PLEASE take time 2 watch these 2 inspiring & informative segments from KCBS @greatlungrun @jillslegacy #lungcancerawarenessmonthRead Now
The following article was originally published in LSF Magazine: Fall 2012.
Copyright 2012 Life Sciences Foundation.
In Part I, we recounted how former oil executive Bonnie J. Addario survived lung cancer and embraced a new calling: patient activism. She started the Bonnie J. Addario Lung Cancer Foundation (BJALCF) with two goals: 1) to raise public awareness about the relative neglect of lung cancer in biomedical research, and 2) to help lung cancer patients navigate effectively through the healthcare system toward the best available care.
Addario soon realized the necessity of a third goal: to enlist the aid of physicians and biomedical scientists in the reorganization of cancer research. In November 2007, she convened the first annual BJALCF Lung Cancer Summit in San Francisco, and posed a simple question to an audience of prominent oncologists: “If money were no object, what would you do to increase lung cancer survival rates?”
Tissue is the issue
Dr. Harvey Pass, Director of the NYU Division of Thoracic Oncology, stood to respond: “We need a bio-repository operated by an honest broker, and collaborative agreements to ensure that institutions donate tissues.” The fight against cancer in the emerging era of genomics and personalized medicine depends crucially on the identification of tumor biomarkers – mutated genes or molecules associated with the development of specific types of malignancies. Biopsied tissues are basic raw materials that researchers need to develop improved diagnostic tests and targeted therapies. As Bonnie puts it, sample collection is “a search for gold.”
The value of biomarkers in the development of diagnostic tests and therapies has been amply demonstrated. In the case of lung cancer, for example, a genetic test is now available to detect a specific mutation in the gene that codes for a protein called epidermal growth factor receptor (EGFR). The mutation causes overexpression of the protein, which leads to aggressive forms of lung cancer (and colorectal, ovarian, and pancreatic cancers as well), tumors that readily metastasize and are resistant to standard chemotherapies. For lung cancer patients who carry the mutation, the best available drug is Genentech’s Tarceva®. Tarceva targets EGFR and inhibits its biological action.
“Think about it this way,” says Bonnie. “A carpenter would never leave the house without a full toolbox – a hammer, a screwdriver, a saw, and so on. Molecular analysis of tissues is the tool that oncologists need to select the right treatment for the unique patients sitting in front of them.”
Oncologists have long collected and analyzed tissue samples in order to characterize, predict, and monitor the progression of tumors. It was never common, however, to share samples broadly. With limited tools and techniques for the investigation of cancer genetics and scarce understanding of the heterogeneity of cancer as disease category, demand was limited. Specimens were regularly discarded after testing. Now, however, genomics technologies permit far greater differentiation in tumor typing. Demand for specimens is growing. Comprehensive identification of mutations and gene expression patterns implicated in oncogenesis will require genomic analysis of large sets of tissue samples.
Boom and bust
In the early 1990s, there were great expectations among genome scientists, entrepreneurs, investors, and drug companies that the identification of genetic markers would streamline drug discovery and development and form the basis of a new sector of the pharmaceutical industry. A large cohort of companies appeared, ready to implement genomics technologies in drug target screening, identification, and validation, but the data licensing business model adopted by most firms proved unsustainable.
Information alone doesn’t make a drug. Drug design involves making safe and effective interventions in strictly regulated and finely tuned biochemical signaling pathways nested in highly complex biological systems. A lot can go wrong. Even if a pharmaceutical company possesses a promising target, there is no guarantee that it will be able to develop an efficacious drug. Most attempts fail. If all goes well in the laboratory and clinical testing – a very rare course of events – then one might expect a drug in perhaps ten years at a cost of half a billion dollars.
Given the length, expense, and uncertainty of the drug development process, pharmaceutical companies questioned the value of biomarkers. What is a fair price? Eventually, the answer became clear: not enough in many cases to support the commercialization of biomarkers as a main line of business. After pharmaceutical houses had made a first pass and selected priority drug development targets, demand for biomarkers slackened. Firms licensing gene sequences struggled to remain profitable. Many genomics companies elected to divert resources to the downstream development of diagnostic products or drugs. Oncologists had anticipated an avalanche of cancer biomarker data, but only a trickle arrived.
