The Gene Doctors

The Gene Doctors


Every year, a million babies are born worldwide with hereditary diseases. Physicians once had little to offer. But now a new breed of gene doctors is on the case. Devising treatments that target the root causes, they are transforming patients’ lives.



Episode #822


Students from Wai‘anae High School in West O‘ahu tackle the controversy surrounding commercial dolphin tours. On August 23, 2016, NOAA (the National Oceanic and Atmospheric Administration) published a regulation prohibiting tour boats from being within 50 yards of a spinner dolphin, including swimming with them. This regulation has caused a major downturn in business for ocean tour companies such as Sea Hawaii, which claims it has seen a 90% decrease in revenues since the ruling was put into effect.


–Middle school students from Island School on Kaua‘i teach us how to make a puka shell necklace.


–Students from Kalaheo High School in Windward O‘ahu tell us about a camp for the siblings of young cancer patients.


–Students from Mid-Pacific on O‘ahu introduce us to education innovator Ted Dintersmith.


–In their HIKI NŌ debut, students from Highlands Intermediate School on O‘ahu show us how to salsa dance.


–Students from President William McKinley High School in Honolulu tell the story of a McKinley alumnus and banker who has dedicated a great deal of his life to America’s pastime.


–Students at Wai‘anae Intermediate School in West O‘ahu report on a new program on their campus designed to get kids to show up for school.


–And the students at Kalani High School in East Honolulu feature a young tie-dye designer who channels the spirit of the 1960s in her clothing line.


This program encores Saturday, June 17, at 12:00 pm and Sunday, June 18, at 3:00 pm. You can also view HIKI NŌ episodes on our website,


Restoring Best Picture Quality

PBS Hawai'i: Restoring Best Picture QualityWe’ll get there. Resilience is in our DNA


Leslie Wilcox, President and CEO of PBS HawaiiThe people of Hawai‘i bought us a $30 million new home. You provided us a forward-looking physical plant and the stability of property ownership.


And, of course, you now expect us to “bring it” with more and more quality content and higher and higher production values. That’s our expectation, too!


The last thing you want to see is reduced picture quality on shows that you love.


Understood. And yet, you may have experienced intermittent pixelation (that’s when individual pixels in a digitized image stand out) and sporadic, brief audio disruptions, all since PBS Hawai‘i moved into our new home with major, new technology systems.


First, I want to apologize to you for the blemishes in your viewing experience. Second, I’d like to explain. Third, I want you to know we have been working constantly, and repeatedly seeking help from network specialists, to eliminate the problems. And fourth, we have reason to believe that a solution is imminent.


As I write this, Level 3 Communications is arranging for a larger dedicated fiber circuit to transport our content. Level 3’s service to this local public television station repeatedly fell through the cracks following the telecom giant’s $5.7 billion acquisition of our previous provider, TW Telecom. We experienced critical delays as Level 3 worked to integrate TW Telecom into its fold and laid off staff. Level 3’s challenges in absorbing TW persisted as PBS Hawai‘i relocated to our new building and launched a long-planned transformation of our engineering model.


Our new model is something we’re excited about, because it allows us to spend less money to distribute our programming on today’s multiple media platforms – and frees up more resources for quality content. Our new systems rely upon dedicated access to an undersea, overland fiber optic network that runs through a Joint Master Control Center, called Centralcast, in Syracuse, New York. We’re creating programming expressly for Hawai‘i while sharing “back-office” tech costs with our PBS nonprofit peers.


Using this data highway shouldn’t have presented roadblocks in the Age of Fiber, but timing is everything: Our contracted fiber provider, TW Telecom, found itself going through a wrenching ownership transition. We sense that the layoffs may have resulted in a loss of institutional knowledge about projects already underway. For three months since our move to our new building, we experienced new owner Level 3’s lack of communication and responsiveness while our picture and audio quality suffered.


“This wasn’t managed properly. I don’t know why – we know how to do this. We’ll take care of it,” Level 3’s new Hawai‘i sales director Anthony Compiseno assured us when we met for the first time on August 8. He told us that we’d been assigned an unsuitable network setting – and arranged to test higher bandwidth capability (300mb or megabits per second, versus 200mb on our existing pipe), with a “pseudowire” enhancement to protect our broadcasting content. By the time you read this, our picture quality may already have returned.


