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CNN Larry King Weekend
A Look at Multiple Sclerosis
Aired April 28, 2002 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
LARRY KING, CNN ANCHOR: Tonight, four high profile people fighting one still mysterious disease. TV talk show host, author, activist Montel Williams, who has multiple sclerosis. My good friend and lawyer Mark Barondess. He has MS too, but he hasn't let it slow him down. Alan Osmond, one of the famed singing Osmond Brothers, another MS patient. And the amazing Nancy Davis. She also has multiple sclerosis. Her foundation is behind the famed Race to Erase MS.
Plus a medical man on the front lines of the MS battle, Dr. James Simsarian, president of the Consortium of Multiple Sclerosis Centers. A very important hour ahead next on LARRY KING WEEKEND.
Good evening, and welcome to this very special edition of LARRY KING WEEKEND, looking at a puzzlement. The puzzlement is multiple sclerosis. The guests have already been introduced.
Before we talk to them, let's go right to Dr. James Simsarian in Washington, the neurologist. What are we talking about, doctor? What is multiple sclerosis?
DR. JAMES SIMSARIAN, PRESIDENT, CONSORTIUM OF MULTIPLE SCLEROSIS CENTERS: Larry, multiple sclerosis is a chronic, lapsing, inflammatory disease of the nervous system. It's a disease for which we do not know the cause, for which many people are working to find the cure. It's a disease that affects people during the most productive years of their lives; in the age of 20 to 40 usually is the time when we see the first symptom.
The disease affects the mylan (ph), which is the lining cell -- lining part of the nerve cell, may affect the aligodedenobilio (ph) cells in the nervous system or -- and may affect the exon (ph), which is part of the nerve as well.
KING: Staying away from strict medical terms, what happens to the person who gets it?
SIMSARIAN: The person who gets multiple sclerosis has a variety of systems. One may lose vision in an eye. We call that optic neuritis. They may have double vision, loss off of sensation in one of the extremities or on one side of the body, loss of strength, discoordination, double vision, slurred speech, unsteadiness walking.
KING: Are there many, many aspects of it -- like is Lou Gehrig's disease an aspect of multiple sclerosis, arterial sclerosis?
SIMSARIAN: No. These are distinct diseases. Multiple sclerosis is a specific disease, and it has many (UNINTELLIGIBLE) manifestations. So often the disease is confused with other illnesses earlier on before a person has had multiple systems.
KING: Montel, how did you know you had it?
MONTEL WILLIAMS, TALK SHOW HOST: You know, I tell you, Larry. I probably, over the course of the last 20 to 25 years, thought there was something wrong, kept going to see doctors. I had some weakness and I had what was considered, I thought, was just a sciatic nerve problem or a nerve problem where I had some pain in my feet.
KING: Kept being misdiagnosed?
WILLIAMS: No big deal. I was a heavy weight lifter. And a lot of people know me, I lifted weights my whole life and I was really, really a heavy, heavy weight lifter so every time I'd go see a doctor they'd say well of course you would hurt. Look at you. How much weight are you putting on your back? And I was squatting maybe 500 pounds at the time. And so it was always kind of linked to that.
And then, oh, about three years ago I had what was an episode that I had been having and didn't know every two years for my whole life but I had one that was worse bout in my life. And I just zapped me strength-wise -- I had a day where I literally got off an airplane in Utah. I was walking on a set of "Touched by an Angel" and I was walking out there to start taping that day and my feet started hurting. Within three hours, I literally couldn't bare putting my feet on the floor, couldn't bare putting shoes on.
So I was like trying to figure out who to get through this and it was such enough pain that literally I was crying probably five to 15 minutes every hour.
KING: Nancy, how did you find out?
NANCY DAVIS, HAS MULTIPLE SCLEROSIS: I had a ski accident and I tore my ACL and about three weeks later ...
KING: How long ago?
DAVIS: (UNINTELLIGIBLE) exactly 11 years ago. I was skiing and I had an accident. I had to have knee surgery. I had a knee brace on my knee and I started losing feeling in my fingers in one hand and then my whole hand and then the other hand would start, three days later I lost the feeling on my hands and I lost feeling in my stomach then my eyesight started to go. And I knew that having a knee brace was probably cutting some nerve off. I went to a neurologist and they diagnosed me very quickly, which most people it takes even years, like in Montel's being to diagnosed, my happened within days.
KING: Did they relate it to the ski accident?
DAVIS: They did. You probably get MS when you're around age 15 and it lays dormant in your body until somewhere between the ages of 20 and 40 and by having an accident, a bad virus or, you know, a dramatic thing happen in your life, it kicks it off. And it does hit young adults usually between the ages of 20 and 40.
KING: Alan?
ALAN OSMOND, HAS MULTIPLE SCLEROSIS: Yes. I was on stage and playing my trumpet and I noticed I couldn't play it as fast.
KING: How long ago?
OSMOND: Oh, about 15 years ago. And I also noticed when I walked around my right side was affected and my foot would just like catch. I thought, oh my goodness, I'm embarrassed. I keep tripping. Something's wrong. So we just did tests, tests, tests. It took a couple of years, maybe three years. They didn't know what it was. I was grateful they had a name for it. I thought I might have a brain tumor.
