Lung cancer programs receive a fraction of the grants devoted to types that take fewer lives, data show. The stigma of smoking looms large.
by Bridget Huber
This article was originally published in The Orange Country Register on November 15th, 2012.
Lung cancer takes more lives than any other cancer. This year it will kill an estimated 160,340 Americans – more than breast, colon and prostate cancers combined.
While lung cancer remains largely a death sentence – just 15.9 percent of those diagnosed are alive five years later – the federal government funds far less research on the disease than on other common cancers. The discrepancy is starkest when death rates are taken into account. In 2011, the two federal agencies providing most of the research money funded breast cancer research at a rate of $21,641 per death while spending $1,489 per lung cancer death.
It has been 41 years since President Richard Nixon signed the National Cancer Act, effectively declaring war on cancer. But there will be no victory without winning the battle against lung cancer, which causes more than one in four U.S. cancer deaths. Advocates say efforts to improve lung cancer patients' chances have been stalled by unexamined biases among health officials and the public as well as by scant research funds. They also cite the paradoxical invisibility of a disease that claims so many lives but has few champions of the sort who have brought breast cancer to national prominence.
The stigma of smoking is largely to blame. Anti-tobacco campaigns have done their job too well, leading many to see lung cancer as self-inflicted. That stigma keeps some families and patients from speaking out, while corporate donors stay away from the disease, and some scientists and policymakers question whether scarce research dollars should be devoted to a smokers' illness.
But an estimated 15 percent of lung cancers are diagnosed in people who never smoked. If lung cancer in these people was considered a separate disease, it would still be the sixth-leading cancer killer in the U.S., ahead of liver, ovarian and esophageal cancers. Researchers estimate that an additional roughly 50 percent of lung cancer cases involve former smokers who quit the habit years ago.
"This is a public health problem that needs to be addressed regardless of how it came about," said Dr. David Carbone, a leading lung cancer researcher at Ohio State University. "We need to take care of those who are sick and need to do everything we can from a public policy perspective to reduce the number of people at risk in the future."
Recent breakthroughs in cancer genetics and lung cancer screening have added urgency to advocates' calls for more money for lung cancer research, which will get $231.2 million this year from the two main federal agencies funding such work. "We are at a precipice where we could really break through," said Kim Norris, president of the Lung Cancer Foundation of America.
But these advances have come at a time when funding for all research is scarce. And many influential scientists balk at letting pressure from advocates influence research priorities. In their view, it could set the entire cancer research field back by creating a quota system for research on specific cancers that could divert funds from the most cutting-edge science.
Carbone, however, says unless a portion of federal funds is specifically directed to lung cancer, advances in the field will remain baby steps. "We didn't send people to the moon because we happened to have a rocket ship sitting around. We sent people to the moon by saying, 'That's what we want to do.' And then we figured out how to do it."
Making that moonshot will mean convincing the public and policymakers that lung cancer victims are worthy of support. Part of the challenge is that the disease is so deadly that there is no critical mass of survivors to raise its profile. Most people are diagnosed at an advanced stage and die within six months, said Jeffrey Borgia, a cancer researcher at Rush University Medical Center in Chicago. "There's not much time to fit a walkathon in," he said.
In contrast, breast cancer advocates have raised millions through everything from road races to galas. The White House is lit pink each October for Breast Cancer Awareness Month. Pink ribbons have been attached to items including pistols and fried chicken buckets, becoming so ubiquitous that some question whether the cause has become too commercialized. Lung cancer groups, however, have struggled to attract attention. The original color for lung cancer ribbons was clear – as in, invisible.
Perhaps the best example of how strong advocates can spur scientific research is the Defense Department's medical research program. In 1992, the National Breast Cancer Coalition, led by a breast cancer survivor and lawyer Fran Visco, persuaded the Defense Department to create a breast cancer research program funded by Congress. The resulting Congressionally Directed Medical Research Program has been allocated $2.8 billion for breast cancer research in the past two decades.
But even though the armed forces skew heavily male and military members smoke at high rates (cigarettes once were included in soldiers' rations and have been sold at cut-rate prices on military bases), it was 17 years before the program began researching lung cancer in 2009.
"It's really challenging now. There just isn't a champion," said Regina Vidaver, executive director of the National Lung Cancer Partnership.
The stigma problem
Before it can find its champion, lung cancer will have to shed its stigma. Last summer, advocates released an ad campaign aimed at shocking the public into examining its biases against people with lung cancer.
