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CNN Live Event/Special

Ferraro Calls for More Cancer Research Funding

Aired June 21, 2001 - 10:55   ET


DARYN KAGAN, CNN ANCHOR: And we want to take you live to Capitol Hill. There is former congresswoman and former vice presidential candidate Geraldine Ferraro testifying today about her battle with cancer and asking for more cancer research funds. Let's listen in.

GERALDINE FERRARO, FORMER VICE PRESIDENTIAL CANDIDATE: ... session and how little time there is to do them. Also, I am particularly grateful for your allowing us to appear before you to discuss an issue which is, to some of us here, a matter of life and death.

Several months ago I was at home watching the news and saw a former colleague, Joe Moakley, at his press conference disclosing that he had been diagnosed with a blood cancer, leukemia, which is neither curable nor treatable, and announcing that he would not seek reelection. My heart went out to him in part because he was such a terrific person who really loved the Congress and his announcement was so terribly final. But also because I knew what he was going through emotionally dealing with this disease.

In December of 1998, I, too, was diagnosed with a blood cancer, multiple myeloma, which is also not curable. Let me hasten to add, however, that unlike Joe's situation, at least for the present, my cancer is treatable. I have chosen not to be public about my health until now. That's one of the benefits of losing an election. You can keep your private life private.

But I am here because I wanted to make sure the public got to know about multiple myeloma and I wanted to point out to you just how important research dollars are to dealing with this disease.

Let me start by saying I am a very lucky woman. First of all, I have the best doctors caring for me. It is because of one of those doctors, Ronald McKenzie (ph), my internist, that I was diagnosed very early. I had gone for my annual checkup and he noticed in looking over my blood test results that my white blood count was slightly elevated. He went back and checked my previous year's records and saw that there was a steady but slow progression upward of the white cell count over the years. He called me and said he wanted to see me and that he was sending my blood out for additional tests because it seemed that I had either leukemia, lymphoma or multiple myeloma.

I must say I was a bit taken aback. I didn't even know what multiple myeloma was. I had never heard of it. Dr. McKenzie explained that it was a blood cancer that attacks the bones. Most people don't find out they have it until a symptom appears that needs an explanation, like aching or broken bones, and I had no symptoms.

My initial reaction was thank god it's me and not one of my children. As much as we want to believe that we are indispensable to our families, my children are all grown and quite independent. But they are also married and they have little children of their own who most definitely do need them.

My second reaction was why cancer? That's not a disease that's in my family. We're big on strokes and heart attacks. Even my mother, who died, died of emphysema, not lung cancer. She smoked, died of emphysema and not lung cancer. So how did I get multiple myeloma? Was it the environment? Was it stress? And we all know I've had a little of that over the years. Was there some hidden genetic disposition to the disease and if so, can we check my children and grandchildren to be sure I haven't passed that cancer gene onto them? And going beyond me, what is it that makes African-Americans almost two and a half times more likely than Caucasians to come down with this disease? Why is it that multiple myeloma historically manifests itself in people who are older?

Hopefully, future research will be able to answer all of those questions.

When we left Dr. McKenzie that day we were feeling pretty down, but the holidays were fast approaching and after seeing John's devastation on hearing the news, I just didn't have the heart to tell my kids until after Christmas. But once the holidays were behind us, we told them. And then we went to see my second wonderful doctor, Jeffrey Tepler (ph), who is an oncologist.

Before I go on, I want to point out that I keep using the term "we." That is not the royal we. That is my husband John Zaccaro and me. We have been best friends since college. Next month we will be married for 41 years. We totally enjoy each other's company but, you know, professionally we've led rather independent lives.

Since my diagnosis, however, John drops everything at the office to drive me to the doctor, to sit with me for two hours at the hospital when I'm getting an infusion, to fly to Boston to meet with my third wonderful doctor, Ken Anderson (ph), whom you will hear from shortly. And, as a matter of fact, my husband is here today with my eldest daughter, Donna.

But back to Dr. Tepler. When I was first diagnosed, my cancer was inactive. No proteins showed in my blood, none in my urine, so Dr. Tepler took rather frequent bone marrow samples and did blood and urine tests on a monthly basis. And I started monthly infusions of a bone strengthening drug called pamidronate. In June of last year, he called me and told me that the cancer had become active and that he had spoken with Dr. Anderson, whom I met shortly after diagnosis, and they agreed that I should start taking steroids. Now, I thought I was going to be able to hit the golf ball further, swim faster, run like the wind once I got on steroids. Unfortunately, this type of steroid has none of the beneficial effect of the steroids that athletes take. It did deal with the cancer, though it was mood altering and made me terribly irritable. It also made me slightly puffy, which wasn't all that bad since all of my wrinkles temporarily disappeared without the cost or inconvenience of the face lift.