But it's something I can live with. I always say too though that I may have MS but MS does not have me and I think that is the key for my success in whatever I've got. Mental positive and family support, prayer, it works.
KING: Was the diagnosis quick? Did they know right away you had ...
OSMOND: No. No. They said come back six months, come back six months. Well -- and then they didn't know what to tell me. And they said well don't exercise it might be hard for you. And I, wow, that can't be right. So I just kept trying things as long as there wasn't a negative affect I'd move forward with it.
KING: Mark, I guess you're the most recent acquirer?
MARK BARONDESS, HAS MULTIPLE SCLEROSIS: I am the most recent acquirer and I'm just reflecting upon Nancy saying that it was a dramatic event that must have caused it and now I'm thinking that maybe it was law school that was probably the (UNINTELLIGIBLE).
KING: When did you first notice?
BARONDESS: Rose and I, my wife, were flying to Hong Kong for the Y2K New Year's celebration and I sat on the plane all of a sudden my left hand started shaking. And I couldn't stop it from shaking. And my first thought was that my father suffers from Parkinson's and I thought this must be Parkinson's disease and I was concerned about it. So I went to the doctor and following ...
KING: Did it stop after a while?
BARONDESS: It did not stop. And my evaluation process took approximately eight months mostly because I was scared and didn't want to have to a lumbar puncture or spinal tap, as it's called.
KING: All of you have had that? DAVIS: I refused it.
WILLIAMS: No. I refused it also. That's what Mark is talking about. I don't mean to cut Mark off but that's part of the biggest problem is the fear because there's not enough information provided to us. When you step into that doctor's office and they first started going poking and poking and going, hmm. And then they come back in and go, well you know what? You have a mess.
KING: Doctor, is it often misdiagnosed or failed to diagnose early?
SIMSARIAN: Early on, there's -- you've heard here the symptoms can be very fleeting or they can be difficult to diagnose. It's often hard the first time you see someone, although in many cases, we have a series of symptoms such as Nancy Davis described where the symptoms come together. And we hope that the doctor can convey to you sometimes an uncertainty but often once the diagnosis is made, we need to work together to affect and to act positively to manage the disease in your life.
KING: And there is no cure, right doctor?
SIMSARIAN: There is no cure. We're hoping that through research, the kind of research that you and the people on your panel are supporting that one day we will have that cure.
KING: Now have there been improvements, Nancy, in treatment?
DAVIS: I was diagnosed 11 years ago and the doctor told me go home and go to bed, basically your life's over. He said I would be very fortunate because I could have people bring me food in my room but I'd probably be able to operate the remote control on my television set. I was a young mom of three kids and that terrified me. I started going to the library and trying to get all kinds of information. It was really, really hard to find out what this disease is and what could be done. There was really nothing.
What's exciting is in such a short time, five drugs are now -- now have FDA approval. As of six weeks ago, the fifth drug got FDA approval, which is wonderful. And ...
KING: And the drugs do what?
DAVIS: The drugs are suppose to help stop the progression of MS. They work on an autoimmune response in your body.
KING: So it doesn't get worst faster?
DAVIS: So it doesn't get worse. They have found, too, from doing the human genome study that's there four and possibly up to 10 completely different diseases all lumped together being called MS. And now doctors can see which type you have and prescribe the correct drug that might work on you or maybe no drug works on you.
KING: We'll pick right up. We're doing the whole program on multiple sclerosis tonight. If you want further information I understand you can call SpotlightHealth.com, that's an organization, Montel's a part of it that provides information in many areas and multiple sclerosis is one of them. We'll be right back with more. Don't go away.
(COMMERCIAL BREAK)
KING: We're back with our discussion multiple sclerosis. Doctor, before we go back to our panel and anyone can jump in at times here, is it fatal?
SIMSARIAN: Multiple sclerosis is not a fatal disease. No, it is not. We have -- as Nancy Davis said, we now have medications that will alter the course of the disease and have been shown to retard the development of disability.
KING: So it doesn't cure but it doesn't kill yet? I mean, it doesn't ...
SIMSARIAN: It does not -- it does not kill.
KING: You just -- you just don't have a very good rest of your life?
SIMSARIAN: But it depends on the individual. We have many people who, like Montel and the people on your panel are going on, living a very good life, living a very healthy life.
KING: Yeah. With bad days?
WILLIAMS: But you know what? That's -- that's one of the questions we've got to get back to. One of the things that multiple sclerosis doesn't kill. Well, right now it doesn't, but there are people who are dying right now from all of the symptoms that this disease can bring together. I see people all the time who's parents, who's mother, who's brother have just died and they've had multiple sclerosis for the last 30 years and now ...
KING: So what does their death certificate say?
WILLIAMS: It says ...
DAVIS: The various symptoms that had arisen from that. And I mean, depending on where these scleroses hit you; they can affect a completely different part of your body. If they go up or down, a millimeter to the left, right, they affect -- the can affect someone's breathing.
WILLIAMS: But the good thing, Larry, is that we're living in such an exciting time. There is so much research that could done and is being done but so much more that needs to be done. That's the reason all of us have ...
KING: What's the worst system you have?
OSMOND: Well, mine's on my right side. Mine's progressive so it just kind of normally gets worse, worse, worse.
