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Live From...

Inside the War on Cancer

Aired August 15, 2005 - 14:30   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

(BEGIN VIDEO CLIP)
MARIA: What is the number one thing kids with cancer should tell doctors?

BRIANNA: They hurt really bad?

MARIA: If I could change one thing about cancer, it would be?

BRIANNA: Make it go away.

MARIA: Make it go away? And what else?

BRIANNA: That's it.

(END VIDEO CLIP)

KYRA PHILLIPS, CNN ANCHOR: If the war against cancer were only a matter of science and sheer human fortitude, it would still be daunting enough. But it's also a matter of economics, cost and benefit, profit and loss, in addition to life and death. Case in point, Allie Krowski, 5 years old introduced by CNN's Dr. Sanjay Gupta.

(BEGIN VIDEOTAPE)

SANJAY GUPTA, CNN SENIOR MEDICAL CORRESPONDENT (voice-over): Alexandria is the only child of Sandra and Ed Krowski. While on vacation, she suddenly blurts out, my back hurts.

SANDRA KROWSKI, ALLIE'S MOTHER: You have that little voice saying something's wrong.

GUPTA: For weeks, doctors think otherwise. They point to a new tricycle or a playground injury as the probable cause of the pain. Then, suddenly, little Allie can't walk.

KROWSKI: She was telling the doctors my legs are stuck. She had no movement from her waist down. She was completely paralyzed. It was just a horrible situation where you're -- I said to my husband that I'm losing my child. And she's dying in front of me.

GUPTA: An emergency MRI reveals a tumor on Allie's spine. She has a rare, often fatal cancer called Ewing's sarcoma.

KROWSKI: I made the decision to get her to Houston immediately. We chartered a Lear jet, we put it on our card. It was $12,654. It was the best $12,654 I ever spent!

GUPTA: Sandra, Allie's mom, also battles cancer. She knew her daughter's life depended on experimental testing.

KROWSKI: Allie's physician, Dr. Cynthia Herzog (ph) came in and told me that there was a clinical trial for Allie's type of cancer. I said I don't need to think about it. I've already thought about it and you can bring me the papers and I'll sign right now.

GUPTA: Weeks of very aggressive chemotherapy and radiation had left Allie weak, nearly dead. Then she began a year-long treatment with ImmTher, an experimental drug. After six months, a change.

KROWSKI: I knew that it was working. I just had that feeling. Once she started the trial, like she just seemed to -- I could see, you know, in her face, she was getting more energetic.

(voice-over): Put your head straight.

GUPTA: Now almost 6, Allie is cancer-free but must be monitored carefully.

UNIDENTIFIED FEMALE: Hold your breath. Do not breathe and do not move.

GUPTA: ImmTher, the drug that apparently saved her life is still available as part of Dr. Kleinerman's ongoing trial. But after that, it disappears.

(on camera): There was a drug out there that as far as you could tell, seemed to be working?

EUGENIE KLEINERMAN, M.D. ANDERSON CANCER CTR.: Correct.

GUPTA: And then you got a phone call saying that they weren't going to manufacture the drug anymore?

KLEINERMAN: Correct. Basically, I was getting the message that our marketing people had done research and were never going to be able to recoup our research and development costs. And it doesn't matter who we're going to help or who we're not going to help, the marketing people have made the decision that we're not putting any more resources in this.

GUPTA: And the outcome?

KLEINERMAN: The outcome is we still have only a certain amount of drug.

GUPTA (voice-over): Just enough to treat 60 kids or about one- third of the kids that get Ewing's sarcoma each year.

(on camera): This isn't the story people want to hear. If a drug works, why wouldn't they make more of it?

KLEINERMAN: Because sarcoma is a very rare tumor. And you have to understand that drug companies, pharmaceutical companies, have to report to their stockholders and they're interested in their financials and this will never be a money maker.

GUPTA: This really does keep you up, doesn't it.

KLEINERMAN: Oh, yes, of course.

ALEXANDRIA: My name is Alexandria. I'm 5, almost -- year old, almost 6.

UNIDENTIFIED FEMALE: How many times have you been in the hospital?

ALEXANDRA: Four times.

UNIDENTIFIED FEMALE: Four times?

(END VIDEOTAPE)

PHILLIPS: Well, one of Allie's doctors -- you saw her in the piece -- is head of pediatrics at the renowned M.D. Anderson Cancer Center at the University of Texas. Dr. Eugenie Kleinerman joins me now live from Houston to talk about treating cancer and the challenges of making life-saving drugs available to children. Doctor, great to see you.

KLEINERMAN: Thank you very much.

PHILLIPS: First of all, what a brave little girl. Allie I bet -- no doubt she stole your heart?

