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CNN LARRY KING LIVE
Interview With Montel Williams, Nancy Davis, Stephen Hauser, Adam Kaplin, Mark Barondess
Aired March 6, 2004 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
LARRY KING, HOST: Tonight, Montel Williams. He's been pushed to the brink of death by an incurable and unpredictable disease -- multiple sclerosis.
How does he cope with it?
Joining the Emmy Award winning talk show host are Nancy Davis. She has MS, too, and is the founder and namesake of an MS foundation, and a network of America's top MS research centers.
Also, two prominent MS researchers -- Dr. Stephen Hauser of the University of California, San Francisco, and Dr. Adam Kaplin of Johns Hopkins School of Medicine.
Plus high profile attorney Mark Barondess. He has MS and is general counsel for the Montel Williams MS foundation.
And they're all next on LARRY KING LIVE.
Good evening. A very important show in store tonight. We're going to devote an hour to a discussion of multiple sclerosis -- an extraordinary disease that needs a lot more attention.
We're going to spend the first two segments with Montel Williams, the Emmy Award winning TV talk show host, author of a new inspirational memoir, "Climbing Higher."
Montel has multiple sclerosis and is a founder of the Montel Williams MS Foundation.
And then later, an entire panel will join us for the final 40 minutes of the program. It's a great pleasure. Welcome.
What do you mean by that title?
MONTEL WILLIAMS, TALK SHOW HOST: Well, you know, it's really funny. This book is now on the "New York Times" bestseller list. It's been there for three weeks.
My first book was called, "Mountain, Get Out of My Way," where I did an autobiographical sketch, if you will, looking back at myself and looking back at things in my life, and juxtaposing them against things that are happening in other people's lives and trying to be motivational. In this one, I decided to kind of tell a little bit more truth, because I feel as if, you know, I've been moving mountains out of my way my whole life, and now I've really got to climb a little bit above and take a look around, so that's the reason for the title.
KING: Does it center on the disease?
WILLIAMS: Well, it does. And I'll tell you reason why I even decided to write the book.
About four weeks before I contacted my agent and said, you know, I've got to write a book about my struggle with MS, I was standing in a airport in Chicago. And a woman walked up to me and said, Montel, thank God for you. Thank you so much. You know, I mean, we finally have a face to put on MS.
And you've been coming forward. You've been talking about MS. We talked about medication. We talked about all kinds of things.
And then, before she went to leave me, she said, but I've got to tell you something. You know, you make it really hard for us. And I said, what are you talking about?
And she went, well, because, you know, my husband came to me a couple of weeks ago and he said, now, why aren't you like Montel? Why don't you go the gym? Why don't you have a job? Why don't you get up? Why don't you go out walking?
And this woman was on a walker. And then I realized that all her husband knew of me was what he sees of me every once a day, an hour of day on television.
And he didn't know anything all about what goes on in my life. And so, I decided to write this book, because there's a lot of other people out there who are suffering from illnesses, whether it be MS, cancer, AIDS, whatever -- and suffering in silence without a voice.
And I wanted to give a voice to those of us who are suffering.
KING: How did you discover this?
WILLIAMS: It was really strange. And really, what has now become, you know, the worst of my symptoms. And MS is so insidious, because there are about 1.5 million of us who suffer from this disease, here in America alone.
But I will bet you that we all may have, even though just a few symptoms that may be the same, most all of us have different ones.
With me, it's extreme neuralgic pain -- a nerve pain -- in my lower extremities, from my knees down to my feet. And it's 24 hours a day, depending on the severity ...
KING: So, you're in pain now.
WILLIAMS: Right this second, 24 hours a day, every day of the week. Right now it's not as severe as it can be.
During periods of time that I go through episodes or bouts or exacerbations, as it's known in this disease, because my type of MS is remitting relapsing, which means it comes and goes with its own periodicity.
During those bad periods, let's say on a scale of one to 10 it's a 10. And I had a period like that about four years ago. Went to a doctor, had it diagnosed. And they realized that yes, in fact, you have MS, MS 2 -- MRI, through blood tests and through spinal tabs.
Now, that pain that I went to see the doctor about has continued. And it continues even as we speak, and it's every day ...
KING: What did you think it was?
WILLIAMS: I thought, like so many doctors had said before going to this doctor, they said, oh. Look at you. You lift power (ph) weights.
I used to be a very, very heavy weight lifter. I weighed about 210, 215. And I used to put a lot of weight on my back. I squatted over 500 pounds.
So they would say, look it, you fool. You've pinched your sciatic nerve. You've got a problem there and that's what the pain's coming from. Stop lifting weights and you'll be OK.
Well, I stopped lifting weights, but the natural progression of the disease was that it would go into remittance, and that pain would go away.
KING: We have a couple of doctors coming on the panel ...
KING: ... later. They're going to explain what this is without being too technical what it is, ...
WILLIAMS: Sure. Well, you know, ...
KING: ... what happens in the body.
KING: But I want to get with you on the effects of the disease. First, why did you go public?
WILLIAMS: Well, one of the things ...
KING: You didn't have to do that.
WILLIAMS: When I first -- the first nine months, I kind of suffered silently and secretly. But then I found out that there was a certain time where there was, getting ready to release the information, because somebody had given them or they had paid for, you know, a copy of one of my MRIs or something.
So, I decided to hold a press conference, because I'm the one that's going to control the information about me, not some tabloid.
And I also wanted to be able to control the definition of me. I'm the person with MS. And I will be that person that Montel defines as a person with MS, not what somebody else does. So I came forward.
