Mesothelioma Asbestos

Closer to a Cure? A Cancer Research Update

Announcer: Welcome to this HealthTalk webcast. Before we begin, we remind you that the opinions expressed on this webcast are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you. Now here’s your host.Elizabeth: In 1971, President Nixon declared war on cancer by signing the National Cancer Act into law and expanding cancer research. Since then, billions of dollars have been spent, and millions of people have run races and donated money to find the cure, but how close are we to the goal? Hello and welcome to HealthTalk. I’m Elizabeth Austen. Our show is Closer to a Cure? A Cancer Research Update. During the next hour, we will take a hard look at cancer research and where the money goes. Joining us on the line from New York City is Matthew Zachary, founder and CEO of the I’m Too Young for This! Cancer Foundation, a non-profit foundation working on behalf of cancer survivors and care providers under the age of 40. A cancer survivor himself, Matthew writes the provocatively titled Stupid Cancer blog on healthtalk.com. Welcome, Matthew.Mr. Zachary:Thank you, Elizabeth. It’s a pleasure to be here.Elizabeth:Also joining us by phone is Dr. Leonard Sender, medical director of the Cancer Institute at Children’s Hospital of Orange County and medical director of clinical oncology services at the UC Irvine Medical Center’s Child Family Comprehensive Cancer Center. Welcome, Dr. Sender.Dr. Sender:Well, thank you very much, Elizabeth. We’re excited, both Matthew and I, to be part of your show today.Elizabeth:Well, Dr. Sender, let’s start with you. Are we close to a cure for cancer? Dr. Sender:The answer really is yes and no. While most people think of cancer as one disease, it is, in fact, about a hundred different diseases lumped under the name cancer. So in our group that Matthew and I care about passionately, which is the adolescent/young adult, we’ve had some great advances in some diseases like testicular cancer and Hodgkin’s disease, but many, and in fact most of the ones that we deal with haven’t had any changes in terms of their five-year survival, and that’s over the last 20 years.Elizabeth:That’s sobering. Where are we making gains in cancer research? Dr. Sender:So one of the very exciting parts about cancer research these days is that we have moved from what we see just under the microscope to what we really see at the basic DNA level or what we call molecular level deep inside the cell. And we are learning that we may actually redefine what a cancer cell is by the pathway that makes the cell grow. And the cancer cell grows sort of uncontrollably. So there have been really wonderful new advances in understanding what have now become and called targeted therapies and targeted approaches. So it would be a little bit like as you shine the light in the room and you think you have got the answer to one question, you now end up with probably 20 more.Elizabeth:So I understand you to be saying that we are making some progress on the molecular level in terms of understanding how cancers work. Is that translating into more effective therapies at this point? Dr. Sender:In some diseases, it is turning into more effective therapies. So chronic myelogenous leukemia, which was a disease that only could be cured in the past with bone marrow transplantation, since we found the molecular target, and that molecular target was actually found in 1961, it took another about 40 years before an actual therapy could be instituted, and that was then called Gleevec (imatinib mesylate). And Gleevec is a drug that goes specifically to that one targeted area that occurs in a cancer cell, and that’s fundamentally changing how we do it. But we’re starting to see that same approach being used in breast cancer. We are starting to see it being used in certain brain tumors. So we are starting to sort of expand outwards to other cancers. So we are seeing progress, but we’ve still got a long way to go.Elizabeth:Matthew, Dr. Sender just mentioned a moment ago that the young adult population is not seeing many gains in those five-year survival rates. What’s behind that situation? Mr. Zachary:Well, it’s a very intriguing question with a very provocative answer, and it’s very complicated, but I think the lowest hanging fruit comes down to three specific factors - the first of which being that most young adults who have cancer are diagnosed at a very late stage. They often go misdiagnosed a very long time. And on average, and I am sure Dr. Sender will corroborate this, the majority of young adults who contract cancers are diagnosed very late, IIA, IIB, III and IV. Very rarely are they caught early, and if they are, it’s largely due to a fluke. And the other reason is the cancers that young adults get are very different from the cancers that older adults and pediatrics get. So this notion of prevention and early detection and cure and all the advances we have made have largely served the needs of the 94 percent of people who get cancer over 50. The top three cancers in older adults and seniors are breast cancer, colorectal cancer and lung cancer. Now, we have clearly defined what those are, and everyone has a general understanding that that’s where we are at primarily, but the top cancers in younger adults are melanoma, thyroid cancer, and blood and tissue [bone, muscle, etc.] cancers. So there is really no way to directly apply all the progress we have made with the boomer and senior cancers to the young adult cancers.Elizabeth:So I’m curious though, so you said that one of the major issues with young adults is late stage diagnosis. Is that because they are not receiving regular preventative care? What’s behind that difference with young adults, why the later diagnosis? Mr. Zachary:Well, there are two sides to that coin, and I am an example of that. I was diagnosed with brain cancer in college when I was 21. I was misdiagnosed by several doctors and several specialists for eight months. I think it comes down to the fact that A, when you are young you are invincible and tend to chalk things up and ignore things and just put them out of your mind because you have got more important things to do like live your life and grow up. I also think that there is an accountability on the part of the medical community where they don’t generally take young adults seriously when they come in with a problem that might seem innocuous but might be indicative of something larger. And Lenny can testify to numerous melanoma cases, which could easily be one of the most treatable cancers if detected early, but patients will come in, doctors will say, “Oh, you’re too young for this. Don’t worry about it. Come back in six months.” They come back in six months, and it’s stage IV. So there is an inherent flaw in the way our society understands our personal needs from the health perspective and the way that the medical community appreciates the potential gravity of a situation when and if that young adult, college student, 20-something, 30-something actually