KLEINERMAN: Oh, she steals everybody's heart every time she comes into the clinic. And you should see her. She has a matching purse for every outfit. She is quite a young lady.

PHILLIPS: She is a classy young lady. And it's so wonderful to see too how well she is doing and what an incredible influence you've been in her life, medically and personally.

Let's talk about -- her mom said, you don't even have to ask me any questions, I'll sign the paperwork, let's do it. Let's let her go about this clinical trial. Why do you think it worked for Allie?

KLEINERMAN: We don't know why it worked. I've been working on immune therapy for over 20 years and I think that chemotherapy can destroy the majority of the tumor cells but oftentimes there are chemo resistant cells left behind. And I think if we can harness the immune system using immunotherapy we can get rid of the tumor cells and we can cure many more patients.

But the immune therapy has to be combined with traditional chemotherapy and radiation therapy. It's not going to be effective on its own.

PHILLIPS: Now, how did you know Allie was going to be a good candidate or did you not know? KLEINERMAN: We have an eligibility criteria for the trial. She is on a clinical trial and it's a randomized clinical trial to receive chemotherapy alone or chemotherapy plus this immune therapy. So she fit the eligibility criteria of having Ewing's sarcoma and in a high- risk group which means the tumor was in a bad place in her spine and she was at high risk for relapse. So she fit the eligibility criteria and, fortunately, she was randomized to receive the Immther.

PHILLIPS: So this drug worked for Allie. As we saw in Dr. Sanjay Gupta's piece and you addressed as well, no longer will this drug be manufactured. It's mind boggling to me that that can even happen, that money and politics and profits would even be an issue when you see that a life or lives have been saved.

KLEINERMAN: Well, it's puzzling to me. And actually, I need to tell you, that this is the third time this has happened to me that we've had a drug in clinical trial and that is it has been pulled back by the pharmaceutical industry because I work in sarcomas which are a rare tumor.

And pediatric tumors are also rare, fortunately. But the reality of the situation is that pharmaceutical companies are in the business of making money. It's just free enterprise and that is what they do. And childhood cancer, and particularly sarcomas, are not going to give them a large enough market.

PHILLIPS: So this is the third time you've gone through dealing with a patient that has used an experimental drug and has survived and it's been yanked, it's no longer been manufactured? third time?

KLEINERMAN: That is correct.

PHILLIPS: So what can we do? What can lawmakers do? What can anyone do to try and -- is it challenging these companies? Is it standing -- I mean, what can we all do to stop that from happening?

KLEINERMAN: I think we have to have a different approach. We have to understand where the pharmaceutical companies are coming from. We also have to understand that achieving things in patients is important and so we need to come to the table -- the FDA, the National Cancer Institute, and the pharmaceutical companies -- and come up with some agreement.

Maybe there are incentives that a pharmaceutical company can be given for developing these drugs that are going to be money losers, but we have to be creative about it. We can't just approach it as business as usual.

PHILLIPS: Yes, there should be some sort of ethical code. I mean, how can you let another life be sacrificed because you're not making money off a drug?

KLEINERMAN: Well, remember, is this still in clinical trial. I think it works and I think it worked in Allie's situation but we have to finish the trial to really show that, indeed, adding this drug is better than chemotherapy alone. So I don't think we have that data yet.

Once I finish the trial and we can show that it is efficacious, then it needs to be evaluated by the FDA. A lot of preparation and a lot of resources go into preparing the presentation to the FDA actually to get approval. So now there's no company that's going to do that. But there's a process that has to take place to get drug approval and that is very expensive.

PHILLIPS: Wow. What a reality check for a lot of us. Dr. Eugenie Kleinerman, great talking to you.

KLEINERMAN: Thank you.

PHILLIPS: Thank you so much and also congratulations with regard to your patient Allie. It's wonderful to see her now all these years later.

KLEINERMAN: Thank you very much.

PHILLIPS: Thank you. My pleasure. As you know, we've been talking to a lot of survivors, as well as doctors. We're also talking with Dr. Otis Brawley. He is here with us. He is an oncologist that is joining us from Emory University. And do you mind taking a phone call quickly before we go to break?

OTIS BRAWLEY, ONCOLOGIST, EMORY UNIVERSITY: No problem.

PHILLIPS: OK. Pat on the line from Dallas, Texas. Tell us what your question is for the doctor.

PAT, DALLAS, TEXAS (on phone): Yes, my daughter was diagnosed with breast cancer at the age of 38. And she just accomplished five years. We felt that this would be recovery, but her oncologist told her she was in remission. So my daughter's question was when do you actually consider that you're cured?

BRAWLEY: That's a very good question. In medical oncology, we very rarely use the word "cure." We actually call it a four-letter word. The reality is that your daughter still has breast tissue in her body. Even if she's had both of her breasts removed, there's still a little bit of breast tissue in her body and that breast tissue is at risk of developing a new cancer. So we always have to be vigilant.

