis that is associated with psoriasis, which I actually have. And it makes your joints and everything terribly painful. They swell up. I've had times when I couldn't walk. And that's scary. So I thought I would, you know, why not see if Joao could heal me, too.
Woman
Good morning. On behalf of [? Medio ?] Joao Teixeira de Faria, welcome you all to his spiritual center. All belief systems are welcome here.
Ira Glass
So where are we now?
Davy Rothbart
We're in line at the Casa. The Casa is the place where Joao does his healing. It's like a little healing center, compound. And this is the first time we're going to meet him, and then see if he can cure us. It's just early in the morning. We're in the middle of a crowd of, like, 300 or 400 people. And most of them are Brazilian, but about a quarter of us are foreigners from the US and, really, all over the world. Everyone's dressed in white, head to toe. It's like the Casa dress code. You've got to dress in white. And it's funny, they've got Enya bumping over the PA system.
Basically, you have all these people just waiting out in this grand hall, waiting to go before Joao. It just feels like a gigantic low-cost medical clinic.
Woman
Everybody in this first line, please step back a little bit so that we can form the line. It's about 10 deep right now.
Davy Rothbart
There's just sick people everywhere.
Ira Glass
So Davy, so I know that your mom hired a translator and a guide for you guys. Is she there with you during this part?
Davy Rothbart
Yeah, she's right there. Her name is Heather. While we were waiting there, she told us how Joao had come to be Joao. It wasn't going through medical school.
Heather
He has a second grade education. And when he was 16 years old, he was coming out of a town called Campo Grande in Mato Grosso. And he'd just lost his job as a tailor's assistant. And he was hungry and tired and lonely and on his way home.
Davy Rothbart
And basically, while he was there on the road, what happened to Joao was he was visited by the spirit of St. Rita. And she gave him just, like, this unfamiliar address. She told him, go back into town, knock on the door at this house.
Heather
They said, "Are you Joao?" He said, "I'm Joao, I was told to come here. They said, "We've been waiting for you."
The next thing he remembered is coming out of a faint. And he was very apologetic and said, "Gosh, I must have been so hungry that I fainted. I'm so sorry." And they said, "Oh, no. You incorporated King Solomon and you've just healed over 50 people.
Ira Glass
You've incorporated King Solomon. What does that mean?
Davy Rothbart
Incorporating, it's like channeling, except instead of just channeling the voice of a spirit, basically your whole body becomes completely possessed. So the idea is that there's 37 of the world's greatest healers of all time, and they just kind of take turns entering his body and performing these works of healing. They call these guys the entities.
Ira Glass
And are these healers that we would have heard of? Are these, like, famous people?
Davy Rothbart
Oh, there's a few all stars on this roster. You know, there's St. Ignatius and St. Francis, King Solomon. There's a guy named Dr. Octavio Cruz, he's like the father of Brazilian medicine. Each of these spirits has a different personality. In fact, the music that they play over the loudspeakers there, each one has a separate musical preference. So depending on which entity Joao is channeling, they'll play whatever music they most like.
Ira Glass
OK, so you guys are standing there in this big room with hundreds of people in this line. How long does that last?
Davy Rothbart
About a couple of hours. And then Heather says it's our turn. She gets me and my mom into the right line and kind of sends us through to see Joao.
Heather
Just keep coming through. I'll meet you inside.
Davy Rothbart
First, we go through a couple of rooms where there's just a bunch of people meditating in chairs with their eyes closed. And then, finally, you can see him just way up at the front of the room. He sits in a big, wooden chair. It's almost like a throne. And he's got a beige shirt on, hospital scrubs. He's about 50 years old maybe, dark, wavy hair, round face, glasses. He's sitting there and he's got, like, a ballpoint pen and just a bunch of little slips of paper on his lap. And as each person goes in front of him for a few seconds, he does a real quick little scribble and just gives them the scrap of paper. It's almost like some old baseball player giving autographs at a baseball card show.
So when we get up to see him, Heather explains my mom's deafness to him and she tells him about my psoriasis to Joao in Portuguese.