goes to the doctor with a problem.Elizabeth:Okay. Matthew, you mentioned that you are yourself a survivor of a brain cancer, and I know that you have been called the Howard Stern of cancer. What’s your story, and how did you become an activist? Mr. Zachary:Well, I really wasn’t this way until very recently. I was an aspiring concert pianist en route to film school to become a film composer. I had been classically trained for 10 years. And when I was 21 during the summer of ‘95, I started to experience a neuropathy in my left hand which again went misdiagnosed and mistreated. And then I started to have more serious complications during my penultimate semester as a senior in college, ultimately leading to my brain cancer diagnosis once major symptoms happened, and according to what they said if I had gone like another week or two, I would have been dead because it was starting to impinge on my brain stem. So it took significantly terrible, obvious, acute symptoms to get me diagnosed correctly. I was unable to go to grad school. I lost the use of my left hand completely and was unable to play piano for years to a level of competency and had to basically rebuild my life from scratch. So I was really disenfranchised, and I was angry because no one took me seriously until it was really devastating. No one seemed to care that I was a concert pianist, and I just wanted to play piano again. No one seemed to care that I was 21, and I had issues that were unique to being 21 like dating or intimacy or I was impotent from treatments for like eight months. And no one cared about that and fertility questions and what I would do about insurance and my employment. These are sort of unique issues to that age group. But what really turned the tide for me - I guess in between then and now what turned the tide for me was I built a career for myself - a new normal as they say in advertising and marketing, and I sort of quit that after 9/11. There were a lot of people who became very introspective, and I just decided that there was probably something more important for me to do with my life than metaphorically or rhetorically sell Doritos to teenagers, which is primarily what I was doing working in advertising. But it really wasn’t until a public health report came out, which has served as the guiding bible behind the adolescent and young adult movement, which said pretty much what Dr. Sender alluded to earlier, that the five-year survival rate in young adults has not improved in 30 years for reasons that are as of yet still quite unknown but different than what we have understood so far. And in my mind, that told me that if I get - this is not necessarily true - but if someone like me gets the same cancer that I had 12 years ago, the prognosis might as well be identical, which again it’s an extrapolation, but that’s what that spoke to me. And it’s not right. It’s not okay that 12 years have gone by and all this progress, all this pink and yellow and white and blue and green and race thing has happened, and it doesn’t help you if you are in the age that I was and still am in with cancer.Elizabeth:So you started the I’m Too Young for This! Cancer Foundation. What are you hoping to achieve with that foundation? Mr. Zachary:We are still trying to figure that out. It’s become a bit of a juggernaut, and we’re looking back retrospectively as to what has happened to it as a result of consumer demand and re-analyzing its potential and capabilities. It was initially started as nothing more than just a craigslist, like I was really disturbed by the fact that so many young adults get cancer and no one tells them about this wealth of resources out there for the 18- to 40-year-olds. There are amazing organizations out there. They are mom and pop. They are very siloed, but they serve a great need, and there was nothing out there that served as this sort of aggregate.Elizabeth:So do you have a Web site with sort of a clearinghouse of resources aimed at young adults? Mr. Zachary:Yes. That was primarily what it started as. It was like here’s this list, here’s Matt’s list.org, in a sense, imtooyoungforthis.org. And it was just again my favorite organizations that you would never know about unless you went to our site. It has since grown substantially and significantly into much more of a social network with offline activities, and we are doing conferences and there’s a radio show and the blog, and it’s become a much more comprehensive, experiential support system for this niche population.Elizabeth:And, Dr. Sender, I understand that you are also involved with the I’m Too Young for This! Cancer Foundation. What motivates you to be involved with it? Dr. Sender:Well, number one is I think all of us acknowledge that the future of our society lies within the youth. And when you think that cancer in the adolescent/young adult is the number one disease killer, and we have made so little progress, as Matthew has just restated, partly how could you not be motivated? I live my life dealing with the adolescent and the young adult cancer patients myself, and I see it every single day, the frustration of our healthcare system and the lack of support that they really have and the lack of investment into improving the lives of these young adults who get cancer. So Matt and I hooked up and clearly realized that together we could build what we hoped would be the amazing grassroots organization that we hope to become the preeminent site that people will go to that we can be the advocacy site. We can be the social networking site on how to understand the complex psychosocial aspects that an AYA [adolescent and young adult] patient faces in the time of generation text, in the time of generation Google, where life is fundamentally changed and information is passed on at a rapid speed. How do we help them? And it’s been a fun and sort of a momentous ride on this roller coaster of saying how do we actually change what’s currently happening to become the world that maybe we want it to be where young people are taken seriously about their disease, the right research is being done, and we can move forward and hopefully really understand the complex issues and not try and dumb it down but really try and understand the complex issues of the young adults.Elizabeth:Okay. Well, let’s look at the big picture again. Matthew, how much do we spend on cancer research, and where is the bulk of that spending on cancer going? Mr. Zachary:That’s probably a better question for Dr. Sender. It’s easily in the billions. Where it’s going is always a subjective question. Lenny? Dr. Sender:Yes. So I have been thinking about this a lot. America spends about 5 billion dollars on cancer research a year, and about 3 billion comes from the National Cancer Institute, which is designated as part of the National Institutes of Health, so therefore they get their money from Congress. And about another 1.6 billion comes from industry, pharmaceutical industry directly. And then there is probably another 300 million dollars that come from non-profits