tv Inside Story Al Jazeera December 14, 2013 11:30am-12:01pm EST
thank you for watching al jazeera. i'm richelle carey, "inside story" is next. >> new drug trials for alzheimer's disease target people who don't have the disease but as much of a 50% chance of getting it later. i'm ray suarez, and that's the "inside story." >> five million americans suffer from alzheimer's disease. by the 2050 that number is expected to double. by that time the cost of treating the disease will hit 1 trillion-dollar. on this edition of inside story
we'll discuss the national plan to address alzheimer's disease and focus on newly funded research. the drugs will be used preventively on healthy people genetically pre-deposed to develop the disease. we'll start our discussion in a moment. first this background. >> what i noticed maybe four or five years ago was my difficulty in writing about complex topics. i just couldn't hold all of them at the same time in my mind, so it became much more difficult. and frustrating to try to write about those. >> i think david is a doctor, teacher, and avid blogger. these days he's writing about a topic that hits close to home. >> what i'm trying to do is take my family and my community with me into this journey so that i don't get isolated as much.
>> the alzheimer's association said there are 5 million alzheimer's sufferers in the u.s. it's the sixth leading cause of death in the united states. in 2011 president obama signed into law the national alzheimer's project act. >> it's incredibly important work and it's only going to become more important as the baby boom generation gets older and more americans are put at risk. that's why my administration is committed to doing our part to help. >> the national alzheimer's disease project seeks to create and maintain an integrated plan to prevent alzheimer's disease across federal agencies, excel the development of treatments that would prevent, halt or reverse of the course of alzheimer'alzheimer's, improve d treatment of the disease, and coordinate international efforts to fight alzheimer's globally. >> people are really afraid of
this disease. they just--i was, too. they are petrified that they will get alzheimer's. and a lot of that is due to the misconceptions about what it is and what happens to you and what it's like to experience it. >> many promising treatments have been followed by successful trials. alzheimer's is the only major disease with no way to prevent, cure, or even slow down its progression. >> this is not going to be an impossible disease to treat, but the money needs to come from the government. it's the only place it's going to fund it. >> reporter: the director of nih has made combating the disease a drop priority. so much so despite the $1.5 billion in sequestration cuts dr. francis collins found a way to scrape together $40 million of grant noun continue the work. the other $5 million is being provided by the national institute of aging.
in a statement dr. collins said we are determined even in a time of constrained fiscal resources, to capita capitalize on exciting scientific opportunities to advance understanding of alexandria's biology and find effective therapies as quickly as possible. the obama administration is vowed to continue research in hopes of getting one step closer to a remedy. >> we're building partnerships among government, researchers, advocates, providers of the public that will fully bring alzheimer's into the nation's consciousness. >> the majority of the grant, over $33 million will go to the banner alexandria institute of phoenix arizona. the fund willing test treatment on adults aged 60 to 75 who have no symptoms of alzheimer's but have copies of the ae 04 gene which has improved the risk of getting the disease at an older age. scientists may be able to delay
or prevent the memory robbing disease on 650 people. >> joining us now is pierre t erieax. welcome to the program. i understand that you don't yet have a drug for the trial, but you know who you want to use in the test. what is apoe 4 and how do we know who has it. >> apoe 4 is shorthand for a protein typed 4. it's a protein that our bodies make. it comes in three flavors, and depending on the flavor you have it turns out that you are more or less susceptible to developing alzheimer's later in life. >> it's not a guarantee but it raises or lowers chances. >> correct. we look for people who have two copies of the gene that makes that protein, which is
relatively uncommon and substantially raises the risk of developing alzheimer's disease later in life. >> you'll be doing this test on a pool drawn on a relatively small pool of the population? >> correct. we need to do genetic testing on people roughly aged 60 to 75 who thinks they may be interested in learning their susceptible and participating in a clinical trial if eligible. >> in order to participate you can't have developed or gun to develop sign was alzheimer's. >> correct. we'll focus on people who have elevated risk because of this genetic profile and age. >> how common is it to test a technique or approach rather than a specific drug for a specific ailment? >> well, we will be testing a
specific drug. what's a little unusual here is the sequencing of things. we were fortunate to receive funding from the national institute of health based on a plan without the drug having been selected yet, but we're in the process of selecting it now. >> so you know you want to go after the protein amaloid. how is that related to alzheimer's? >> on the analogy that the viewers might understand, we think that amaloid to alzheimer's disease as cholesterol to heart disease. we believe it's a central player. if we can attack it with an anti-amaloid agent at the right time we believe before damage has occurred is the right time to test this therapy. >> in the community of dollars
working to understand how amaloid might be related to the brain damage associated with alzheimer's are there different schools of thought about amaloid. what it does, how it works, how alzheimer's begins? >> sure. i can't pretend to know that we know everything about how alzheimer's disease unfolds but we do know that if you die with alzheimer's disease this protein is found in sticky deposits in the brain and around blood vessels, we know genetic mutations that cause misprocessing of the amaloid pathway will always develop alzheimer's disease. we know there is a rare mutation that blocks that pathway and for practical purposes can prevent alzheimer's disease. it looks like it's a very appropriate target, and we need to test it as robustly as possible. >> right now is it expensive to
determine who may have two copies of the apoe 4. we're still in the early days in mass testing for pieces of the genetic profile, aren't we? >> actually the testing is pretty easy. we and others have piloted ways of doing it. we can do it by mail, getting saliva in a tube and sending it to a laboratory to test for and it's straightforward. >> is it something that we can do in a mass way if we want to screen people for propensity to develop alzheimer's disease? >> our expectation is that we will be testing tens of thousands of people who after they're informed about the nature and purpose of the study, the nature and purpose of the genetic testing would be willing to undergo the testing and receive the results. i think we're looking at tens of thousands of people. and bear in mind that hundreds
of thousands of people have already had genetic testing through direct to consumer genetic testing companies. this is not a totally out of the box approach. >> life expectancy has increased a great deal in recent generation, given that big demographic bulge, a lot of people entering their later years all at once, genes or lifestyles or proteins aside, isn't life expectancy alone something that's going to increase the pool of alzheimer's suffers in the population? >> you're exactly right. ironically we're aging successfully but that makes us susceptible to common age-related things.
