@bonniejaddario Responds to @consumerreports March Issue Cover Story #lungcancer #earlydetection #factsRead Now
Leading magazine downplays value of lung cancer screenings, to the detriment of advances in early detection research.
SAN CARLOS, Calif., March 20, 2013 /PRNewswire
The following statement was issued by Bonnie J. Addario regarding the March cover article in Consumer Reports: The cancer tests you need--and those you don't:
"I am appalled by the March 2013 Consumer Reports cover story (The cancer tests you need--and those you don't), because of the misleading and misguided message it sends to people who really need life-saving cancer screening tests, and how it discredits the value and importance of proper early detention cancer screening tests.
"The article's irresponsible reporting is best summed up in this statement on page 31: 'But most people shouldn't waste their time on screenings for bladder, lung, oral, ovarian, prostate, pancreatic, skin or testicular cancers.'
"Consumer Reports is one of the most trusted publications in America. Anyone, whether they know they are low or high risk, will read that statement and walk away believing early detection cancer screening tests are unnecessary. The six-page article mentions only twice that its ratings apply only to asymptomatic, low-risk population.
"Shame on Consumer Reports. We are talking about people's lives here.
"I myself am a lung cancer survivor. For more than a year I was misdiagnosed and not given an early detection screening test, even though I was in a high-risk category. When I was finally diagnosed I was stage 3B. Unlike so many others, I beat the odds. But my odds would have been better with an early detection cancer screening test. I founded the Bonnie J. Addario Lung Cancer Foundation seven years ago to advocate and raise money for better research, education, early detection and treatment. Because something must be done.
The stats are staggering.
"Cancer screening and treatment are certainly at a crossroads, as the article states. This is made clear as well by recent legislation to direct more tobacco settlement money to early lung cancer detection programs. But the article's irresponsible representation of the value of screening tests, I fear, might damage the progress my lung cancer foundation has made over the past seven years - just as we are making great strides.
"People cannot readily see symptoms of lung cancer. Symptoms are deep in the lungs, unlike breast cancer, where lumps can be felt and are visible. When you are diagnosed with lung cancer it is often at stage four, when it's too late.
"The Consumer Reports article makes only one responsible and thoughtful statement: 'Weighing the risks and benefits of cancer screening is best done in the context of a patient-doctor relationship.'
"Consumer Reports should stay out of the health care advice business, and stick to writing about toasters and washing machines. I wouldn't approach my doctor about whether I should buy a Honda or a Ford. And likewise, people should not consult Consumer Reports to help them decide whether or not to have a potentially life-saving cancer screening test."
About the Bonnie J. Addario Lung Cancer Foundation
The Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 6, 2006 as a 501c(3) non-profit organization and has raised more than $9 million for lung cancer research.
Kelcey Harrison, center, and Jill Costello, right, were lifelong friends, seen here with Gianna Toboni on a grade school field trip. [Photos courtesy of Kelcey Harrison]
A couple of Saturdays ago, while you were watching college football or out buying a Christmas tree, 24-year-old Kelcey Harrison was running the last 20 miles of a 3,500-mile "jog" from Times Square to her hometown of San Francisco.
Harrison, who graduated from Harvard, where she played soccer, is young, healthy and motivated. By the time she completed The Great Lung Run, she had logged 30 miles nearly every day for four months straight.
Harrison ran because she can. And because her lifelong friend Jill Costello -- who was also once young and healthy and motivated -- cannot.
On June 6, 2009, Costello, then a junior at Cal and a member of the crew team, was diagnosed with lung cancer. The disease was already at stage 4 and had spread; she was given about a year to live. Costello spent that year finishing school, earning Pac-10 Athlete of the Year honors, acting as vice president of the Panhellenic Council and doing tireless work for lung cancer charities -- all while undergoing chemotherapy.
In May 2010, doctors told Costello she could not be cured; all they could do was try to make her last few weeks more comfortable. In those last weeks she walked across the stage at graduation (with a 4.0 GPA) and helped Cal to a second-place finish at the NCAA crew championships.
"Jill was really strong," Harrison said. "She was really confident that she was gonna be the one to beat stage 4 lung cancer. She was very convincing in her argument; even at the very end we really believed she was going to be the miracle."