And then when I decided to write this book, I started thinking about it. You know, when I first was diagnosed, one of the things that doctors never told me was that one of the primary symptoms, especially in men, is depression. And it comes with the illness.
I didn't know that, Larry. And you know me. You've known me for 12 years.
It wasn't until I had sunk into a depression for three months in a row that I tried to kill myself twice, that I realized I needed to go get some help.
KING: Now, since multiple sclerosis is not a killer, it's not a death notice, why did you want to kill yourself?
WILLIAMS: Well, you know what, that's the thing that is so strange about this illness. For about two percent, one percent of us, it is a very fast progressing disease. And its symptoms will end up killing you very quickly.
For 94 or 95 percent of us, it is a slow and progressive disease. In my case, I have pain in my feet that I can't explain. I wish I could. And there are people out there who suffer the same kind of neuralgic pain that I do that understand.
But after it was at a 10 for two months in a row, I couldn't take it any more. I mean, literally, just the thought of putting my foot on the floor, just the thought of you touching me or somebody touching my foot that way, it was enough to bring me to my knees. And I couldn't take it any more.
So I decided, you know, on one of those really, really hard nights, tried to figure out a way to end it. And then I realized that, wait a minute. Is it really the fact that I'm hurting so bad that I want to take my life? Or was it the fact that I'm depressed?
And I started realizing how depressed I was and started seeing some people about it, started talking to doctors about it. And now, I recognize that that's one of the primary symptoms of this disease.
But so many other people sit at home alone in silence and suffer this way, and they'll never talk about it to anybody.
KING: Can't they give you strong painkillers?
WILLIAMS: Well, you know, at that point in time, they were giving me pain medication. And this is what -- this is one of those things, Larry, that's very controversial in some people's minds. I mean, I've been through the gamut of OxyContin, from Percocet, Vicodin, taowin (ph) -- you name the drug, I have taken it. And have not gotten the same relief that I get from something else.
Now, I'm not one of these people that's out here promoting, trying our best to change the laws to legalize something. But I will tell you, there is a drug that works for me, and it works for some other people in this country. And that drug is called marijuana. And I wrote about it in my book.
KING: Can you legally get it?
WILLIAMS: Well, you can in the state of California, for a prescription. And in this state, they recognize compassionate care, and understand that, well, it may not work for everybody. It works for some.
And so, a doctor -- under doctor's care, can prescribe it to me in this state, and I can take it. I can't do it everywhere else in the country.
KING: My guest is Montel Williams. The book is "Climbing Higher."
Back with more of Montel and then our panel. Don't go away.
(BEGIN VIDEO CLIP)
WILLIAMS: Five years ago I came forward and announced that, you know, to the world, that I had MS. And the first show that I ever did about this was probably one of the hardest things I've ever done in my life. Take a look at this.
(BEGIN CLIP WITHIN A CLIP)
WILLIAMS: How many people in this audience here that have MS are not getting treatment right now because you can't afford it? Anybody?
There should not be one person in this country with a disease that is this debilitating, this painful, this aggravating, that has to wake up every morning suffering.
It's ridiculous. It is ridiculous.
(END VIDEO CLIP)
(BEGIN VIDEO CLIP)
WILLIAMS: I have based my life on being strong enough to do anything. I have told people that -- you know, my first was "Mountain, Get Out of My Way." That there was nothing so big that I could not overcome it. And I truly believe that, including this illness.
But at the same time, I can say that publicly, sometimes -- sometimes when I'm alone, it's the hardest thing I do, is be alone.
(END VIDEO CLIP)
KING: We're back with Montel Williams. The book is "Climbing Higher." The founder of the Montel Williams MS Foundation. Our panel will join us in the next segment.
What about blacks and MS?
WILLIAMS: Well, it's very interesting. One of the people that's coming up here a little later on the show is Dr. Hauser, who is from UC-San Francisco. Been a tremendous help to this illness, in the sense that he's been researching MS probably for his entire career, and has found some really anomalous information when it comes to African-Americans with this disease.
You know, historically -- and doctors will tell you this -- this disease was truly only diagnosed in women who were Caucasian women of northern European descent. And from there, about 25 years ago, that would be the profile that a doctor would give you.
They also used to claim -- and they still claim today -- you'll get information from the National Institute of Health that'll claim that there are under 350,000 people in America suffering from this illness.
But our foundation, with the help of Zogby and Gallup, have tried to establish what is the true number. And we think the number is more like 1.5 million people in America suffering ...
KING: Why is (UNINTELLIGIBLE) number?
WILLIAMS: Well, you know, this disease has been considered an orphan disease for the last 20 years. And under orphan disease status, those companies that make drugs for this disease get longer time for their patents. So, you know, let's make it lucrative. Look, there's 1.5 million people. This makes it a lucrative disease.
KING: If it's an orphan disease, it's the most, best-known orphan disease in the world.
WILLIAMS: That's right. And you think about this. Seven -- 10 years ago, I would venture to say that people watching the show right now, 10 years ago, if I said MS, they would have said, oh, Jerry's kids.
But in the last year, in the last two years, everybody I know knows someone who knows someone with this illness.
WILLIAMS: So, therefore, we need to do something about it today, and stop messing around. Because this is not about just me. It's impacting our financial future as a country.
KING: Is it new to blacks? Or was it not diagnosed? WILLIAMS: I think it may be a little bit of both. I think there's something going on that is actually, you know -- or maybe we're just diagnosing it better. Maybe it always existed among African-Americans, and because we didn't get proper medical care, we never knew.
