Jo Oberstar Breast Cancer Memorial Lecture


The George Washington University
January 28, 1999

I am extremely honored to be here this evening and to participate, along with all of you, in an event that is rightly dedicated to the memory of an extraordinary woman. I know that there are many of you in this audience who were friends of Jo Oberstar. You were part of her support system. You knew her, you loved her, you worked with her; you honored her as a wife and mother, a friend, an activist, a peacemaker, and your own role model. And it is entirely fitting that we would take this time to remember someone who made such a lasting impression--not only to those nearest to her, but through a ripple effect to so many others.

I want to thank the Congressman for inviting me to give this lecture. But more than that, I want to thank him for his example and leadership. When I think of him, I see him standing in the well of the House in the early 1990s, speaking out against those who claimed we did not need any more funding for breast cancer. That we certainly did not need to have funding in the Defense Department Budget [for breast cancer]. That we did not need to respond to this disease with all of our resources as something that required special attention. Year after year, Congressman Oberstar fought for all he could obtain from the Congress for breast cancer research, treatment, and early detection. And I think that you saw this evening that he combines a love of his family--even at the risk of embarrassing his daughters in front of all of us -- and a real commitment to public service, something that I applaud and for which I am very grateful.

I also want to thank our hosts this evening, especially President and Mrs. Trachtenberg and Vice President Williams[of The George Washington University] and Jean Lynn[GW Breast Care Center]. I am very proud of this university and all that it has achieved, even in the few short years that I have been your neighbor. I sometimes walk by the buildings where students are living and working. I certainly am well aware of all of the activities that go on here and the extraordinary commitment that you have made to the education of generations of young people, and every May, I hear your graduation ceremonies as they unfold on the mall. [Laughter.]

I am also grateful for the extraordinary service that the medical center and hospital provide, and I especially want to thank Jean Lynn, who is the heart and soul of the Breast Care Center. Every day women come to the center for state-of-the-art treatment and compassionate care, and every day, the Center goes to women. It is hard to miss the big white 40-foot Mammovan as it rolls up in front of churches and community centers across Washington, bringing mammography to women who cannot afford it. I want to congratulate Jean and the Breast Care Center and the Mammovan--which I have kind of personalized here--on being awarded an $80,000 grant from “Race for the Cure” just yesterday. [Applause.] The Breast Care Center and Mammovan are making an enormous difference in the lives of countless women.

I am told that throughout her valiant struggle against breast cancer, Jo reminded everyone near her of the most important things in life: faith, family, and love. She told her children and other young people to “complete your education; but remember, at the end of your life when you're dying, degrees won't come and hold your hand.” And so she reached out her hands to every woman facing breast cancer, every woman who needed to know the importance of self-exams, regular check-ups, and early treatment, every woman who needed a shoulder to cry on and a friend to lean on--someone who simply understood her pain. I am told that, often, at home, the phone would ring, and on the other end of the line would be a woman who had just been diagnosed and had been given Jo's number. Jo would often drop whatever she was doing and drive out into the night to go comfort someone whom she was meeting for the first time. She was determined, as the Congressman has told us, that from all her pain and suffering something good would come for other women. Hers was a lesson of courage and commitment, faith and family. And it was really women like Jo who were pioneers in teaching us all about this disease and how to respond.

You know, it was not so long ago that Betty Ford brought this disease out of the shadows by telling the world that she had breast cancer and had had a mastectomy. It must seem odd or even quaint for the young people in this audience to imagine that, back in the early 1970s, this was a disease people did not talk about. I remember when the woman who lived across the street from me when I was growing up in the 1950s and early 1960s was diagnosed with breast cancer. It was a subject nobody would address. Thank goodness that women like Betty Ford, and then later, Happy Rockefeller and others of public note began talking about this disease in very personal terms. And thank goodness for someone like Jo, who never ever let anyone forget that this was something she was struggling with, but that she felt an obligation to speak out about.

Betty Ford even joked about breast cancer. She joked about the time when, after her surgery, she was playing touch football with a few members of the Secret Service. In the middle of the game, her prosthesis slipped and she was somehow able to keep it in her t-shirt without anyone knowing. But more than that, she said she learned that day that she was still able, not only to play touch football, but also to laugh and to live.

Well, Jo lived for a while, and during those years she made us look differently at breast cancer. No longer are the words “breast cancer” whispered in the shadows, shrouded in ignorance or even apathy. Women living with breast cancer grace the pages of People Magazine or SELF or Good Housekeeping and appear on television shows. We log onto the Internet and we can visit more than 33,000 websites about breast cancer. And when 500,000 people Race for the Cure in Washington, D.C. every year, they run for their mothers, sisters, their wives, their daughters, their neighbors and colleagues and friends, and they run for themselves.