like the Howard Hughes Foundation, the American Cancer Society and Susan G. Komen. And then it’s estimated that non-profit philanthropy groups, smaller ones collectively make up about another 200 million dollars. Now, when we look and see how that money is spent - and we compare this to Europe, although I don’t believe we spend enough money in this country on research for cancer - we are still spending seven times more than the European Union spends on cancer research, but we spend it a little bit differently. They spend a little bit more on the biology. Why does someone get the cancer? What’s unique about the tumor itself? What can we learn about it so we can intervene later on? They spend more on that. They spend a little more on the etiology, what causes the cancer. We spend more money actually on prevention than they do, and early detection. We spend more money on treatment, and we spend some money on cancer control, which includes survivorship, but very little. So yeah, we spend a lot of money. But when we think we are going to spend a trillion dollars in Iraq, when you say 5 billion dollars, and we say, you still don’t say in 1971 that President Nixon declared a war on cancer. When you look at how much money of that 5 billion is maybe spent on pediatric and adolescent and young adult cancers, we don’t even make the price of the wheel on a new bomber that’s going to Iraq. So we spend a lot, but we spend an insignificant amount, but we do spend more than other countries spend.Elizabeth:That’s a very compelling comparison. Matthew, I wonder if you would weigh in on this idea about prevention and early detection given your own experience. Where do you think that those issues, prevention and early detection, should fit into that overall funding picture? Mr. Zachary:I think that they are useless terms from this day forward, and in the sense that it is impossible at least from my perspective to prevent cancer. And I say that with gusto specifically because if you look at it from a biological perspective, cancer is a naturally occurring process. It’s been around for millions of years. All cancer is is a cell that goes wrong and multiplies by itself. So it’s not really about preventing it. It’s about controlling it, and it’s about making sure that it doesn’t kill you. So I was privy to a strategic meeting a couple of years ago where they were discussing how we can eliminate the words “prevention” and “early detection” from our language and replace it with reducing your risk of getting cancer. They did it with diabetes, they did it with HIV, and now they are even trying to do it with allergies. Reduce your risk of allergies. Reduce your risk of getting HIV. Reduce your risk of getting pregnant. This is the new language that I see fitting into what’s more appropriate. This also brings up the issue of what is the cure for cancer. And if the cure for cancer is reducing your risk, getting it early and not dying and hoping it doesn’t come back, I am fine with that. So the notion of prevention doesn’t really fly with me. They can even say don’t smoke, but you can still get lung cancer. They can say don’t live under power lines, but you could still get brain cancer. They can say eat healthy, but you could still get cancer.Elizabeth:I follow what you are saying, and I will concede that, that we can change prevention to reduce your risk. But what about the funding question, what proportion of our funding should go toward reducing the risk? Dr. Sender:Can I jump in for one second? Elizabeth:Sure. Please.Dr. Sender:Because I think where Matthew is coming from is in the AYA or pediatric, adolescent, young adult patient population, there is no prevention to stop the cancers. You don’t get prostate cancer when you are very young. You don’t really get colon cancer, and you don’t get lung cancer. So in reality most of what we talk about in prevention and early detection is really the discussion of older adult and geriatric cancers and really is not applicable to pediatric, adolescent, young adult cancers. That’s why I think he is so passionate about saying that because we have nothing to do. We can’t early detect leukemia, which is common. We can’t early detect - remember, age 40 is when the National Cancer Institute, the American Cancer Society and Susan G. Komen says we should start looking for breast cancer in women by doing mammograms. Well, what about the woman, the 10 percent of the entire population that get breast cancer who are under the age of 40? They never would have had a screening, therefore they couldn’t have been early detected. There is a new move to say don’t do breast self-examination because it doesn’t help, because you should be having either an MRI or a mammogram. Well, again, that patient population is told not to do it because they are too young. That’s probably why “I am too young for this” is such an applicable term. So early detection and prevention in the patient population that we are most interested in has no relevance. The issue going forward, I think Matt and I and scientists could argue about the right terminology, about what we mean by prevention and early detection, remember the NCI has come up with a plan for the year 2010, which is to end pain and suffering secondary to cancer. It’s not to cure cancer. It’s to end pain and suffering. It’s to find a way to do it, and it may be through better detection of early disease because earlier disease is easier to control. As Matthew says it’s like melanoma. If you find a spot on your skin very early on and it’s small and hasn’t gone too deep, we may be able to control your melanoma. If it goes too deep and you delay your diagnosis, you are going to die. But we don’t have standard protocols. Pap smears has been an early detection methodology, but we can maybe prevent it with a vaccine. But even then we are learning that the vaccine may come with problems, and it’s maybe not economically a viable option.Elizabeth:The reason why I pressed the question is what I am trying to get at is that I think there are decisions to be made with funding about whether we focus on looking for cures for cancer that are already in progress and also looking for ways that we can identify that cancer at an earlier stage, and ways that we can identify risk factors. So I appreciate all the nuances that you both are bringing up, and I think what’s really important about the two of you as guests is that you are reminding us that our tendency is to focus on the adult population, and that you are reminding us that there is a whole slew of separate issues when you are talking about adolescents and young adults with cancers. Just to remind you both though that for this conversation, we want to make sure that we talk about both because this question about how close are we to a cure, where is the research money going, I want to make sure that we are also addressing the adults that are listening. Dr. Sender:And again I would stress that adults who at age 40 should be having mammograms, and a woman should be having Pap smears, and male