KING: Which like what happens on your right side?
OSMOND: Well, not move as fast. But you know, I have found that lumping the people who have MS, when I talk to them, that they want hope. They want some faith that things are going to change.
KING: Isn't that with all disease?
OSMOND: And so I try to tell them that, you know, that's been my strength I think. I couldn't go on stage or couldn't raise a right hand very high on my right side so we changed our choreography for the left hand. But see that was hope. And they said I'm not going on stage without you, Alan.
KING: You get down days, Mark.
BARONDESS: I have down days. The disease affects me most with the fatigue, very tired. It affects my memory. And as you know, after 17 years as a trial lawyer, I had to basically say I could no longer do it when I had a ...
KING: Because you can't go to court anymore?
BARONDESS: I can't go to court anymore because I can't take the chance that I forget to ask a witness the correct question and I have a client that suffers as a result of it. So I had to make that decision.
KING: Is depression common, Montel?
WILLIAMS: I think it is. I think it is. And from all the people that I hear from and one of the most pervasive comments that I get is that I don't have any support. There's no one to turn to. A lot of us are very lucky. Our families stayed there and backed us up and we have a core group. I will bet you everybody that you see that does well with MS has a group of friends and a core group of family that's there pushing them on, cheering them on, keeping them going.
KING: Any kind of family, daughters, uncles?
WILLIAMS: Yes. Daughters, uncles, family -- just family to get them going.
BARONDESS: And another point to note is that a lot of these medications and there are many of them, so that do and some that don't, one of the major side effects of these drugs is depression. In fact, if you look at the warning label on some of the medicines, it even says suicide as one of the possible side effects.
OSMOND: That's why I didn't take some of the drugs at first myself. I don't want to go there. I'll tell you. Hang in there.
BARONDESS: But you know other people -- each drug reacts differently to different people. And we're so lucky that the -- that there are so many people that are out there now working to try to find a cure. Each one of these drugs reacts differently. What Montel takes works for him, might not work for me or for Alan or for Nancy.
WILLIAMS: And we should clear something up. I mean most of the information that's been out here in the last 10 years about this disease keeps quoting a number of Americans that suffer at under 300,000.
KING: Yeah, we don't know the amount?
WILLIAMS: Well last year, Zogby poll, thanks to Nancy Davis and her work and our work together, we had Zogby Corporation did a poll and came back with a number of 2.75 million suffer right now. There's another company that's going to do another poll with Gallup. If it's over 2.75 million suffer that means there are more people suffering from MS in American than any one of the major diseases that our government funds the most for.
KING: Do you see it a lot, Dr. Simsarian?
SIMSARIAN: We see a lot of people who come in with symptoms. They have not been diagnosed and we know that we're only touching the tip of the iceberg. That there are many, many people who will -- who do have multiple sclerosis that we do not yet diagnosis and these people need to get the message about the disease. And they need to understand that the disease modifying therapies have been shown to positively slow the progression of disease, gives people a hope.
KING: You jump in.
DAVIS: Eleven years ago, when I was diagnosed, they claimed that 350,000 people had it. At that time, it was very hard to get a MRI. They were very expensive and they didn't have them everywhere. Now they really do have them everywhere and they are diagnosing people at a much faster pace than they ever did. And MS is definitely on the rise. At anyone of these great centers, they will tell you their numbers have climbed enormously.
There's a lot of validity to what the Zogby poll says and if you ask any doctor, these numbers are based on some antiquated thing that just doesn't work. But what's so unfair is any other disease getting funding now, I guess you'd say the more popular diseases, are getting -- they're getting like $800 per person a year whereas MS is getting about 46 cents per person in research.
KING: From this government funding?
DAVIS: Yeah.
KING: Why so little?
WILLIAMS: Well it's because, you know, we have always traditionally thought it affected so few people. So if it's a disease that's ...
KING: (UNINTELLIGIBLE) like a -- what do they call it?
WILLIAMS: ... orphan disease. KING: Orphan disease.
WILLIAMS: And the truth of the matter of is I don't -- I just show -- I tape three shows a day, two days a week. I have a different audience for every show. Two hundred people every single time. I say how many of you in this audience know someone who's affected by MS and every hand goes up everyday. If I asked the question right now of the people who are tuned into your show, they're going to call you and say, Montel -- Larry, there ...
KING: You had no interest in this drug before -- or in this disease before you got. By no interest, you knew it was out there but you didn't know what it was, right?
BARONDESS: When I first heard the words multiple sclerosis, I instantly thought Jerry Lewis. I had no idea. I thought it was muscular ...
KING: Muscular dystrophy.
BARONDESS: I thought it was muscular dystrophy. I instantly pictured myself in a wheelchair, almost started crying. I had no idea.
KING: Is the worse case scenario, doctor, wheelchair? Is that usually -- when it gets real bad, is that what happens?
SIMSARIAN: We have people who progress and they are in wheelchairs later on in the disease. There are different types of -- that we call the relapsing remitting then the secondary progressive where there is an ongoing weakness or a progression of symptoms.
The primary progressive people get ongoing continuing progression and some people will have a progression with relapses intermixed but not everyone is in a wheelchair. And the reason this disease is so under diagnosed is that people, one, don't recognize the symptoms and two, the majority of people we treat in our practice, the majority of the people that are treated at the various centers that are members of the consortium are people who are out functioning, who, like Montel, are doing shows, going to work, raising families. People can live a very good life with multiple sclerosis.