>> do you have some idea of what you hope to figure out and how long it will take you to do it? >> we do. i want to acknowledge my friend and colleague erik reiman who has been articulated for years that before the bane i--before e brain is ravaged is the time to do begin preventive therapy. can we slow down damage that occurs to the brain and measure that slowing affect with sensitive brain imaging and fluid measurement techniques. and do those things relate to one another in such a way that we might be able to do even faster studies in the future relying on those so-called bio
marker measurements. so a lot of related questions here and lastly this may be a good test of the so-called amaloid hypothesis. does this anti-amaloid therapy begin at this stage before the disease emerges, and slow down and derail the disease. >> thank you. >> we'll take a short break. when we come back we'll continue our conversation about alzheimer's research and treatment and possible cure. this is inside story. exclusive... former president jimmy carter reflects on the life and legacy of nelson mandela. >> that spirit of nelson mandela is embedded deeply in the heart and soul of the south africans... >> they worked side by side for freedom, now president carter talks about mandela's global impact. a revealing interview you won't
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>> welcome back to inside story. i'm ray suarez. on this edition of the program we're discussing alzheimer's disease and new research projects to find drug treatments. joining me now from minnesota, dr. ronald peterson, director of the mayo clinics alzheimer's disease research center and from chicago, beth, vice president of constituent services for the alzheimer's association. she works with individuals with alzheimer's and their families. dr. peterson, we've just been talking with pierre tariot in denver about clinical trials and taking a look at apoe 4. what is the state of the art now? is there anything we can do for people who are early in the disease today? >> well, right now, ray, it appears that probably the most
effective--the treatments we have against alzheimer's disease are lifestyle modifications. i think exercise, intellectual activities, staying involved in your social networks are really the best prevention methods we have right now. but i'm sure what dr. tariot and others have talked to you about is there are some drug trials designed to test the effectiv effectiveness of therapies. >> drugs that props will slow the disease progress, but also keeping in mind there are things that we can do to help shore up the brain. >> i think that's entirely likely that we will end up with sort of a cocktail of approaches. involving both pharmacological
preventions, drug and pharmacological treatments, exercise and the like. this is not different from what we do right now with heart disease. when we talk about trying to prevent heart disease and the problems that are developing from hardening of the arteries to the heart we talk about both lifestyle modification and pharmacological therapies to lower blood sugar and the like. i think that's where we'll be with alzheimer's disease down the road. >> into recent years i've been talking to neurologists and people who look at the money in providing healthcare to americans, and they shutter when thewhen--they shudder when they look at the larger generation of older americans. are we ready to cope with millions more cases of
alzheimer's? >> i don't think we are. we've got a long way to go. right now there's over 5 million americans with the disease, and over 15 million caregivers. when we talk about costs, it costs the united states every year in costs for care is over $200 billion. that's just cost of care. that's not talking about research dollars. so when we look at that we really have to make an investment in our research programs through the nih and make those investments at the same levels that other diseases have investments have been made. and we've been successful. as dr. peterson has been saying we have prevention for heart disease, for stroke. we know there are things you can do for diabetes. >> dr. peterson was also talking about lifestyle changes, and it
occurs to me that with people for whom the disease has already begun to take its toll, it's not that easy. this is not something that you can just tell somebody to do and then leave them to their own devices for the rest of the day. we don't really have a trained core of assistance of therapists, the kind of people who could help alzheimer's sufferers to do what is in their best interest, do we? >> if we look at our workforce we're going to need more people helping us in those very areas as companion i don't knows, nursing assistance in home care and residential care. right now people are struggle to go access services and to get the support that they need to get through it. you know, ray, alzheimer's disease last as long time. on average we're talking about four to eight years. some people live as long as 20. when you think about the type of care needed over that period of
time recognizing that it gets worse over time so they need more and more pe help. we're in a position as time goes on in the trajectory of the disease we'll need more people to take care of people who are living with alzheimer's. >> we're going to take a short break. when we come back we'll talk more about the demographics of alzheimer's and ask dr. peterson whether researchers are confident they're getting close to unlocking the mystery of the disease. this is inside story. i'm going to pay the last respect for my president. >> he was a global symbol of hope, courage and freedom. >> the world thanks you for sharing nelson mandela with us. >> today was declared a day of reflection and prayer. >> now al jazeera america commemorates nelson mandela from the people who knew him. >> i think all of those people who were inside that stadium were very lucky to be there. >> an emotional look at the life and legacy of nelson mandela.