KING: Any place in the world where it doesn't exist?
WILLIAMS: You know, you don't see it in places -- there seems to be some latitudinal parallels, and in warm climates and in climates around the equator, you supposedly don't see it. But then, every single day that we say something like this, the next day, somebody comes up to say, oh, yes, we are seeing it.
There's been information that claims that it's not genetic. Yet we do know that there are some people whose parents and grandparents have had it.
KING: Do we know of anyone who had it and then didn't have it?
WILLIAMS: The thing that's so bizarre about this disease, and which will make it so difficult for doctors to finally say "cure," use that word, is because of its insidious nature.
It has a remitting relapsing component. It can come and go.
KING: You can go three months without ...
WILLIAMS: You can go three months. You could have one exacerbation, one episode, and never have another episode for the rest of your life.
KING: But you still have it.
WILLIAMS: But still have it. Now, I'll tell you something. You said something earlier when we came back from the break about the foundation I established.
And this is something I wanted to say on air and make sure people understand is, I sat on your show years ago. And if you send me some money, I will make sure that every penny you send me goes back out in the form of grants. And I'm not going to keep any of it. Don't use it for any administrative costs or anything of that nature.
We have done that and held true. Every single penny that the public has sent to the Montel Williams MS Foundation, we have turned around and resent back out to doctors, in the form of grants, who are researching and trying to find a cure for this disease.
Every bit of administrative costs for our foundation is paid for by other corporate donations, and I pay for it out of my pocket. And this is the only foundation in this country that can say that.
WILLIAMS: Every penny. KING: And you're hoping to say what, in "Climbing Higher"? Are you hoping to ...
WILLIAMS: I'm hoping that ...
KING: ... arouse people? To ...
WILLIAMS: I'm hoping that I bridge the gap between those of us in this country who are ill, and those who are providing some care to those who are ill.
You know, I blew a lot of relationships and I blew a lot of friendships, because I hid what was going on inside of me. I wouldn't tell the truth to a friend if they said, how are you feeling. I would hide about it. And then I'd duck away, so people thought, you know, I didn't like them.
WILLIAMS: Yes. Because in this country, we look at illness as weakness. And I will tell you, I may be ill, but I'm not weak by anybody's stretch of the imagination. As a matter of fact, I just came back from like a 14-day (UNINTELLIGIBLE) -- work out every day ...
KING: You think that's still true? People look at illness as weakness?
WILLIAMS: I will tell you that we do. Look at the Oscars last night. Look at every award show that we have for anything that does with -- anything that does with entertainment. There's not a sick person represented in anything that we look at and applaud. Nothing.
They had one character on television, which was the president on "West Wing," and they don't even carry that story line anymore.
KING: He had MS, right.
WILLIAMS: That's right. And we don't like -- we don't like to talk about it, because it makes us uncomfortable. Like right now, there are people who don't want to see Montel this way, because he's not the same Montel that you see everyday on the air, because it's uncomfortable.
KING: Back to a big question. Well, could there be a president with MS?
WILLIAMS: Yes, that's right.
KING: But he couldn't reveal it. And they explained why he didn't reveal it.
WILLIAMS: That's right. That's right. Well, maybe I could be. I don't know.
KING: Do you feel it's going to be cured? WILLIAMS: I think right now, we live in the best times that we could ever live in when it comes to any kind of illness. Because I think doctors right now are on the forefront. And right there -- just, you know, that final frontier. We're learning more about the body every single day. So I think there is something like a cure coming.
But I really believe what's going to happen is that doctors are going to be able to stop our symptoms. They're going to bring this disease to a halt. They're going to stop it from ravaging any further, maybe hold us all in limbo. But, hey. For me, that's all I really want. I could take the pain, as long as it doesn't get any worse.
KING: We're going to talk about depression in the next segment. How close did you come? Did you come to ...
WILLIAMS: I'd sit in the closet and spin the gun for a while.
WILLIAMS: And I talk about it in the book. I threw myself in front of a car in New York.
KING: What changed your mind?
WILLIAMS: Oh, nothing. The guy had swerved. You know, if he hadn't swerved, I probably would have bought (ph) it.
What changed my mind in the closet was thinking about my children. And really, really, really thinking about them and the love that I have for them.
But then, right behind that, I tried again. And then I realized, wait a second. You know, this is not me. Isn't me. I need to find out, why am I doing this?
KING: Do your children have it?
WILLIAMS: No, they do not have MS. And ...
KING: But they might get it, though, right?
WILLIAMS: Well, you know, we still to the day, doctors are still saying that it is not hereditary. I would say that there is something going on. You know, I have my child, my daughter, who I love dearly, Ashley knows -- and I talk about her in the book -- she has epilepsy.
And we're the first two people in my family lineage that we know of that had any kind of neurological disorder. So I don't know -- grandparents -- I don't know.
KING: Yes, if (UNINTELLIGIBLE) ...
WILLIAMS: I really don't know what the link is. KING: The book is "Climbing High." The guest is one of my favorite people, Montel Williams. And when we come back, we'll be joined by Mark Barondess, Nancy David, Dr. Stephen Hauser and Dr. Adam Kaplin.
More on this disease that deserves all the attention it can get -- MS. We'll be right back.
KING: Welcome back to LARRY KING LIVE. Remaining with us here in Los Angeles is Montel Williams, the author of "Climbing Higher."