and females should be having colonoscopies performed. So there are things we can do to prevent some of the cancers that exist and maybe some of the big four: Colorectal, lung, breast, prostate cancer can be better controlled and better detected, and therefore early detection means early staging, which does lead to better outcomes. We absolutely want to state that they are known ideas. But I think your point, the one thing that you just said that sort of resonated is this new scientific belief that we are trying to identify risks. Who is at greater risk of developing cancer? So if you pick up, say, thyroid cancer and you find that there is a mutation in the gene called the RET gene, we know that we should look at families, and we need to maybe prophylactically remove someone’s thyroid. If we find a young woman or any woman who has breast cancer that has the gene for BRCA called BRCA1 or 2, yes, you need to think about how you can prevent coming back in the second breast or going to the ovary or what it means. So I think we are learning to identify risks, as Matthew said, as well. If we identify risks, and there is a lot of work going on in both adult, pediatric and other cancers because can you find a family history? Can you understand that? Can you look to see who should you screen for? And if you know a genetic variant is in the family, who should we screen for? But we are really at the infancy of that risk evaluation. We have got it on a few genes, but not many, and only a small percentage of all breast cancer is the BRCA-1 and 2, so we need to do more. We should put more research into that. And a lot of people believe obviously it’s easier to prevent cancer or early detect cancer than to treat late cancer. Obviously as a cancer oncologist myself, I would always want to treat earlier stage disease. There is nothing worse than stage IV disease or markedly progressed disease. But I think early detection also should be do they have access to healthcare? Do they have access to oncologists or to diagnostic procedures that will pick up their cancer when they present with symptoms? And I think that’s part of the problem. So people need to be considering cancer as more people are not dying from infectious diseases and not dying from heart disease, cancer is going to continue to rise, and the public is going to think that cancer is increasing in amount, but it may not be. We just are stopping people dying of everything else, and therefore cancer is going to be at the top. One out of two men will get cancer, and one out of three women will get cancer. We need to spend more money trying to understand that, again, can you control it better if you picked it up early? And we need to understand all the things that you can do to try and prevent it. Now, let me give you one quick example because I think it’s so illustrative. Breast cancer, millions of dollars have been spent on breast cancer research, but recently there was a 100,000 woman study that came out about three or four years ago that showed that the promise of estrogen replacement in women who became menopausal and therefore would improve their health if they took hormone replacement like Premarin (conjugated estrogrens), that if they took this hormone, they would be able to prevent their heart disease, keep their bones healthy. Well, what’s happening is we didn’t help the heart. In fact, they increased the stroke rate, they increased the thrombosis rate or DVTs. But more importantly, we demonstrated that they got more breast cancer. When the recommendation was put out there to stop women getting hormone replacement therapy, if you look at the American Cancer Society statistics from about five years ago, you will see the incidence of new cases of breast cancer in this country is about 220,000. In 2008, we are predicting 184,000 cases. That has been the most important maybe drop in cancer, and our treatment didn’t come into it. Our detection didn’t come into it. Less woman got breast cancer and that may be because we stopped hormone replacement therapy. Obviously, we are all watching with eager eyes over the next one or two years to see if the number continues to decrease. Was this a fluke in the last few years? But that’s been the biggest decrease in breast cancer in the last few years by just telling women when you reach menopause you may not need to be on hormone replacement therapy. And I think that there are a lot of things we do in the guise of saying we are trying to help, but we may actually hurt. Elizabeth:It’s clearly very complicated. One of the things we haven’t talked about yet is research into the possible environmental causes of cancer. Matthew, what do you think about devoting more research into that area, and do you think there will ever be the political will to do that? Mr. Zachary:Environmental oncology is like the hot topic these days. There is a brand-new, well, they are not that brand-new, but they are finally getting some attention that they deserve out of the University of Pittsburgh. A woman named Dr. Devra Davis, she is totally pioneering this notion that enough with the treating of the symptoms, let’s focus on understanding the cause. There is an inherent flaw in that because if it comes to pass that we find out that, like Clorox or Carpet Fresh or whatever it is, is that all these carcinogens build up and whatever, we can’t get rid of the civilization that we have created over the last hundred years. We can’t go back to the 1640s before electricity and find out cell phones are the new cigarettes. That’s impossible. So the rub is that if they do discover what they are looking for, and I think that environmental oncology is going to be sort of the new stem cell thing, it’s going to be a huge market that’s going to creep up, and it’s going to really upset the system. We have to figure out how we can either live with cancer, balance it or try to change the industry in some way. I just read an article a couple of weeks ago, and we have blogged about it on the Stupid Cancer blog net, Frito-Lay has finally agreed to remove some carcinogens from their chips. Why wouldn’t you? I don’t understand why that should be news. But it’s shocking that this is where we are at today in the dialogue with corporate America, that we have to somehow convince them to remove these carcinogens when, in fact, we may invariably find out epidemiologically that they do invoke or provoke the spread of cancer.Elizabeth:It occurs to me that over the last several minutes we have been talking quite a lot about where should we put our attention, what should our priority be. Dr. Sender, just how do priorities for cancer research get set on the national level? Who decides what gets funded? Dr. Sender:Good question. The National Institutes of Health is charged by Congress to come up with a roadmap for healthcare for the country. And the major branch that deals with cancer is called the National Cancer Institute. So the National Cancer Institute has an advisory board that helps the director come up and set the agenda. The