A sense of belonging. A desire for civility. Both seem necessary for a welcoming and respectful society. But what happens when these ideas backfire?
Guest Host: Rebecca Roberts
Contemporary breast cancer awareness is perky, positive, and, above all, pink. With more and more products going pink for breast cancer, it may be relevant to consider how the “pinkification” of the disease has shaped the reality of breast cancer in America today. We talk with sociologist and author Gayle Sulik about the impact of “pink ribbon culture” on breast cancer and women’s health.
- Gayle Sulik Author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health" (Oxford University Press); Research Associate in the Department of Women’s Studies at the University at Albany
MS. REBECCA ROBERTSFrom WAMU 88.5 at American University in Washington welcome to "The Kojo Nnamdi Show" connecting your community with the world. I'm Rebecca Roberts sitting in for Kojo. Whether you've had a personal experience with breast cancer or not, you've no doubt encountered that pink ribbon. It's a little piece of fabric that says a lot about breast cancer and American life. While it's a symbol designed to raise awareness, the color pink also raises questions about how contemporary breast cancer awareness movements have influenced the way we think about the disease.
MS. REBECCA ROBERTSCan a little pink ribbon make a big difference in women's health? Gayle Sulik thinks so, but not necessarily in a good way. She's here to explain why you should think before you pink. Gayle Sulik is the author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." She's a research associate in the Department of Women's Studies at the University of Albany, but instead of joining us from northern New York, she's joining us from northern Texas. She's at the studios of North Texas University in Denton. Welcome to "The Kojo Nnamdi Show."
MS. GAYLE SULIKHello, Rebecca, thanks for having me.
ROBERTSSo the moment that I realized that the pink ribbon thing had completely saturated American culture was last fall, in October, during Breast Cancer Awareness Month, when NFL players were wearing pink cleats...
ROBERTS...during professional football games. Where did the pink ribbon come from and how did it morph from a little piece of satin on someone's lapel to the NFL?
SULIKYeah, that's a good question and a huge process that made that happen. The pink ribbon actually came about in 1992. And prior to the pink ribbon, there was actually a peach ribbon that was really -- the idea behind that was to increase funding through the National Cancer Institute for breast cancer. But the peach ribbon didn't take hold at that point. The ribbon came out of Estee Lauder and Self magazine, who decided to create the ribbon as a pink ribbon instead and that connected with femininity and was a little bit safer and enabled the cause itself to have a bit of a good feeling, a pretty feeling about it.
SULIKAnd from then on, kind of the corporate connection with the ribbon grew and grew and grew in conjunction with advocacy and attention and visibility. And as more corporate interests came to breast cancer, then you started to see ribbons showing up on everything. And in the last ten years, it has grown exponentially so that you actually would see a ribbon during half-time at the NFL.
ROBERTSAnd you know, other than maybe being annoyingly ubiquitous or not your favorite color or something like that, if it's about awareness and advocacy, why be critical?
SULIKYeah, well, if it's about awareness and advocacy, I agree. Why be critical? And so my question is, how do we know actually what we're becoming aware of when we see the ribbon? And what I have found in looking at advertising and promotional materials, whether it's through something you might see in a magazine, there are many, many ads for breast cancer -- or whether it's something you might see in a promotion for an advocacy group or an event, you just see the pink without much attention to what it is that's beneath it. And so I'm asking people to look beneath the pink and really consider, what is it that we're being made aware of?
SULIKAnd if you ask people on the street, they'll say breast cancer. And you say, okay, now what? Get your mammogram, okay. Now what? And that's really the extent of it. So I'm just asking people to look a little bit deeper.
ROBERTSWell let's turn it out to our audience. What do you think of when you see the pink ribbon? Have you found strength in it, if you're a breast cancer survivor? Are there things you'd like to see change about the breast cancer awareness movement? You can join us at 800-433-8850 or e-mail us, email@example.com You can also get in touch with us through our Facebook page or by sending us a tweet @kojoshow.
ROBERTSYou know, I actually just stumbled on saying breast cancer survivor because I know a lot of people don't like that word. It was meant to be an alternative to patient, which people find even harder to take, but it gets to this whole idea that you talk about in "Pink Ribbon Blues" that there's supposed to be this whole heroic survivor culture of optimism and happiness in pinkness.