Joining us now is Mark Barondess, who has MS himself. He is attorney and general counsel for the Montel Williams MS Foundation, and also for our own Larry King Cardiac Foundation.
Nancy Davis also has MS. She's founder of the Nancy Davis Foundation for MS. She has organized the Race to Erase MS and the Nancy Davis Center Without Walls, a network of the nation's top MS research centers.
Here in Los Angeles is Dr. Stephen Hauser, the Robert A. Fishman Distinguished Professor and Chairman of the Department of Neurology at the University of California in San Francisco.
And in Washington is Dr. Adam Kaplin. He served as chief of the psychiatric consultant to the multiple sclerosis and transverse myelitis centers at the Johns Hopkins University School of Medicine.
Why have you decided, Mark, to go -- why did you go public with MS?
MARK BARONDESS, ATTORNEY: Because I felt that people that were afflicted by the disease needed to see that people were out there like Montel, living, working, enjoying life, and that the disease did not have to have control over them.
NANCY DAVIS, FOUNDER, NANCY DAVIS MS FOUNDATION: I think I could do a lot more for people by coming forward and saying I have it. I think people relate to you as a person, and you can be an advocate and help other people. I think it helps your health get better when you help other people.
KING: Are your symptoms similar to Montel's?
DAVIS: I think I have much lighter symptoms than anybody. When I was first diagnosed, about 13 years ago, I had more severe symptoms. And through the time, I've learned how to take care of myself in such a way that I've been very lucky in the past years ...
KING: You don't have severe symptoms?
DAVIS: I have some symptoms, but very, very light. And I think it was through, you know, homeopathic types of vitamins and, you know, just having a really positive attitude and exercising, doing, you know, other things ...
KING: If you're doing OK, why do stay so active?
DAVIS: I'm afraid not to stay active, because I'm afraid what might happen if I'm not active. I think the days that I haven't been active is when I start feeling very sluggish and I lose the energy, I don't think as clearly.
And I just know that it's so important to work out and eat healthy. I have tons of vitamins. And I just -- whatever I'm doing is working.
KING: What is the definition, Dr. Hauser? What is multiple sclerosis, without being too medicinal?
DR. STEVEN HAUSER, UNIVERSITY OF CALIFORNIA AT SAN FRANCISCO: Sure, sure. RE MS is an autoimmune disease. It means that the body's defenses or the immune system turns against itself.
In MS it's the myelin that the immune system inflames. Myelin is the substance that insulates nerve cells and lets the nerve cells in our brain work well.
KING: So it can affect one person in the arm, another person in the leg and another person here, another person there?
HAUSER: Exactly. It can affect the nervous system in any place, in the brain or the spinal chord. And that's why some people develop vision problems, some people weakness, some people pain.
KING: Some people end up in wheelchairs. What's your biggest fear, Mark?
BARONDESS: Well, obviously, the wheelchair is a pretty horrible thing to think about. There's not a time that I see someone go by in a wheelchair that I don't think, before me -- that could be me.
WILLIAMS: But Larry, let me just jump in real quickly. Even though that we all kind of share that kind of a thought, at the same time, like Mark said earlier was that we still have to figure out a way to live it to the fullest.
This last week, the two of us went away for a couple of days. We got together a couple of -- a week ago, and we went up to Canada. And when he skis, I snowboard. This dude did 80 miles an hour on his skis. We clocked with a GPS.
So it's about living. It's about living. He knows he's ill. I'm know I'm ill. I'm out here chasing him down a mountain. But at the same time, I'm not going to sit back and wait for somebody to tell me to go home and rest and die. I'm going to go out here and live it to the fullest.
BARONDESS: And I'd like to point out, he never caught me. KING: Do you ever get down, Nancy?
DAVIS: You know what, you can get down. But if you get caught up in being down and feeling sorry for yourself, your life is over. You need to be positive. I don't care what disease you have.
When you're given this kind of a life sentence, you need to take the bull by the horns, no matter what it is. And you need to be really positive.
And whatever life you have left to live has to be precious. Every day is so important.
KING: Dr. Kaplin, what's the association between depression and MS?
DR. ADAM KAPLIN, JOHNS HOPKINS UNIVERSITY MEDICAL SCHOOL: Larry, depression is one of the most common manifestations that MS causes. So, compared to other medical illnesses, MS causes a higher rate of depression than any other known medical illness
KAPLIN: Well, we're just beginning to understand this. But essentially the answer to that is because of the effect of the immune system on the brain. And it's a subtle effect. It's not an effect that you could say is due to disability, because people with depression, it doesn't correlate with their disability.
And in fact, although it's extremely common, it is something that we now have abundant amount of evidence to say, it's not due to personal weakness. It's not due to a personal failure. It's due to the effect of the immune system on the brain.
KING: So, suicide is not an improbable thought, then.
KAPLIN: Well, unfortunately, suicide is the most devastating and lethal aspect of depression. And, again, suicide is the third leading cause of death in patients who have MS, looking at all age groups.
Depression has devastating impacts on people's ability to function. It causes excessive fatigue. It impairs people's concentration and sleep.
But it is the effect on -- depression caused -- leading to suicide, as Montel's story so vividly illustrates. That compared to the other manifestations of MS, suicide is the most lethal, possible manifestation of MS.
KING: Scare you, Nancy?
DAVIS: It scares me a lot. I wouldn't want to be, you know, part of that, of course.
But I just think that you have to have that really strong mindset. And you have to look at the big picture. Whatever you're given in life, you have to, you know, focus on all the things that fill your life up every day.