Heather
[SPEAKING PORTUGUESE]
Joao De Deus
[SPEAKING PORTUGUESE]
Davy Rothbart
To me, this is like the moment of truth maybe. But Joao barely looks at us. I mean, he just kind of nods and gives us one of those papers with this crazy squiggle on it. And Heather tells us it's our prescription. She says that Joao, he doesn't have to actually examine us because the entities have just been checking us out as we were approaching him in line. And she points me and my mom to a room where everyone's meditating and just says, you know, go over there, sit in current. They call it sitting in current.
Heather
Go sit in the other current room. You stay here till the end. Hold on to that. That's your medicine. I'll tell you later.
Ira Glass
Current means like the current, the electrical current that comes from all the entities?
Davy Rothbart
Well, when you sit in current, it's like this, everyone that's there meditating is sort of conducting this powerful, spiritual current. And that gives energy to Joao and the entities while they're doing the healing.
So you sit in this current room and you're just supposed to keep your eyes closed, make sure not to cross your arms or your legs because that disrupts the flow of energy. Most people in there are sitting pretty still. A couple people have fallen asleep. There's people that are making this weird, spooky, hissing sound. It sounds like this.
[HISSING SOUND]
So after like an hour of that, we all went outside and Heather told us to go the pharmacy window. Behind the counter there, it's just a kid sitting on a little stool, probably, like, 15-year-old kid with a Casa t-shirt.
So me and my mom, we give this kid our pieces of paper with like Joao's scribble on it. And he really doesn't even look at the paper. He just takes them from us. He reaches down into this cardboard box at his feet and he pulls out some pill bottles and just gives us the pills. They're like these little Joao brand pills. And then I see him give the same pills to the guy behind me, and the person behind that guy. We all get the same exact pill bottles.
Heather
It's got a [? jaguar ?] on the back.
Davy Rothbart
Heather tells us that these pills, they're just a passion flower extract, but the entities spike each capsule with a special energy.
Heather
It's a vehicle to carry the energy that is imbued into the herbs for that particular person. Unique for you, so you can't give it your sister, your brother. It is for your condition.
Davy Rothbart
So Heather tells us what Joao's treatment plans are for me and my mom. Me and my mom are scheduled for surgery.
Ira Glass
Wait, wait. Surgery? You mean like, surgery surgery? Like, they cut into you?
Davy Rothbart
Well, no, it's psychic surgery. You're told this is how it works. Basically, you just sit in this room with 20 other people in a chair and the entities perform surgery on you. You just can't see it happen. I mean, Joao is not even in the room.
Ira Glass
And you get the surgery, too?
Davy Rothbart
Yeah, I get surgery, too. I mean, I sit next to my mom and we have the surgery together.
I'm sitting here and my mom is next to me and she's breathing. I can feel her breathing really slowly and sort of intensely. And I'm not feeling anything, but I don't know. I'm hoping she's experiencing something. It seems strange now, but I was so kind of disoriented. And just everything was so weird. I never really felt like I had steady footing. I didn't know what was going on. I don't know, I felt like maybe it could all be real.
Heather, she warns us. She says, you know, don't be too active right after invisible surgery, because you can rip out the invisible sutures that the entities have just put in. She says, you've got to treat it just like you would conventional surgery. And just stay in bed. And in fact, after these invisible surgeries, we were both totally exhausted. And we went to our rooms and we just slept soundly, totally for about 24 hours.
The next morning, I wake up and I can look down and see there's been no miracle for my skin. I'm not cured. And it was really humid, so my tape recorder was sticking a little bit. So the sound's a little bit funny, but this is tape of me just kind of going down to visit my mom for the first time after the surgery.
It's the morning after surgery and I feel pretty groggy. I slept almost 24 hours straight, and I'm ravenous. I'm going to go down to breakfast and see if my mom can hear again.
Going downstairs. I hear some voices down there on breakfast. There she is. She's talking to someone. Well, she's looking at something.
Hey Mom. Mom. I'm right behind you. She doesn't see me.
Hey Mom. Mom. I'm right in your ear. Mom, can you hear me? Can you hear me? She can't hear me.
Ira Glass
OK, so clearly at this point, you probably realize like, OK, your mom didn't get her hearing back. Did they warn you that it wasn't going to be like, OK, man puts his hands on you and, kaboom, you know, that suddenly you get your hearing back? But that it might take weeks or more?