You and other viewers have gone through this trying time of intermittent broadcast disruptions with us.


PBS Hawai‘i sends you our gratitude and aloha, for your patience and your continued faith in our programming.


We’ll get there. Resilience is in our DNA.


Mahalo piha,
Leslie signature

PBS Hawai'i: Restoring Best Picture Quality


Being Mortal


FRONTLINE teams up with writer and surgeon Atul Gawande to examine how doctors care for terminally ill patients. In conjunction with Gawande’s book, Being Mortal, the film explores the relationships between doctors and patients nearing the end of life, and shows how many doctors – including Gawande himself – struggle to talk honestly and openly with their dying patients.


The Road to Medical Marijuana


Hawai‘i legalized medical marijuana in 2000, but it’s been a long and bumpy road to establishing a dispensary system. The latest delay came on April 13, with the State Health Department saying it needs more time to access criminal histories of finalists for licenses to grow and sell medical marijuana. In the meantime, patients and caregivers have been growing their own cannabis.


Your questions and comments are welcome via phone, email and via Twitter during the Live Broadcast.


Phone Lines:
973-1000 on Oahu or 800-238-4847 on the Neighbor Islands.




Join our live discussion using #pbsinsights

Vaccines: Calling the Shots


Diseases that were largely eradicated in the United States a generation ago – including whooping cough, measles and mumps – are returning, in part because nervous parents are skipping their children’s shots. Go around the world to track epidemics, explore the science behind vaccinations and discover the risks of opting out.


The Forgotten Plague

By the dawn of the 19th century, the deadliest killer in human history, tuberculosis, had killed one in seven of all the people who had ever lived. The disease struck America with a vengeance, ravaging communities and touching the lives of almost every family. The battle against the deadly bacteria had a profound and lasting impact on the country. It shaped medical and scientific pursuits, social habits, economic development, western expansion, and government policy. Yet both the disease and its impact are poorly understood: in the words of one writer, tuberculosis is our “forgotten plague.”


Norbert Palea


Original air date: Tues., Oct. 13, 2009


On Location at Kalaupapa


Hansen’s disease patient Norbert Palea of Kalaupapa was only five years old when he was sent there, without even being officially diagnosed with the disease. In spite of that sentence and its hardships, he endured, with no regret. He tells Leslie, “Even if they sent us here… look around. They gave us the most beautiful home in the world.” This is the first in a series of Long Story Short shows shot on location at Kalaupapa on Moloka’i.


Norbert Palea Audio


Download the Transcript




My mother painted a beautiful picture. She said, Oh no, you’re going up there, and you going see your father and the people, and be taken care. She painted this beautiful picture. So it made it kinda easy for me. But I remember that day when we were going all the children were crying.


Aloha mai kakou, I’m Leslie Wilcox of PBS Hawaii. Welcome to Long Story Short, on location in Kalaupapa, Moloka‘i. This is the lush yard and the home of Norbert Kaiama Palea, who was banished to the Hansen’s Disease settlement here at the age of five, in the year 1947, without, he says, even a diagnosis of leprosy. Just a small mosquito bite that alarmed authorities because of the times of fear and dread in Honolulu. On this lovely day in 2009, Norbert Kaiama Palea is the youngest patient at Kalaupapa, 68 years old. It’s one of the nicest homes in Kalaupapa, a tribute to the nurturing of its owner, Norbert Kaiama Palea. I t’s a far cry from his first remembrance of life inside the system, a bad memory of his introduction to life as a Hansen’s Disease patient.


What’s your first memory?


My first memory was the old Kalihi Hospital. Think of an old concentration camp, like they had in Stalag 17; that’s what it reminded me of. It was like ten feet high, and it had barbed wires all around the fence. And we were staying there, and because we moved later to Hale Mohalu in Pearl City in 1949 because of the soap factory that was there. So Kalihi was the receiving station for all the people that lived within the islands.


First, back up. How did you get to the receiving center in Kalihi?


All I know is I was in school one day. And I remember my auntie coming and talking to my mom in Hawaiian and said, Oh, Kaiama has to go to the mai pake place in Kalihi. Mai pake means Hansen’s Disease. I remember that. And next minute I know, I’m already in this hospital. I’m in Kalihi.


Was your family scared when they heard you had to go the hospital?