But as Mark said, we're afraid of the disease. We don't come forward. We really need more education and publicity so that people understand this disease.
KING: We're trying to do that tonight. And we're going to take a break and come back. By the way, there is the Montel Williams MS Foundation, Nancy Davis is the founder of that Nancy Davis Foundation for MS, Alan Osmond has Oneheart.org and thefamily.com, which deals with how to struggle with this and Mark Barondess is the general counsel for the Montel Williams MS Foundation and he is in the firm of Christensen, Miller based in Los Angeles.
And for any information so we all focus it to one central point, you can punch in SpotlightHealth.com. We'll be back with more. Don't go away.
(COMMERCIAL BREAK)
KING: Mark Barondess, since for a long time it was construed like an orphan disease, how do you get these pharmaceutical companies to work and develop drugs?
BARONDESS: Well, they are working to develop the drugs.
KING: They know how many people have it?
BARONDESS: And it's important. There is -- what concerns me more than anything else and I never would have had an interest in this but for the fact that I was diagnosed with this disease and it doesn't just apply to multiple sclerosis. It applies to every disease. Is that there's presently legislation that's pending on Congress and that legislation would basically restrict the amount of time that the drug companies would have to enjoy the patents.
A patent is granted for a period of 20 years and ...
KING: So if you invented a drug, no one else can make that drug for 20 years and then it can go generic?
BARONDESS: Right. Well from the time the molecule -- that the first molecule is discovered, the scientist comes up with the idea then you have -- that's when the patent time starts. From that point, it takes generally, on average, 11.2 years before that drug will ever get to market.
KING: So you're marketed about nine years?
BARONDESS: You get about nine years. Now there's legislation ...
KING: Which says?
BARONDESS: ... pending to shorten that period of time. If it costs about $800 million to invest into a drug, what drug company is going to be interested in attacking a cure for MS or all these other diseases.
KING: The guess would be, Montel, the reason is it's expensive and a lot of people have MS and can't afford the drug so if you go generic it'll get to them faster?
WILLIAMS: Well that's what ...
KING: Is this like catch 22?
WILLIAMS: I think that's what part of the thought process is but every single one of the drug manufacturers has a program where, if you are a person who can't afford the drug, you can at least apply to receive it. That's there and available.
KING: You mean an (UNINTELLIGIBLE) can get a drug that you may pay $10 for?
BARONDESS: There is no American out there, Larry, that has to go and suffer from the symptoms of MS because they don't have money.
KING: Doctor, do you agree.
SIMSARIAN: Absolutely. The drug companies have been very good at making this drug available to my patients who do not have the resources to purchase this on their own. And they've been very open in providing the drug. Patients can get the various disease-modifying medication.
WILLIAMS: But see I'll tell you something about that though, Larry. One of the things that really disturbed me and I said it to Mark and you know, -- urging me a year ago, a year-and-a-half ago when I first was diagnosed and I said I didn't want to talk about the medication that I take because if I talk about it somebody will run out that has MS and try to take the same one that Montel takes hoping that they'll look like me in that commercial. And the truth of the matter is it won't affect everyone us the same. But the truth of the matter is now for the last few years; I've been taking something.
Now a couple weeks ago, I'm in my studio. A woman came up to me really in bad shape from MS, having difficulty walking, tremors and she said to me, Montel, just please if you could me what it is you do. And I said, you know what? OK. I'll tell you what the drug is I take. This is what I take. And she said well what is that? I said, no, this is what it is. It's one of the ABC drugs. I said it again. She didn't know -- her doctor didn't even know to give that as an option. There are (UNINTELLIGIBLE). There's Avonex, Betaseron, there's Copaxone, which is what I take.
(CROSSTALK)
WILLIAMS: And that's not ...
KING: What do you take?
OSMOND: Well I think -- we're in a study. People aren't trying to help either. I volunteered. I didn't know what it was.
DAVIS: I don't take anything.
WILLIAMS: Nancy stayed off the drugs. I -- because my -- my bouts were coming cyclically almost every single two years in February and it had done that for the last 20 years of my life. I finally decided I need to put something in this to slow that down because that also, and I think the doctor would agree, each time you have a major bout, there is a setback and that setback can debilitate you even more.
So I have not had a bout since I started taking it. But somebody else needs to check with their doctor before they start taking Copaxone but that may be an option that they need to know about.
BARONDESS: See, Montel did something very prudent. He waited and saw how the drug affected him for a period of two years and said Copaxone ...
(CROSSTALK)
BARONDESS: Yeah. And then he said Copaxone is the choice for me. For me, when you ask me what drug am I taking. I've tried several of the drugs and I'm still not necessarily satisfied with any of the drugs that I have tried so far so I would never say ...
OSMOND: I may be on placebo. I mean, I'm in a study -- I don't even know, but I'm taking the shots everyday. I'm just over two years doing it.
KING: Do you feel better at times?
OSMOND: I can raise my hand.
WILLIAMS: And your point is that people need to know ...
OSMOND: Something to take that may be (UNINTELLIGIBLE).