SULIKYes. And survivor, in addition to being a new kind of identity as opposed to patient, it's also as opposed to victim. And I think one of the reasons that the term survivor really took hold was it removed the victimhood from breast cancer and it removed it, in a sense, from cancer as well. But with the rise of the ribbon and the imagery surrounding the ribbon and pink and survivorship, as it's become more central to advocacy and public awareness and within mass media and all of that, there's become a particular definition of survivor, which is, as you said, heroic and triumphant and joyful and that model doesn't fit everyone. It does fit some people, but it doesn't fit others.
SULIKAnd so by promoting that as the one ideal way to deal with breast cancer, it's kind of leaving a lot of other ways out.
ROBERTSWell do you think that is specific and gendered in the sense of breast cancer? I mean, isn't Live Strong the same message?
SULIKOh, sure, that is the same message, in terms of courage and triumph. And the war metaphor that goes along with cancer survivorship in much of the culture certainly applies across the board to different cancers. So absolutely. The fact that the pink ribbon has been attached to breast cancer itself, it has become very feminized. And so with the ribbon, you'll see images of good womanhood and innocence and solidarity and sisterhood. Oh, there's a technical difficulty here.
ROBERTSYeah, and now we're suddenly hearing an echo on you there. I'll tell you what, we are going to try to work on it from our end, but in the meantime, let's take a call. This is Joe in Annapolis, Md. Hey, Joe, welcome to "The Kojo Nnamdi Show."
JOEAll right, thank you very much. I'm calling as a man who is -- okay, has a very vested interest in the progress in breast cancer with the women in my life, including my two daughters. And my comment and question I pose for the ladies on the program here is this ribbon campaign, I think, does raise awareness, but there's one particular version that I see all the time that I personally take offense at. And it's the Save the Ta-Tas, which is plastered on the back of cars and I think it both cheapens the message as well as kind of debases the cut of the conversation. And I wonder what's behind it? Anybody know, who thinks that's a good idea and to what extent does that particularly counter to the progress message we're trying to get out there?
ROBERTSJoe thanks for your call. Yeah, Gayle Sulik talks about Save the Ta-Tas and other sorts of sexy breast cancer messages, as you know, the next extension of some of this pink ribbon campaign. What's your answer for Joe?
SULIKYeah, it's actually -- that's a really good, really good example and it's something that has the -- the attention has come to the Save the Ta-Tas and I Love Boobies and I Heart Boobies, all those kinds of sexy campaigns. And I agree with the caller. I think it does and adds to the commercialization. It certainly trivializes and it brings attention specifically to the breast. I mean, when you look at advertising around breast cancer compared to any other condition, illness, disease, however you want to describe it, you see skin, you see cleavage, you see femininity and you see sexiness.
SULIKAnd you don't see that with other diseases and so I think that it's very popular. It's especially popular in terms of targeting toward younger women and in colleges, schools, even middle schools, younger kids. And it really creates a sexiness around it that draws attention away from the realities, the very difficult realities of the disease. You might also ask does that money go anywhere. And depending on the program that you're looking at, it may or may not. A number of those campaigns are for commercial purposes only.
ROBERTSThere is -- whether or not you find Save the Ta-Tas appropriate, there was a time not so long ago in this country, and there are many examples still going on, when there was not enough research money put into diseases that predominately manifested in women, that, you know, all heart disease research was done on male studies. And is there a way to highlight the fact that this is a female-dominated disease, that there are specific needs for women who get this disease, and make it clear that it actually is gendered?
ROBERTSI mean, of course, there is a percentage of breast cancers in men, but predominately female -- without it being offensive. Where is the line there?
SULIKThat's such a good question. Where is the line? And that's the question that really -- the public is getting engaged in that question at this point. And I think with the ta-tas, the boobies, the sexiness, the NFL, the chicken, the perfume, all of that is really begging the question, where do we draw the line with awareness? What's happening? And you're absolutely correct that one of the huge positives with breast cancer advocacy and the visibility of which the ribbon was central, that symbol was vitally important for that, there was a substantial rise, not only in attention to women's health, but into research.
SULIKResearch dollars went up at the federal level considerably. And so I think we shouldn't lose sight of that. And so your question of where to draw the line, I think that's a question that we need varied sectors of the community to come together and discern. Where do we draw the line? I argue that we might draw the line at the booby stuff perhaps.
ROBERTSLet's hear from Tracy in Sterling, Va. Tracy welcome to "The Kojo Nnamdi Show."
TRACYHi, thank you for having me on.
TRACYI was calling just about the comments about the bumper stickers, the Save the Ta-Tas in particular. I do have that bumper sticker. I was diagnosed with breast cancer when I was 40 and most of the support groups and most of the information and most of the -- any of the pamphlets you pick up, everybody is white-haired. And so I got that bumper sticker as a way of expressing out there that there are younger women who have breast cancer and it's not all about the pink ribbon. And so I just wanted to express what -- you did allude to it a little bit, your guest alluded to it a little bit, in saying, you know, that there are younger people and these campaigns are geared toward younger people.