Costello died June 24, 2010.
Great Lung Run
No. 1 Cancer Killer
A young, vibrant nonsmoker, Costello was the last person anyone would expect to get lung cancer. But 20 percent of the more than 20,000 women diagnosed with the disease each year have never smoked. Lung cancer is the No. 1 cancer killer in the United States, taking more lives than colon, breast and prostate cancer combined.
Despite the staggering stats, there are no pink ribbons worn or mustaches grown in the name of lung cancer. There is, instead, a stigma that the disease is self-inflicted; an illness brought on by a life of smoking. Research and funding is limited and the five-year survival rate for lung cancer is 15.5 percent; it hasn't budged in 40 years. More than half of all people with lung cancer die within a year of being diagnosed.
Costello hung on for 18 extra days.
So Harrison runs to raise money and awareness about the disease that took her friend's life. The Great Lung Run has raised more than $150,000 for Jill's Legacy, an advisory board to the Bonnie J. Addario Lung Cancer Foundation, the charity Costello worked closely with in the months before her death.
Darby Anderson, the director of Jill's Legacy, said at first she didn't think Harrison would follow through with her plan to run across the country.
"I thought she was nuts," said Anderson, who was a sorority sister and close friend of Costello's. "I told her to call me back when she had an actual plan and then we would take her project from there. … [That] April I saw her in D.C. when I was there for our Jog for Jill Georgetown and she had a website, route, places to stay and was ready to actually make this happen. I was blown away."
Harrison was up early every morning to jog her 30 miles, taking a day off every 10 days or so to let her body rest. She took a break to walk every once in a while, but never stopped moving until the 30 miles were finished.
"It's just like getting up and going to work," Harrison said. "Sure there are days where it wasn't the first thing I wanted to be doing but that was my routine and my job at the time, so just gotta get up and do it."
Harrison's not sure how, but after 3,500 miles, she feels OK.
"I don't have an answer as to why I'm holding up so well," Harrison said. "It's a mystery to me just like everyone else. … People said they think I have the right motivation and someone special looking over me."
Harrison ran solo for the first six weeks of her trip, pushing her belongings in a jogging stroller and staying with hosts who would pick her up at the end of each run and drop her off the next morning where she left off. Eventually one of her friends from Jill's Legacy joined her on the road in a donated car, driving her to and from hotels along the way.
(The donated car, by the way, was a gold Chrysler 300 with 22-inch rims. When their first donated car lost its power steering the girls ended up at Oscar's Auto Salvage in New Mexico, hoping to sell it and rent one for the remainder of the trip. Instead, Henry, the shop's owner, offered his own tricked-out car for the final months of the trip.)
Just another day at the office
Running more than a marathon every day for four months sounds nearly impossible, but Harrison said from the start that if Costello could accomplish as much as she did in her last year of life, all while being ravaged by chemo, then a simple jog across the country was nothing.
"I spent a week with her on the road and she'd finish up her run and it was like she had just finished a day at work," Anderson said. "We would hang out, head to dinner, chit-chat and do completely normal things, except that she had just run 30 miles that day. … Kelcey has more courage and inspiration than anyone I have ever met and I am so grateful to have been able to just be a small part of this huge adventure."
The last part of The Great Lung Run was across the Golden Gate Bridge to Crissy Field. The Cal crew team, Harrison and Costello's high school crew team and other friends and family joined in for the final miles.
The official completion of Harrison's run took place last Thursday -- a celebratory cocktail party at St. Ignatius College Prep, the high school she and Costello attended. Harrison had been honoring Costello's memory with each step of her journey, but returning to a place where they grew up was difficult.
"It's not hard to think about Jill all the time because she sort of turns into this image, a legend" Harrison said. "What's hard is when you find those moments to step back and remember Jill your friend. Jill who did Halloween costumes with me for 16 years of our lives. That's where it's tough.
"It's become bigger than her, which sometimes is sad because you feel like you're forgetting a little bit of your friend, but in her last year of life that's really what she was aiming for. All of us at Jill's Legacy are really proud of what we're accomplishing but also really sad about [the reason] we're all involved in this."
Harrison will wake up this week with no miles to run, no path to follow. She's no longer interested in attending law school, but isn't quite sure what she wants to do instead.