KING: How do you do it without anything?
DAVIS: When I was first diagnosed, I had a lot more attacks and I think -- and I think -- we all agree with this. It's very important to be proactive and live your life. It's important to exercise everyday. You need to not to do things that challenge your immune system. You can't smoke. You can't drink. You have to avoid the heat.
KING: Well what symptoms do you get?
DAVIS: They vary. Sometimes I'm very dizzy. My eyesight goes. I have numbness in various parts of my body.
KING: So why don't you say let me try a drug? I don't want this.
DAVIS: Because in the very beginning I use to have a lot of attacks. I had an attack recently, in December, but I hadn't had an attack in four years by doing what I do. I take a lot of vitamins. I exercise everyday. Drink tons of water. I don't do anything that lowers my immune system. I have a ton of vitamins. Not that that's correct for everybody else though.
WILLIAMS: I'll add to that. Now I feel like we all are responsible for our individual health care and if I'm going to go to war, like we just did in the Middle East, we take the Army, Navy, Air Force and Marine Corp. Well you know what? For me, I need to have that traditional medication. I need to have the vitamins. I need to ...
KING: But the symptoms for her is not that same as you use?
WILLIAMS: That's right. That's right. That's right. And I may need ...
SIMSARIAN: Larry, you know -- you're seeing that these people are taking control of their life.
KING: Right.
SIMSARIAN: They're looking at their other symptoms. They're -- you know, it's not just taking the ABC-R drug. It's taking control. Working on the other symptoms. Exercise. Physical therapy. Energy conservation. These kind of things that people are doing. And we -- we feel that there is a very important role for these medications in the management of people with multiple sclerosis.
KING: Do we know, doctor, why these people have it and I don't?
SIMSARIAN: We don't know for sure. We don't know what the cause is. We feel that there is an event, something that occurs early in life that affects the immune system such that later in life the immune system is challenged and reactivated and the body is fighting against itself.
KING: Do we think it's genetic?
SIMSARIAN: There is probably a genetic basis underneath that. We know that if one set of an identical twin has multiple sclerosis, there's a much great instances in the other identical twin. And as Nancy Davis mentioned in the genetic studies, we're looking at trying to find the clue as to why.
KING: Nancy.
DAVIS: I grew up in Colorado. And the instances in Colorado is 10 times higher. I found out in my graduating high school class of 100 people, five other people have MS. You have a genetic predisposition to getting it plus being in an environment. Place like Norway, Sweden, the instances is 10 times higher. So it's a multi- factorial reason why you get MS.
WILLIAMS: There is a geographical correlation. You can go to Canada and there is areas in Canada, like Winnipeg, which has the highest concentration in a cluster.
KING: What's the area with the lowest?
WILLIAMS: Down by the equator.
KING: Equator?
WILLIAMS: Well, and also if you get anywhere in African. Routine ...
(CROSSTALK)
WILLIAMS: African-Americans should not have the disease.
KING: Guatemala -- you should be in pretty shape?
WILLIAMS: Could be. But the ... KING: We'll get a break -- hold it. We'll get a break then we'll come right back. As we go to break, here is Nancy Davis speaking publicly about MS.
(BEGIN VIDEO CLIP)
DAVIS: Welcome to the eighth annual race to a race MS. When we reflect on our lives, we all seem to measure events in decades. It's been 10 years since the day I was diagnosed with multiple sclerosis. At that time, I was told in 10 years I would not be able to walk and that I would not be able to get out of bed but that I was very lucky because I would be able to operate the remote control on my TV.
Norman Cousins (ph) said: "Don't defy the diagnosis, try to defy the verdict." Today, as you can say, I am blessed to have defied the verdict.
(END VIDEO CLIP)
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
(MUSIC)
(END VIDEO CLIP)
KING: That rock star, Montel Williams. That's from VH1's Rock To Erase MS 2001.
And our panel consists of Montel Williams, the Emmy award winning TV talk show host. Mark Barondess, the attorney with Christensen, Miller in Los Angeles. Alan Osmond, the eldest performer in the original singing Osmond Brothers who composes, produces and directs as well. Nancy Davis, founder of the Nancy Davis Foundation for MS, has organized the Race to Erase MS and The Center Without Walls.
All four of these people has MS, and our specialist in Washington is Dr. James Simsarian, neurologist and president of the Consortium of MS Centers.
I think anyone watching now would say all of you look terrific. None of you have shown us a symptom -- you have raised your right arm, but ...
OSMOND: You just got to keep trying.
KING: What if someone looked in right now and said these people look fine?
WILLIAMS: But see, what they don't understand is that though I may not complain about it, Mark may not complain about it, Nancy may not complain about it ...
KING: Or Alan don't complain about it.
(CROSSTALK)
WILLIAMS: I get up every single morning not wanting to get out of my bed, not wanting to put my feet on the floor. There are some nights when I go home and at 6:00, 7:00 at night I really -- it's hard pressed for me to be walking around, but I do it anyway.
You know, when people come up to me -- I've had some people who have MS come up to me and say, you know what, you're doing us a disservice. It's like what? Because you look so healthy.
But don't for one second think that this disease is not paramount on my mind at least 80 percent of my day. Every day.
KING: Does it consume you?