I continued taking the steroids through the summer and early fall and they worked beautifully, reducing the cancer protein, until November. And then I plateaued. It was time to go to Dr. Anderson to discuss stem cell transplants. Though I wasn't happy about it, I was resigned to the fact that I would need the procedure, since I had been told it was my next step in treating the disease and without treatment, quite simply, I will die.

I was told a stem cell transplant would involve three weeks in the hospital, that I would be getting massive doses of chemotherapy followed by radiation, that my immune system would be totally destroyed and that I would need approximately three months at home to recuperate. I was worried about how I would deal with that amount of time out of circulation. I worried about my business, my family and, to be quite frank, I worried about myself.

The one thing I wasn't worried about was the cost. I am told the price tag for the procedure is $50,000 to $100,000. I am now eligible for Medicare and Medicare covers the procedure. But even if it didn't, my insurance does and if my insurance didn't cover it, I could still afford to pay for the procedure myself if I needed it.

But what about those who can't? What about those who don't have health care coverage? I guess those are two questions that will probably be answered at a future hearing on health care legislation instead of here today.

Dr. Anderson went through the whole process with John, my youngest daughter, Laura, and me, and then he said that several of his patients has opted to take thalidomide as an alternative to taking the stem cell -- having the stem cell procedure done. I was intrigued. I was having babies in the '60s when thalidomide was making headlines as a dreaded pill that when taken by pregnant women caused severe damage to fetuses. Children were being born with all kinds of deformities.

But what destroyed healthy growth then was now being used to prevent cancer growth. Dr. Anderson described for us just how thalidomide works, which I'm sure it will do for you, and when we heard that it had the potential for treating the disease with minimal side effects, that if it didn't work we were not precluded from doing the stem cell transplant in the future, we opted to try thalidomide.

I have been taking thalidomide since November. It's working. Once a month I still go for an infusion and once a month I get blood and urine tests. Then I wait the three very long days until my test comes back to hear from Dr. Tepler. Am I still doing well? Have the cancer cells figured out a way to fight the thalidomide and if they have, what, if any, option do I have before I deal with a stem cell transplant?

I don't expect you to answer those questions, senators. Those are reserved for Dr. Anderson. And I have such confidence in him and the other researchers who are dealing with multiple myeloma that I know they will have the next step ready for me when I need to take it. But they need you and your colleagues in the Congress to help. They need more awareness and attention being paid to blood cancer so that people will test early and be diagnosed earlier. They need research dollars to continue to search for new treatments and a cure. And they need faster approval by the FDA of new drugs.

Pharmaceutical companies have been slow to underwrite research for multiple myeloma because each different blood cancer requires different treatment. What's good for leukemia or lymphoma will not help me. So if you take each of the blood cancers separately, we're talking about orphan drugs. But there just aren't enough potential users of each to make it financially worthwhile for the pharmaceutical companies.

On the other hand, this is still a huge problem for this country. For if we lump together leukemia, lymphoma and multiple myeloma, last year's figures show that the mortality rate for blood cancers is second only to lung cancer, 20 percent higher than colon cancer, one third higher than breast cancer and almost twice as high as prostate cancer. Those diseases receive far more attention and far more funding.

Now, I am not suggesting for one minute, that attention or funding to the others diseases be reduced. My husband is a survivor of colon cancer because of early detection. I nagged my two older children until they got a colonoscopy; and I will get up on a soap box and tell the world how important it is to be tested to detect that disease because it is curable. I also served, when I was in the House and after on a breast cancer task force, and I've spoken out, walked more than once to raise money for that cause, which I will continue to do.

But what I am suggesting is that blood cancers are a serious and costly health concern and they, too, need our attention and funding. Multiple myeloma is hitting a lot of elderly; and though I wince when I refer to myself that way, I am not an unusual candidate for this disease. But just think about the consequence of that demographic. I mentioned before that if I need a stem cell transplant, it will cost between $50,000 and $100,000, and that Medicare will pay for it.

Instead, my insurance company is paying $264 dollars a month for a prescription of thalidomide. A year ago, the cheaper option of thalidomide was not available. Research made the difference. Now, what happens when thalidomide stops working? I go month-to-month not knowing when Dr. Tepler will call and tell me that. Will Dr. Anderson be able to give me some new drug, or will he have to tell me it's in clinical trials and he's not quite sure when it will be approved, so it's time for a transplant?