No, no. They used to come and visit me, before I came here. I stayed there about three months.


And how old are you at this time?


I’m five years old. This is February the 10th, 1947.


And why did you get sent?


Well, because I had a little mosquito bite on my ear, and because I had my father who was here in Kalaupapa, who I never saw in my life, they thought, Oh, it’s leprosy already. So there were about twenty-six of us. We were all sent to Kalihi.


And you were there to be diagnosed? Or—


No, we were not there to be diagnosed, because there’s hundreds of people. There’s so many patients coming in all the time, constantly.


So basically, when you had a mosquito bite, before you had a diagnosis of —




—Hansen’s Disease—


I wasn’t diagnosed.


—you were in a place full of people who—


Full of people with Hansen’s Disease. And not only Hansen’s Disease because in the early—late 30s the prevalent disease in Hawaii was tuberculosis. This is why we have the hospital in Leahi.




So lot of the patients that came here had tuberculoi—tuber—[INDISTINCT], and leprosy, they called that. It’s two, because it’s combined with tuberculosis and leprosy.


So do you think you had Hansen’s Disease? Was that what—




—that was?


I don’t think it was a mosquito bite, my mom said. I believe that. I don’t believe I had the sickness, because from there, there was a shipman—what I remember about Kalihi was the monkey shows, we called that. And lot of people ‘til this day, the doctors in Hawaii, they don’t like us to remember that.


Monkey shows? What’s that?


The monkey show is like, they strip you and I have the pictures of it. All you have is a little napkin in the front of you. Women too, they only have just little napkins here. And you would walk this plank. And the doctors would come around and—not doctors—just people who would look around—


Look all over you?


—and probe all over you. And that was really demeaning. They rob you of all your dignity. So lot of people couldn’t, they would just throw a fit.


You remember doing that at age five?


I remember doing that. To me, I was nonchalant about it. I just you just go through the motions and get it over with. Because they said, the sooner you get over with it, but you see everybody crying, and oh, I don’t want to go do that.


Because they were finding things on their bodies?


No; because these were perfect strangers.




And the women, especially. So I said, Ah, just go through it and get it over with, because I still remember the older people used to tell me. I guess because I was young and absorb everything real fast. You have to grow up quick.


When you were five years old, do you remember thinking—


I remember—


—I’m not gonna be with my family again? Did you know that?


[SIGH] Not at that time.


You thought you were going home afterwards?


No. Later on when my mom came and visit me, she said, Oh, Kaiama, you’re gonna go to Kalaupapa. [INDISTINCT] Then I said, You mean, where all the leprosy patients are? Now, already, I knew of the place, because in school, they talk about it, when I was a youngster. And then …


And they didn’t talk about it like it was a disease. They talked about it like it was a death sentence, and something—




—very dirty, right?


Something very dirty, unclean. So at that moment, I didn’t really, [INDISTINCT]. Only thing, my mother painted a beautiful picture. She said, Oh, no, you’re going up there, and you going see your father and the people, and be taken care. She painted this beautiful picture. So it made it kinda easy for me. But I remember that day when we were going all the children were crying.


You weren’t crying?


No. They were screaming. Oh, I don’t want to go there. Because they know they’re gonna die already. They know, and I knew I was gonna go there. But before that happened when my mother used to visit every weekend, she would come here and she would explain things to me.


And she already had a husband here, so—




—she knew.


She knew what that meant. So my mother used to say, Kaiama, the day when you go, when you get on the plane, whatever you do, don’t you turn around, now. And you sing, because you have a beautiful voice. Sing to all these kids. So I used to just be singing to them; I never think anything. And then when I used to go [INDISTINCT] to do all the songs. They tell me [INDISTINCT] sing any song, I would just get all the words and sing to them. So now, the day we were gonna depart I remember, my mother was way over there. They cannot stay close to us, like at least fifty feet away. Even at the visitors place. I’m sitting here, there’s the hedges, another hedges, and then they’re way over there. And you scream across. And there’s a little small chicken wire fence above, but you had to yell across. Because they’re afraid that maybe your saliva might [INDISTINCT].


And you—


That’s how ignorant people. [chuckle]


And you were just a little boy.