KING: You can do that every day?
DAVIS: Not every day. There are some days I get down. And, of course, when you're first diagnosed with a disease like this, you have every right to feel sorry for yourself. All of a sudden, what was so easy and taken for granted is taken away from you.
KING: Concerning mental health, is it true that insurance doesn't pay as much in the mental health area as it does in the physical health area?
BARONDESS: That's absolutely correct, Larry. There is something that is called mental health parity. And we don't have mental health parity.
In other words, for some reason, the health insurance companies have said, if you need mental health treatment, you only get 50 percent paid, up to a certain maximum.
Whereas, if you break your thumb skiing, then you get 80/20, which is something that people would expect.
BARONDESS: Don't ask me to -- don't ask me to explain. There is no logical reason but for the ...
WILLIAMS: (UNINTELLIGIBLE) is ...
BARONDESS: It's got to be something to do with insurance companies. And I don't want to knock on insurance companies, because I depend on them ...
KING: Even if the mental health problem is a direct result of multiple sclerosis, which is a physical disease, ...
KING: ... they won't pay but half.
WILLIAMS: That's right.
BARONDESS: It goes into a different category. Mental health treatment, like drug abuse treatment -- anything to do with the mind is treated differently, and at a really, at a lesser degree of severity, should I say, or significance, than even a broken finger. It makes no sense. None.
KING: What do the insurance companies say?
WILLIAMS: Well, we're still trying to get an answer for that one. But I think one of the things that's so important, what Dr. Kaplin has pointed out, what we get to point out now for this hour, is look at this stage right here. All three of us suffer from the same illness. All three of us suffer from it differently. Nancy has been able to deal with and cope with her depression in a way that's been very positive for her. I have 90 percent of the time. But it's that 10 percent of the time that I haven't been able to. And I'm so glad that Dr. Kaplin is now reaching out and saying this to people.
We have to understand that we do get depressed.
KING: How often do you get depressed, Mark?
BARONDESS: It might be ...
BARONDESS: ... once a week. Yes, it is often. And it hurts. It's kind of like a -- it's the anti-adrenalin, as I've described it.
KING: Could one way that add to the depression, Dr. Hauser, be the way you have to take your medicine? Don't a lot of people have to inject themselves?
KING: That could cause ...
HAUSER: I think the medicine, the uncertainty. MS can be very benign. Or it can be very severe. That weighs on people, especially young people who are just starting their lives.
In addition to what Nancy and Montel have said about the problems with mental health care, rehabilitation health care, exercise therapy for people with MS, is also an uncovered problem, that ...
WILLIAMS: I'm sorry to interrupt, but I work out every day. I fortunately try to go skiing or snowboarding as much as I can, to keep my muscles in tune.
But there are a lot of people who are suffering from this illness, at home, alone, and are not even being prompted by their loved ones to go out and exercise.
And in some cases in America, I still heard from a lady in the airport about a week ago, who told me that her doctor told her she should not exercise with MS. Which is absolutely ridiculous, because the school of thought out here now, with most doctors is, exercise helps.
DAVIS: When I was first diagnosed, they told me, go home and go to bed. Like, your life is over. It's done.
KING: No kidding.
DAVIS: And I said, well, like for how long? I said, a week, or whatever. They said, just forever, you know, you can probably sit in your bed and you'll probably be able to operate the remote control on your TV set. And I thought, what a life. I'm a young mom. I have three little kids depending on me.
KING: So you just didn't accept it?
DAVIS: And I went and got another opinion the next day, and I went the next week. I got every opinion, hoping along the way, somebody would tell me I didn't have MS.
They told me I did have it. And the most important thing you can possibly do is to exercise, and to just live your life.
If you're a busy person and you decide, because I feel sorry for myself and someone's telling, you know, don't be a mom anymore, don't run your business -- that's the worse thing you can do. You need to occupy your life.
KING: We'll take a break and we'll be back with lots more. Don't go away.
KING: We're back with a major discussion on MS. Dr. Hauser, what's the number one treatment? What medicine?
HAUSER: There are now five treatments. Interferon is the treatment that is most often used it's called Taxon (ph) is used very commonly, as well.
KING: And what does that do?
HAUSER: It's a great help to many people with MS, but it's only partially effective for most people, so we desperately need better therapies that prevent disability.
KING: Will -- is that where they inject themselves?
HAUSER: They're all inject able treatments.
KING: You inject?
WILLIAMS: I inject three times a week, usually in the stomach. You know, not usually the exact drug that we take, but I inject every single day of the week.
KING: Big needle?
WILLIAMS: You know, that's one of the things I've complained about when it comes to -- the needle it comes in, this prepackaged stuff, the kind of needles I complain about; you think they'd make an infant needle, but the thing that's so bad about it is; I said this to a friend the other day.
During one of those moments when I caught myself falling into a depression. I got to get up every day I have to psych myself up at about 6 o'clock or 7 o'clock in the evening and I'm going take this needle out, I'm going to put it into another syringe and I'm going stick it in me every day and some days when I've had a really great day that's the only thing that reminds me that I'm sick.
KING: You don't have to do that, right?
DAVIS: I have chosen not to.
KING: You -- what do you...
DAVIS: It's incredible that the drugs exist; I think they're imperfect and there's a long ways to go. They work great on certain people; they don't work great on everybody as Dr. Hauser said.
KING: Dr. Kaplin, wouldn't that alone make you depressed?