Posters featuring a young man with geeky glasses and a plaid scarf began popping up across the country. "Hipsters deserve to die," they read. "Cat lovers deserve to die," read another.
The point was provocation, said Kay Cofrancesco, a spokeswoman for the Lung Cancer Alliance, which sponsored the ads. When a person hears that an acquaintance has lung cancer, she said, a question immediately springs to mind: Did he or she smoke?
The answer often is no. Yet the stigma persists, even though lung cancer among nonsmokers is rising, with women accounting for two-thirds of these diagnoses. One famous example is Dana Reeve, the singer-actress and widow of Christopher Reeve. A nonsmoker, Reeve was just beginning to emerge from the grief of losing her husband when she was diagnosed with stage 4 lung cancer at age 44.
Yet blaming smokers who fell prey to cigarette marketing seems inconsistent – after all, society condemns tobacco companies for deceiving customers and even maximizing the addictiveness of cigarettes. We should "vilify the tobacco industry instead of vilifying patients," said Dr. Carolyn Dresler, an official with the Arkansas Public Health Department.
Lung cancer can be caused by such factors as exposure to radon, asbestos and other toxins. About 10 percent of lung cancer deaths are linked to heredity, said Ann Schwartz, a researcher at Wayne State University in Detroit. Yet lung cancer's image as solely a smoker's disease can undercut support for research that looks at other causes, such as heredity.
Changing the money
Many lung cancer advocates and researchers have called for a reassessment of the way money is distributed at the country's largest funder of cancer research, the National Cancer Institute.
Research grants from the NCI are the most important financing a cancer researcher can get. But the NCI's funding, allocated by Congress, has remained nearly flat since 2003, though it did get an additional $1.26 billion as part of the stimulus package of 2009.
Congress does not dictate how much NCI can spend on each type of cancer. Instead, NCI funds the cutting-edge science most likely to move the entire field of cancer research forward.
Lung cancer receives less funding than other cancers under this approach, too. In fiscal year 2012, the NCI will devote $221 million in research grants to lung cancer and $712 million to breast cancer, according to National Institutes of Health estimates.
NCI officials caution against reading too much into these numbers. Most of the research it funds is basic research applicable to multiple types of cancer. The institute also funds tobacco control and financed the National Lung Screening Trial, a large, multiyear study that showed that screening smokers via low-dose CT scans reduces the number of lung cancer deaths.
But some researchers, like Carbone, say the problem with the NCI's prerogative of funding the most advanced cancer research, regardless of what organ it involves, is that research on some types of cancer is further along than others. Breast cancer, for example, has been better funded for longer and had earlier breakthroughs that attracted more top researchers and more funding, from the federal government and other sources. "The infrastructure in the one disease is better than the other. It's a self-perpetuating problem," Carbone said.
Cancer research is increasingly focused at the molecular level instead of at the organ level. Researchers now know that cancers at different sites in the body can be caused by some of the same genetic mutations. But a single mutation can behave differently in different organs, so it is still necessary to look at particular cancers such as lung cancer, Carbone said.
The other side of the argument is represented by Dr. Harold Varmus, the NCI's director. He declined to be interviewed, but in a speech at the National Press Club in September, he said he would "object dramatically" to efforts such as legislation that would force the NCI to set aside specific pots of money for certain cancers. This approach, advocated by some groups over the years, would "take the decision-making about grant making out of the hands of the NCI and [put] it in the hands of advocacy groups," he said.
A huge "Thank You" to Owner Kim Evans and Director Christina Motes at Woodchase Academay in Vinings for their Lung Cancer Awareness Month fund raiser!
Through the generosity of the Woodchase families, they were able to raise $1,000 for The Joan Gaeta Lung Cancer Fund!
Proceeds go to the research being done at ALCMI, as well as awareness efforts in North Georgia. Thank you, Woodchase!
by By Lynne Eldridge MD
This article was originally published at About.com on
November 29th, 2012.
As Lung Cancer Awareness Month draws to a close I'm glowing from hearing about all of the events - and how each year there are more and more advocates investing their precious time and energy to spread awareness and provide funding for lung cancer research. But amidst that glow is a sadness. It seems just when I get excited about a new organization or another medical institution promoting awareness, I read the second line. "The key to reducing lung cancer deaths is to launch more anti-smoking campaigns."
Yes, those campaigns are important. But if we want to reduce lung cancer deaths, anti-smoking campaigns just aren't going to do it. Or even come close.
I'm sure many of you are saying, what in the world is she talking about?