BARONDESS: It consumes me only in the sense that it's an invisible disease. Just like your point, if you look at -- well for instance, if you look at Montel. I mean, absent the facial disfigurement, you would say he looks pretty good. But I know the pain that he's feeling.
Right now as I sit here, I can't feel my left foot. I mean, that's just the way that it's been for the last two years. I have no feeling. I could kick this desk and I would not feel it.
OSMOND: And I have my challenge. I can't flip a dime. I quit the scouting because I couldn't do no scout sign. My kids beat my in arm wrestling. I mean, it's got to be -- it's terrible. I can't hold my grandkids.
KING: Are you symptom free?
DAVIS: I am not symptom free, but I've handled my symptoms very differently. However, the biggest fear I have is when I see all these people. I get calls every day from newly diagnosed people who are not doing as well as we are.
The fear is, what's tomorrow going to bring? It's a lifelong disease, because there is no cure. I've had it for 11 years. I hope to live a very long life. I don't know what's going to happen in 5 years, in 10 years, 20 years. It's scary.
I do talk to people everyday who are newly diagnosed and one of the best things anybody can do with disease, or probably any other disease, is to have a really good attitude and live your life. Be proactive. Ask the questions and get out there and do what's right tailored for you.
If you go to a doctor and he tells you something that you don't like, you can go to another doctor. And very often you will get another opinion. It's very important with MS to be proactive.
KING: Are you frustrated?
WILLIAMS: Now one of the things that I think I have spoken about my entire life, and what I think is the main reason I think I'm successful as a human being is because I refuse to allow anybody to define me but me.
There is a definition that people have of MS. Whether I'm fighting that definition because I don't want to wind up in a wheelchair, I'm just trying to make sure that every second of every day that I get up I live it to the fullest. I do as much as I can because next week I may not be able to do this.
Knowing that that's going to happen, I mean so lets do it 100 percent today.
KING: Well said. Does the doctor work with people on that bane too? Is the neurologist trained to work with people psychologically to take that attitude, doctor?
SIMSARIAN: The neurologist is trained in a lot of different fields and one of the reasons for developing the Consortium of Multiple Sclerosis Centers was the idea that a group of neurologist came together and said we need a multi-disciplinary group of people. We need to go with this from the various points of view including nurses, social workers, psychologists, speech therapists, rehabilitation specialists.
And so that the total person is looked at. The person has the opportunity to work in many different ways for energy conservation, for symptom management, for conditioning programs, so that the neurologist alone doesn't do this. We're very reliant on the members of our group team.
KING: Mark do you fear that -- I just have a second, if that legislation passes that drug companies will stop investigating, stop spending a lot of money on MS?
BARONDESS: Well, let me put it to you this way, Larry. If you had $800 million to invest and you knew that in one year you could not recoup that investment, in fact would probably lose $700 million. How willing would you be to make that investment?
I would say that it would be zero. The drug companies -- for instance, the NIH, their entire budget from cleaning supplies to salaries to research is $17 billion. Last year alone, the pharmaceutical industry spent $30 billion on research alone.
Out of 5,000 drugs that are tried, maybe one makes it to the market. So, to do anything to discourage the pharmaceutical industry or to say that the pharmaceuticals are charging to much for prescriptions when they give them away for free.
Perhaps another good resource for viewers would be, Pharma.org. Go to them. They will direct you to the drug company ...
KING: Pharma.org.
BARONDESS: Pharma.org. They will direct you to the various public assistance programs that are available so that people can get this medicine.
KING: What, Alan, does TheFamily.com do?
OSMOND: We strengthen families, but you know what? We really don't. You do, the people. What we do is publish information. We're publisher of, we like to think of truth. With findings that work, are positive, are good. We like to share them out there so people can read it, whether it be physical, mental, financial. Whatever problem in your life, strengthen your family.
KING: Yours is research, right?
OSMOND: Ours is research, but we're also providing information.
KING: Yours is too, right? Funding for research.
DAVIS: We have six different hospitals around the country who are arguably the best MS researchers and they meet on a monthly basis via database. They never duplicate each others research, but they have to communicate monthly.
WILLIAMS: And I'm able to bring the Nobel Institute, the Carol Institute (ph) of Stockholm, Sweden into the mix also. They're going to start sharing information. I try to help fund.
We're also providing what you have to (UNINTELLIGIBLE) ...
KING: I want to ask about that when we get back. I want to show you this, MS Take Action kit. It's got Montel's picture on. Three pictures of Montel in various poses. We'll come back right after this.
(COMMERCIAL BREAK)
KING: We're back. The subject is MS for this Sunday night. Dr. Phil returns tomorrow night to LARRY KING LIVE.
What is MS Take Action kit?
WILLIAMS: This is a kit that is being provided -- I tell you what, when people provide funds or donate money to the Montel Williams MS Research Fund, our foundation, every single penny that they send to us goes right back out the door. Right out to the people who are doing research.
I kind of partnered up with Spotlight Health, and Spotlight Health has helped us send this kit out. Which is just information about MS. We try to keep it as comprehensive as we can.
KING: Is there a tape included?
WILLIAMS: There is a tape included in there. But in the last couple of days, last couple of weeks we found out another drug has just come to the market place. We'll have to go back and add that. But I want to make sure that the people who are suffering get as much information as they can so they can go and ask the right questions of their doctors.