"I'll take a little time to relax and then try to figure out what's next," she said. "I'm looking out for jobs, but I'll always be tied to our foundation and the cause of lung cancer. We'll always have jogs, bar events, restaurant things; anything to get more young people involved in lung cancer awareness. That will continue forever."
PLEASE take time 2 watch these 2 inspiring & informative segments from KCBS @greatlungrun @jillslegacy #lungcancerawarenessmonthRead Now
2012 Bonnie J. Addario Lung Cancer Foundation 7th Annual "Simply the Best" Gala Video. Please watch!Read Now
Congratulations to Bonnie Addario, her family, and everyone at The Bonnie J. Addario Lung Cancer Foundation and ALCMI for yet another outstanding fund raising event! The Joan Gaeta Lung Cancer Fund continues to be a very proud affiliate and are honored to know them and to work with them.
Please take a few minutes to watch the video below, which was part of their Seventh Annual "Simply the Best" Gala last week. It is truly inspirational and very informative.
The Chick Running From New York to San Francisco @greatlungrun @jillslegacy @bonniejaddario #lungcancerRead Now
October 23rd Update: Check out Kelcey on TV's "The Doctors" HERE.
***The following article was written by Kelcey Harrison and published on The Huffington Post on July 31st, 2012.***
Kelcey is a native San Franciscan and is a major marathoner and lung cancer advocate. On July 30th 2012, after leaving her job at New York County’s District Attorney’s office, the 24 year old Harvard grad set out on her Great Lung Run – a 3,500-mile run from New York’s Times Square to downtown San Francisco. Harrison expects to arrive in November 2012 and will be blogging and tweeting her adventures until then.
I don't know if I am in denial, am extremely naive, or if I truly am confident that this is exactly what I am supposed to be doing right now, but for some reason the fact that I've started running 30 miles a day and won't stop until I reach San Francisco doesn't seem to stress or scare me. Maybe it's just that crazy people don't realize they're that crazy?
I'm just your average 24-year-old who grew up in San Francisco, went to Harvard University, and moved to New York soon after college. For the last two years I worked at the New York County District Attorney's Office. Although I had the best time working there, I realized that law school was not really the route I wanted to take, and I was feeling a pull to make a change coupled with a very strong desire to contribute more to Jill's Legacy, I began thinking about some new options.
This is where I break from the normal... The idea that I came up with was to run from New York to San Francisco to raise money and awareness for lung cancer. Lots of people asked, why? Couldn't I have done something a little less risky? But for me, it made perfect sense. I am using a skill that I have been blessed with -- running long-distance -- to make a difference and to draw people's attention to a topic that deserves greater discussion, awareness, and funding. I am doing something really big and out there, which was what Jill was all about.
Jill and I first met when we attended kindergarten together. We went to school together from kindergarten through high school and remained good friends through college. While we were in school, there was a group of about five of us that was inseparable. She was a friend who was always there for me and had been in my life for so long that I always expected her to be around for life's big moments.
When she was diagnosed with lung cancer at just 21 years old, it was a huge shock. I certainly did not know how to handle it, but she did. She lived with more grace, determination, strength, and joy than most people will ever demonstrate in their lifetimes. After her diagnosis she did a lot of advocacy work with the Bonnie J. Addario Lung Cancer Foundation. In the last year of her life, Jill was named Pac-10 Women's Athlete of the Year, she graduated Cal Berkeley with a 4.0 and she led the Cal Women's crew team to a national championship. A few weeks after, Jill passed away. After her passing a group of young people with connections to Jill and/or the foundation formed Jill's Legacy, an advisory board to the foundation. Our goal is to mobilize young people to use their voices and power to raise awareness for lung cancer and to really start a movement to demand a change.
Our goal is to debunk the stigma that faces lung cancer patients. The common belief that lung cancer is a smoker's disease or one that only affects older people is wrong. The first question people always ask in response to a diagnosis is, "Oh, you were a smoker?" The underlying message that comes across with this question is the idea that lung cancer patients somehow brought the disease upon themselves and so it is the last disease to get funding for research. This has to change. Nobody deserves to get cancer for any reason and, of equal importance no one deserves to get a disease for which there simply is not enough support. The survival rate for lung cancer has not changed in 40 years and that fact simply boggles my mind. With the technology we have today, there should be better options for early detection and treatment so that fewer lives will be lost. Why aren't people talking about this! For those of us who knew Jill, it drives us nuts.