TRACYBut I think, even as a breast cancer survivor, not finding the scope of programs for younger people, that the breast -- that particular bumper sticker was very meaningful for me.
ROBERTSTracy, thank you for your call. Gayle Sulik?
SULIKYeah, it's a great point and thank you for calling in. And the idea that breast cancer typically affects older women, about 6 percent of breast cancers are actually in women 40 or under. And so it's crucial, if you're diagnosed at a younger age, that there be resources available to you, whether you're diagnosed with breast cancer or another kind of cancer. And she's absolutely right that the programs are minimal for younger people. And so I hear that person, in terms of having something meaningful out there to say, you know, we exist, too.
SULIKAnd I think that it is one of the big issues with pink ribbon culture is that there has been created kind of a box, a breast cancer box with a pink ribbon on it. And there is one way to deal with breast cancer and you join the sisterhood and you come in and you're going to be fine. You're going to triumph. And yet there are many caveats to that, groups of people who are less supported, younger people being one group. And the idea that we could actually come forward and say there are diverse ways of dealing with breast cancer, of supporting one another, of bringing attention and awareness, that's something that needs to be infused within the culture in general.
ROBERTSWe are talking about the pink ribbon culture of breast awareness with Gayle Sulik. She's the author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." And we'd like to hear from you. You can give us a call at 800-433-8850 or send us e-mail, firstname.lastname@example.org. What would you like to see change or remain the same in the contemporary breast cancer awareness movement? We will take more of your calls and e-mails after this quick break. I'm Rebecca Roberts sitting in for Kojo Nnamdi.
ROBERTSWelcome back. I'm Rebecca Roberts sitting in on "The Kojo Nnamdi Show." My guest in Gayle Sulik, the author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." And as I look at these phone calls and e-mails coming in, there is one name that keeps popping up and that is the Komen foundation or officially the Susan G. Komen for the Cure. They so dominate breast cancer awareness and fundraising.
ROBERTSAnd I should say in the interest of full disclosure, I am no longer on the local advisory board of the Susan G. Komen Global Race for the Cure, which is the D.C. version, but I did serve on that advisory board for a couple of years. But let me get to some of these calls so that we can talk about their role in this world. This Ryan in Potomac, Md. Ryan, welcome to "The Kojo Nnamdi Show."
RYANHi Rebecca, I'm just wondering exactly how much of that money, that is raised by Susan G. Komen, actually goes toward breast cancer research? I mean, because they're on everything from M&Ms to, you know, to, you know, flowers and ribbons and everything else. I mean, I just wonder if it's anything like the Red Cross where they're taking all this money, like, for Haiti and you got kids that are getting hit by cars, still living in a tent in a median strip.
RYANBut they took in $250 million, you know, so I mean, there's all this money going to administrative costs and people are taking these exorbitant salaries and then money really isn't going toward the actual funding of the research or -- so I just wonder, what's the deal?
ROBERTSRyan, thanks for your call. Gayle?
SULIKYeah, good question. And that -- much of this information is available in the financial -- the audited financial report that is available on a number of the organizational websites, including Komen's. In 2010, about 20 percent went to research and that averaged out to be about 16 percent of total revenues. And the revenues were over $300 million, I think about $335 million.
SULIKAnd so that is one of the issues that has been raised by a number of people in terms of, you know, maybe, we'd be okay with all of this if more of the money actually went to research. And I know that that's something Komen is dealing with now.
ROBERTSAnd we should say that we did hear from Andrea Raider from Komen for the Cure and she wants to make sure that we point out that there are other funds that go to other programs other than research. So it's not just research and overhead. Those aren't the only choices.
ROBERTSThat they do, you know, provide services for low income women to, you know, get a ride to their mammogram and nutritional advice and all sorts of things like that.
SULIKYeah, and about 40 percent of Komen's budget falls into that education category. And so for listeners, I would suggest to go to the financial report, the annual report, and take a look at where the money is being allocated.
ROBERTSAnd as to those partnerships with food, you know, Yoplait yogurt, there's a bunch of different things. We have an e-mail from Susan who says, "As a dietician, I'm most appalled by the pink ribbon appearing on some of the very foods that associated with breast cancer risk. According to the Komen website, they've worked with Pepperidge Farm to promote cookies, Sullivan's Steak House to promote steak, the Village Inn restaurant to sell pink ribbon French silk pie."