KAPLIN: Well, Larry, I think that it's very interesting because right now on your panel here you see a very important subtlety. One is that just because of the experience of having this unpredictable illness it can lead to what we call demoralization.
Which is what everybody sort of has a sense of that you know when you get overwhelmed and your coping strategies get down and Nancy Davis has been an incredible inspiration for so many people to avoid the demoralization that often happens to people when they're living life under altered circumstances with the diagnosis of MS and I you know, again, she's to be highly commended for coming out and being a source of inspiration to literally millions of people.
Montel and Mark though are talking about something different and it's important to recognize the difference. This is not just demoralization; this is a clinical depression.
It involves trouble with sleep, some neurophysiolocial differences, pain feels worse, again and I know that if you talk to Mark and Montel you'll hear about these physiological changes that they experience with their sleep and fatigue and concentration.
This is what we call the clinical state of depression. Different from demoralization and again Montel is to be commended for, you know, sort of opening up and talking about this important aspect so rather than have people sort of kill themselves in silence and suffer alone, Montel has begun a discussion about what is unfortunately a topic full of taboo which is in part is why mental health isn't covered at the same rates that other medical illnesses are because it still has a lot of taboo surrounding it.
KING: The new Medicare bill which has been coming for a lot of criticism in many circles; how does it effect the MS patient?
BARONDESS: It's the most significant legislation to effect MS patients ever.
KING: You like it?
BARONDESS: I like it; it's because it's a major step forward. Before there was only one medicine that was covered for MS patients. Now five medicines are covered.
The drugs we take -- take an awful lot in terms of research to even get them to the point that they can even be sold. I think Montel's medicine maybe costs $1200 a month. My medicine costs maybe $1800 a month.
You can see how someone not covered by insurance would be faced with a terrible situation. But luckily and this is the beauty of the Medicare bill -- now patients are limited basically to a $3,000 a year cap so anything above $3,000 a year every MS patient can have their drugs covered.
I also want to point out Larry that I hope that there's no one out there that is a patient that does not take medicine because they think they can't afford it and I want to give you a web site that would be of help -- it's a non-profit web site.
It's helpingpatients.org because the drug companies are out there promoting their products to people that cannot afford them and they will give you the medicine if you don't meet -- if you cannot afford it they will give it to you.
KING: You're making a pro-drug company statement?
BARONDESS: I'm making a pro-drug company statement.
WILLIAMS: I'll go back and make a second one. You know one of the things I made a comment about earlier I talked about the orphanage, the status of this drug -- I mean of this disease.
At the same time now that we've been able to glean that the numbers are more in the order of about anywhere from a million to a million and a half people in this country who are suffering, I applaud the research that's being done by the drug manufacturers right now, because almost every single company out there is trying to figure out a way to bring the drug to the marketplace and they deserve to make some money.
KING: Do you share that belief?
DAVIS: Absolutely. For so long I don't know why everybody has been lying about the numbers of people that have MS. It's so many more people in this country and it's unfair.
You ask yourself why would that be; why wouldn't you want to prove it. If you can prove that a larger percentage of your population has a disease the government naturally has to fund a larger amount for that budget.
For MS I think that the government spends about, you know, 46 cents a year on every patient living with MS. With other autoimmune disease it's more like $800 a year. It's not fair.
KING: What -- what more (UNINTELLIGIBLE), Dr. Hauser?
HAUSER: I think people like Nancy and Montel. KING: That the government -- would you testify?
WILLIAMS: I haven't yet, but I plan on it very soon.
KING: Would you testify?
KING: Yes. Well it's obviously why they're so aware of this and they appear in other areas not to be aware. There's been a lot of critique of the Medicare bill. In fact I didn't know it kicked in right away. I thought it's 2006.
BARONDESS: Well you know this continual urge that people will -- and I hate to be partisan here but with the Democrats saying it's not enough, it's not enough.
Well, to me a little bit in the step in the right direction is better than no step at all. And this is a step in the right direction.
Low-income people are about to receive a card that's worth $600. It's like imagine if you went to Nordstrom and someone gave you a gift card for $600. You'd -- most people would spend it. They'd use it. So the government's going to be giving you in July for $600 that you can use for medicine.
How can you knock that sort of a thing? People need medicine; medicine is important to all of it. You take it every day, I take it every day. Viewers take it every day. We depend on it.
KING: In that regard, what about this counterfeit medicine we hear about. A lot of it going on?
BARONDESS: Counterfeit medicine is probably I think the biggest terrorist threat that we face right now. And -- you know-- think about this, Larry. There was such a great concern about the mad cow disease, my God, one cow got in and we've got to trace that cow back through Vancouver, through Calvary, wherever the cow came from.
But people are allowing drugs to come in through Canada now -- they're suggesting that's a good idea. And it's not importing -- but the thing about it -- its not importing drugs from Canada -- it's importing drugs through Canada.
Canada is nothing more than a...
KING: But the pharmaceutical companies also sell to Canada and Canada sells good drugs down that are much less.
BARONDESS: Absolutely; they sell drugs but think about Canada's system. Their health care system is funded by the state. By the government. Our system is not funded by the state. So the costs are ordinarily lower.
The drugs that we're talking about are drugs that are coming in through Internet pharmacies. It's unbelievable to me; I -- I don't trust them. I get ten e-mails a day telling me that I'm impotent and I need Viagra. I mean it's unbelievable.
KING: Let me get a break and we'll come right back with our panel on multiple sclerosis; don't go away.
(BEGIN VIDEO CLIP)
KING: Did someone say to you one day, Ms. Garr, you have multiple sclerosis.