latest agenda is the 2010 roadmap to end pain and suffering, which has been going on. The top scientists in the country are brought together, the top clinicians, epidemiologists, researchers. And through that process, they set the agenda on how we move forward with cancer and put the money into it because - as I mentioned earlier in the program - most of the money is coming from the National Cancer Institute, they therefore set the priority, and they then direct it down to the clinical centers and the universities. So they chose a group of centers. There are 40 centers in the country, my university is one of them that is part what is called the National Cancer Institute Comprehensive Cancer Program, and that really tries to break down silos within universities of trying to get people working from environmental epidemiology, all the way to maybe nanotechnology scientists, all the way to biologists, developmental biologists and carcinogeneticist people so that they all are getting together and applying the thought process on how we can treat and how we can actually understand cancer. So it’s a complex issue. The problem is there hasn’t been enough money. And the last few years of major budget crises, we haven’t been able to actually do the full agenda because there hasn’t been enough money and hasn’t been enough money in the system. But the NCI does a good job. The problem is they go off after - and it could depend on which side - if you have prostate cancer, you wish that they were doing all their research in prostate cancer. And if you have a rare, rare cancer, you are out of luck. Now, what they are starting to do and what they did with us in the AYA world is that they did put together a group called the progress review group, and for the first time they looked at young adults with cancer. And they said okay, this is an issue and a disparity and an access issue and a knowledge-based disparity. How can we put more money into it? And hopefully we will get more money. But that’s what they do. They bring the experts together. We talk about it, whether it be prostate cancer or lung cancer or CLL or myeloma or whatever, and that group then comes together and sort of says okay, what are the commonalities and what are the strategic divisions that need to be done? Elizabeth:Well, that sounds like it’s all happening at a very high level, which is probably appropriate, but how can someone get involved in influencing research priorities? Matthew, do you have any thoughts about that? Mr. Zachary:It’s not really my specialty, although we did have a guy on the radio show. I host a show called the Stupid Cancer Show. It’s the only nationally syndicated talk radio show giving young adults a voice in this mess. And he was a senior ex-research scientist out of the NCI, and he pretty much said it this way. He said if you really want to help influence and fund research, find the doctor in this country who is doing what you want to get done, and write him a check.Elizabeth:Dr. Sender, would you concur with that? Dr. Sender:I think that’s probably true, but I think that there are many routes to do it. I think that we need to go to our universities, which are doing amazing research. We have to inspire researchers to continue to go into biology. We have to keep our young investigators in the field. I think the biggest crime that is going on right now is that science was not given a lot of substance within the Bush administration, and therefore a lot of young scientists have left the field. And if we can take someone to the moon, we can clearly maybe cure cancer or at least understand it enough to control it. We need to be able to fund research, and we have to fund research in all aspects of cancer work. What Matthew is talking about is how you deal with rare cancers, and I agree wholeheartedly because everyone knows that when someone gives money - a couple of weeks ago the Melanoma Alliance gave out $8 million in grants - that’s because a very wealthy man donated money to the Millikin Foundation who then put $8 million out and basically has jump-started maybe some melanoma research. Sometimes that’s what it takes. It takes either a celebrity to get cancer or takes someone who is wealthy enough to have had a family member affected by cancer to suddenly realize there is very little being done on that person’s cancer. How do you jump sort of five lanes ahead? You take out your checkbook. But there is a more coordinated approach that needs to be done, and it needs to be thought of as a national agenda, which is how are we going to deal with cancer? We are aging our population. More and more old people are coming about. They, thank god, are living healthier lives, but they are getting cancer, and the question is they are not just ready to die. So we don’t want to be age-biased and age sexists. We want to make sure that we treat the geriatric cancer patients. At the same time, we want to make sure that the person isn’t left at the starting gate, which is the young adult or the pediatric patient who in the number of years of life lived after having cancer is so much greater. So I think we need a better agenda. We need to put enough real money in. We need to go back and step back and say, Devra Davis, and her book called “The Secret War on Cancer,” which I would recommend everyone to read, it’s a very interesting and exciting book. Now, we need to take a fresh look at what causes cancer in our environment, what may make cancer move more quickly into the environment. We need to look and see what can we do, are we spending the right amount of money? Maybe there is enough money in our health system. We may be just spending it badly, which is what the rest of the world thinks. We overspend. There are three PET scanners in the city of London, and there are about 18 PET scanners in Orange County, which has 4 million people. Is that appropriate use of our resources? Should we be spending money differently? So I think everyone who wants to get involved should. There are many routes to do it. But since we are still in the discussion, cancer is so many diseases that really it’s depending where your sweet spot is.Elizabeth:Well, that raises the question for me about I think many people give to non-profits that are working with cancers that have affected someone they care about. But it can be so hard to judge the effectiveness of a non-profit, to know that you are giving to someplace that will use your money effectively. How can you tell, Dr. Sender, if someone, if a non-profit is a worthy place to donate? Dr. Sender:That’s an excellent question, and we have all asked that every single day. I mean we have all seen things like the Charity Navigator where you can look and see what percentage of administration costs does the charity take up. But I think it really comes down to what motivates someone to give in the first place. Is it a cancer that they believe in? Is it a group of people that they believe in? Is it in honor of someone who passed on? Why are they giving the money? And they should do