ROBERTS"Boris had to sell pink ribbon eve roast, chicken salad croissants, Dove chocolates to sell chocolates and perhaps the most horrific, the pink bucket at KFC. Why not sell pink cigarette packs and give the proceeds to lung cancer research?" And I must just read Andrea Raider from Komen's response to that. She says that they do not partner with -- she says -- I'll just quote this, "Komen's vetting process is rigid, 4400 inquired last year, just over a 100 chosen, selected for commitment to movement and rejected if link to breast cancer is proven." So Gayle Sulik, let's give you your side of that.
SULIKIt's A thorny, thorny, thorny issue there. And, you know, where you draw the line, this is a question that will come back over and over again in various aspects of pink ribbon culture. And I think, you know, as much as Komen certainly does have very specific criteria on who partners with them -- and a lot of people want to partner Because you get good press. If you associate with the pink ribbon, with breast cancer, you get really good press and you get good advertising.
SULIKAnd a lot of companies want to do that. And so I can understand that many would be turned away. At the same time, it's a really valid question that the caller has in terms of what are the types of goods, services, products, et cetera that are associated with the ribbon? Whether it's Komen or somebody else, could there be more stringent criteria, such that a particular project may not be increasing risk or contributing to either the cancer burden or chronic health situations in general?
SULIKCould those criteria be in place? And a number of organizations have suggested that and have even suggested that partnering or accepting funds from any organization that may potentially, whether it's proven or not, contribute to the cancer burden or profit from cancer, that that situation is an example of pink washing.
ROBERTSWell, define pink washing for us.
SULIKYes, so that would be exactly it. Pink washing would be selling a product or contributing money toward the cause of X while perhaps indirectly or directly contributing to X.
ROBERTSLet's take another call. This is Casey in Richmond, Va. Casey, you're on "The Kojo Nnamdi Show."
CASEYHi, I am a breast cancer warrior. I am not in love with the word survivor because there's the victim-ology there that I don't own. But I'm also an activist for early detection for all cancers. And this is where I think Komen has kind of dropped the ball, is that they were such a huge voice early on and they still continue to be on the early detection front.
CASEYBut much of their messages, you know, have just been completely washed away with all of this sort of co-branding with fried chicken and Avon products, which contain parabens, which have something of a potential link to breast cancer. And I just -- I'm flummoxed by the fact that a brand that had so much hope attached to it has ended up getting kind of washed down their own drain with pink water.
CASEYAs I struck you dumb.
ROBERTSThat's hard to do.
CASEYGayle, this is @mightcasey on Twitter, you and I have been talking a bit.
SULIKOh, okay, okay. Hello.
SULIKThanks for calling in. Yeah, it's -- I'm flummoxed, too, about much of what has gone on. And I do wonder, in terms of the branding and the focus on branding, how that may, in fact, be undermining much of the mission, whether it's, you know, the partnerships or the new product line with Promise Me cologne. There's a huge marketing focus and Komen has become a brand name, for sure, and a name that many people know in their homes.
SULIKAnd I do see a lot of effort toward that. And I agree that that has diminished the overall -- and has undermined the overall progress toward the ultimate goal of irradiation, in terms of early detection. And that's another issue in mammography ads, early detection, which is not the same thing, but it's often promoted as the same thing. That continues to be hugely controversial. With every study that comes out, every couple of months, it seems another study comes out. And so that's another issue we may want to tackle on this show.
ROBERTSWe are talking about the pink ribbon culture of breast cancer awareness. My guest is Gayle Sulik, her book is "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." And if you want to join the conversation to talk about the breast cancer awareness movement and what about it works for you or doesn't if you are a -- someone who has had breast cancer, if you are a health care professional, give us a call 800-433-8850 or send us e-mail, email@example.com.
ROBERTSYou can also get in touch with us through our Facebook page or by sending us a tweet to @kojoshow. What about the pink ribbon culture would you like to save, Gayle Sulik? I mean, what is the best of it that you think can continue to do something positive?
ROBERTSI think there's a lot that can be saved and part -- actually, a huge part of my goal in this book is to identify what works, what doesn't work so well, so that we can actually think about what we can save because there's no need to throw out the baby with the bathwater. And some of the progress that has been made, in terms of attention and research, which we discussed a little bit earlier, has been very successful and that can be maintained.