Not a single one of us has been untouched by this disease. I certainly recall my late mother-in-law who confronted breast cancer with the same good humor and courage that she confronted her entire life. We all come to this lecture and this subject with faces in our minds.

Just in the last three months, I have held the hands, and put an arm around and talked on the phone with dear friends of mine who have been diagnosed with breast cancer. I have talked with family members whose mothers and wives are in the last stages of breast cancer. And I have thought a lot about the progress we have made and the work that still lies ahead.

Back in 1991, when former Congresswoman Mary Rose Oakar gave the first Jo Oberstar Lecture, who would have thought that today we would be here and would have seen revolutionary breakthroughs in breast cancer prevention, early detection, and treatment? Who would have thought that the breast cancer death rate would decline almost five percent? That we would find genes linked to hereditary breast cancer, or environmental factors that we believe contribute to the disease?

Who would have thought that NASA would be able to use silicon chips from the Hubble Space Telescope to detect tiny spots in the breast tissue with needles instead of surgery? Or that we would see a whole new generation of drugs that are more effective, less toxic and, until recently, were not even imagined.

With Tamoxifen, we proved that it is possible, actually, to reduce the risk of breast cancer in some women by about 50 percent. With a drug like Herceptin, we now know that we can attack the molecular machinery of a tumor; that even in advanced breast cancer, tumors can be significantly reduced and life extended.

It seems, and we hope it is true, that we are finally turning the corner in the battle against breast cancer. And it probably cannot be said enough that, even though we have incredibly dedicated scientists, researchers, medical doctors and nurses, much of the progress, I believe, would not have been possible without activists like Jo, who knew that we could do better and who demanded a central role in this fight--both on their own and on our nation's behalf.

Every day there are more women asking questions, reading journal articles, talking to friends, logging onto the Internet. It is not uncommon these days for a woman to walk into her doctor's office with a list of clinical trials in her hand, eager to discuss them. There are now consumers sitting on peer review panels and changing the way scientists look at research.

In 1992, during the presidential campaign, I was invited to visit with a group of breast cancer survivors in Williamsburg, Virginia. I sat around a big table, with a large group of women, and listened to their stories. Many of them knew that they did not have much longer to live; others had lived with the disease for decades. But each of them was committed to making sure her story contributed to a change in attitude, from the top of our government to the bottom, so that we would respect and work with the women who knew more about this disease than the rest of us, and we would follow their lead in making sure that their perceptions and opinions played a role in influencing how we fought breast cancer.

In 1993, after my husband was elected, we invited a group of these advocates to come to the East Room of the White House. They came all right. They were armed with signatures from 2.6 million Americans demanding that we create a public-private partnership. And we did the first National Action Plan on Breast Cancer. It has just one goal, a goal that my husband stated that day in the East Room, and that he has worked tirelessly to achieve: (that is) the complete eradication of breast cancer.

Now we knew that in order to reach that goal, we could not afford to argue about whether research, treatment, early detection, or prevention is the best course of action. We needed to pursue all of those strategies, so we have. We have worked hard to ensure that women have access to mammograms they can trust and afford. At DOD, NASA, and even the CIA, we are using high-tech imaging to help find breast cancer early. I remember when I went over to the CIA a few years ago to get a briefing about their work. Certainly, many of us who watched the televised coverage of our efforts against Saddam Hussein back in the Gulf War remember seeing missiles that were targeted so precisely that they went down chimneys. And it struck some of us that if we could send a missile down a chimney thousands of miles away, we ought to be able to find microscopic lumps in women's breasts.

So I was in one of those CIA briefing rooms that make you feel like you are in a movie with Harrison Ford, and they were projecting on the screen the images that they were developing from the work they were doing. I was very pleased that, as the Congressman said, we were getting a peace dividend that would go toward women's health. Just recently, the National Cancer Institute created something called a Risk Disc that helps doctors calculate their patients' risks of breast cancer and talk to them about those risks. We have also made the kind of steady and sustained investments in research that the Congressman referred to.

In this first lecture that was held when Congresswoman Oakar spoke, she called for a $50 million increase in breast cancer research. At the time, that was very controversial. But those who have studied the disease and those who have suffered from the disease knew that if we did not increase the dollars we spent on research, we would lose precious time. So from 1993 to 1999, we have increased funding for breast cancer to more than $600 million. But we cannot rest on that. We cannot back down when we still have around 180,000 women who will be diagnosed with breast cancer this year, and when 43,000 will die. Some people when they write about breast cancer, I have noticed recently, say, “Well, you know, breast cancer is the second leading cause of cancer deaths and cancer for women.” And that is true. The leading cause now is lung cancer. But we all know what causes most lung cancer, don't we? When women are now gaining on men with the rate of lung cancer, that is a decision that individual women are making which we hope they will stop, reverse, or never make--to start using tobacco products, principally cigarettes.