Davy Rothbart
Yeah. They said there's a whole range of possibilities. Some people are healed instantly. Some people, it takes a couple of weeks. Some people, a couple months. Some people, a couple years. But still, change will happen a little bit at a time. So I tapped her on the shoulder and I asked her if she felt any different? And she said she thought she felt like a greater sensitivity to vibration. Maybe it could be a sign that her hearing was coming back. And then she asked me how I was feeling.
Barbara
How are you feeling?
Davy Rothbart
I don't feel so great. It's either the invisible surgeries and the sutures within me, or it's the runs.
Barbara
The rest?
Davy Rothbart
The runs. The R-U-N-S.
Barbara
T-R-U-N-S. What is T-R-U-N-S?
Davy Rothbart
The runs.
Barbara
The rust?
Davy Rothbart
She's still clearly very deaf.
Announcer
Ladies and gentlemen, it's the comedy musings of Ken.
Ken
I don't tell jokes. I only channel jokes from the entities.
Davy Rothbart
This is a few days after our surgeries, and there's sort of a town talent show. I'm translating all of this into sign language for my mom. Most of us foreigners are here for several weeks, so the town's got this whole kind of summer camp feeling.
This is Ken and his doctors at home had given him a few weeks to live. He's got some kind of severe liver problem and he's supposed to die soon.
Ken
How many entities does it take to change a light bulb?
Announcer
How many?
Ken
Zero, we've already seen the light.
Davy Rothbart
So you basically do the same thing every day. Take the pills, you either see Joao, or you spend more time in that current room, the meditation room. And people are so nice. A lot of them are really down to earth. They're really cool and just really friendly. And so I am getting along with people and it's sort of powerful just to be around so many people that have cancer, AIDS, people that are really close to dying.
Ken
Why didn't the entity cross the road?
Announcer
Why?
Ken
He was already on the other side.
[LAUGHTER AND APPLAUSE]
Davy Rothbart
The problem is, everyone's telling you these miracle stories all the time, just constant miracle stories, but you don't see any miracles. People in wheelchairs are still in wheelchairs. Blind folks are still blind. They're like urban legends. And it's like they can smell my skepticism. It's like the way animals can smell fear. And to them, everything that happens, everything that goes on there proves that they're right and that these entities exist. You know, like my back was just starting to kill because you're sitting in this current room for just hours and hours on end. They told me that the pain was proof that the entities are working on me. And I was like--
Ira Glass
So in their view, is there like even room for coincidence? Or--?
Davy Rothbart
No. No, anything that happens, whatever happens, happens for a reason. And I mean, it would be one thing if they just asked me to believe or just to try to believe, but they all tried to convince me that it's based on science. Here's a couple examples.
Woman 1
Our hearts create a field of energy around our bodies. We know this now. We can measure it.
Man 1
Each of us holds a vibration, and that vibration attracts other like vibrations and affects other vibrations.
Woman 1
We also know that medium Joao has been hooked up to electrodes and that he goes down to 0 resistance. So he becomes like a lightning rod.
Woman 2
Because I'm a Capricorn, I have bad knees. And I felt them working on my knees, and I also felt them working on my elbow.
Davy Rothbart
Capricorns are known for having bad knees?
Woman 2
Yeah.
Davy Rothbart
For my mom, the longer her hearing is not coming back, the more obsessed she kind of becomes with just following every little rule of the place. Like, Heather told us we have to stock up on holy water, the holy water they have at the Casa gift shop. And it's really just a regular brand of-- it's just bottled water, but it's been blessed by the entities.
And here, me and my mom are at breakfast. And my mom catches me drinking the regular bottled water.
Barbara
You'll have to brush your teeth. Humor me and drink this.
Davy Rothbart
It's the same thing, except this one is cold.
Barbara
This has extra energy in it.
Davy Rothbart
What extra energy?
Barbara
I see the skeptical side of you coming to [UNINTELLIGIBLE], and I think that, for your skin condition, I think it would be healing for you.
Davy Rothbart
I'm having trouble a little bit with the whole program here. Why is this holy water different--?
Barbara
The entities have really given their energy into this water. They've raised the frequency vibration. And it's a different vibration of [? frequence. ?] It's a charged water, let's call it.
Davy Rothbart
If I gave you the Pepsi challenge, and put some holy water in one cup and some regular bottled water in the other cup, would you tell the difference?