some homework to say how does that cancer organization spend its money? So Matthew and I are not great fans of the American Cancer Society. We think that billions of dollars have been raised. It has become a very bureaucratic system that spends so much money. Its CEO is making close to a million dollars. It puts on a 40 million dollar campaign to talk about should we get universal healthcare. Well, is that really what the American Cancer Society should be doing? Should they be funding more fundamental research? Should they be finding ways to improve the health of the patients going through cancer? I think it’s morphed into this big juggernaut. The Susan G. Komen Foundation, which has raised an amazing awareness of breast cancer, it’s not clear how they have really helped cancer. Do they really help it or not? I think to some people absolutely Komen has been fantastic, but Susan Komen herself was a young woman. We look and say did a lot of money come to young women with breast cancer? Maybe a little bit, but the question is is that the best use of money? So I think people need to just think about how they are giving it. And then I define it as local, regional and national. You may have a local hospital you want to give money to or a local charity that you know the money is going to be used on the ground, grassroots, it really helps provide a service. It’s value added to patients undergoing cancer therapy or cancer treatment. And then you have a sort of a regional group that may really help. And then you have those big national ones that need to be looked at. So I think people need to find something, does it find or fill a space that no other charity is doing? Do they have transparency in how they spend their money? Do they have reviews on whether they are doing a good job? So thank god, they are, the wonderfully generous American population gives, as I said, over $200 million and more, and I think the ACS raised about a billion dollars, but the question is is that money being used effectively? It’s an unanswered question. Elizabeth:Matthew, are there some cancer non-profits that are doing work that you admire that you would want to mention? Mr. Zachary:Yeah. I mean I also think it comes down to recognizing that the majority of non-profits that are started are primarily filters. And what I mean by that is they raise money to immediately disburse it somewhere, and they are very important. However, they are extremely duplicative. And yes, it’s important for them to be in existence, but it’s also important for other organizations to be in existence too. When you look at the standard like the 80/20 model, we talk about overhead and reasonable administrative cost - and I am getting to your question - it’s reasonable that a non-profit which is a filter could have less than 20 percent overhead because all it does is just disburse the money it raises. It immediately goes to programming. So and that programming could be toys for kids at a hospital or transportation for certain patients at a cancer center or whatever. When you are looking at non-profits that may not abide by that, you really have to assess the value of what they are spending their money on. And a good example is the Leukemia & Lymphoma Society. This is an organization I have tremendous respect for primarily because they are not nearly as bureaucratic on a local level. Their franchises are autonomously operated, so they get to pick and choose what it is that they want to do and partner with that benefits their community without necessarily being beholden to the national agenda. So they are also in gross recognition of the fact that blood cancers are the number three cancer in young adults, they are generally the go-to organization, but they are negligent in serving young adults. So they have built partnerships with young adult organizations, such as ours and the Young Adults Alliance with the Lance Armstrong Foundation, in a hope to start to better understand how to serve the needs of young adults with blood cancers. I also think that the Lance Armstrong Foundation is doing a great job in making people aware that it’s not necessarily about the cure. That’s this magic fairy dust word that we talk about when most people think cancer is like getting a cold, it’s one thing. I think that they have raised the bar on understanding that when the doctor says you are cured, go home, that’s not the end of the story, and that there is a continuum of care that’s an entitlement for all cancer patients to benefit from. And, of course, there are other organizations out there that do great work but are very niche and very specific. There is one group, and I will just conclude with this, in particular in Chicago. They are a very small organization called Imerman Angels, and they are run by a guy named Johnny Imerman who is a young adult cancer survivor, and they are the largest one-to-one peer support registry of young adult survivors. They have about 1,800 registered young adult survivors in their database who they connect one to one with fellow young adult survivors who went through the same cancer experience. There is nothing out there like it, and we drive so much traffic to them, and they are an extremely valuable resource. But they are very small, but they are an example of an organization that is serving a really niche, specific purpose that’s non-duplicative, and I admire them tremendously.Elizabeth:Well, I just want to follow up on a point you brought up earlier. You mentioned an organization where 80 percent of the money they raise goes directly into programming. Is that 80/20 programming versus administrative costs, is that a useful mark? Is that a good proportion? Mr. Zachary:Yeah. That’s generally the barometer, the old school barometer by which most organizations are measured that aren’t necessarily entrepreneurial. I mean if you look at us, if you look at Planet Cancer, if you look at the Ulman Fund, a lot of the young adult organizations out there don’t meet the 80/20. If anything, they are maybe 40/60. They have much more administrative overhead because they are not funneling money away. All of that money goes to programming, programming that’s more social in purpose and function, but it takes an office. It takes administrative effort to make that happen. And I think that if you are transparent about that, you talk about transparency, coming to the non-profit world from the for-profit world, we look at Sarbanes-Oxley and how that’s sort of looking to really hyper-regulate, so we don’t have WorldCom and Enron again, that is starting to funnel its way into the non-profit sector. So as long as you are transparent with people, yeah, we may have a little higher overhead, but this is what we do, this is the value we bring, and this is the benefit we have, people will be aware of that, and people will support that.Elizabeth:So by transparent you mean that people should be able to inquire of a foundation what’s the percentage of money that you raise that goes to overhead? Mr. Zachary:Right, exactly. And then