By JENNIFER RAINEY MARQUEZ @jenrrain
In 1971, when President Richard Nixon declared a “war on cancer,” the idea of a cure didn’t seem that far-fetched. After all, we developed a polio vaccine and put a man on the moon. Doing the scientifically impossible now seemed possible. But cancer turned out to be a vastly more complicated and cagey opponent than anyone realized. More than 40 years later, we are still losing over half a million Americans to the disease each year.
“It’s a rare situation when someone hasn’t experienced [cancer] themselves or had it affect someone they love,” says Katie Couric, who knows this loss all too well. Her husband Jay was just 42 when he died of colon cancer, and her sister Emily lost her fight with pancreatic cancer at 54. Frustrated by what seemed like halting progress against the disease, and a surprising lack of cooperation among scientists, Couric—along with such entertainment industry heavyweights as former Paramount CEO Sherry Lansing and film producer Laura Ziskin, who later died of breast cancer—founded Stand Up to Cancer (SU2C) in 2008. Their new tactic? Fund collaborative research, with the aim of getting cutting-edge treatments to patients more quickly.
“We’re not going to uncover a Rosetta Stone that will ‘solve’ cancer, but we’re dramatically accelerating the number of new treatments that help us control this disease,” says Phillip A. Sharp, Ph.D., an MIT professor and SU2C’s scientific advisory chairman. On Friday, September 5, an SU2C telecast will air on 31 broadcast and cable networks to encourage the public to support cancer research—and remind us that though we haven’t cured the disease, we’re getting smarter at keeping it at bay.
Here, Couric, along with three ambassadors for SU2C—basketball legend Kareem Abdul-Jabbar, who was diagnosed with a form of leukemia in 2008; Scandal star Tony Goldwyn, whose mother died of lung cancer in 1993; and Delaware high-school senior and brain cancer survivor Pearce Quesenberry, 17—discuss how the disease has affected their lives and what patients and their families still need from all of us.
We thought we could move science forward faster if we could get people to work together.
PARADE: Katie, you cofounded this initiative, which is a program of the Entertainment Industry Foundation—what does it mean to “stand up” to cancer?
KATIE COURIC: As my husband and my sister each went through their own fights, I learned that the research is very siloed. These incredibly dedicated researchers weren’t sharing their experiences, their wisdom, even their tissue samples. We thought we could move science forward faster if we could get people to work together.
PARADE: Three of you are celebrities, and then we have Pearce, who created a blog and later a foundation to share her story. How has social media changed the patient experience?
PEARCE QUESENBERRY: It’s amazing; I’ve met so many kids who have care pages and blogs and Twitter accounts. People can be more connected.
TONY GOLDWYN: It’s about taking charge. Do you want to bury your head in the sand and feel very much alone? Or do you want to say, “Let’s talk about it.” And social media empowers [that].
Collectively, we’re much more open. Everywhere you go, you see a breast cancer run. But people still worry about how it’s going to affect their employment, how it’s going to affect others’ perceptions of them.
PARADE: Tony, you lost your mother 20 years ago; it’s been 16 years since Katie’s husband died. What’s improved since then? Have the stigmas faded?
KAREEM ABDUL-JABBAR: Well, I’ve had a recent experience with [cancer] and I’m surprised that there is still an impulse to stay silent.
COURIC: Collectively, we’re much more open. Everywhere you go, you see a breast cancer run. But people still worry about how it’s going to affect their employment, how it’s going to affect others’ perceptions of them.
QUESENBERRY: When I first got sick, [some of] my friends wondered, “Can I get it by touching her?” They kind of stayed away from me. I don’t know if it’s because I’m older now, but there does seem to be more enlightenment. It’s not like, “Oh, someone has cancer; I can’t go near them.”
PARADE: How does The Fault in Our Stars, which is about young people with cancer, help kids understand what it’s like to grow up with a serious illness?
QUESENBERRY: It makes it not so untouchable. And it shows how the whole family deals when a kid is sick.
GOLDWYN: The human impulse is to separate people who are different. And overcoming that impulse requires conscious effort. That’s what’s so great about these kinds of things in the media: they’re a constant reminder.
PARADE: When someone is diagnosed with cancer, often friends, neighbors, coworkers want to help but they don’t really know how. What did people do to support each of you?
COURIC: When Jay was sick, I remember a friend of mine wrote me a card every single week. Now, I was really, obviously, immersed in trying to figure out my husband’s care and taking care of my kids, but I was so grateful that she kept trying. [Don’t] say, “Please let me know if there’s something I can do.” Say, “Can I take the kids for the day to the playground? Can I mow your lawn? Hey, my friends and I are going to clean the house today.” The worst that could happen is the person could say no. And even the mere gesture means so much.
QUESENBERRY: I have an older brother who was 15 at the time that I was undergoing chemotherapy. My mom and dad were with me in the hospital almost 24/7, and my brother had no one. When family friends took him to the movies or shopping for school, I know he appreciated it, and it definitely relieved stress for my parents.
ABDUL-JABBAR: For me, having lived my whole life as a very famous athlete who was physically imposing, people were always afraid to approach me. And I’m very shy, which sometimes people take for being standoffish. But after I went public with my diagnosis, people would come up to me, because it humanized me.