Barbara
I don't know. Over a period of days of drinking one or the other, I would feel the difference. But talking about the whole program here, Davy, this is-- I know you respect me.
Davy Rothbart
I do.
Barbara
This is consistent with everything that I know and have learned in the past 15 years.
Davy Rothbart
This is the problem. My mom's trying to use my belief in channeling to get me to belief in Joao.
Ira Glass
Yeah, just to remind people of how you've talked about this in the past, your mom channels this ancient being, Aaron. And the last time you came on the show and talked about it, you described it this way. You said that, basically you faced this choice as her kid. You could decide that channeling isn't real and your mom's a little crazy. And you don't think she's crazy. She's really wonderful in so many ways. And so you sort of provisionally were thinking, OK, well, maybe this is real.
Davy Rothbart
Yeah. And I've seen the work that she does with Aaron. And I've seen how helpful it is to people.
Ira Glass
Aaron gives people advice?
Davy Rothbart
Yeah, so I've seen the good that comes out of that. But now she's upping the stakes. She's saying, if I'm going to keep believing in Aaron and that stuff, I also have to believe in Joao and the entities.
Ira Glass
So it's like you're at a kind of showdown with her?
Davy Rothbart
Yeah. And I didn't realize this was going to happen. But it's true, at home it's easy to sort of each believe what we want to believe and just, it never has to come to a head.
Ira Glass
So is there any point down there when you thought that you started to believe a little bit?
Davy Rothbart
Yeah, actually. There was one day.
Woman
All those who have surgery, please raise there hand.
Ira Glass
So what's going on now?
Davy Rothbart
We're at the Casa. We're going to see some physical surgeries.
Ira Glass
Oh, you mean like real surgeries?
Davy Rothbart
Yeah, knife.
Ira Glass
He does those, too?
Davy Rothbart
Yeah. He cuts into people. Scrapes their eyes. No anesthetic. Joao wouldn't let me record the operations, but he let me stand right there next to him while he did them.
I knew this morning that a couple of the people I'd gotten to be friends with, Gregor and Cynthia, they're from Baltimore. Gregor has MS, so he's in a wheelchair. And Cynthia has some ailments, so she wanted to get surgery, too.
Ira Glass
OK, so how's it go? You go in there with Cynthia and she's in there with him. What's he do?
Davy Rothbart
Well, she's standing there with her eyes closed and he just kind of tilts her head back a little bit. He's got this wicked-looking instrument. They call it a Kelly clamp. It's about seven inches long. It's basically a long, metal skinny scissors with a little cotton ball kind of in the pliers tip of it.
Ira Glass
OK, I can feel where this is going. Let me just warn people, this might get a little graphic. OK, continue Davy.
Davy Rothbart
He tilts her head back. He dips the point of it just kind of up her right nostril. And then he turns around and just slams it all the way in, so just all the way to the handle, straight back into her head.
Ira Glass
Oh my God.
Davy Rothbart
It was horrifying. It was the most upsetting thing I've ever seen. The room kind of started swirling around me. And everything got really silent. There's sort of like a roar fills your ears. And I just kept watching as he started kind of poking and jabbing around in there. It was like if you're trying to scrape in a jar of peanut butter to get the last little bit out.
Ira Glass
OK, and so what is she doing? Is she like screaming? Like, what's she doing?
Davy Rothbart
She's just standing there, pretty calmly. I mean, she looks maybe a little uncomfortable. But she's very calm.
Ira Glass
Then what happens?
Davy Rothbart
Well, then after 30 seconds of that, he pulls the thing out and she kind of just collapses into a chair. And they wheel her off into this sort of infirmary. And that's the last I see of her for a little while. So I go and just sit down in one of these chairs for another hour or two. I'm freaking out. Because like, I just saw something that should not be possible, that there's no way that could happen. What he just did should have killed her and it didn't. I have to say, it was an hour or two like I've never had before. And I was just completely shaken. I was just sitting there and I didn't know what to believe.
After I'd been sitting there for a couple hours, I went outside and I was standing with Gregor, her husband, who's in a wheelchair. And he was anxious about how she was and then she comes kind of skipping out, just happy as can be. Of course, she'd had her eyes closed the whole time.
Cynthia
What does the thing actually even look like, the apparatus? Is it big or is it small? I have no idea.
Davy Rothbart
It's about a seven-inch scissors, like--
Cynthia
Scissors? Now I'm getting scared.