But we still do not know what causes breast cancer. We have theories, and we are making some progress that might lead toward breakthroughs in understanding the disease. But we cannot, with a straight face, tell young women what they must do to avoid or, at least, decrease their chances of having this disease. We can do that with lung cancer, but with breast cancer, we are still struggling. And we are spending a lot of time and effort trying to understand what individual women, groups of women, regions of women must do.

A friend of mine, recently diagnosed with breast cancer, who lives in the Washington area was told by her physician that Montgomery County, Maryland, has one of the highest rates of breast cancer in the entire country. We know that there are areas of Long Island that have very high rates of breast cancer, but we do not yet know why. We also know that women of African-American or other ethnic heritage other than Caucasian are still suffering from breast cancer and dying at a much higher rate. We have seen progress with respect to the African-American death rate, but not nearly enough. It is unacceptable that we have any group of American women suffering from this disease at a higher rate. It is also unacceptable that, because of the poverty in large parts of our nation's capital, we have one of the highest breast cancer mortality rates in the nation--right here in Washington, D.C. That is why the Mammovan is so important, because we still have not done what we should do to make sure all women can protect themselves against breast cancer today and have access to early diagnosis.

There are a number of steps we have to take to enable us to tell any woman that we will do all we can, we are doing all we can, to make sure that we have devised a means for her either to have her disease diagnosed early or, eventually, to prevent or cure it. First, all women must have access to quality, affordable mammograms and other forms of detection. There were some in the breast cancer community who were concerned that putting any time or energy into mammograms would take time and energy away from research. But we never saw that as a zero sum game.

There are millions of American women who do not have mammograms and yet they should. Many of them cannot afford them, or they are afraid of them, or they feel embarrassed by them. And, as hard as it may be to believe, some simply have never heard of them which is why we have reached out to 1.7 million vulnerable women with free or low-cost mammograms. We have made sure that Medicare helps pay for mammograms for women, and we have launched an education campaign to convince older women to take advantage of the Medicare benefit, and get a mammogram. One of the most interesting experiences that I have had in the last several years is speaking with women, particularly older women, about mammograms. I have had the most amazing conversations, right out in public in front of everybody. I have had women say, “I don't need to get one of those; my husband died 10 years ago; it doesn't make any difference.”

I have had other women tell me that they could not imagine doing that in front of any other person. But one the most gratifying experiences I have had was convincing women to have a mammogram, and I recently received a letter from one who heard about the campaign and got a mammogram; the screening revealed two malignant tumors, and she was lucky because they were caught before they spread.

But we still have a big public education campaign ahead of us to convince every woman who should have a mammogram to do so. In addition, mammography must be affordable. I am still somewhat embarrassed and even amazed when I meet a woman who tells me she does not get a mammogram because she cannot afford it. And even worse, I have had women tell me they have gotten mammograms because of a free van or some other services, and they have been told that they should go to a surgeon based on the result of the mammogram, but they cannot afford to do so because they have no health insurance.

Which brings me to our second challenge: if all women are going to reap the benefits of the progress we are making on breast cancer, then they must be able to access quality health care. When a woman is diagnosed with breast cancer, she should feel confident that she can get the care she needs, and if she is already insured, she should feel confident that managed care will not mean less care. She and her doctor--not bureaucrats or bookkeepers--should make decisions about her health.

One of the reasons that it is so important that we establish basic rights for patients is the many stories we have heard about what happens when a woman is already embarked on a course of treatment with a physician she trusts, and her employer switches health plans, and she is then told that she has to switch doctors. Imagine how you would feel. Maybe some of you have already experienced this: “You have to go somewhere else; this doctor is not in our plan.” Or even worse, being told, “We'll get to you eventually,” and time slips away and a malignancy gets worse.

It is very important that we work in the Congress to pass a Patient's Bill of Rights that will guarantee to cancer patients--breast cancer patients--their right to the treatment they need to have. It is also time to ensure that Medicare reimburses patients who need access to the most advanced research and to allow people with disabilities and chronic illnesses such as breast cancer to buy coverage from Medicare. We have a great challenge facing us because the incidence of breast cancer does go up as women get older, and there is a gap in the coverage that many women have before they are eligible for Medicare. We have to be sure that they can have access to the health care they need.

We also have to be sure that we recognize the continuing fear that women face when it comes to breast cancer. I have in the last weeks talked with some friends who have been diagnosed with breast cancer. And they face the hard decision: whether to have a mastectomy, have a limited mastectomy, have a lumpectomy, have whatever other treatment may be available to them. And they have to think long and hard about those decisions.