COURIC: Did it make you less shy, too?
ABDUL-JABBAR: No. [Laughter.] But it enabled me to cross a boundary that had always been there before. It actually did me some good.
I should be dead now. So I feel like these are bonus years, and I want to make the best of them.
PARADE: Kareem, you and Pearce are both cancer survivors. How does that change your perspective?
ABDUL-JABBAR: I have Ph-positive chronic myeloid leukemia (CML). Fifteen years ago, it was a death sentence. Now, I take my medication and I tell everybody something else is going to have to kill me. [Laughter.] I make a joke out of it, but it’s a remarkable thing. I should be dead now. So I feel like these are bonus years, and I want to make the best of them.
QUESENBERRY: Yeah, I don’t take anything for granted. It’s hard to describe. Cancer changes you, no matter how old you are, to the point where you can’t return. It’s not necessarily a bad thing. But you can’t go back to being “normal.”
PARADE: Are you worried about recurrence?
QUESENBERRY: When I was sick, I didn’t even [allow myself to] think about it. I thought, “I have cancer, but I’m going to beat it and go on with my life.” After I finished treatment, some of those [anxious] thoughts came into my head. But then I think back to the other kids who were in treatment with me. . . . [I]f a little two-year-old is going through this and has a smile on his face, then why can’t I?
PARADE: Tony, your grandfather, movie pioneer Samuel Goldwyn, led the charge for celebrities to use their profiles to shed light on issues like this. But will your speaking out really change the way someone thinks, or lives their life?
GOLDWYN: We know people are interested in the lives of famous people. Kareem has been a sports idol for over 40 years now, and when he opens himself up, it’s very moving and powerful. When people can see that passion, it speaks loudly.
COURIC: I agree with Tony. When Jay got sick, I learned so much about colon cancer. I thought it would almost be criminal if I didn’t say, “Hey, this horrible thing happened to my 42-year-old husband. But guess what I learned during this ordeal? There’s this thing called a colonoscopy.” [Showing her colonoscopy on the Today show] is still is one of the things I’m proudest of.
ABDUL-JABBAR: When I was diagnosed, one of my friends [confided that] he hadn’t been to the doctor in 10 years! By me going public, this message—that your health is your health, and you have to maintain it—got out to people that I knew were ignoring it. And you’ve got to get that message through, especially in certain communities. I found that [many] African-Americans won’t go to a doctor unless they’re so ill that they can’t work.
PARADE: Beyond research advances—what else do cancer patients really need today that they’re not getting?
QUESENBERRY: For me, the psychiatry help wasn’t there. When I was in the hospital, there were probably 80 kids on our floor, and two psychiatrists. That’s a big thing for patients—especially children, because I know I deal with a lot of guilt, having seen so many other kids pass away.
COURIC: Cancer survivors are also vulnerable to other cancers and health issues down the road. And that’s an area of study we haven’t really explored that much.
Cancer is an illness that requires time and education, so if someone’s struggling just to put food on the table, it’s overwhelming.
PARADE: What about resources for caregivers? Katie and Tony, you’ve both been in that role.
GOLDWYN: [Cancer] is an illness that requires time and education, so if someone’s struggling just to put food on the table, it’s overwhelming. If you don’t have the financial resources, it’s really tough. Some people now use social media and internet platforms to raise funds online, helping loved ones with these challenges.
COURIC: Support services could be increased dramatically. Things like finding a babysitter and helping somebody get to chemotherapy, all those issues that are part and parcel of this disease.
PARADE: Do you think we will ever have a cure?
COURIC: We’ve already made great strides. Kareem is living proof of that; Pearce, thank goodness. But we’re going to be continuing to take baby steps. Is there going to be a panacea where someone says, “Oh, you’ve been diagnosed with X cancer? Take this”? I don’t think that will happen.
QUESENBERRY: What is going to help enormously, and already has, is making the treatments less harmful to the patient.
COURIC: Because I used to say, it’s a scorched-earth policy. You know, just kill all the cells and hope that the—
QUESENBERRY: —cancer goes along with it.
ABDUL-JABBAR: Everybody should be hopeful, because we’re finding our way—and getting more and better choices. The drug I’m taking to control my CML, they’re starting to use it as a model to fight other cancers.
COURIC: Which is great because sometimes it feels like, “No, look at us! We’re advocating for this cancer, ovarian cancer, breast cancer.” But that Kareem’s treatment is being researched for other cancers, it should make us feel like we’re all in this together.
Fighting cancer does take time. And it does take money. And it does take patience. But when your life or the life of someone you love depends on it, what could be more motivating than that?
PARADE: How can readers stand up to the disease?
GOLDWYN: That really gets to a big question of human nature: How do I want to live in the world? There are so many obstacles, you can easily become cynical and say, “I’ll just throw in the towel.” Or you can say, “I have an idea that seems completely impossible. But my imagination is telling me that we can do it.” That’s the human spirit.
COURIC: We’ve got so much at our disposal now. The human genome was just mapped a little over a decade ago. But [fighting cancer] does take time. And it does take money. And it does take patience. But when your life or the life of someone you love depends on it, what could be more motivating than that?