Academic labs carried on the study of cancer genomics, but with fewer resources, and in a mostly uncoordinated manner. The advent of genomics has increased demand for tissue specimens by several orders of magnitude, yet competition in science has continued to put pressure on academic laboratories to generate data and publications independently rather than cooperatively. There have been few concerted efforts to pool genomics data in cancer research. There is no central repository.
When Bonnie Addario surveyed the institutional landscape, she saw a case market failure. She was enthusiastic about the promise of genomics for the development of individualized treatments and improved outcomes for lung cancer patients, but frustrated by the organizational and economic impediments to translation of biomedical advances from ‘bench to bedside.’ Attendees at the BJALCF Lung Cancer Summit agreed that patients would benefit from changes in the way cancer biomarker data are generated and disseminated.
Storming the silos
After the meeting, Bonnie assembled a team to organize the proposed clearinghouse. Joining her as president of the Addario Lung Cancer Medical Institute (ALCMI – pronounced ‘alchemy’) were Steven Young, former Executive Director of the Multiple Myeloma Research Consortium, and a core group of leading oncologists, thoracic surgeons, and laboratory scientists – Harvey Pass from NYU Langone Medical Center, David Carbone of the Vanderbilt University Medical Center, David Gandara, from University of California-Davis School of Medicine, David Jablons, from the University of California, San Francisco, Pasi Jänne from Harvard Medical School and the Dana Farber Cancer Institute, Ite Laird-Offringa of the University of Southern California, Rafael Rosell from the Catalan Institute of Oncology in Spain and Giorgio Scagliotti from the University of Torino.
“These were really the top guys in the business,” says Young, who was appointed President of the organization. As the only non-scientist on the board, Bonnie represented the patient perspective. “I insisted that she have veto power,” says Young, “to make sure that our mission wasn’t hijacked.” Addario was gearing up to wage “a battle against the status quo.” She had selected a board that she believed was willing to reform established institutional processes in biomedical research.
The group formulated goals, established ground rules, and developed a unique operational model. ALCMI was established to break down barriers. Bonnie intended the group to serve as a virtual mediator that would 1) establish connections and facilitate communication between ‘research silos’ (academic and industrial laboratories reluctant to collaborate and share information); 2) link and standardize existing biobanks in a cooperative network; and 3) provide an information technology infrastructure for the broad and efficient dispersion of data across the institutional topography of the global cancer research establishment.
The initial goal, agreed upon at the first meeting of the ALCMI board, was to affect the clinical management of lung cancer in a significant way within three years. The timetable was ambitious. It reflected Bonnie’s “no-nonsense” business approach to leading the consortium. The cancer survivor and former oil company executive had little patience with the established conventions of academic life. “A lot of people were doing good things in cancer research,” she says, “but didn’t fully understand the need to shake up the academic system. We’re running ALCMI as a business. We don’t sit around and create ideas and not implement them. We make sure they happen and we measure what we’re doing. We operate using business principles.”
Fourteen academic universities and community hospitals have joined formally as collaborators. In the United States, participating institutions include the Dana Farber Cancer Institute in Boston, the Hoag Memorial Hospital Presbyterian in Newport Beach, California, the Lahey Clinic in Burlington, Massachusetts, New York University, the University of California, Davis, the University of California, San Francisco, the University of Southern California in Los Angeles, Alta Bates Summit Medical Center in Oakland, Palo Alto Medical Foundation in Palo Alto, Vanderbilt University in Nashville, Tennessee, and Memorial Cancer Institute in Hollywood, Florida. Abroad, ALCMI enrolled programs at the Catalan Institute of Oncology in Barcelona, Spain, the Institut Gustave Roussy in Villejuif, France, and the University of Torino in Turin, Italy. Four additional medical centers in the U.S. have been invited to join ALCMI, bringing the total number of community hospitals to eight— ALCMI is unique in engaging community-based clinicians and community hospitals in translational research.
Despite the urgency of her mission, Bonnie understood that laboratory research moves forward according to its own timetable. Advancing basic science takes time, money, and luck. Breakthroughs can’t be predicted. They can’t be planned. Bonnie believed, however, that promising findings too often circulate for extended periods through restricted academic channels in which interests in publication and tenure take precedence over the translation of research to medical applications. Bonnie and company planned to operate differently. Steven Young says, “ALCMI is not a private playground for scientists in the consortium. We stated that clearly to our academic partners. We said, ‘We’re not trying to continue what you normally do. We’re creating this resource so that scientists around the world can access it.’”