Davy Rothbart
I don't know if it's a good thing for me to describe it to you. Honestly, he twisted it back, so it was going like almost straight back into your brain. And then he just jammed it all the way in. I mean, I thought he had killed you. I honestly did.
Ira Glass
And so did you go and tell your mom? Like, what did your mom make of it?
Davy Rothbart
She had an explanation for exactly what was happening.
Barbara
The frequency of vibration of these tools is raised so high that they simply become energy and light. Material is transmuted literally into light. And then, as the instrument withdraws the tool, he releases that energy thrust into it and it turns back into the metal that it was.
Davy Rothbart
Then I had talked to a couple doctors and it turns out there's a cavity behind the nose and it goes back a long way.
Ira Glass
Oh, so there's room for the instrument?
Davy Rothbart
Right. And your brain's surround by bone, so there's no way you can harm it or help it, for that matter, by sticking something up your nose. So really, what Joao did, in the end, isn't proof of miracles, but proof of sinus cavities.
Alexander
Some day I'm not good, some day I'm very good. It's with ups and downs. That's it.
Davy Rothbart
There's this couple, Tatiana and Ed. They were from Holland. And you saw them all the time pushing their son around the Casa in a wheelchair, Alexander. He had muscular dystrophy. And the doctors in Holland had said there was no cure, like nothing that could be done for him. Here's Tatiana.
Tatiana
You know what? The worst in this illness is that you feel helpless. You feel so very helpless. You know that this boy will die little by little every day in front of your eyes, and you can't do anything. It makes you furious. From time to time, you're furious. You're saying, why? Well, I want to do something about that. I can't just watch it happening like that. This is the only, our chance, and the last one.
Davy Rothbart
Tatiana hadn't believed in any of this stuff before Alexander got sick. But her and Ed were willing to try anything. The doctors had told them that the muscles would just deteriorate until, at age 18 or so, your heart just can no longer even beat, and he'd die. This is Alexander. He's 10.
Alexander
Well, the entities, they told us positive concentration. So we're working on that. We're doing our best.
Davy Rothbart
What's that?
Alexander
We're doing our best.
Davy Rothbart
Have they told you that you will be healed?
Alexander
Yes, they said a couple of times, he will walk. And then he said another time, you will walk very soon. What soon is for the entities, we don't know.
Davy Rothbart
To me, when I meet people like this, hoping for a miracle, it's really the only choice you have. It seems completely sane to me. It's the logical choice.
One night, one of the posadas hired an accordion player and had a little dance. And everyone was there. Maggie, she's blind, and she's dancing with Dennis. Gregor, who uses a walker at home, but he gets up and twirls for a second with Cynthia. Then he topples over again. I mean, everyone who's here, they are so joyful just being together and having hope. And whether or not you believe in the spirits and everything, it just seems like it's good for you. It improves your health to be in a beautiful place.
There was 25 people in my mom's group. No one was cured, but everyone was glad that they'd been there.
Ira Glass
Everybody, that is, but you?
Davy Rothbart
Right. It wasn't quite enough for me. I mean, my mom still's deaf, my skin's still messed up, and Joao told both of us we needed to come back for more visits. And the worst thing was, my mom and I, we were not seeing eye to eye.
Barbara
The thing is, can you open your heart to the possibility that this is real, and that in three or four years you could be healed if you do what you need to do? Do you know what I mean?
Davy Rothbart
Kind of, but I just think you and I see the world differently.
Barbara
We probably do. We're two different people. I used to see the world the way you do and I've learned some things by banging my head against the wall and then stopping because I realized it wasn't getting me anywhere.
Davy Rothbart
I'm not banging my head. I don't think there is a master plan. I don't think there is a reason for everything. I think there are accidents and coincidences.
Barbara
I don't. And I'm not going to argue that one with you. I don't know, Davy. I would hope that you can just say, let's see what happens.
Davy Rothbart
I don't want to let you down, but I don't think I'm going to come back here unless it's to visit you because you've moved here or something.
Barbara
You don't think you would come back even though he says he can cure you? That's up to you. That's entirely up to you. That's hard for me to understand why.
Davy Rothbart
I don't really believe in it.
Davy Rothbart
That was the first time I had ever told her that, and maybe realized it myself. I don't know what that means exactly for me and my mom.