A statistic may help:
Maybe a few numbers will make it even clearer. In 2008, the last year from which we have numbers available, there were 158,592 deaths from lung cancer in the United States, including 70,051 deaths in women. (Note that in the same year, there were 40,589 breast cancer deaths in women.) Using the 80% statistic, 126,874 of these deaths could not have been prevented by anti-smoking campaigns.
So why are we focusing on anti-smoking campaigns? Why are we focusing our attention on only 20% of people who develop lung cancer? Don't get me wrong. This group of 20% who are current smokers deserve our love and attention just as much. But what about the other 80%?
Since one of my pet peeves is listening to people rant who don't have a solution in mind, I'll offer a few.
Perhaps we should be focusing more attention on other known causes of lung cancer. Radon is the second leading cause and is totally preventable. Checking for radon in your home doesn't even take willpower. Occupational exposures need more attention as well.
And we need to focus more energy on treatment research. Even if we focus our efforts on the 20% with smoking cessation programs, many of those people will still develop lung cancer due to their history of smoking in the past.
To do this we need funding. To get funding, lung cancer needs to recognized.
Thanks to everyone who worked so hard to make this year's Lung Cancer Awareness Month more visible. Blessings to all of you.
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.”
A young woman is nearly finished running from New York City to San Francisco to raise awareness and funds for lung cancer.
Over the last few months, this story should have been all over the internet, newspapers, magazines, and on TV. It is not. Why?
Follow The Great Lung Run today. Share it. Know someone in the media? Forward this to them.
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!
by Lynne Eldridge MD
This post was originally published at About.com on November 12th, 2012.
Thanks to one solitary person with tsunami-like vision, Lung Cancer Awareness Month 2012 will again be celebrated by a lighting of the falls.
On November 16, 2012, Niagara Falls will be lit up in white for lung cancer. Not once, but twice.
Last year I shared the story of how this came to be. A story that transcends the event, transcends the waterfall, and transcends even lungLy cancer awareness month. The story about how a single person who wants to make a difference, and doesn't say "I can't," can help each of us who hears it begin to say "I can." I know I felt that way after hearing Christine Dwyers story. You can read it here.
This year, on November 16, 2012 from 8:00 to 8:15 and again from 9:00 to 9:15 Eastern Standard Time the falls will be illuminated in honor of Lung Cancer Awareness Month.
If you get a chance to attend the event, dress warmly. You can watch the display from Niagara Falls State Park, NY, or from Niagara State Park, Ontario, Canada.
But the really cool thing is that anyone, anywhere in the world can take part in this event via live webcam.
Links for the live feed:
Last year, despite the cold chill of November, Christine described the event as almost spiritual. As I remember her excitement, the thought keeps coming to my mind; what would happen if each of us lived the quote that Christine shared last year? "If you don't like something, do something to change it."
Christine has lived up to that quote. The event last year was driven by her realization about lung cancer - that it affects far too many people; people from every walk of life. Having lost her step grandfather, step dad, and best friend from the disease, she founded "Make Some Noise for Lung Cancer Awareness." Most recently, and after arranging for Niagara Falls to be lit again for lung cancer this year, her dear mother has also been diagnosed with stage 4 cancer. As she stands in the cold -- but with a warm heart - watching the falls lit up this Friday, please hold her in your virtual arms.
Photo: © Christine Dwyer
By Chris Beattie, firstname.lastname@example.org
Originally published Friday, Oct. 26, 2012 on CarrolltonLeader.com (TX).
Lung cancer is the nation's No. 1 cancer killer. And that's not just of smokers.
McKinney resident Chris Haga knows first-breath just how little the disease discriminates.
"I am such an odd case," said Chris, diagnosed with Stage IV non-small-cell lung cancer (NSCLC) in July 2010. "I'm active, work out, in good health - and I've never smoked a cigarette. It was pretty devastating; I felt like I'd done everything I could not to get this form of cancer."
November is National Lung Cancer Awareness Month, and Chris is ever eager to get the word out: smoke or not, the disease is possible. And abundantly so in America. More than 226,000 people will be diagnosed with lung cancer this year - another person diagnosed every two minutes - according to an Uniting Against Lung Cancer report, which pulled from National Institutes of Health (NIH) and National Cancer Institute figures.
There aren't many campaigns, pink ribbons or races for lung cancer, though it surpassed breast cancer as the top cancer killer of women in 1987. Twice as many women die from lung cancer each year than from breast cancer, and close to 430 people die from it every day in the U.S., according to the report.