As new member organizations joined and coordination challenges arose, ALCMI evolved into a contractual consortium. In order to gain access to the organization’s bio-repository resources, participating institutions must agree to adhere to non-negotiable policies on control of data and intellectual properties, tissue collection and usage, and revenue sharing. These contractual agreements obviate the need to negotiate separate deals with multiple technology transfer offices. They streamline the process of involving new institutional participants and contributors. The goal is effective collaboration with far less red tape. Through the contract system, ALCMI has been able to re-route flows of information in academic collaborations – investigators and research institutions have evidently recognized the sense and value in ALCMI’s innovative methods.
ALCMI is not the only non-profit organization working to share tissue samples and disseminate biomarker data, but similar groups are few in number. According to Steven Young, “there are only three or four of these around the world. It takes a lot of nerve and a lot of money.” ALCMI is currently the only group dedicated exclusively to the acceleration of lung cancer research.
Remove the bricks, remove the mortar, disseminate the research
Two years ago, ALCMI expanded its bold experiment to include the analysis of tissue and plasma samples. The organization initiated the CASTLE Network Study (Collaborative Advanced Stage Tissue Lung Cancer Network), a networked research project that performs laboratory testing on tumor specimens donated by lung cancer patients. The structure is simple. Late-stage cancer patients provide tissue and blood samples at one of seven participating institutions nationwide. Clinicians perform molecular tests to identify biomarkers that might provide clues about the future behavior of the cancer. The samples remain in the bio-repository as a resource for researchers worldwide; test results are sent to the patient’s doctor to help determine the best course of treatment.
The CASTLE study is the beginning of a move toward improved, personalized treatment plans for lung cancer patients. Participating physician and ALCMI board member David Carbone explains that information provided by the institute “enables physicians to make informed decisions on best available treatments – it often allows them to make earlier therapeutic interventions and to prescribe highly effective, targeted drugs rather than nonspecific and toxic chemotherapies.” CASTLE study findings also help researchers identify new biomarkers and learn more about the genetic preconditions, cascading biochemical pathways, and cellular dysfunctions that characterize cancers in lung tissues.
Research is moving ahead. In April 2011, Biodesix, a molecular diagnostics company located in Broomfield, Colorado, a Denver suburb, began testing tissue samples collected from late-stage cancer patients enrolled in the CASTLE study with a serum proteomics test called VeriStrat®. In January 2012, researchers at the University of California, San Francisco (UCSF), with support provided by the BJALCF, developed a similar molecular test in hopes of accurately predicting the future behavior of lung tumors.
Parallel drug testing projects are underway with support from the BJALCF. In 2010, Dr. David Gandara, a member of ALCMI’s Scientific Board, and a special advisor for experimental therapeutics at the University of California, Davis (UCD) Cancer Center, began collaborating with Jackson Laboratory-West and the National Cancer Institute Center for Advanced Preclinical Research to test the effects of varied drug regimens against specific tumors. Malignant cells from lung cancer patients receiving treatment at UCD have been engrafted onto multiple mouse models and tested serially for positive responses to newly-developed anti-cancer therapies. The goal, Gandara says, is to identify the specific lung cancer mutations that are most common, and most treatable: “There are at least 150 different types of lung cancer, so every patient a physician sees is going to be a little different. We need to find, say, the five or six characteristics that are shared by all the cancers – the most common mechanisms. That’s where we should focus treatment.”
The BJALCF began funding Gandara’s research in 2010. A recent progress report revealed that mice engrafted with variations of the EGFR mutant tumor model showed virtually complete reductions in tumor size when treated with afatinib, a drug being tested by Boehringer Ingelheim for patients with EGFR mutation positive non-small cell lung cancer (NSCLC), in combination with cetuximab (Erbitux®), a monoclonal antibody marketed by Bristol-Myers Squibb and Eli Lilly and Company that targets EGFR receptors. Clinical trials of the experimental combination therapy in human beings are underway, after the encouraging preliminary results in animal testing.