Ira Glass
You mean, for the two of you who are so close to say, we disagree on something that's so fundamental and such a big part of her life?
Davy Rothbart
Right, because it is everything to her. It's been a couple months since we got back, and she says that she's experiencing some changes. And other people from the group, Maggie, who was blind is saying she's beginning to see a little bit. For my mom, it's the same thing. She says she can feel her inner ears. She can feel changes, shifts, vibrations, and she thinks it's the beginning of hearing.
Barbara
I can feel my voice going up and down. Suddenly, I have some sense of where the notes are. It's completely different.
Davy Rothbart
Do you hear the difference?
Barbara
It's like hearing. It's just vibration. I'm hearing it. I've got to get the tunes, the notes. [SINGING] Amazing grace, how sweet the sound, that saved a soul like me. [END SINGING]
Am I way off? Am I better than I was before?
Davy Rothbart
It sounded beautiful to me.
Ira Glass
Davy Rothbart is about to head out on a 126-city tour for his new book of excerpts from Found magazine, the magazine he created. Details are at foundmagazine.com.
[MUSIC - "AMAZING GRACE" BY DESTINY'S CHILD FEATURING MISSY ELLIOT]
Coming up, summoning the mysterious entities known as the Food and Drug Administration. That's in a minute, from Chicago Public Radio and Public Radio International, when our program continues.
Act Two: The Entities Known As The Food And Drug Administration
Ira Glass
It's This American Life, I'm Ira Glass. Each week on our program, of course, we choose some theme, bring you a variety of different kinds of stories on that theme. Today's program, Miracle Cures. Stories of kids doing whatever they think it might take, doing the impossible to help their parents get cured. We've arrived at Act Two of our program. Act Two is this.
Julia Whitty's dad had cancer, and he had used up all the available kinds of treatment. He probably just had a few months left to live. But there was one hope for him, one last drug that might work. And the problem was, a year of this drug would cost him $47,000, which his insurance couldn't cover and which he could not afford.
So Julia Whitty, she just wrote a magazine article about this experience. She said that she found when she tried to find this drug for him, she found that most of the ways she could get the drug for less were not exactly legal.
Julia Whitty
I absolutely was willing to break the law and I can't imagine too many people who wouldn't be, in all honesty. If you clearly saw there was a source for what you needed, and if you had to break the law a little bit to cross over the line to go there and get it, I think most people would do that for somebody that they loved. So that was where I began to look around and see if there was some other way we could get this drug.
Ira Glass
So you started looking around, what'd you find?
Julia Whitty
I went on the internet, as most people would in this day and age, I just started surfing around. And I did find-- that's where I first came in contact with people who might have had a loved one who died and had leftover prescription that they would sometimes give away or sell. But obviously, we needed a steady, reliable, long-term dose of this stuff. And I eventually was able to locate a country that manufactured this drug for completely different diseases. And they were selling it for about $1,200 a year, which obviously started to sound really cheap.
Ira Glass
As compared with $47,000 per year?
Julia Whitty
Exactly.
Ira Glass
So you go, you fly to some foreign country, you get some doctor there, I guess, to prescribe the drug?
Julia Whitty
Right, which is not difficult to do in other countries. It's pretty much not difficult to do in any country if you're a traveler.
Ira Glass
Did you have to actually claim that you had a disease or did you just tell the doctor, here's my situation.
Julia Whitty
I told him the truth regarding my father. And he was more than willing. I think he felt good being able to help me.
Ira Glass
And at this point, you're not exactly sure if it's legal to bring these back?
Julia Whitty
That's right.
Ira Glass
So what do you do?
Julia Whitty
Well, I had thought about it in advance, because I travel in my adult life and I've spent a lot of time in third world countries and stuff. And I usually travel with a pretty hefty medical arsenal. You know, I'd put multiple pills in one bottle. So I thought, well, I'm just going to go there. However they come, I'm going to take them out of that packaging and put them in empty prescription bottles that I have with other prescription names on them. And in all my years of traveling, I've never come back into the US and had anybody open my bottles. So I really didn't think I was going to have trouble with this.
Ira Glass
And so this is like, dozens of pills or hundreds of pills?
Julia Whitty
It was somewhere between two-, three-, or four-month supply, enough to sort of start my father on it, do a set of scans and see whether or not it was working.