So, my journey has begun and I already have so much to share! Follow my Twitter account, as I will be Tweeting the wild adventures and characters I encounter along the way.
I can't articulate how thankful I am for all of the support I have already received. I am already overwhelmed by the responses. We have raised over $100,000 since announcing the Great Lung Run just one month ago. I would be so appreciative of any support that readers can offer, whether that be in the form of a wave, a tweet or a penny. To support, visit www.thegreatlungrun.com, follow me on Twitter, or email me at Kelceyharrison@thegreatlungrun.com.
Kelcey Harrison Great Lung Run Blog Post 10/12/12:
I realize that I probably have not been as forthcoming about the challenges of this journey and I'm sure many of you have wondered what the most difficult moments have been. Side note: I don’t really like to talk about my feelings...scary! So, that’s why this has been so late in coming.
Let me put it out there: there have been break-downs. There have been days that I wanted to call it a quits a few miles early or moments when I felt pangs of homesickness, but those have been pretty few and far between. I know that there is an end date and a finish line, and those two things alone make it easy to get through each and every day of this adventure. Add to it the fact that I have met incredible people along the way, have my buddy and savior Sydney with me, and have Jill as my inspiration every day, and it’s even easier to keep my eyes on the prize. That said, there are moments that literally stop me, hands on my knees and tears in my eyes when I remember why, exactly, I am running across the country. When that young, beautiful, strong girl with clammy hands, forever stunted fingernails, and razor sharp teeth left this world, we lost someone incredibly special. She was special to so many in very unique ways and the pain of that loss can sometimes overwhelm me at an unexpected moment.
Especially over the last month, since Sydney's and my routine has become so consistent, (our routine outlined here, in case you missed that post) it has been easy to think less about the reason that I am doing this run: to honor my friend Jill and to beat lung cancer. It is in the moments when I have allowed myself to truly remember Jill and that I am far from being the only one who lost her, that I have become weak in the knees and shed a tear or two ten. These moments are sad, sure, but I'm not trying to elicit sympathy or make you feel sorry for me. Mostly, because I am not the only one who loved and lost her and what often pains me is thinking about how the rest of her loved ones— parents, family, and friends, also go through each day without her. When we lose someone we sometimes catch ourselves remembering that we are sad at inopportune times. That we miss that person immensely, and that we cannot figure out how or why they are simply, physically gone. In many ways I am grateful for these moments because they mean that I can still picture Jill vividly and that my memory of her is still so close to the surface; that while she may be gone, our collective memories of her keep her around—that giggly, curious, active girl we all grew to love so, so much.
In all other aspects, and throughout almost the entire run thus far, I have been pretty positive. I believed that it would all work out and it largely has. I believed that people would be supportive and they have. I believed that it would garner some new attention for lung cancer and it has. But, I have to admit, somewhere in Indiana a terrifying thought occurred to me. It is the only other thing, aside from those overwhelming memories of Jill and our combined loss, that has caused me to cry on the side of the road. Somewhere just before Louisville, KY, my mind was wandering as usual when I suddenly thought, “what if nothing changes after this run? What if no one really pays attention and this run has no impact whatsoever on the future of lung cancer? What if I fail Jill by not making people care enough?” I stopped in my tracks. It was the first time I really allowed myself to think that the Great Lung Run might not "succeed". Luckily, I have incredible people around me who buoyed me back from the bottom and reminded me that we were already reaching new people and providing great education about lung cancer. I have my parents and my extremely wise older sister to thank for quickly reestablishing my positive outlook.
The point is, difficult things happen in life. We lose people we love, we endure life's challenges, we go through tough times, and sometimes, we just have to cry or scream or whatever. The important thing is that we acknowledge these moments, take a deep breath, and then remember the bigger picture: to get the word out about lung cancer BIG TIME, and to beat lung cancer for everyone.
VISIT THE BONNIE J. ADDARIO LUNG CANCER FOUNDATION WEBSITE
VISIT THE JILL'S LEGACY WEBSITE
VISIT THE GREAT LUNG RUN WEBSITE