It almost goes without saying that combining investment and research with faster government approval of drugs is a cost-effective way of dealing with the expense of this disease to our health care system.

I told you when I started that I'm a lucky woman. I have great doctors, an early diagnosis, and up-to-the-minute treatment that works. But cancer doesn't only eat at your body, it is a disease that can destroy you both emotionally and psychologically. I am blessed with a family that is always there to boost me up.

In addition to their constant concern of me, my daughter Donna taken her business and media experience and put it to work to help the Multiple Myeloma Research Foundation, raise awareness and money. My son John, as a lawyer, has filled in to take over the headaches of John's business so his dad can be with me. Laura is the doctor who keeps an eye on my test results and asks the questions I forget to ask and answers the ones that I'm embarrassed too embarrassed to ask.

My four grandbabies give me hugs and kisses and a thousand reasons a day I want to fight this thing. They and John, of course, and a few close friends -- and Barbara Mikulski was one of the people I confided in almost immediately after I found out that I had this.

They have given me the emotional support that all of us need when we're slapped in the face with our mortality. Living in New York City, I'm never sure when I run into a street to hail a cab that I'm going to live long enough to ride in it...


FERRARO: ... but hearing that you have a disease that is incurable, with an average life span of just three years, does make one stop and notice.

I expect, with my trio of miracle -- medical miracle workers, with the love of my family and friends, with my mother and all the nuns who took care of me as a little girl praying for me, that I will be around at least until 2010 so that I can take advantage of President Bush's elimination of the inheritance tax.


FERRARO: And hopefully even after that so that I can be invited to the inauguration of the first female president of the United States, senators.


FERRARO: In the meantime, however, I as well as every other multiple myeloma patient, am hoping that you, senators, will provide help to these doctors so they can continue their research and eventually find a cure to this disease.

Again, thank you, Mr. Chairman, Senator Specter, Senator Hutchison, Senator Murray, Senator...

SEN. ARLEN SPECTER (R), PENNSYLVANIA: Well, thank you very much, Congresswoman Ferraro.


SPECTER: We very much appreciate -- we very much appreciate your coming forward, and the quality of your testimony. And we're pleased that you used this occasion to announce your candidacy for the presidency.


SPECTER: Some may have noticed that the red light was on a little longer than usual. The prerogative of the chair is to allow that where you have ex-vice presidential candidates who are women.

FERRARO: I appreciate that, senator, thank you.

SPECTER: And I'm going to waive my four minutes to make up for most of the extra time.

FERRARO: Thank you.

SPECTER: Senator Murray has a commitment, and wanted to make just one brief comment before excusing herself -- Senator Murray.

SEN. PATRICIA MURRAY (D), WASHINGTON: Thank you, Mr. Chairman, for accommodating me.

Ms. Ferraro, I just want to thank you. You have been a role model for so many women who are in politics, I being one of them. Watching you run for vice president was an inspiration to many of us and, I know, to many, many young women in this country still today who now see politics as something they can do. I would not be sitting on this committee in this place without people like you who've paved the way. You are doing it again with your courage and your humor, and enlightening all of us about how we need to take on another little issue, blood cancers. And I just want to thank you so much for all you've done for so many of us.

Thank you very much.

SPECTER: Thank you, Senator Murray.


SPECTER: We now turn to Ms. Kathy Giusti, who founded the Multiple Myeloma Research Foundation, in 1996, after being diagnosed with the ailment. She brings 16 years of experience as a pharmaceutical executive to her role as president of the foundation.

Thank you for joining us, and we look forward to your testimony.

KATHY GIUSTI, FOUNDER, MULTIPLE MYELOMA RESEARCH FOUNDATION: Thank you so much, Mr. Chairman, and Senator Hutchison.

KAGAN: We've been listening to former vice presidential candidate, former Congresswoman Geraldine Ferraro, as she testifies before a Senate committee, talking about her battle with cancer, using her characteristic strength and humor to talk about the battle that she has faced since 1998, fighting a disease called multiple myeloma. That is a blood cancer that attacks the bones. Basically, Mrs. Ferraro asking for more research dollars, and also for faster approval for drugs. She herself explained how she is using thalidomide. It is a controversial drug; it is doing very well for her in her battle against cancer.

I trust this is not the last we'll be hearing from Mrs. Ferraro.