Developing alternative treatment options also requires enrolling more patients in clinical trials. Pharmaceutical companies often struggle with recruitment. Fewer than 5 percent of lung cancer patients participate in tests of experimental therapies. As a former patient, Bonnie understands their reluctance: “Most people think of clinical trials as a last resort. They think it signals the end of the road.” For many people with cancer, entering a clinical trial marks a passage in status, from patient receiving care to doomed guinea pig. She has firsthand experience with the phenomenon. When her cousin was diagnosed with pancreatic cancer, the doctor recommended a clinical trial. At her cousin’s next appointment, a trial representative walked into the physician’s office wearing a suit and carrying a briefcase full of enrollment paperwork detailing risks. The reaction from Bonnie’s cousin was immediate and powerful: “No way.”
Bonnie is mobilizing the BJALCF to develop more effective enrollment techniques: “I tell patients that at one point, Tarceva was in a trial, and that the people who took it lived longer. We can get patients into clinical trials, but we need to educate them. We have to explain what trials are all about, and tell how genomics is enabling the invention of better medicines.” Her message is that clinical trials give patients the best chance for survival. As Steven Young indicates, the BJALCF’s patient recruitment effort is an important piece of the virtual network: “BJALCF can get access to the patients, ALCMI has access to the scientists, and we have established an infrastructure to support the research. Our contracts, our data systems, our processes for doing correlative science studies are changing lung cancer research and care.”
Lung cancer education
In 2012, the BJALCF and ALCMI have launched further initiatives to inform and empower patients and enlist the aid of healthcare professionals. Working collaboratively with GE Healthcare Oncology Solutions, BJALCF is developing the Patient 360 program. A pilot version has been introduced at El Camino Hospital in Mountain View, California, under the direction of Dr. Shane Dormady. The BJALCF is also compiling a “360 Degree Patient Handbook” for patients, their families, and health care providers. The handbook is a goldmine of information covering all aspects of the lung cancer experience including diagnosis, cancer staging, targeted treatments, and clinical trials. Bonnie recalls her own firsthand introduction to the world of oncology: “Everyone kept saying that cancer is a journey, but no one could provide me with a roadmap. This handbook is the culmination of years of research, conversations with lung cancer experts and patients, and my personal experience.” A free iPhone app will alert patients of new discoveries and breakthroughs in lung cancer research.
Bonnie insists that the best patient advocates are educated patients themselves. The BJALCF is working hard to encourage and enable informed, proactive participation by patients and families in cancer care: “We want to teach the patient what to ask for from the very beginning of the long hard road on which they will travel. When the doctor says, ‘You have a metastasis to the brain, you need radiation,’ they will have the background knowledge to reply, ‘Well, are we considering whole brain radiation, gamma knife, or cyber knife procedures?’ They will be able to personalize their treatment and demand a seat at the table.”
Before patients demand a seat at the table, they are offered a space on a couch at the BJALCF Lung Cancer Living Room support group. The Living Room is an open forum for patients and their families to voice questions and concerns, share lessons learned, and hear from experts in the field of lung cancer research and medicine. Recently, Living Room conversations debuted on the worldwide web. “We are now live streaming into patient’s homes,” Bonnie reports. “It’s open to anyone who wants to dial in, and that includes the pharmaceutical industry. We are not restricting access. We are not keeping anyone out.”
These patient-focused programs are part of a larger campaign by the BJALCF and ALCMI to reshape the institutional foundations of cancer care. Efforts to create more knowledgeable, more responsive, and better equipped community hospitals are another important part of the process. Seventy to eighty percent of all cancer patients are treated at community hospitals, but molecular testing is far from a widespread or standard procedure, and many patients do not learn about the latest treatment options. “Patients are getting the same old, same old,” says Bonnie. “Whatever the oncologist was giving them before, that’s what they’re kept on.” BJALCF is spearheading a community hospital referral program. The program is designed to provide community hospitals with incentives to improve, to acquire the tools and forms of expertise required to diagnose and treat cancers based on the results of personalized molecular testing. And if superior resources or specialists are to be found elsewhere, the BJALCF will refer patients out to complete their treatment at different hospitals.