SULIKAnd research can also be redirected so that perhaps there can be greater progress in terms of metastatic disease, which is one of the areas that has been stalled, really, on the research arena. So that could happen. The attention and the visibility of the cause has been successful. There's a little bit of fatigue now that's happening. I think in terms of the branding and in terms of where the money goes, people are kind of tired of that and want to see that redirected.
SULIKBut there are over 1400 breast cancer advocacy organizations in the country. And many of them are working toward the goal of eradication in different ways, toward support in different ways. And I think bringing attention to what those organizations are doing could be very helpful. I think that one of the things Komen has done really well, also, is in terms of bringing people together. The races, even though they're not really great in terms of how much money is raised at -- on average, those kinds of things costs about 50 cents on a dollar to run.
SULIKThey can have the potential of bringing people together in solidarity for a day, for a while. And I think if we could galvanize that into some greater action, then we could see some real progress.
ROBERTSAnd in terms of research and advocacy groups that you think are heading in the right direction, is there a clearing house, is there some source of information where women who do want to participate in the cause and contribute money can get some understanding of where their dollars are going?
SULIKThere's no real clearing house, per se. There is a -- guidestar.org is a place where people can go and put in breast cancer and see lists of organizations. I've highlighted and profiled a number of organizations on my website, what people can read about them there. But there is no real -- there's no real watchdog going through them. Hopefully, in the next year, we'll see some of that. I'm actually working on some of that.
ROBERTSJane in Germantown, Md. joins us now. Jane, welcome to "The Kojo Nnamdi Show."
JANEHi, thank you so much for taking my call. I so appreciate the conversation today. I had a mastectomy two and a half years ago. I'm in my early 50s. One of my biggest concerns after that, of course, was the possible risk with my two daughters. And as much as they wanted to participate in the Komen races, I felt that the money that they had to raise, even to participate, was ridiculous.
JANEI've struggled with the merchandising of the pink ribbon and I also have struggled with the fact that so many of my women friends have had other types of cancers that affect women, primarily uterine and cervical cancer. I'd like to suggest that one of the real saints in this incredible fight is Dr. Susan Love. And I know many of you probably have read her books as being, really, the bible for breast health and breast care, before and after cancer.
JANEAnd I would just like to submit that the armyofwomen.org, that she has developed, is far more exciting and relevant to me because it really focuses on prevention. The thought being that we have really almost done as much as we can to treat and to assess and diagnose, but the real value, hopefully, of those of us like me who have cells now in databases around the country, is to learn more about how do we prevent this.
JANEAnd through the armyofwomen.org, she's done a wonderful job of encouraging women from all walks of life to sign up to get information about clinical trials that they may be able to participate in, many of which are not invasive, many of which do not involve women who have been diagnosed with breast cancer. But for me, that is really where I am putting my time, energy and focus. Thank you so much.
ROBERTSJane, thank you so much for your call.
SULIKYeah, that's a great point. And, I think, also that one of the things that kind of happened as a default response to the growth of the ribbon, is that it has hidden a number of other issues, whether it's cancers or other health conditions that people face. Lung cancer, a huge one, but also the other women's cancers. And so this is a really crucial point in terms of prevention of cancer. What can we do as a society to reduce the total cancer burden that we're facing?
SULIKAnd I absolutely agree that attention toward connections across cancers and across issues in terms of prevention and even treatment, in some cases, and support is something that would be a huge benefit and -- if the pink culture were to open up a little bit more and bring that in. And I also agree that armyofwomen is a great place for people to look, in terms of taking part in research, whether you've been diagnosed with cancer or not.
ROBERTSHow would you characterize preventative research these days? Has it comes a long way?
SULIKIt's moving. It's definitely increasing. The National Cancer institute actually has a center for environmental health research and science. And they have a number of centers around the country focusing on links between breast cancer and the environment and other cancers in the environment. Breast cancer fund is an organization that's been on the cutting edge of that, as well. And so there has been some significant movement there.
SULIKIt's not enough in my opinion, but there has been some significant movement there. And I think there's going to be more and, in fact, the breast cancer movement -- incidentally, when the ribbon really started to take hold in the early '90s, there was a split essentially within the breast cancer movement as a number of organizations formed alliances with environmental organizations and advocacy. And we can really see that happening within the total and broader breast cancer movement now.
ROBERTSWe have an e-mail from Larry who says, "I'd like to hear the authors thoughts regarding the fact that despite all the pink ribbons, most women do not know how to give themselves an effective monthly breast self exam, given that this is the best early detection strategy for breast cancer. Why does it seem so neglected in the media?"