KING: We have the number you can call, 1-877-MONTEL-MS. 1-877- MONTEL-MS. Free?
WILLIAMS: Free. We'll just send it to you. Give you some information.
KING: And they -- you have, but the Fight To Erase MS. You have an event coming up, right?
DAVIS: We have an event coming up May the 10th. Its Race to Erase MS, but this year it's called Peace and Love to Erase MS.
KING: In L.A.?
DAVIS: We're doing it in Los Angeles at the Century Plaza Hotel and Spa. If anybody's interested they can call our 1-800 number, 1- 800-2-ERASE-1.
And the very next day at the Century Plaza Hotel at 10:30, that's on May 11, there's an MS roundtable discussion where all these amazing doctors that we fund from all around the country will come and people can ask different questions and learn about the very latest in research. Hopefully garner some information.
So much has happened in such a short time.
KING: All of you take this beyond just having it, right? That's your foundations.
OSMOND: Yes, ours really is about the support you get from your wife and your kids. Strength and look up, prayer works. And ask yourself, look in the mirror and ask yourself about the person within you.
Yeah, my body's not moving but the person in you is a different one. It can drive the body beyond where it wants to go.
KING: Why isn't it just, I got the disease. I'll work at it. Why do I need to do this? Why do I need to be public? Why do I need to tell others?
BARONDESS: Because if you're not proactive. If you don't take on the responsibility to get the news out to tell people that there is hope. To tell people that you don't have to suffer. What's the point? We're doing a disservice. People like Nancy, Alan and Montel; they are in a public position to be able to articulate. To get attention and to focus it and to support these organizations that help people.
That's what it's all about.
WILLIAMS: You got to be a little selfish. Because the bottom- line is this, right now with the numbers of 2.75 million people in this country suffering from MS. I will guarantee you watching this show right now, someone just said I better call Aunt Jean. She has MS. I better call my cousin Bobby.
We're seeing the numbers go up so quickly that every family in America is going to be affected. So why not stop this (UNINTELLIGIBLE) now? There are a lot of us that are going to be working at 150 percent that are working at 90 percent.
KING: Doctor, any ethnic, racial differences?
SIMSARIAN: The data shows that there really is not an ethnic or a racial difference. It depends as we said on the geography. Where you are when you were young. The migration studies show that people who move, for example, to Israel under the age -- after they reach the age of 15 or slightly over, carried with them the same risk of multiple sclerosis that came from the area where they came from initially.
So, in effect, there is really no genetic -- no ethnic difference.
KING: Animals get it?
SIMSARIAN: There are animal models that people are working on. A lot of the research is being funded now, is being done in mice and other animals to find what is the immunological cause and problem.
But I think to echo what people have said here. It's very important that public figures come out, talk about the disease, help us educate the public. Because the one physician in an office, the people in the centers, we're limited and it's this kind of publicity that will let people understand what the disease is and the fact that there is hope by being proactive.
KING: You translate that hope to optimism, Alan?
OSMOND: Absolutely, I think the family support is so ...
KING: You think you're going to cure this?
OSMOND: No, but I think what we're doing here -- each one of us ...
KING: You don't think you're going to cure it?
OSMOND: We will. I think we'll win, absolutely. But I think we do need to support and get the studies and get that out there. We need to not give up individually. You have push. I got myself a leg brace, because my foot kept falling. I didn't wait for a doctor.
You've got to be aggressive with this thing.
KING: You optimistic?
DAVIS: Absolutely. I wouldn't be doing this if I wasn't. I really feel like we are going at such a fast speed now compared to where we were before I was ever diagnosed with this disease.
And there are so many incredible doctors, there's great research. They understand the mechanism of how it comes to your body. They don't know how you get it exactly. They don't have a cure yet. But so much has happened in such a very short time that I'm really encouraged.
WILLIAMS: Well, you know what? I look at it this way. It may not come in time for me, but I guarantee the work I do will be in time for my children..
SIMSARIAN: It's also important, Larry, that we put some work and some effort into treating and learning more about the symptoms. The invisible symptoms that people experience with this disease. The fatigue. The mood changes. The cognitive problems and pain. How do we manage these symptoms that people experience.
WILLIAMS: And ask family members to learn a lot about this illness too because those family members and loved ones need to understand what we're about. What we -- what happens? When we maybe move away, it's not because we don't want you to touch us. It's maybe because that whole side of my body hurts. And for that second, you need to know that.
And the more and more and more that loved ones and friends will ...
KING: A few more things I want to touch on, and we'll cover them when we come back. Don't go away.
(COMMERCIAL BREAK)
KING: Dr. Simsarian, any dietary restrictions on people with MS?
SIMSARIAN: We do not dispose any specific dietary restrictions. There have been diets that have been put forward, but to date we don't have any scientific proven evidence that any specific diet is better. We do advocate a very nutritious, you know, regular balanced diet.
KING: You mentioned exercise, right? That that helps. How?
SIMSARIAN: Exercise is important in maintaining the body's conditioning, physical strength, and more important is to look at energy conservation. Because there is a fatigue that is very prominent in this disease.