“The tissue under the microscope”
Bonnie J. Addario has extended patient activism to the formation of a virtual research network that links cancer patients, oncologists, biomedical researchers, and pharmaceutical companies in order to realize the potential of cancer genomics and personalized medicine. She is attempting to tear down institutional walls and push scientific and medical experts to work smarter and more cooperatively in order to save more lives. Her message to researchers, physicians, and industry leaders is that their work is profoundly important to cancer patients and their friends and families – never forget it! The tissue under the microscope, she reminds them, came from a human being who desires to live: “When you go back to your labs, remember that you’re not just looking at cancer cells. You’re looking at a patient. This person has given you their tissues, their cells, to help you advance lung cancer care.”
“We’re in the phase now,” says Bonnie, “where we have identified a genetic mutation or bio-marker for something like thirty or forty percent of lung cancers. Many of them we can treat.” The mission shared by the BJALCF and ALCMI is to identify the other sixty percent and make sure that patients know about it. Bonnie sums up the project: “We partner and collaborate with academic institutions, pharma corporations, and biotech firms. We take our most prized possessions and share them in order to speed the delivery of life-saving medical products to patients. We have to do it.”
Reflecting on her life and luck, Bonnie says, “When I became President of Olympian Oil, someone said to me, ‘You’re really lucky.’ I thought, ‘Me? Lucky?’ But then I realized I was lucky. I loved what I did every day. But I also realized that I hadn’t been called to do it. I didn’t know what I was meant to do, but I knew my job at Olympian wasn’t it. Now I know. This is it. What more can we do, what better footprint can we leave, than to say ‘I saved a life?’ Even if it’s just one, that’s pretty good.”
Each year, WebMD celebrates visionary Americans who met a health challenge and gave back to others in an inspiring way. This year, WebMD awarded $2,500 to each Health Hero to be used for their foundation or project.
Congratulations, Bonnie! We are very proud to know you and to work with you! Keep up the great work!
Chris Draft Visits Albany, Georgia to Help Shelia Knight and the Second Annual "Run for Your Lungs" Event at Lake BlackshearRead Now
The Joan Gaeta Lung Cancer Fund is a very proud affiliate of The Bonnie J. Addario Lung Cancer Foundation.
In the video below, Scott Santarella, President and CEO of The Bonnie J. Addario Lung Cancer Foundation discusses the work of the foundation as well as their subsidiary organization, Jill's Legacy.
Great job, Scott!
Kelcey Harrison Runs from New York to San Francisco to Raise Awareness and Funds for Lung Cancer ResearchRead Now
Harvard Student Supports Bonnie J. Addario Lung Cancer Foundation and Continues 3,500 Mile Journey in Memory of her Childhood Friend
SAN FRANCISCO, Oct. 24, 2012 /PRNewswire-USNewswire/ -- Bonnie J. Addario Lung Cancer Foundation (BJALCF) today announced Kelcey Harrison's progress on the Great Lung Run. She has reached Arizona, the eleventh state on her journey, running her 2500th mile and is now —960 miles from San Francisco, the ultimate destination. Harrison, the first 24-year-old Harvard grad to run across the country in less than 125 days, continues her journey to raise awareness and funds for all Lung Cancer patients. Harrison teamed up with BJALCF—the leading patient-founded, focused and driven non-profit dedicated to ending Lung Cancer and its young people's movement Jill's Legacy®, a subsidiary of BJALCF. Harrison hopes to draw attention to the most deadly form of cancer and raise money for research. Now in Arizona, Harrison has run an average of 30 – 40 miles a day since she departed New York in July.
"My mission is to honor Jill's memory and achieve her dream of beating Lung Cancer for all Lung Cancer patients – big time!" explained Harrison." My friend Jill was a 22-year-old never smoker when she was diagnosed with stage IV lung cancer. It's important to share the message that anyone, even young athletes like Jill, can get Lung Cancer. I hope that by running across the country and showing what my lungs can do, I inspire people to join the fight against Lung Cancer – the most deadly form of cancer in both men and women worldwide. My ultimate goal is to help all people with Lung Cancer. That was Jill's dream & we intend to finish it."
Harrison's trip, known as the Great Lung Run, has been documented throughout Twitter, Facebook, the BJALCF and Jill's Legacy websites. Harrison asks the daily question, #WhatCanYourLungsDo?, prompting her friends and followers to join the fight against Lung Cancer. So far, she has received a tremendous response, with children as young as 7 getting involved in the fight against Lung Cancer. Families across the country have hosted Harrison as she passed through their towns and many have run alongside her in support.