quantify what that overhead does because, you know what? Without that overhead, there wouldn’t be any program.Elizabeth:Right. So I want to shift a little bit. It occurs to me that we get a lot of marketing messages about cancer and cancer products both from the government but also from private industry and even these charitable organizations. And, Matthew, you mentioned earlier that you worked in advertising and marketing. How do you feel about the way cancer is being marketed to us? Mr. Zachary:I think everyone thinks we are idiots, quite honestly. I think that they market stuff to us the same way they convince us that we need new shingles on our roof and new cars, and we are not pretty enough, and we are too fat. But yet we need to by this cereal because it’s whole grain, which doesn’t mean anything. And we use words like “hydrate ourselves” and whatever. It’s all marketing. It’s all marketing, and why do people advertise? Because advertising works. Why do people market? Because marketing works.Elizabeth:So what’s being marketed to us with cancer? Mr. Zachary:I think they are selling us a pill. I think they are selling us a fairy dust cure, and maybe that’s what needs to happen to get Americans who aren’t cancer survivors to relay and race and raise $200 million, but I don’t think it’s an honest message. I think that you only have to look back at HIV in this country 15, 20 years ago. We were promised a cure for HIV, and here we are living 20 years later where it’s now considered, largely considered, a chronic disease. At least it is in this country where you have to live a compromised lifestyle as a vigilant self-advocate taking renewable prescriptions. Where is the cure? We were sold a cure. I want my cure for HIV. I don’t think it’s reasonable. So at the same time, we are looking at cancer now as a chronic disease with survivorship being the most important thing? What is the cure? And if we are racing for a cure, and you are shoving cure down my throat with pink Cheerios every October, I want to know what that means and what can make consumers sort of more captious about that. And I just think they are marketing it to us in a way that is going to very soon if not already become very counterproductive.Elizabeth:Dr. Sender, Matthew just mentioned pink Cheerios, and you yourself earlier mentioned the Komen Foundation and all the work that it’s done to raise awareness. What do you think about Breast Cancer Awareness Month? What is that doing for us? Dr. Sender:I think obviously breast cancer is sort of the one pervasive cancer that affects everyone. Everyone has a mother or had a mother or a wife, a lover, a sister who may be at risk. When you are talking about that there is between 180,000 and 200,000 women who may get breast cancer a year, and clearly we know that if you can detect it early on you can really make a difference in the outcome for that person, I think breast cancer awareness is important. But I think that there is so much money and emphasis being put on breast cancer that sometimes it seems to hog the spotlight, if you will. But the parts of breast cancer that we haven’t made advances in don’t seem to get the same spotlight. So I am ambivalent because obviously breast cancer is a really important cancer. It takes a lot of our GDP, a lot of our research dollars, and it creates tremendous morbidity. And unfortunately there are still about 40,000 women in 2008 who will die from breast cancer. So it is still marked, still having a major impact on death. But, thank god, with earlier detection, using newer technologies, women do better these days with breast cancer. But the majority of the women who get it, about 85 percent of the women are greater than the age of 55, so since I am passionate about adolescents and young adults I will look and say, what does that awareness do for the patient population that I care about? Have they had improvements in outcomes? So stage IV under the age of 40, women with breast cancer under that age group do worse in every stage of the breast cancer. Even when you think you picked it up early on, they do worse. I have a 21-year-old right now that I am working with, and a 29-year-old. Did that breast awareness month help them? Has it put a focus on why they would get it, what’s the etiology? It hasn’t. But as a whole, it’s a wonderful thing. I think, however, it does get a little sickening after a while thinking of everything as pink. It sort of dumbs it down. And when you see a big, 76 pink truck, gas truck, you think how does that have to do with cancer? It got turned into just a marketing message. And if I could just change one thing about saying what’s the media done. I think one of the things that we are really suffering from right now is direct-to-consumer marketing that is happening by the pharmaceutical industries. Every cancer patient saw the advertisements that said Aranesp (darbepoetin alpha) or Procrit (epoetin alpha), which are erythropoietin products which improve your red cell count, which they told you would get rid of all your fatigue, as if that was the only cause of fatigue from your therapy. Now we have black box warning on the drug saying it’s dangerous, it increases your risk of stroke, and more importantly in certain cancers it may actually make your cancer grow and come back sooner. So we have to be really cautious. We should not be allowing direct-to-consumer marketing. When the drug companies talk about how much money they spend on research, most of the money is spent on marketing. They create diseases in us. Up until recently, I had never seen a patient with restless leg syndrome. I am sure it does exist, but it doesn’t exist, and we joke about it in our cancer center. It’s not the number one concern that patients come to us with. I am more worried about the 19-year-old that I have who has a 16-centimeter mass in her thigh that took over four months to make a diagnosis because they told her it was probably just an injury from running, and now it’s metastatic. So I think there has been an overtreatment. We have made people into having diseases. People used to shake their legs, and I am sure there are real sufferers from restless leg syndrome, but it is not the amount of people they have. Do we really have a society of men who are so impotent that everyone needs Viagra (sildenafil citrate)? But when we think about it in cancer, which is not an elective decision whether you take Viagra or not, but whether you get a life-sustaining treatment, it adds more costs because they are spending more money, which makes these drugs outrageously expensive, which is where we are in this health economic crisis which is, will we have enough money to treat an aging population as we move forward if we continue to expect the same level of healthcare in terms of cancer care? Cancer is one of the most expensive aspects of our American health economy. And I don’t know if we can do that while we are being bombarded, physicians are being bombarded all the time to go to fancy dinners, to go to fancy places, and