Up to 85 percent of people experience fatigue. And if you learn how to conserve your energy, how to be more efficient in your activities and condition your body, you are going to be able to function better.
In a disease like this where we have motor weakness, sensory loss, impaired mobility, it's very quick and very easy that people become deconditioned. The quicker you become and the more deconditioned you become, the more difficult it is to exercise the more function that one loses.
That's where our multi-disciplinary approach works. To try to help people to become -- to look at all the various aspects of their disease and focus on the parts that are important to them.
KING: Any differences male, female? More males than females? SIMSARIAN: The disease is predominantly in females. The incidence in females is far larger than in males.
WILLIAMS: There are three guys here. What's going on?
DAVIS: You would know that. That's true.
KING: So this panel is not representative in that sense?
DAVIS: At least they say about as three times as many women as men get it. But from what I've known, most of the men get it at a faster accelerated case.
SIMSARIAN: The disease in men is, it tends to be a more progressive disease. They tend to develop more symptoms, more rapidly. Yes, Nancy.
KING: But (UNINTELLIGIBLE) would happen in the same age group, right? Late thirties ...
BARONDESS: Mine was about early 22. So I probably, the onset or whatever the first bout was probably 22.
KING: I didn't ask you if you were optimistic.
BARONDESS: I am optimistic. I have a family that loves me, and I have so many good things. I have good friends like you, and Nancy, and Montel and Alan.
KING: But you have down days, don't you?
BARONDESS: Everybody has a down day. But you know what? All I have to do is think of the child in a cancer ward, that has it far worse than me. Or someone with heart disease that has no hope and will day for some reason. So I try to keep it in perspective.
When you keep it in perspective, you can't give up hope. The main message here is research. Spending the money and the time to find the cure for this disease. That's where the hope is and that's where the answer is.
OSMOND: Young boy came back stage, his mother brought him back. Said, my little brother is 12. He has MS. I was surprised a child had it.
And I said, you know what? You and I have the same thing, MS. And you know what? We're going to win. And that kid sat up. I mean, you need positive thrusts in your life. You need examples. You need family. You need the big picture and you got to do something yourself and not wait for it.
I believe we will win this.
KING: Government involved enough?
WILLIAMS: I think one of the things that we need to do is make sure, like Mark was talking about earlier, that we don't pass legislation that thwarts the ability of manufacturers to come up with a product that may be the cure for us all.
Then, on top of that, we need to slow down some of the regulations. I'm sorry, I'm at a point now I my life where I feel like if tomorrow I hear about a drug that's being worked by one company. Why should I not be allowed or afford my opportunity to test that with myself or at least be involved in the process?
Eleven years down the road ...
KING: We're behind other countries in that regard. We don't like to ...
WILLIAMS: We've got to get the drugs to the people, and I think, especially based on the symptoms that we have, because one of the things that the Doctor talked about is working not only with the disease but working on the myriad of symptoms.
There are drugs that can help the myriad of symptoms that we all have. If more of the manufacturers working had more money for research to do that, we might still have the disease but would walk around symptom free.
KING: Doctor, why are a lot of these drugs injectables?
SIMSARIAN: The medicines that we use in multiple sclerosis, the ABC and all drugs are injectable medications. So far no one has been able to develop a ...
KING: A pill?
SIMSARIAN: A pill, or a nasal inhaler that seems to be effective.
KING: Nancy?
DAVIS: Currently at four of our centers we are in phase two studies on something called interferontal (ph) that is taken orally. In stage one studies it did very well. It helped a larger percentage of people, and hopefully that will be the future. People will not have to take injectables.
BARONDESS: You know, this one point with regard to injectables. This is another thing with the government that I don't understand. Presently there is actually a dispute that if you give yourself a shot at home, like most of -- Montel does, I do, Alan does -- that Medicare won't cover that.
OSMOND: Which is ridiculous.
BARONDESS: I don't get it. I have to go into a doctor's office to get a shot to have it covered. Why? I was hoping you would give me the answer, because we haven't heard an intelligent one yet.
WILLIAMS: If somebody tries to say because you're debilitated and you can't do it yourself. What are you going to think, all of us have probably taken a combination of a couple thousand shots in the last couple of years. I can do it. I do it myself every day.
KING: So wait a minute. Does Medicare pay for people with diabetes who give themselves insulin?
BARONDESS: Under Medicare, they will not pay for any self- injectable medication. It's insane. It's absolutely insane.
KING: You're taking these injectables daily?
BARONDESS: Yes.
(CROSSTALK)
KING: All right. Let's review this quickly. Web site SpotlightHealth.com. If you want to order this free MS Take Action kit, 1-877-MONTEL-MS. You can contact any one of the foundations. The Montel Williams MS Foundation, OneHeart.org. TheFamily.com, Alan Osmond's group. Nancy Davis' group is the Nancy Davis Foundation for MS and of course the Erase the MS event comes May 10 and 11.
Mark Barondess is general counsel for the Montel Williams MS Foundation. SpotlightHealth.com is on your Web site.
We hope we've enhanced your knowledge of multiple sclerosis tonight. We'll try to do more shows like this all the time.
Tomorrow night, Dr. Phil returns when we're back live.
Thanks for joining us, for all our guests in Los Angeles and in Washington.
I'm Larry King. Good night.
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