Yeah; so I kinda was prepared for it. So when I go to the airport, I mean, some


of them are still living. Some of them are living outside now. And they say, Norbert [INDISTINCT]. Norbert, you remember that day we was all crying, and you was singing to us, and said, Don’t worry about it. [chuckle] I say, Yeah, maybe I was little too naïve. But no, I didn’t have that. As I said, my name Kaiama. When I was a child, only about a year old my grandfolks told my mom I’m gonna be taken away from her. Just like that. So they said they going give me the name Kaiama, means strong. Like the ama in the ocean—the balance.


—on the canoe.


Keep things balanced, even though—even you’re not going [INDISTINCT] and all that. And I believe that, of the name.


And you had some proud lineage.


Yes, because my family and as a youngster, I remember my sister, she says, You know, Norbert, just remember who you are and where you came from. Don’t be high maka maka, you know, [INDISTINCT] you come from alii family. [INDISTINCT] To be alii, you must be humble.


What’s the alii connection?


My great-grandfather and Queen Lili’uokalani’s mother are brother and sister. That’s our connection.


So when you received the name Kaiama, and they knew you had to be strong, and they said you’d be taken away, what was that all about?


My name is Norbert, but all my brothers and sisters, my family, they don’t call me Norbert. Only the family call me that name, so all my brothers and sisters begin to call me that every time they come. So I become it you know, but they start calling me that name.


Do you think it was destiny that you came here, fate, or was that—


It was—


—just a lucky guess that somebody thought you were gonna—


It was—


—be taken away?


It was destiny. And I have no regrets about it; none whatsoever. I feel this way; that the more something sad happens to you, you grow from that. Sadness is a good thing. Lot of people say, Oh? Sadness changes your whole outlook in life. So my mother said don’t turn around. So when we got on the plane, I remember that, just before coming everybody was crying. And I was singing. And just like they wail. Their crying was above my voice. So I remember I just looked back. And then I still remember their faces. My mother, they were crying. In fact, before, they was crying. My mother said, Remember now, Kaiama, don’t cry, now. And I said, Ma, how come they crying? But nobody’s crying. I don’t see no tears. But I can feel it . And she said, Oh, because they love you. My mother had all the answers for everything. She was a wizard.


Was she putting up a good front for you?


My mother was a very strong lady. My mother—she could see anything coming, before it even happens, she can tell you what’s gonna happen tomorrow.


Here’s a mom who lost her husband and the eleventh—






So then my mother was a very strong lady. She believed in God and everything. So she instilled in me something that no professors of mine that I had over the years can ever give you that kind of value.


With medication that arrested Hansen’s Disease, Norbert Kaiama Palea went to college, became a fashion designer, made money, travelled widely—he owns a condo in Honolulu. But, for him, this, is home. And, it’s a form of heaven.


I went to school, and I got my masters in design. And then that’s when I went out, go all over in Louisiana and then opened up a shop. But then, I had a boutique shop [INDISTINCT] at Kahala. Had [INDISTINCT] the Ilikai. Was the first time I opened up there. So I was doing business [INDISTINCT] and then helping my family, supported them. [INDISTINCT] But the only thing was, when my mother got older, she said, Oh I used to run away to go and visit her. And I always was watching the time, ‘cause when the next shift, they’re gonna make bed check. [chuckle] We used to live in this individual ones. They would shine with the light and shine on your bed to see if you’re in. But we escaped already. And then you get caught, so I faced the judge about three times [INDISTINCT]. It’s you again, Mr. [INDISTINCT]. [chuckle] He said, what is it this time? I said, I ran away, [INDISTINCT] nowhere to be found. I said, No, I heard them. They have the intercom. How come they [INDISTINCT]? How come, where were you? [chuckle] They were looking for you. [INDISTINCT] But I’m a real good actor. I said, Well, I went onto the top of the building. You’ve seen Hale Mohalu?




That old—


The old building.






So I said, I climbed to the top of the building, so I couldn’t hear the [INDISTINCT] on top of the building, right? What were you doing up there? [INDISTINCT] I missed my family.




I said, You do anything you want with me. I used that term. Do anything you want with me, it doesn’t matter, ‘cause I’m wanted to commit suicide. I wasn’t going commit suicide. I’m too ornery to do that. [chuckle] I said, I wanted to commit suicide. So you know what the judge did? He says, I’ll pardon you. And Mr. [INDISTINCT] was so angry because he knew; he’s lying, he’s lying. I says, Well, I have no excuse for myself. [INDISTINCT] You do anything you want. And he pardoned me.