"Kelcey is my hero and my hope is that people will listen, take action and change the atrocious lack of funding for research for this disease. BJALCF and Jill's Legacy are taking a seat at the table of progress in Lung Cancer research and together their voices are resounding in the halls of health care so that all Lung Cancer patients will have a voice." said Bonnie J. Addario, founder of BJALCF and Lung Cancer survivor.
Harrison is scheduled to arrive in the San Francisco Bay Area in five weeks. A welcome home celebration of Harrison's journey, party and fundraiser will be hosted at Saint Ignatius High School in San Francisco on December 6th. Many sponsorship opportunities are available.
The Great Lung Run was featured on Monday, October 22 on the nationally syndicated daytime talk show, The Doctors. Click here to view.
How to Get Involved
For complete details on Kelcey's adventure, visit www.thegreatlungrun.com. To donate or sponsor The Great Lung Run, CLICK HERE or contact firstname.lastname@example.org or 949.293.2093. Sponsorships available from $10.00 - $35,000. All proceeds will go to Young Investigator Lung Cancer research or projects designed to significantly impact survival, catalyze and accelerate the discovery, development and delivery of more effective treatment options for lung cancer patients through the Bonnie J. Addario Lung Cancer Foundation, and its sister Foundation, the Addario Lung Cancer Medical Institute (ALCMI).
Interviews and Press Inquiries
For interviews and press inquiries, please contact email@example.com, +1-415-357-1278.
BJALCF and Jill's Legacy are hosting Your Next Step is the Cure® 5k walk/runs all over the country and Jog for Jill 5k's across college campuses. To participate in an event near you, click here. To host an event in your city, contact firstname.lastname@example.org.
About the Bonnie J. Addario Lung Cancer Foundation
BJALCF 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 over nine million dollars for Lung Cancer research. www.lungcancerfoundation.org
About Jillian Costello and Jill's Legacy
Jill's Legacy was established on March 11, 2011, as a subsidiary of the Bonnie J. Addario Lung Cancer Foundation, a 501(c) 3, founded on March 1, 2006. Jill Costello was diagnosed in June 2009 with Stage IV Lung Cancer and began fundraising efforts with Bonnie one month after being diagnosed. She came to work for the foundation in April 2010. Her DREAM was to end Lung Cancer for all patients and those yet to be diagnosed. Jill lost her battle with Lung Cancer at 22-years-young on June 24, 2010. www.jillslegacy.org
About the Addario Lung Cancer Medical Institute (ALCMI)
ALCMI is a 501(c)(3) nonprofit, established in February, 2008, and a sister organization of BJALCF. With offices in California and Connecticut, and dozens of member institutions in the United States and Europe, ALCMI is dedicated to catalyzing and accelerating the discovery, development and delivery of new and more effective treatment options for Lung Cancer patients. In response to widely-acknowledged and systematic barriers to progress against Lung Cancer, ALCMI developed and launched an inaugural research program -- a targeted, multi-institutional biorepository. The purpose is to facilitate the application of known biomarkers to patients presenting today, and to establish a collection of biospecimens essential for the discovery and validation of new biomarkers for improved diagnostics, treatments and patient outcomes. www.alcmi.net
SOURCE: Bonnie J. Addario Lung Cancer Foundation
RELATED LINKS: http://www.lungcancerfoundation.org
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
by Ben Leach
Originally published Online at OncLive.com on Friday, October 5, 2012.
Nine years ago, Bonnie J. Addario was a successful fifty-something California businesswoman whose active lifestyle was being disrupted by persistent chest pain. Her doctors thought the pain stemmed from a bulging neck disc and, after months of fruitless exercising and frustration, she decided to pay for her own full-body computed tomography (CT) scan.
As it turned out, she had stage IIIB lung cancer.
Addario emerged from the trauma of her cancer journey with a desire to improve the experience for others. “It shouldn’t be that hard to get a good diagnosis and get good care,” Addario said during an interview at the 13th International Lung Cancer Congress. “There needs to be a change. And I am determined and committed to being a critical part of making that happen.”