SULIKThis is an interesting question because actually, the studies that have been done on breast self exam have found that it has not decreased mortality. So it's actually not being recommended anymore by Women's Health Organization, the National Cancer Institute, even the American Cancer Society has come out and said, do B.S.E. if you want to be aware in general, but don’t count on it in terms of diagnosing tumors early.
SULIKSo that's an issue that is crucial, since a number of organizations like probably some of the Ta-Ta's organizations focus a lot of B.S.E. But it's really not recommended, in terms of a general public health strategy, at this point, in terms of reducing mortality or finding tumors early.
ROBERTSWell, if breast self exam is questionable -- and you referred earlier to, you know, sort of moving guide lines about how affective mammography is, especially in younger women. If we're talking about early detection and so much of the breast cancer influence is on that because of the improved outcomes with early detection, what's a woman to do?
SULIKYeah, good question. What's a woman to do? And this has been going back and forth in terms of the guidelines. Should you do screening at 40 or 50 and all these things? And there's actually a really good article in the LA Times that came out today that basically has come out and said, the approach to screening really has to be individualized. And one of the crucial factors in terms of whether screening is accurate or not is related to tissue density.
SULIKAnd so in terms of getting a baseline, it might behoove women to find out what their tissue density is, maybe at 40 or something like that, and then decide, talk to their doctors, ask questions, to find out their particular profile, and then discern whether, and at what point, a particular screen regimen that they should take part in.
ROBERTSThat's Gayle Sulik. Her book is called "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." She's also a research associate in the department of women's studies at the University of Albany. And if you want to join our conversation about the pink ribbon culture and breast cancer, if you have questions about advocacy, awareness, treatment, if you have a pink ribbon blues moment of your own to share, give us a call. 800-433-8850 or send us e-mail, firstname.lastname@example.org. I'm Rebecca Roberts sitting in for Kojo Nnamdi. I'll be back after this quick break. Stay with us.
ROBERTSWelcome back. I'm Rebecca Roberts sitting in for Kojo Nnamdi. I'm talking with Gayle Sulik. She's the author of "Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health." And you can join us at 800-433-8850. There is a comment on our website from Deb who says, "I'm in my late 50s, and I can remember the days when breast cancer was not talked about."
ROBERTS"When I was a child and an adolescent, it was a whispered conversation held in dressing rooms and kitchens by aunties and sisters and mothers. The fact that the Pink Ribbon Campaign effectively brought the disease out into the open so that breast cancer -- and in fact, many diseases are now discussed on programs such as yours, that would have been unheard of in the '50s and '60s. And Save the Ta-Tas slant is a humorous take on the marketing that has helped to pull in younger women and even men.
ROBERTSThis is an extension of the old bodies ourselves view on women's health that is fearless and empowering." Gayle Sulik, what's your response to Deb?
SULIKCould be. I agree absolutely in terms of de-stigmatizing the disease. Another one of the tremendous outcomes from early advocacy, the rise of advocacy that came out of the women's health movement, the early breast cancer movement, and absolutely moving cancer -- breast cancer in particular, out of the closet into the light, absolutely one of the most crucial things and benefits that came out of advocacy.
SULIKSo I absolutely agree. And maybe, you know, I think that the issue with the Ta-Tas campaigns, you know, it really requires some contemplation in terms of how particular messages get used and perhaps used in different ways or maybe even co-opted for other purposes. So some of it has, I argue, been co-opted for commercial gain, for profit.
SULIKAnd that's -- I come in on it from that angle. Where is it really going? What is being sold here? I come on it from that angle. Where is it really going? What is being sold here? In terms of the empowerment potential, it varies among people and so I could imagine that some people would feel empowered by it. Not everyone will.
SULIKAnd in the context of sexy breast cancer, I think that's kind of where I see the particular Ta-Tas campaigns is within that bigger context of sexualizing and feminizing the disease.
ROBERTSAlthough, it's interesting, from Deb's perspective, to think of actually that as the breast cancer awareness movement co-opting things that could be sort of pejorative or dismissive about breasts, that instead of it being all sort of hush-hush and these medical words, that it's a way of taking these slang words and, you know, reminding people that's what we're talking about here, and making it easier to talk about.
SULIKIt could be. It could be. And perhaps, if in conjunction with that, people felt free to show their scars, if people felt free to go out in public without their wigs and other things like that, that would also bring attention to the realities of cancer, then I think that that argument would be even stronger.
ROBERTSLet's hear from Nan in Silver Spring, Md. Nan, welcome to "The Kojo Nnamdi Show."