That worked more than once?






About three—


Bad boy.


—four times. [chuckle] But yet, I’m the ringleader for all this.


Your mom, you say, was very strong, and of course, she had other children; you were the eleventh. But I can’t believe she would have been that strong for—




—so long, not being with her little boy.


Every time when I used to go home for funerals—and I just went to two recently. Every year, I’m going down for funerals, there’s so many of us. There’s hundreds of us. So I go to the funeral, and then my grandnieces, my great-grandnieces, they say to me, Uncle, every time Grandma used to say, she cry every single day, even ‘til now. And she—my mother [INDISTINCT], They cheat me of you. They robbed me.



The relationship [INDISTINCT]. But my brothers and sisters too. And I said, When I talk about this place and I want to come back, my brothers and sisters, they going cry. My mother said, You didn’t have the sick, now, remember that. You did not have the sick. You didn’t do anything wrong.


Can you compare the stigma to something else? ‘Cause, those of us around today don’t know what it was like then, the fear of leprosy at this time.


I cannot compare anything like that. The thing is this. The worst thing was when my father was [INDISTINCT]. Norbert, do you know [INDISTINCT]. And he’s talking to me [INDISTINCT]. Talking story, we’re drinking and we’re drinking [INDISTINCT]. He said, Norbert, the worst pain I ever had in my life? I said, What? He said, I remember being on a sampan with the cattle.




And the cattle would mess up, we [INDISTINCT] on them, and they’re on this boat to come to Kalaupapa. He said, When I look back, my mother was pregnant to my younger brother, I was holding her hand. She says all my brothers and sisters were there, and my sisters … they were just waiting for my father. And that was at that time, you were exiled, you’re here to die, never to see them again. So when you have a funeral and you pass away, at least you have closure. But this, to be living here knowing that you have children and family out, and there’s no phones before. Used to have the crank phones. We had no phones to call to Honolulu. And we couldn’t write letters. They stopped us. You know that?


They stopped you from writing letters?


Well, they used to fumigate everything. [INDISTINCT] they used to cut the corners and they used to fumigate it overnight in the fumigation room. And my father said all the times that they would sterilize them, so they don’t get children again.


Wow. So how did he do here? He was older and less resilient.


No, no, my father was—


He had more invested in—


My father was highly respected. [INDISTINCT] I’m blessed. The best parents in the world. My father was a very intelligent man. And he was a musician, and he could play any instrument. And then everybody looked up to him. He was a very humble, soft spoken man. Not like me, I’m kind of talkative. But he was very soft spoken, and a very humble man.


It sounds like you’ve made the very best of this, and you have appreciation of abundance, not scarcity. But what about some of the folks who were here at the same time, who—




How … I mean—




—it can’t be that common a reaction, just acceptance. You must have seen a lot of defiance—


Oh, I’ve seen—




—a lot of cry—oh it’s heartbreaking. I’ve seen it. But then, as the years go by, because we have all these great neighbors here, one word from them, and they can calm everybody down. Aole, they would say. Don’t think, and don’t feel that way. This is just a new beginning. Death is a beginning. And while we’re here, we are not to question why you’re here. It’s not for you or me to say, Oh, why did you give me this sick? You know what I mean? The thing is, you accept it and make the best out of it. And then appreciate everything that’s around you and then one day, you’re gonna see the beauty. Even if they sent us here look around. He gave us the most beautiful home in the world. That’s the icing on the cake. I would never [INDISTINCT] change your life. I say, No, I would never. I’ve learned how to be more loving towards others, be more compassionate, more wisdom and knowledge. And try to be an inspiration to others. Not because [INDISTINCT] and then this way I can see somebody walking by, and I know if something’s wrong with them. I can feel it. I’ve met thousands of people in my life. [INDISTINCT] Why are you worrying so much? [INDISTINCT] And they would start talking to me [INDISTINCT] get a divorce. You can see it on their face.


Kalaupapa patient Norbert Kaiama Palea has attended the funerals of hundreds of fellow Kalauapapa patients who passed on. He says death is a new beginning, and funerals are not to be missed.


Can you still feel strong when you go to the funerals? And I know you go to many, of people you’ve met in the settlement.