Today, Addario’s name is synonymous with ground-breaking research and meaningful support for patients. In 2006, she established the Bonnie J. Addario Lung Cancer Foundation, which has raised more than $9 million. In 2008, the Addario Lung Cancer Medical Institute was established as a nonprofit research consortium among top institutions spanning North America and Europe.
Addario’s foundation also sponsors a lectureship award, which “recognizes luminaries in the quest to eradicate lung cancer” and supports a keynote presentation at the International Lung Cancer Congress. In July, D. Ross Camidge, MD, PhD, director of the Thoracic Oncology Clinical Program at the University of Colorado Denver, received the fifth annual award.
As Addario has gone from patient to survivor, she has learned much about what patients are looking for in terms of information and care. Through her organizations, she is determined to play a part in helping patients with lung cancer achieve better outcomes.
“There really is no consensus on standard of care for lung cancer like there is for breast cancer, for instance,” Addario said. “And because there’s such a good standard of care for breast cancer and early detection, the five-year survival rate for early-stage disease is about 90%. That’s where we need to be for lung cancer.”
Conducting Her Own Search for Care
Addario found that even after she was correctly diagnosed, she had to search for answers on how best to be treated. At first, she was told the tumor was in such a difficult position that a biopsy could not be performed. “It was too close to my heart for them to get in close enough to get any tissue,” she recalled. “So then they told me that the only option really was surgery to see what was in there, and that just didn’t sound good to me. You’re going to cut into my chest and explore?”
By chance, Addario read a newspaper story about a partnership between Melissa S. Lim, MD, medical director and founder of Redwood Pulmonary Medical Association and a doctor at Sequoia Hospital, and David M. Jablons, MD, a professor in the Department of Surgery at the Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco. The partnership allowed the pair to see difficultto- treat patients.
“They recommended a chemotherapy/radiation combination to reduce the tumor as much as they could. And then if that was successful, they would consider surgery,” Addario said. “We got to that point. I had all of the therapy, and David said that it’s still very difficult and it’s a challenge, but if you’re up to it, I am. He said, ‘Because if you don’t have it, you for sure won’t live.’ So we did it. We had the surgery, and I’m a grateful patient.”
After she was diagnosed with lung cancer, Addario found out that her own family has a history of lung cancer; her mother, in fact, was diagnosed with the disease after she was. As a result, her foundations aim to advance both emerging research and patient support.
Connecting Patients With Information
The Addario Lung Cancer Medical Institute focuses on collecting and analyzing tissue, blood, and plasma samples from patients treated through community hospitals. “Patients are not getting molecular testing at the rate they should be,” Addario said. “Many deserve a targeted drug, and they’re not being given a targeted drug because they’re not being given the testing. So our goal there is standard of care.”
The Bonnie J. Addario Lung Cancer Foundation concentrates on fundraising and public awareness campaigns. The first campaign was designed to raise awareness about getting CT scans to diagnose lung cancer. It has since grown into a resource network for patients and their families, with a particular emphasis on using the Internet to connect to resources.
In June, the foundation launched its Lung Cancer Living Room, which consists of live stream broadcasts of an interview with an expert every third Tuesday of the month; patients and their families can type their questions and get answers from the doctor immediately.
Addario estimates that about 1700 people tuned in to one broadcast.
“There’s a breast cancer support group on every corner. Finding a lung cancer support group is not as easy. More often than not, when a patient is in treatment, it’s very difficult for them to travel any distance of any kind, and come at night because most people are still working, too,” Addario said. “Now we’re able to bring it home to them in their living room, where they can relax and have a cup of tea.”
Addario believes that one of the biggest hurdles to better lung cancer care is the stigma surrounding the disease because of its association with smoking. She said that the negative perceptions contribute to a lack of resources being channeled into studying causation and prevention.
“I never ask anybody if they smoked or not,” she said. “The worst possible thing that can happen to you is that in one moment you hear you have cancer—I don’t care what kind it is—and, oh, by the way, you should be ashamed, too, because you brought it on yourself.
“We need to work on smoking because I personally think it’s not a good thing for anyone to smoke, but we shouldn’t take it out on people who have cancer,” Addario said. “We need to take just as good care of these people as we do any other patient with any other disease.”