TERI GARR, ACTOR: Not...
GARR: Wait a minute. No, not Ms. Garr. They said "hey, you." Hey you with that weird hair. No.
They yes, I mean, I -- I think.
KING: I mean, was it -- was it kind of a -- did you -- were you frightened? Were you scared?
GARR: Oh, yes. I mean, I think everybody is scared and frightened when they hear something like that. And that's because there is so much -- you know there's not a lot of information out there about it.
(END VIDEO CLIP)
KING: We're back. Another famous person who sort of came out of the closet saying they had MS was Teri Garr. Did it on this program, under your urging, Nancy, is that how it happened?
DAVIS: Well for many years she had MS and was sort of in denial that she had MS and ever since she came out I think it's been wonderful for her health and she's been such a great inspiration for other people with MS. It's given her a new life and just to see the honesty and she's such a beloved actress but just a very tender, kind funny person. She's terrific.
KING: Is stem cell, Dr. Hauser, going to be the answer? Or cure?
HAUSER: May not be the answer but it's a very important part of the cure, Larry.
KING: You agree, Dr. Kaplin?
KAPLIN: Absolutely. I think that stem cells -- you know -- the one thing stem cells have going for them is that they are intrinsically smarter than we are. I mean they know how to go to regions of injury and they'll do all sorts of reconstructive things that as we get more and more sophisticated about understanding how to put them to work for us I think there are very important gains to be made that will be dramatic and important.
KING: One thing I don't want to leave with in regard to counterfeit drugs. There are many government mayors and governors in some cities that want to be able to say let's bring them in because they cost so much less.
KING: I don't hear counterfeit discussed in that way, but you're not against people who are able to get something for less getting it.
BARONDESS: Oh of course not but I want people to understand that they have alternatives to resorting to the Internet or to getting on a bus and driving to Canada. I could show you numerous examples.
One pill I'll never forget was an anti-inflammatory medicine that was ordered over the Internet that came through a so-called, you know, Canadian Rx Web site. It was filled with floor wax and yellow leaded highway paint. Floor wax and yellow leaded highway paint.
That's outrageous so to the politicians that wanted to import drugs from -- from Canada instead of through Canada...
KING: Well isn't there a way to check that the drug was made by Pfizer and is in the Pfizer box?
WILLIAMS These counterfeiters have really done a great job; we have done a show on this ourselves.
KING: Counterfeiters do that good.
WILLIAMS: In the United States, not from outside, counterfeiters here. We've had, you know, people who live unscrupulously taken medications that they have to sell to patients and -- and -- added saline solution to so it can stretch out. These are people who work here in this country so it's almost...
BARONDESS: Right and as a matter of fact right here in California there was a major arrest that took place because a printer whom these counterfeiters were stupid enough to send out a counterfeit drug package called up and said wait why is Joe Smith from Santa Barbara, California sending me a manufacturer list showing that the dangers of drugs?
KING: Does this -- did you pause when you write a prescription, Dr. Hauser?
HAUSER: Well this is very scary I think the problems are particularly severe for the less regulated homeopathic drugs than for the regular drugs but this is a very big problem, Larry.
BARONDESS: I want you to think about when you go to your drug store/pharmacy do you want to question whether or not you're getting the real thing? I don't think so. KING: No. Is life shorter because of this, doctor? Is your life expectancy shorter?
HAUSER: Not very much, Larry. Most people with MS live a full life. The problem is that the uncertainty and the disability over time make it impossible to plan a life the way other young people can. And it -- you can imagine the effect that it has on marriage decisions, career decisions. It's very devastating because it strikes at the beginning of adulthood.
KING: Does it have an effect on sex?
WILLIAMS: Well you will, before you go further, we've started to see that the numbers of the ages of people that are being diagnosed with this illness are going down. For the first time in a long -- I mean, the numbers of people between the ages of 14 and 20.
DAVIS: Children are being diagnosed. They used to think if you were not at least 20 whatever you have was not MS now they know these exact symptoms are being -- you know -- they're showing up in all kinds of little children.
I guess even at the age of two and now they're trying to experiment with some of the drugs that are working on adults will work on children on how to get the right amounts of those medications but they negated that idea for so long and I think at least ten percent of people that have MS are children.
KING: When we come back in our remaining moments we'll ask about optimism and pessimism with regard to cure. Don't go away.
KING: I want to cover a couple of other bases before we leave this topic and we'll be doing lots more on it.
That necklace is -- proceeds go to -- you designed that?
DAVIS: It's called peace and love jewelry by Nancy Davis and part of the proceeds will benefit MS research.
KING: Number one symptom, Dr. Hauser?
HAUSER: Visual symptoms. Double vision, a loss of vision, numbness and weakness. Those would be the top three.
KING: Go to your doctor, all right. What doctor do you go to, a neurologist? Who do you go to?
BARONDESS: You would go to probably a general practitioner first and then general practitioner then general practitioner is supposed to refer to you over. Problem is, a lot of general practitioners don't recognize what the symptoms of this disease are and I think a lot of people remain undiagnosed as a result of that. DAVIS: Also most people in most cities around the country if you live in L.A. and New York a big city you have -- you know you're privileged to be able to see a great neurologist like you know a Dr. Hauser, but if you live in a little city you're lucky to even go to an eye doctor, a general practitioner and a lot of doctors around the country are not as educated as Dr. Hauser and they don't really know the latest and...