I have patients who have been in complete remission for 40 years, and I still consider a complete remission and I maintain vigilance. A person who has not had a relapse within five years is usually not going to have a relapse of the previous cancer.

PHILLIPS: Thank you, doctor. Stay with us. We're going to take more calls. Pat, from Dallas, Texas, thank you, of course, so much. We're going to continue -- or, continue, rather, to send us your questions about cancer via e-mail.

Dr. Brawley is going to answer more of them, ahead this hour. Once again, that address is livefrom@CNN.com. Also, take advantage of the phones like Pat did out of Texas. The number is 404-221-1855. We'll be right back.

(BEGIN VIDEO CLIP)

VICTORIA, BREAST CANCER: It's time to use the good china. And that's a phrase that I grew up with in the South and I think that it's very appropriate, because when something important was going on or something important -- an event was happening, you used the good china. And it was an important day. And every day of your life, at this point, is an important day. It's time to use the good china.

(COMMERCIAL BREAK)

(BEGIN VIDEO CLIP)

MARTHA, BREAST CANCER AND STAFF: The worst part about cancer is the fear. It's the fear of what they will find during the tests.

TIM, PANCREATIC CANCER: Not knowing if I would be a daddy long- term to this beautiful child here. He's coming up on his third birthday.

BRENT, PHYSICIAN ASSISTANT: We know that the hour glass is turned when you're diagnosed with cancer. We don't know how long that sand is going to run down. For some people, it's short, for some people, it's very long.

(END VIDEO CLIP)

PHILLIPS: Well, we've been getting your e-mails this hour with a lot of questions about treating cancer. Once again, oncologist Otis Brawley with Emory University's Winship Cancer Institute is here to help me answer a number of those questions.

Just out of that last piece that we saw before the break, talking about these manufacturers. Since they're not -- these companies aren't making money, they just stopped using the drug, even though the drugs are work for the kids in experimental phases. You were telling me about the Orphan Drug Act.

BRAWLEY: That's right.

PHILLIPS: And that there's a way for companies to hang in there, maybe write off losses, because those drugs could help other patients in the future with other types of cancers?

BRAWLEY: That's right. It's important to realize that there is an Orphan Drug Act. And this company has already looked at it, I'm sure, and decided that even with the Orphan Drug Act, which allows them to take certain tax credits and tax deductions if they're manufacturing a drug that they can't make a profit on because so few people can utilize it. They've decided already that they're just not going to be able to make money off of it. It's really a shame.

It's also an even greater shame because not only is this drug likely to help some children, but there are several instances in medical history over the last 40 years of drugs that we've disposed of in the 1960s and '70s like thalidomide or Emcyt, estramustine. And those drugs are now being used in other diseases that hadn't even been thought of. Maybe this drug, which is effective in pediatrics or appears to be effective in pediatric disease -- maybe this drug will also be effective in treating some adult diseases. We may never know now.

PHILLIPS: Well, it's a shame how money drives so many decisions.

Let's get to a couple more e-mails.

BRAWLEY: Sure.

PHILLIPS: This one, asking the question: "I was diagnosed with prostrate cancer at a relatively young age, 48. I was devastated. My doctor maintains the cancer is localized, a medical language I can't quite figure out. Can I survive so that I can go back to teaching?" Localized?

BRAWLEY: Localized. What localized means is the cancer is in one place. Cancer which is in one place never harms a person or rarely harms a person. It frequently can be surgically removed. We can focus radiation on that one place and we radiate it. Sometimes in the case of prostate cancer, we put seeds in the prostate and actually -- radioactive seeds and radiate the prostate.

If it is localized, you can cure it. If it is spread -- and one of the things about cancer is it starts out localized and it starts to metastasize -- another big word which just means migrate or spread on other parts of the body. That's when the cancer actually starts causing harm. Can go to bone and cause pain, it can go to the brain and cause seizures and other things. It can block bloodflow to various places.

If he has a prostate cancer which has spread, it's basically not curable. If it is localized, there is a very high cure rate from either surgery or from radiation, external beam radiation or seed implantation. Those are the treatments options when one have localized disease.

In addition with prostrate cancer, which have another special problem, and that is there's a high proportion of men who have prostate cancer, but it's destined to be localized for the rest of their life; therefore it never ever needs to be treated. In this country, we today we treat all the men with prostate cancer, because we don't have a test to figure out the ones who have it localized and never need to be treated. The younger a man is -- and 48 is fairly young for prostate cancer -- most physicians are going to recommend that he get some kind of treatment and feel very bad if he gets into observation therapy.