Ira Glass
So you have hundreds of pills, what was the moment like when you finally were coming back into the country?
Julia Whitty
Well, you definitely get that sweaty palms thing going. You wonder, what are they looking for? What expression on your face? You know you're doing something that could be wrong.
Ira Glass
And what do we know about how many people are actually going overseas and bringing back drugs?
Julia Whitty
I know that their estimates right now are that between one and two million Americans are getting drugs one way or another from Canada alone.
Ira Glass
And is that legal or is that illegal?
Julia Whitty
In my personal experience, it was probably always illegal, but it wasn't enforced. For whatever reason, it began to be enforced around December of 2002. And I was told by the FDA that they were cracking down at that point.
Ira Glass
Do you know what the penalty would have been if you'd been caught?
Julia Whitty
I don't know, but I remember being so angry at the time that I was perfectly prepared to go to jail. Not that I want to go to jail, but I was just feeling this was an absurd way to have to live. And it was ridiculous, in light of the fact that this drug could be had more inexpensively and why my father couldn't have access to it. I considered it immoral.
Ira Glass
Now, at some point you learned that you might be able to simply order the drug from, what was it, an online manufacturer? Like an online pharmacy?
Julia Whitty
Not an online pharmacy. That would have been easy. It was the actual manufacturer in this country overseas. And they claimed they were already doing it for other patients in the United States. And they told me it would just sail through US customs and that did not turn out to be the case. It gets held up in US customs in Cincinnati and I began a long series of conversations with FDA officials, sort of case officers. And they tell me, it's illegal. You can't bring this in.
Ira Glass
And the reason for that law is because they can't vouch for the quality of the drugs? They haven't tested those drugs?
Julia Whitty
Exactly right. They haven't tested those drugs. That's what they say. We haven't tested those drugs, we don't know if they'll be good for you or not.
Ira Glass
But in a way, that's a legitimate thing. Like. In a way, you'd want the government to actually do that, to say, we have no idea if this manufacturer's reputable and the drug's OK.
Julia Whitty
Well, I would argue that I have the right to take that chance myself. We're just simply not allowed to do this. Now, we can bring in foreign-made food and foreign-made clothes and everything else, but we're not allowed to bring in foreign-made drugs because they are untested supposedly.
Ira Glass
There's a passage in your article where you say, "I can go to Europe and buy their wine for less, go to Asia and buy their clothes for less. American companies can buy their raw materials for less overseas, or they can move their operations abroad in order to hire cheaper labor or management. But on a mind-boggling reversal of the American principle of supply and demand, I cannot purchase cheaper drugs and bring them home."
Julia Whitty
That's right. And that's the part that, to this day, infuriates me, particularly about the new Medicare drug bill, which has expressly now, completely, clearly forbidden Americans to go overseas and bring back drugs for any reason whatsoever.
Ira Glass
And so the FDA holds this stuff up. How long do they hold it?
Julia Whitty
They held it for a couple of weeks. And for the first time, we'd cut his dose in half to try and eke it out, as the package wasn't delivered. Then we cut his dose in half again. Eventually it became clear to me that they were not going to give it to us for any reason whatsoever. And in fact, they were going to destroy it. And that's when I turned to my elected officials. I thought, well, maybe they can help me on this end. One senator, Barbara Boxer, was phenomenally helpful. Her office went to work on it. They just dug their teeth in and they had that package sprung in about 24 hours.
Ira Glass
And did you end up having to get the senator's office to intervene for you again?
Julia Whitty
Yes, I did.
Ira Glass
Like, every time it would come to the border, the same place, same people?
Julia Whitty
No, eventually I figured out a method with the FDA guy that they were willing to accept. We had to provide these very elaborate excuses of why my father was using the foreign version versus the American version of this drug. We had to sort of basically manufacture excuses.
Ira Glass
Oh, I see. You had to say that the American version didn't work?
Julia Whitty
Didn't work as well for my father for the following reasons, which we pretty much made up. It was pretty bogus, but they went for it. And they did that a few times. That system worked, and then it stopped working.
Ira Glass
Why, what happened?
Julia Whitty
At the end of 2002, we were bringing in another shipment and playing the game the way we'd learned to play it. And this time just couldn't get it sprung. And that was when I heard that the law, not that the law had changed, but that enforcement of the law had changed. And they were beginning to really crack down now on letting these drugs in.