NANHi. Thank you for taking my call. I want to applaud the author for her book, which I think is long overdue. I won't use the word survivor or warrior. I've had breast cancer twice is what I will say. And I found mine via self exams, so -- and it was a mere six weeks after a supposedly clean mammogram and a couple of clinical exams by competent surgeons.
NANSo I would strongly advocate that women continue to be aware of changes in their own breasts and not rely on the annual exam and, you know, just relax in between. My two major points that I just wanted to raise, and perhaps this is echoing things that have already been said, I'm all for raising funds, although I won't participate in all of these pink events.
NANBut I am very disturbed that more funding doesn't go to the etiology of breast cancer, and I suspect that a lot of it is that the bigger corporations who are behind all these fundraising events are actually kind of scared of what will be found out, you know. The prevalence of xenoestrogens in our cosmetics and phytoestrogens in our food, and lo and behold, 75 percent of breast cancers are estrogen driven.
NANAnd the other thing that I find very disturbing, in looking at the whole complex of money being raised and money being spent on research, is that I don't see research dollars going to treatment modalities, except those that offer income potential to oncologists and big pharma. And I have experienced this up close and personal in my own family where I actually researched a treatment modality that involved wearing a pump that dripped chemo into somebody's veins, rather than having to go for the bolus treatments in the clinic.
NANThe oncologist never offered it. But when I suggested it to him, he said, oh, you could do that. And that's not for breast cancer, that was for a different cancer, but why has there been no research into metronomic infusion of chemo for women having breast cancer? I would argue that the oncologist and big pharma don't stand to make any money from that. And I'll listen...
ROBERTSNan, thank you for your call.
ROBERTSAnd Gayle Sulik, you know, given all of this money that has been raised, and even if not a big enough percentage of it has gone to research, it's still a lot of money. How is the research doing? I mean, has treatment and prognosis changed?
SULIKYeah. Well, it's an excellent question. At this point in our social history, about 75 percent of clinical trials are actually done in the private sector now, and that didn't used to be the case. And so that profit motive is a really good point, and it's something that people who are within pharma have even admitted in terms of having to think about the bottom line and the largest population that they can sell a drug to.
SULIKSo that is a huge issue. But in terms of what's happened, probably the development of herceptin, which was back in the -- I think it was the late '90s, actually was probably the number one drug that has had a major impact on breast cancer. And we haven't really seen a repeat in terms of the development of a really -- of a drug that can really have a good effect since herceptin.
SULIKSo I think the caller is right that the profit mode and where the research is being done has impeded that.
ROBERTSOur listeners might have heard, over the last couple of weeks, news about the drug Avastin. Can you update our listeners on that?
SULIKSure. Avastin actually is a drug that was fast-tracked through the FDA based on one trial that showed potential and promise in terms of reducing blood supply to tumors. And so if blood vessels would not be formed and would not feed them, then potentially it would stop those tumors from growing. And it looked positive and so it was approved, based on that with the idea that more trials would be done, and to confirm whether or not it actually had a benefit in terms of survival and quality of life.
SULIKAnd since then, four other trials have been done and those trials did not show any benefit in terms of survival. But what they did show is some really tremendous side effects. That was very concerning. They included perforations in the stomach, the intestines, congestive heart failure and stroke, heart attack, and one percent of the patients died.
SULIKAnd so FDA came back and looked at all of that data and said, okay, we're gonna withdraw approval for metastatic breast cancer. And then Genentech had lobbied against it, appealed it, and then just last week there was another panel that looked at it, and the FDA unanimously voted again that it could not approve the drug based on the fact that it didn't improve survival and because of all of the side effects. So that has been a huge uproar in the advocacy community and in the public.
ROBERTSLet's hear from Jill in Catonsville, Md. Jill, welcome to "The Kojo Nnamdi Show."
JILLHi. Thank you for taking my call. I just had a comment of something that always frustrates me when I hear stuff about breast cancer, like on the TV or radio or, you know, read it. You just hardly hear anything about how breastfeeding your children, you know, can give you some protection against breast cancer. That's -- I just wanted to make that comment.
ROBERTSJill, thanks for you call. We've actually gotten a couple of calls and comments about the link between breastfeeding and lowered risk for breast cancer.
SULIKYeah. And somebody just e-mailed me about that question, too, and it's -- I think one of the issues with it, it's -- definitely there's a preventive effect to having children, particularly if you have children earlier in life, and there's a protective effects in terms of breast feeding. And I think that one of the reasons it probably doesn't make its way out in terms of a real strategy to prevent breast cancer is the fact that the majority, 70 percent of those who are diagnosed, don't have any of the known risk factors.