consider this: the news of the day plus so much more. >> we begin with the government shutdown. >> answers to the questions no one else will ask. >> it seems like they can't agree to anything in washington no matter what. >> antonio mora, award winning and hard hitting. >> we've heard you talk about the history of suicide in your family. >> there's no status quo, just the bottom line. >> but, what about buying shares in a professional athlete? >> the challenges that i know about are who is going to care for us. one of the big problems is as our population gets older there are going to be more cases of
alzheimer's. but the middle age population, sons and daughters, there are fewer and fewer of those. there are going to be fewer unpaid caregivers. >> welcome back to "inside story," i'm ray suarez. that's dr. hilfiger. he has been blogging about his own alzheimer's experience and give people a riching sense of what is at stake for our country. continuing our discussion now i want to ask you, dr. peterson, researchers in the united states and around the world have spent considerable amounts of time and money in the past generation trying to find the causes and treatment for this scourge. are you more confident than you were a year ago, two years ago that we're getting closer? >> i think so, ray. i think we actually understand a lot more about the disease and
it's underlying processes than we did a few years ago. we have a good understanding of what is the underlying biology. what are the proteins involved in producing this disease and causing the damage? we can now measure those proteins. we can measure them through imaging studies, spinal fluid, sometimes through blood, and it gives us a real index of what's going on in these individuals. i think we're able to calculate who is at greatest risk for developing the disease five, ten, 15 years down the road. where we're lagging behind is what are we going to do about it? where is the therapy, the silver bullet that's going to inter convenient. that's coming down the road. i think there are several drug trials under development right now that may, in fact, have an affect on the underlying disease process itself. that's what we really need to see to make a change in this disease prognosis.
>> the screenings and the genetic pre-disposition may be easier for us to know. those people who may be unlucky enough to have an early on set of the disease, maybe we're coming very close to being able to identify them, but what about thwhat is called the old, old, people over 80 and diseas alexas is a disease of old age? >> we have a sub group of people who in the truly genetically determined family meaning that in those families the risk is 50/50 because we know the gene that is operating there. we know a great deal about them. fortunately, that's only about 1% of all the disease. there is another category of genetic pre-disposition. individuals who are homozygote
for this allele characteristic. those people are at greater elevated risk of developing the disease, but still that's only 2% to 3% of the population. what you refer to are the general population, individuals out there who are at risk of developing the disease in their 80's, that's the bulk of the disease. even in those characteristics in those families there is a tendency for the disease to run in the family. so there are much more less deterministic genetic pre-determination, but still there are genes that tell us that individuals are at an increased risk of developing the disease, and that helps us characterize those risk profiles. >> until dr. peterson and his colleagues experience some of the breakthroughs they think they're getting closer to, what do you need and what do the people you advocate for need? >> i think one of the most important things that we can
tell a family living with alzheimer's disease is they need to get support. they need to get help. if they can get educated about the disease, get a care team, neighbors, friends, but also those companions, the doctor, the community services, the day center, all those things together can form that care team and help families get through the course of the disease. it really is a marathon. it's not something that is over and done with in a year's time, two year's time. they need to plan for that. accessing support services makes a big difference for people. if they understand how the disease works, and they can learn from a support group, for example, visiting a website, if they can learn that there are--learn about the disease and how they can interact in different ways that might be easier and communicating with the person with the disease, then they can be more
successful. that's going to have an impact on their every day life. as we talke talked talked aboute goes on for a long period of time. one of the worst things i see that happens is people think they can do this themselves. it's hard to ask for help over a long period of time, but it's important that team think about that. the earlier people can do it. if they can plan with the person who has alzheimer's disease and engage them in the process, that can be really helpful for everybody. >> beth call meyer joins from chicago. dr. peterson is in minnesota. thanks to you both. that brings us to the end of this edition of "inside story." in washington, i'm ray suarez. ♪
>> welcome to al jazeera america. i'm richelle carey. here are the stories we're following for you. [ bells ringing ] >> on the anniversary of the sandy hook shooting bells toll for the 26 victims. south africans line the street as nelson mandela's body makes the final journey home. and a first for china. it's landed on the moon. the first soft landing there in decades. >> it's