The FDA case officer suggested that I go to the US company that manufactured the drug and apply for patient financial assistance.
Ira Glass
Now, that's a special program which lets you say, we don't have the money to pay the $47,000, so give us a break, basically, on humanitarian grounds?
Julia Whitty
That's right. And apparently, a lot of the pharmaceutical companies have these things, whether people know it or not, for their more expensive drugs. And we had actually applied for this at the very beginning, when my father was first prescribed this drug, and he didn't pass. He wasn't poor enough, they thought, so I decided we'd just lie. And I called the patient financial assistance line. They had an 800 number. And I was trying to sort of suss them out on, like, how poor did you really have to be before they would accept you? And she said, well, I can't tell you that. But she did, I think inadvertently, admit the only thing I really needed to know, which was that they don't actually check anything you say on the application.
Ira Glass
Oh, she said that to you straight out?
Julia Whitty
She told me straight out. I felt like it was something, she went, oh God, I shouldn't have said that. And in my brain, a little bell just went off and I went, yes.
Ira Glass
Now, a few months after your dad died-- and we should say that he didn't die of the cancer, he ended up dying of heart failure-- Congress passed the Medicare drug bill, which was designed to address exactly this problem. If your dad had survived, what would this bill have done for him, which is supposed to, basically, take these expensive drugs and put them within financial reach of people?
Julia Whitty
Well, I ran the numbers on it and I found that he would have still had to pay over $6,000 a year. And obviously, that's a lot cheaper. It's still not as cheap as the $1,200-a-year version you could get overseas.
Ira Glass
So is that good or bad, as far as you're concerned, getting it down to $6,000 to--
Julia Whitty
It's not good enough. It's not good enough, in my opinion, not if the drug companies are going to be able to ask $47,000, in my father's case, for a drug that all the research and development was done more than 40 years ago. If they have the right to do that, then I think we need to have something. If the government's going to become the biggest drug buyer on the planet, then they need to do something about enacting price controls or setting standards that they're willing to pay.
Ira Glass
The thing you're talking about is actually that, under the bill, the United States government would not be able to negotiate for lower prices. They wouldn't be able to say, we're buying a huge quantity, so give us a price break?
Julia Whitty
Right. Congress expressly forbade that in the Medicare drug bill.
Ira Glass
And as you note in your article, when the government buys anything in quantity, they negotiate the price down.
Julia Whitty
That's right. That's another case, I think, where the pharmaceutical industry wrote the law.
Ira Glass
And do you blame the drug companies for that?
Julia Whitty
I blame the drug companies at getting through to our elected officials, yes. They're obviously phenomenally powerful, as we can see by the number of lobbyists that they employ: 600, more than one for every member of Congress. There's a personal lobbyist, in effect, for every member of Congress.
Ira Glass
Julia Whitty's story about getting her dad's $47,000 prescription filled is in the issue of Mother Jones. That is on newsstands now, and it's at motherjones.com.
Credits
Ira Glass
Well, our program was produced today by Alex Blumberg and myself with Wendy Dorr, Diane Cook, Sarah Koenig, and Jane Golombisky, who is getting married today. Yes, today. We're going to have to call her Jane Feltes from now on. Our warmest wishes to her and to Rick.
Our senior producer is Julie Snyder. Elizabeth Meister runs our website. Production help from Todd Bachmann and Kelsey Dilts.
[ACKNOWLEDGEMENTS]
Our website, www.thisamericanlife.org, where you can listen to our programs for free. Or, if you care, you can buy CDs of them now. Well, you know, you can download audio of our show at audible.com/thisamericanlife, where they have public radio programs, bestselling books, even the New York Times, all at audible.com.
This American Life is distributed by Public Radio International.
[FUNDING CREDITS]
WBEZ management oversight by Torey Malatia. He came into the studio this week to watch us do the radio show. His review?
Davy Rothbart
It was horrifying. It was the most upsetting thing I've ever seen.
Ira Glass
I'm Ira Glass, back next week with more stories of this American life.
Davy Rothbart
The room kind of started swirling around me and everything got really silent. You know, there's sort of, like, a roar fills your ears.
Announcer
PRI, Public Radio International.