clearly we think we are objective, and I have been as guilty as anyone else, but I must be biased by the process. We need to change it to the media, to the physician group and to the patients of promising them things that don’t really exist. The other thing, sort of the last point, is I think they have done a terrible job of covering the real issues related to cancer. We dumb down for the American patient population, and clearly these are intelligent people in the time of Google and instantaneous access to information. We need to not exaggerate and hyper-exaggerate. Every time a report comes out every day, it’s exaggerated as to its impact to patient populations. That doesn’t help, and it’s not realistic. Research takes a long time, thorough, good research that needs to be vetted, and it needs to be thought about that it takes a while. We don’t make these paradigm shifts every single day in education, but we have created this expectation of patients that they think that we should have the cure, when they walk in we are going to have the cure, and that’s why a lot of our patients are disillusioned by American medicine. That’s why they go into alternative medicines. When I talk to Chinese doctors who come and visit our center, they say they wish they had these drugs. So we have done a bad job, and the media has not been always honest about presenting a good coverage of a situation.Elizabeth:Okay. I want to make sure we have time for some of our listeners’ questions, so let’s get right to those e-mail questions. This first question comes from Clarksdale, Missouri, and this is something we haven’t talked about at all yet, “How much is being spent on helping people who have lifelong disabilities because of their treatments?” We have talked a little bit about survivorship, but what’s being spent now at this point on helping people deal with the lifelong effects of treatment? Dr. Sender:Matt, do you want to take that? I mean I can do it or…Mr. Zachary:I think it’s not enough, no matter what the number is. I’ll put it to you this way. The word “survivorship” was invented in 1986. It took 20 years for the Lance Armstrong Foundation to come around. But for the word to be made into something like a name brand, something that people can now understand where I was a victim of this myself with many other young adults where even my parents to a certain extent were saying, You are done, get over with it, get on with your life and stop complaining.” And the truth is cancer can be the gift that keeps on giving. I will just anecdotally reference the fact that while we serve over a million young adult Americans in this country who have had cancer or are living with it now, a third of them are long-term childhood cancer survivors, and most of them live with what Lenny likes to call the consequence of being cured at such a young age. You can’t stick a 6-year-old in Chernobyl and hope they are going to turn out fine when they are 30. So this notion of dealing with chronic diseases and chronic conditions and late effects and specific deficits as a consequence, and I deal with many of them myself personally, is a brand-new idea. So I am willing to go on a limb and say there is probably extremely little out there to address sort of the clinical and psychosocial late effects of cancer as a consequence. Dr. Sender:And I would echo that. I think one of the things that in all aspects of cancer care we understood for a long time that pediatric cancer patients needed to have long-term follow-up for the consequences of their cure. And survivorship clinics sprung up, and every children’s hospital has one, but then we learned many years ago that we actually should have been doing this on adults as well. And what are the consequences of what we have done? What are the psychosocial as well as physical consequences? So the whole field of survivorship and cancer control is very early. The Armstrong Foundation has really aided that, but again they have given a small amount of money to a few hospitals where we have got millions, more than 10 million survivors in this country, and we have generalists who don’t know how to take care of them, who don’t know how to treat them. So there is a lot of research going on of that. I am involved with research with family practice and internal medicine trying to improve the outcome for these patients, but they need to be followed. When you have had chemo and you have had surgeries, there are true consequences, and we need to spend more time and effort and money to understand that because patients are living longer. And if they are going to live longer, how do we make sure that they have what I call meaningful survivorship? And how do we improve meaningful survivorship?Elizabeth:Okay. Another question has come in, “Has cancer research become such a lucrative business that a cure will never be found?” Mr. Zachary:I will tackle that from the perspective of actually defending the pharmaceutical industry, which is something that most people might be shocked that I would do. But the truth is I have many friends who actually work for the pharmaceutical industry, and they have had cancer. I know that one of the senior executives at I believe it was Genzyme, his daughter had leukemia. The notion that there is a conspiracy out there to hide, “the little magic, Cinderella, Tinkerbell fairy dust cure” in a vial in some safe in some CEO’s office somewhere is ludicrous. The people who work in the pharmaceutical industry can get cancer just as much as anyone else can. I think, though, that I had a long conversation with Dr. Sender about this as well. All of the research out there, all of the cancer research out there that ultimately gets published for something that gets discovered gets scooped up by the drug companies because ultimately medicines have to be made by the pharmaceutical industry. It’s not going to be some guy Bob in his garage who says, “I have made this and take my pills.” Everything has to be vetted, and there are years of development and discovery and clinical trials and everything.Elizabeth:Matthew, we are just about out of time, and I need to make sure I give you both a chance to sort of leave our audience with something. So just briefly if there is one brief message you can leave our listeners with, Matthew, what would that be? Mr. Zachary:I would say that we all have the opportunity to really change this country’s perspective of cancer, and it’s all about making an objective decision and getting the facts.Elizabeth:Great. Thank you. Dr. Sender, briefly what would you like to leave our listeners with? Dr. Sender:I would like to leave them with optimism. I would like to believe that there is no conspiracy theory and that cancer will eventually be better controlled, and hopefully the NCI objective of ending suffering and death will really occur. But empower yourself is my message. Empower yourself, and don’t take no for an answer as you seek the right treatment and support.

Reviewed by Ed Zimney, M.D. on 8/18/2008 © 2008 HealthTalk. All rights reserved