It is a very tough decision. Doctor, friends of mine, who treat women with breast cancer tell me all the time that it is one of the most difficult moments in their practice: sitting down with a woman and going through the options that she has. There are many cultural and social and psychological attitudes that affect these decisions, probably more than any other of which I am aware. And the more we do to reach out a hand, as Jo did, to all the women who have to make these choices, the more we help them feel confident about the decisions they make.

So there is a lot of work to do. We must be sure that these incredible advances that we are seeing made possible with the human genome do not disadvantage women who are genetically predisposed to breast cancer or any person genetically predisposed to any condition or disease. A person's privacy must be protected, and we must outlaw genetic discrimination. What good does it do to have tests that would help save women's lives, if when they have the test and find out that they are genetically predisposed, they lose the health insurance they need in order to deal with their condition? There must be an end to any kind of genetic discrimination that would in any way close the door to affordable health insurance.

We also have to make sure that because someone has a genetic risk, they understand it does not automatically mean they will get the disease. A doctor friend of mine says that when it comes to breast cancer, ignorance is not bliss. Women have to be aware of all the various aspects of this disease, and that really is the purpose of this Memorial Lecture.

At least once a year in a public forum someone comes and speaks about this disease. The scientists come and tell us about the research advances that are occurring. The public policy officials come and tell us about the public response that is occurring. And lay people like me come and beg that women--all of us--are given the information and resources we need to deal with this disease.

There are no guarantees for any of us. None of the women I know who has breast cancer has a genetic predisposition. None of them has known risk factors that clearly signal that she is a candidate for breast cancer. But here they are, facing these obstacles, just as Jo and her family faced them some years ago.

One of the best ways we can deal with the pain and the fear that breast cancer engenders is to keep in mind the image of Jo Oberstar with her arms outstretched to all that she could reach. Now we heard Jim talk about the conversation that he had with Jo after her surgery. And you know, like the devoted husband he was, he was doing his best to encourage and support her. And she was realistic; she understood the odds against her. But that realism did not undermine her hope.

The other night at the White House, we had one of the Millennium Lectures that we started to try to encourage all of us to think about our past, our present, and our future. And we talked that evening with a history professor and a theologian about what the Millennium means and what it had meant to the last thousand years--how it represented for some people a pathologic fear, but for others, hopefulness. People can look at the same reality and reach very different conclusions, can't they? People can look at breast cancer and be so afraid and scared that they will not even have a mammogram, be so worried that they do not even want to do a self-exam, or be so overwhelmed and depressed if they are diagnosed that they will not be able to reach out to anyone--even those closest to them who want to love and support them.

What is important about the example and the model of the woman we honor tonight is that she combined hope with realism. She understood very well what she was up against, but that did not discourage or deter her from hoping that she could in some way make a contribution to others that would make life better. Now it is up to us to finish the journey that she began. We can do that in many ways: we can support the President and members of Congress like Congressman Oberstar to make sure that we get the commitment that research continues, making a difference in people's lives; that we change legislation like Medicare and pass a Patient's Bill of Rights to equip people with the power and the rights they deserve to have to deal with this disease. We can be sure that we are part of a public education campaign to reach as many women and men as we can about what is happening with breast cancer and how we need to respond to it. Ultimately, it comes down to a question of commitment and courage. Many of us will face this disease in our own lives and the lives of people we care deeply about. We will have to decide whether we meet it with fear or hope, whether we are unrealistic to the point that our support is not helpful, or whether we are prepared to look it straight in the eye. And we will all hope that in the next century, this will be a disease that we will conquer, that we will be able to control and manage--that we will cure.

By then young women like Jo's daughters and all of the others who have been affected by this disease will not have to fear for it themselves and will have to look in history books to find out the devastating effect it had on the lives of so many women and their families. When we reach that point, as I hope and I pray and I trust that we will, we will get there certainly through the efforts of all of the researchers, and the scientists, and the doctors. But I think that we will get there primarily on the strength of the spirit of women like Jo Oberstar.

Thank you very much! [Applause.]


January 1999

Long-Term Care

Dolly Madison Commemorative Silver Dollar Unveiling

RUSH Presbyterian

Eid Al-Fitr Celebration

Mars Millennium Project

Qualified Teachers in Every Classroom Event

Families Agenda Rountable

NARAL Anniversary Luncheon

Social Security Teleconference

Foster Care Tranitioning

Jo Oberstar Breast Cancer Memorial Lecture

U.S. Conference of Mayors

Elizabeth Glaser Pediatric AIDS Foundation Awards

Fifth Millennium Evening: Meaning of the Millennium

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