Between 15 and 20 percent of those diagnosed have never smoked, the report says, which is part of the reason more than half are diagnosed in later stages and just 15 percent are diagnosed when treatment would be most effective.
"I remember thinking for maybe two seconds that it could be lung cancer," said DeLayne, Chris' wife, of his early symptoms. "I dismissed that thought completely because he's never smoked."
Far from it, actually. Chris was riding his bike 80 miles a week when he got a weird cough in April 2010. He blamed it on allergies, and after it got worse, a doctor said he had an upper respiratory infection. Then after chest x-rays, it was determined pneumonia.
By July, as conditions worsened, it was time for a CT scan, which revealed a tumor on his right lung. Chris had a collapsed lung, and his second biopsy confirmed NSCLC, the most common type of lung cancer.
But his diagnosis wasn't complete. Further scans and MRIs at MD Anderson Cancer Center in Houston revealed a small brain tumor. The cancer had spread to lymph nodes in Chris's chest and abdomen.
His oncologist suggested he had a mutation known as EFGR, but medicine for that didn't work. Gamma Knife radiation killed the brain tumor, but post-radiation, Chris was sent to the emergency room because his lung tumor had grown and trapped fluid in his lung.
Dr. John Heymach, a thoracic oncologist on-call that weekend at MD Anderson, canceled Chris' impending port surgery and his first chemotherapy session. He suggested Chris might instead have the EML4-ALK gene mutation, and urged him toward a promising clinical trial.
"The treatment plan completely changed within what seemed like 30 minutes," DeLayne said. "Radiation to the lung began a few days later to immediately shrink the tumor so (Chris) could beat the pneumonia."
As he awaited an ALK analysis, Chris endured 15 rounds of radiation, including one that burned his esophagus so badly he could hardly drink water. He lost 35 pounds in a few weeks.
In November 2010, on his 51st birthday, Chris was told he was ALK-positive. Before his clinical trial started the following March, he went through three rounds of chemotherapy, and one chemo medication forced him to a hospital bed for a week. Tumors had spread to his lower left lung.
But his oncologist knew then that Chris was the first ALK patient he'd ever seen at MD Anderson. He's since reviewed other patients' records to test for the mutation.
Chris started taking Crizotinib (now Xalkori) in clinical trials. The medication targets the "Achilles' heel" of ALK-type lung cancers, according an American Cancer Society article from October 2010. That article said only about 2 to 7 percent of NSCLC patients has ALK aberrations.
Eunice Kwak, an oncologist at Massachusetts General Hospital, said in the article that the drug "will not cure advanced cancers with ALK abnormalities," but patients in the drug's study were taking it for close to two years.
Six weeks after Chris began taking it, there was no active tumor growth. At his 12-week checkup, his status was "in treatment with No Evidence of Disease" - what his physician's assistant deemed "as good as it gets" for advanced lung cancer patients. Doctors won't say a lung cancer patient is cured because it so often returns, DeLayne said.
Because he's part of the clinical trial, Chris gets the typically $10,000-a-month medication for free.
"All of the (doctors) have just been the right people in the right place at the right time for me to get on this medicine and enjoy life," Chris said.
An engineer with Texas Instruments, Chris recently began customer-quality engineering for medical groups that make CT scans, MRIs, products with which he's well acquainted. "I now have a vested interest in making sure they work properly," he said.
The Hagas understand the medicine is targeted therapy and may not work forever. The cancer could realign to a new genetic location and require different treatment.
But they're able to live a "pretty normal life," Chris said, one that includes spreading the word about an oft-ignored cancer. Lung cancer received just $1,420 of NIH funding per cancer death last year, nearly $18,000 less than breast cancer and $4,000 less than the next closest, colorectal cancer, stated the Uniting Against Lung Cancer report.
Other medications are being tested in clinical trials that are showing promise similar to Crizotinib.
Chris continues the ride, on and off the bike. He uses an incentive spirometer for daily breathing exercises. The meter range for a normal person is 2,000; he's been reaching 3,750 regularly and sometimes 4,000.
Those around the Hagas know that lung cancer doesn't pick its victims based on smoking habits. And that the race of life can go on.
"I'm able to do things that a lot of other cancer patients aren't able to do," Chris said. "I realize I'm a walking, talking, breathing miracle."
For more of Chris' story, visit his blog at http://CancerOn2Wheels.blogspot.com.
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 email@example.com 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 firstname.lastname@example.org, +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 email@example.com.
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