PHILLIPS: Thanks for that advice. We're going to go straight to the phones once again. John in Colorado has a question for you. Go ahead, John.

JOHN, COLORADO (on phone): Yes, my question is, do the tumors that result from neurofibromatosis ever become malignant? BRAWLEY: Yes, they do. Neurofibromatosis is also called Elephant Man's Disease. It's caused by a very specific genetic mutation, harking back to that family history question that we had earlier. And people have these little neural fibromas, which are little balls that one can feel under the skin. Sometimes those things do become sarcomogis (ph), which is a type of cancer. They have to be observed and you really ought to be seen by someone who has specific experience in taking care of patients with neurofibromatosis.

PHILLIPS: Dr. Otis Brawley from Emory University. Thank you so much for your time. Really appreciate it.

BRAWLEY: My pleasure.

PHILLIPS: Yes, great calls, great e-mails, great answers.

BRAWLEY: Thank you.

PHILLIPS: Thank you.

We're going to take a quick break. More LIVE FROM and more of our cancer special, right after this.

(COMMERCIAL BREAK)

PHILLIPS: "THE SITUATION ROOM" is coming up at the top of the hour. Let's get to Wolf Blitzer in Washington to find out what he's working on today. Sorry about that, Wolf. Had a little bit a tongue twister there.

BLITZER: Easy for you to say. "THE SITUATION ROOM." Thanks very much, Kyra.

We're getting feeds coming into "THE SITUATION ROOM" from all over the world. A little bit more than one hour from now, the deadline in Iraq for a new draft constitution. One hour plus. Will that constitution set the stage for real democracy in Iraq or -- or -- this is a big if. Will it set the stage for an Islamic republic in Iraq?

Also, the Gaza withdrawal. The process beginning right now. We'll go live to Gaza. Plus, Cindy Sheehan, what's the White House strategy in dealing with this grieving mother? Much more coming up at the top of the hour, in the SITUATION ROOM -- Kyra.

PHILLIPS: I'll stay right behind your left shoulder there, Wolf. Thank you so much.

(COMMERCIAL BREAK)

PHILLIPS: Well, as you can imagine, this has been quite an emotional hour for all of us, but I have to tell you, it got more emotional here in our newsroom when we all started talking about our own families, those we loved and lost to cancer. I was flooded by e- mail with personal stories and pictures. I even learned of dozens of co-workers who are cancer survivors, some of my colleagues are even battling cancer right now. And one of our longtime writers, Glenn Klantz (ph), passed away on Saturday. Latrina White (ph), who works for CNN.com, lost her father Bobby Lee to lung cancer. She just told me about him today. Rob Chesney, one of our producers -- you'll see his wife in this picture -- lost his father-in-law, Lud Viknison (ph), to a brain tumor.

My producer Jen Bernstein (ph), who by the way, has a heart of gold, lost mother Marie to brain cancer and her father Ray to colon cancer. Maria Duganzic (ph), who works in our international desk, lost her mother Kathy (ph) to colon cancer. You see her in the middle.

This is Jo Thompson (ph). Her son Scott works on the national desk here. His mom recently passed away from pancreatic cancer. And Paul Karyn (ph), one of national desk managers, lost his father-in-law Tom Hanson to throat cancer. And I lost my grandfather and my best friend, Kenneth Mangin (ph), to a brain tumor.

It never gets easy to deal with. But I would also like to emphasize that the flurry of e-mail I received also involved a lot of bragging rights about survival. Robert Tharpe (ph), who works our remotes desk, hopes to come back next month. He's battling lymphoma. Katie Serneglia (ph) is an associate producer. This is her father, Russ (ph). He's a kidney cancer survivor. He was so proud to kiss the Stanley Cup. And this is our supervisor Torri Blaze's (ph) sister Tina, a lymphoma survivor. By the way, a pretty brand new child there, thanks to Tori, her health.

And Cheryl Groves (ph) with Headline News graphics sent us this picture of her mother Ann (ph). She beat breast cancer. Marty Waters (ph), also a breast cancer survivor. She's Scott Rigor's (ph) stepmother. Scotty is our awesome director. Richard Griffiths (ph) is our editorial director. His mom mary also survived breast cancer.

And carving up the turkey last thanks giving, father-in-law to my producer Vicki Russell (ph), Larry Russell (ph) is winning his fight with prostate cancer. And a live picture now from our national desk. This is Samuel Santa Maria (ph). He had less than a 10 percent chance of surviving lymphoma. I'll tell you right now, we love seeing that face and hearing his voice every day.

Thank you so much for joining us. This has been our special edition of LIVE FROM, "Inside the War on Cancer." I'm Kyra Phillips at the CNN Center in Atlanta.

Now, Wolf Blitzer, live in THE SITUATION ROOM.

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