BARONDESS: Well, the symptoms, Larry, are different for everyone and probably a lot of the ones that Dr. Hauser pointed out are the most classic ones I just want to say fatigue, tingling, numbness, loss of feeling, all of these are potential indicators of MS and of course the depression.
WILLIAMS: And (UNINTELLIGIBLE) literally for a period of months would walk around get up every single morning and my feet were so -- hurt so bad I couldn't put them on the floor and then of course as soon as I -- sciatic nerve -- OK -- got it -- and then I was starting to realize that also is just one of those symptoms several of us who have suffered have (UNINTELLIGIBLE).
KING: When's the next race -- race for MS?
DAVIS: This May 14. In Los Angeles at the Century Plaza Hotel and it's called Glam Rock to Erase MS.
KING: Glam Rock?
DAVIS: Glamorous Rock to Erase MS, so it promises to be a great event.
KING: Dr. Kaplin, you wanted to add something?
KAPLIN: Yes, I did, just when you know you hear those symptoms and how common they are and you hear those described one thing I just definitely want to make sure that the cross is that as Montel has demonstrated and they're both being vocal about depression leading to suicide is one of the most lethal of symptoms but it's also one of the most treatable symptoms that you can expect with proper treatment and proper management to put someone in complete remission with respect to their depression.
KING: So antidepressants?
KAPLIN: Yes, through antidepressants and talk therapy, a combination of the two and in fact work that Dr. Stephen Hauser has done with colleagues over at UCSF has actually suggested it may be a two-way street that MS causes depression but treating the depression may in fact improve the immune system and make it less aggressive and have beneficial effects on MS as well.
KING: And do a lot of research I bet.
WILLIAMS: Dr. Hauser has also done some research that we also might be able to help with here also Larry and there's a study with African-Americans with this disease because again this was a disease that was not seen in people of color maybe 30 years ago they will put up a web site maybe that people can contact you if they're African- American in the United States with MS so we can do a little bit more research.
HAUSER: That would be grand, thanks.
KING: Do you have Web site?
HAUSER: We do. 1-888-MS-GENES would be a direct telephone number.
KING: All right now being honest. Optimistic or pessimistic.
BARONDESS: Extremely optimistic.
KING: About a cure. In your lifetime.
BARONDESS: Oh I think there will be a cure in my lifetime and every MS patient I think has to remain optimistic and they have to be an advocate and out there advocating the research.
KING: Well it's a true optimism or is it you have to be optimistic?
BARONDESS: I believe that I'm going to get better.
KING: Dr. Kaplin what do you believe?
KAPLIN: I am very optimistic that we will get as Montel discussed earlier initially ways of putting people into longer-term remissions; spreading out the periods of exacerbation. I am very confident though.
Doug Kerr (ph) one of my colleagues in neurology is working with Peter Kalabrezie (ph) at Hopkins on a high dose pyroxene treatment that itself may lead to long-term remission and there's great research going on that a number of different facilities throughout the world working on this I think it's just a matter of time before we get it.
The question is you know for people who have MS they don't have an exceptional amount of time because they need to avoid that next insult that may lead to permanent disability.
WILLIAMS: Funding, funding, funding. Whether we get it from the National Institute of Health or you can fund you know a foundation like the one I have and know that every single penny you send to me will go right back out into the hands of doctors like this guy right over here so he can hire researchers that come in and twenty four hours a day and research this disease. DAVIS: We also have a foundation called the Race to Erase MS and we're going to hurry across that finish line and find a cure for MS and we fund six of the best doctors around the country and one of them is Dr. Hauser.
KING: You get money, doctor.
KING: Are you optimistic?
DAVIS: Also Harvard...
KING: Are you optimistic?
DAVIS: I wouldn't do this if I wasn't 100 percent optimistic; I know we're going to cross that finish line; we are going to find a cure for MS. So much has happened.
KING: There's one day going to be an announcement.
KING: Like polio.
DAVIS: I believe so. In the very near future.
WILLIAMS: You know I would hope so and I would -- I will back everyone and say yes I'll back these guys but I think what's going to happen is the researcher tells me that we're going to come up with a lot of different things that will stop the symptoms, bring this thing into a remittent stage, then 20 years from now -- because it's going to take that long for doctors to actually truly say this disease is cured because you have to -- this over a period of time and make sure that I just didn't go into remission.
So 20 years from now, yes. I think they're going to say, boom, my children will never have to...
BARONDESS: The key to this is going to be research and its research that's being done through the private sector, through people like Stephen Hauser through the pharmaceutical companies. They're the ones that are going to find the cure.
KING: Any chance of prevention Dr. Hauser? A vaccine?
HAUSER: I think prevention and cure are closely connected. This disease can be cured and prevented if we can understand it. To understand it we need money and people.
The federal government commits about one and a half percent of its health care budget to R&D, research and development, and the company wouldn't make it, especially in a high-technological area committing one and a half percent of its budget to research. KING: Thank you all very much. We've just touched the subject.
Our guests have been Montel Williams; the book is "Climbing Higher."
Mark Barondess; Nancy Davis of the Nancy Davis Foundation for MS; Dr. Stephen Hauser, Department of Neurology, University of California San Francisco; and Dr. Adam Kaplin, Chief Psychiatric Consultant, Johns Hopkins University School of Medicine.
Thank you very much for joining us.
Another LARRY KING LIVE tomorrow night and Monday night -- Suzanne Somers.
Stay tuned through CNN around the clock, your most trusted name in news. Good night.
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Hauser, Adam Kaplin, Mark Barondess>