SULIKSo it's really unclear at this point how much of an impact it would have if women were to start having babies younger again and breastfeeding them the whole time. And then another mitigating factor, and Sandra Steingraber has written on this as well, is that particular toxins come through breast milk, so there's -- that can actually mitigate in some ways a protective effect if toxins are moving through as well. But it's an issue that should be discussed for sure.
ROBERTSRebecca from Alexandria, Va. joins us now. Rebecca, welcome to "The Kojo Nnamdi Show."
REBECCAYes, hi. Thank you for taking my call.
REBECCAI just -- the only comment I want -- I think it's great that you're adding to what the Blue Ribbon has maybe fallen short with doing, but I -- my only thought is that colon cancer and lung cancer, other cancers, they don't really threaten the sexiness in and femininity as does a mastectomy. And I don't have cancer. I've never had anything, and so I can imagine being 27, if that happened to me, I might really want something that kind of empowers me sexually or femininally, if that's word.
REBECCAAnd I thought it was weird when I first saw the Save the Ta-Tas campaign, but like I said, I've never been through it, and I can't really say. But anyways, I just thought that was kind of a point that I wanted to make, that the sexiness campaign might really be helping people. And I think it's good to add to what the Blue Ribbon isn't doing, but I think it'd be really sad to kind of take away what it has been doing well for some.
ROBERTSRebecca, thanks for your call. Yeah. So this gets to the idea that if a woman's sexual image or confidence is caught up in breasts, which it often is in this country, is this a way to, you know, take back the notion that if you've had a mastectomy, you're not sexy anymore?
SULIKYeah. It's a huge question, and I think it's kind of in the eye of the beholder, really. Because I interviewed almost 400 people over the course of my research, and I did hear some people say that they felt more empowered with reconstruction, for example. Other women said, you know, I don't want something else foreign in my body. I just came through a horrendous experience, and I don't want to do anything more to myself.
SULIKAnd so kind of opening up what is it that is empowering to women, and letting women decide for themselves, I think that's kind of the crucial piece of what could broaden the pink ribbon movement quite a bit.
ROBERTSI think we have time for one last call. This is Amanda. She's on I-95. Amanda, welcome to "The Kojo Nnamdi Show."
AMANDAHi. Yeah. I don't have breast cancer either, but my grandmother passed away from breast cancer when I was like two years old, and I'm 18 now. So I just wanted to say that .50 cents per dollar that goes toward the actual, like, you know, research and everything else, that that's not right. That they should do it at, like, say like a state park or a community park where, like, they could do it for free, so every penny could go to it, you know, like for the relay.
ROBERTSYou mean for the Race for the Cure, instead of putting on such an expensive production, they should make it more affordable so that more money can go to research? I think we've lost Amanda.
SULIKYeah. I guess we lost -- yeah. It's an excellent point. And one of the things that has happened with the, you know, these kinds of events have become very popular, and they're fun. You can go outside on a weekend, and do a walk and be with your family and there's a lot of good stuff going on there.
SULIKBut they're very expensive, and they're getting more expensive to do as they've become more and more popular. Now, different groups are having to vie for that space and that time and that attention. And so part of what has happened is the cost has gone up to make them more appealing to consumers because it's been created in a way to increase consumption.
SULIKSo I think that consumption piece of it is another part that has kind of undermined the early intention of coming together, support each other, raise money for a good cause.
ROBERTSIn that vein of come together, support each other, there is a huge online network of support groups and listservs and women meeting each other in cyberspace in order to talk about breast cancer, survivor blogs, you know. I mean, it just -- the list goes on and on. And what do you think the role there is, given that now people can talk about it and there is a sense of how common it is now. How do you see those online communities shaping the experience of breast cancer?
SULIKYeah. Social media has really taken off in that regard. And I think, in particular, it has opened up support channels for people that don't necessarily find that support in their own communities. And particularly if they have questioned this culture and questioned how they are being represented in the culture, and what's being done. And so they've been able to cross time and space in the virtual world and find people where they can actually speak out.
SULIKAnd I've seen that a lot. I've seen it in blogs. I've seen it through Twitter. And I think there's kind of a -- there's something coalescing in social media now around, you know, let's really get at the bottom of what's going on here so that we can achieve our ultimate goal, which is to support each other while we're dealing with cancer, support our families and at the same time, prevent it. Stop the disease before it starts.
ROBERTSGayle Sulik, we have to leave it there. The author of "Pink Ribbon Blues." I'm Rebecca Roberts sitting in for Kojo. Thanks for listening.
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