Thousands. I go to my—well, let me see. I have seventy-six nieces and nephews, and one hundred and twenty-six great-grandnieces and nephews, and another hundred—there’s three hundred and forty-eight nieces and nephews from my brothers and sisters. My mother has thirty grandchildren from my three older sisters; one has ten, one has nine, one has eleven. And great- grands, there’s so many. And I have many, many uncle and aunties, because my father comes from a family of eighteen.


So you’re saying—




—people die of whatever cause, and it’s not just




—going to funerals of those who had the disease.


When you die, you’re just escalating to another higher level.


You don’t fear death?


You should accept it. Whether you like it or not—you don’t have to accept it, but whether you like it or not, you don’t know when you’re gonna die, but we’re all gonna go. But the thing is, why people fear death is they don’t have that love of caring and sharing to other people. When you’re there, you don’t even think about it. If I should die tomorrow, so what, as long I know I’ve been good to every, single human being that you meet, complete strangers. And that’s the key to me [INDISTINCT] fear. I don’t fear death. It’s inevitable. I mean, knowing that, if people can accept that thought, it’s inevitable, whether you like it or not. I don’t care if you’re a king, queen, or whatever; you’re gonna go. When He calls you, you’re gonna have to go.


Okay; so I’m having trouble grasping that.




You don’t feel bitterness that you got banished to Kalaupapa, even though—


I don’t—I don’t—


—you weren’t a diagnosed patient at the time. Right? I mean, you don’t feel—


My mother; my mother is the one that wrote letters, she was so mad. She said, I feel like come over there and bomb that place, I want to bomb that hospital and kill all those people there. My mother. And the more she would say, I said, Mom, no, don’t feel like that. Because I was taught … I guess [INDISTINCT] from my grandfolks, Sister Mary [INDISTINCT] because she’s from … [INDISTINCT]. They say this, The worst thing anybody can do, why you feel all this kind of pain, anxiety, and all that, is number one there’s three days of fast. The first day, you forgive yourself for all the people that you hurt. Even those that you cannot remember, because we say things sometimes we don’t know that we hurt people’s feelings. And if you take all that back, and then the next day we fast, and we [INDISTINCT]. I mean, it’s something. My mom is in Honolulu, she’s [INDISTINCT]. Because simultaneously, we before they even read, we communicate. So it’s, ESP, whatever you want to call it. But because we’re living here, my senses are so keen, I can tell if somebody’s sick out there.


You said three things. What’s the third thing? The fast, the dream.


And [INDISTINCT] for everything that you do. And He gives you everything. [INDISTINCT] how I’m gonna pay my bill? [INDISTINCT] I don’t do that. I don’t even worry about that kinda stuff. I used to. But through my years of growing up, from people that I’ve met through my life I guess [INDISTINCT] they tell me these things, so I take it to heart. And I never forget what people tell me.


It’s so interesting that there’s such loneliness here, and yet, such a sense of community too.


You know something?


You never felt lonely?


Never; ever. It’s like this. I’m home here now. Now, I know lot of the people that’s here. I’m younger than them, right? So I look up to them, I respect them. Not because I have a better education that I’m better than them; no, I’m not. I’m their [INDISTINCT], I’m below them. So if I know they’re sick or something, I go and take something to them. Or give up some of my time and go there. You don’t have time to grow up by getting sad. To me, when you help other people, you’re actually helping yourself.


M-m; that makes a lot of sense.


When you do other things for others—like now, I said, Oh, I’m gonna eat lunch, I don’t want Leslie to [INDISTINCT].


Norbbert Kaiama Palea, taken from his family at the age of five, and banished to the Hansen’s Disease settlement in Kalaupapa, Moloka’i. He grew into a man who sees abundance, not loss, and for every ending, a new begining. I’d like to thank Norbert for sharing his life and his life lessons on Long Story Short. I ’m Leslie Wilcox from PBS Hawaii. A hui hou kakou!


You get so caught up into yourself that … look around you. [INDISTINCT] You forget what’s around—what’s around you that’s more important.


Don’t worry about the semantics?




The words.


Look around you look what God gave. Look around. Appreciate [INDISTINCT]. I still have a good mind. Thank God for that. You know what I mean? It’s the way you think, the way you perceive things.