Lung Cancer Alliance for a Happy + Healthy 2014

2013 was a fantastic year for all of us at Lung Cancer Alliance. Now that 2014 is just around the corner, the LCA team has come up with New Year’s resolutions to stay happy and healthy.


Laurie Fenton Ambrose, President & CEO: Step up my exercise routine as though I was training for the Olympic Pentathlon. I have been dying to learn how to fence!


Amy Copeland, Associate Director of Medical Outreach: My resolution is to try something new every week. It might be as simple as trying a new recipe, taking a class or going to a museum I have not been to before. I’ll be going hot air ballooning on the 29th so I think that will count for the first week!


Edy Whidden, Chief Administrative Officer: Get rid of all things I have not used in the past year at home.


Maureen Rigney, Director of Community and Support Services: I am going to take at least one fitness class and am going to try to learn a new skill each month.


Emily Eyres, Chief Operating Officer: Thinking about getting my butt kicked again by the Marine Corps Marathon but, ugh… It hurts just saying that!


Josh Hunter, Development and Advocacy Coordinator: Read at least two books per month.


Gabby Geier, Communications Manager
: See a new country this year!


Kristen McAvoy, Administrative Assistant: To write more. I have always loved writing, so I want to start doing it regularly by creating a blog. So I guess my New Year’s resolution is to write an entry every week.


Lanni Boyd, Senior Manager of Events and Volunteers: Learning to rock climb

Comment below with your 2014 resolutions, and check out our Facebook page for more tips to stay happy and healthy in the new year.

Message On Lung Cancer Screening

As many of you have most likely seen, lung cancer screening has been in the news many times in the past year. We hope to see a final recommendation from the federal government approving CT screening for those at high risk before the end of this year!

As this important decision draws near, you will likely see an even more heightened focus as well as differing opinions in the press about how CT screening can benefit you.  It may be confusing – but this is what is important to remember.  Above all, lung cancer screening is a life-saver. Period.

Yes, any screening method or drug treatment for any disease comes with varying levels of risk.  But the good news for lung cancer is that today we have a greater understanding of how best to manage any suspicious nodule than we did years ago. We also have more advanced imaging tools to assist us in the earlier detection of lung cancer than those used in earlier outdated studies.  And unfortunately many press reports are using this outdated information.

Over the past two years, through our National Framework, we have been working with screening centers of excellence  to ensure responsible and quality screening and care is available to those who need it most. We will continue to make sure you receive only the most current, updated and responsible information.  We will continue to work with committed leaders in the field to develop tools and materials to guide your understanding and help with conversations you may have with your doctor, family and the people you love.

We urge you to continue to seek information about your lung cancer risk and whether you could benefit from screening. This truly is a win-win for those at risk, researchers seeking cures and all who are impacted by lung cancer.

We promise you that we will never take our focus off the goal of savings lives and advancing research to help anyone impacted by this disease.

A Wife’s Legacy Lives On

“Gail, what’s with this cough you have that won’t go away? Why are you getting so tired lately? You work out all the time and are in great shape, just go to the doctor since it has to be something simple they can fix with a shot. Must be something like pneumonia or some simple virus you just can’t shake. What do you mean you have to go for x-rays? They’re admitting you to the hospital? You’re having a scan to look for what?”

Then the emergency room doctor walks in and says in a very matter of fact tone, “It’s a tumor in your lung.” Life just stops and we’re next looking right at the freight train coming at us a million miles an hour.

Find an oncologist. Put a port in your chest. Start chemotherapy and continue for ten rounds. Get told after chemo stops working, “If you don’t do radiation therapy, you have about a week to live.” Twenty five radiation treatments follow. Get your affairs in order. Get married, because you know time is running out.

And then just 363 days after we heard “it’s a tumor,” you’re gone.

That’s how fast lung cancer wrecks lives. That’s how fast I lost the love of my life.

How did this happen? Why couldn’t more be done? 46 years old when they diagnosed you with this horrible disease. We were supposed to grow old together and be there for each other and now you’re gone. While going through treatment we learned how horrible the survival rates are. How can that be? Haven’t people been researching this for years now? What’s been going on for the past 40 years? You learn the facts. Things like more people in the United States die from lung cancer than any other type of cancer and yet it is one of the least funded for research or that one in fourteen will get this disease and you know that this is just unacceptable. So what can I do about it?

Well the answer is a lot and by doing something very simple. In looking for answers after her passing, I found the Give A Scan program and was very impressed that the focus was on being the world’s first patient-powered open access database for lung cancer research. It was a no brainer to ask for her scans to be collected together and sent in to be part of this database. It was as simple as contacting her doctors for some details that I needed to add to the questionnaire, making a phone call to the hospital for a copy of her scans and finally taking the time to mail it. How hard is that, maybe a couple of hours?

Gail was worried before she passed away that her nieces and nephews, we have nine of them, wouldn’t remember her when she was gone, but I told her they’ll remember because of all the great stories we have of her when she was right here with us, but a bigger part of her legacy just might be in those scans. Maybe some research team might find better treatments or even a cure, so that our nieces and nephews might live in a world where they never have to hear those nightmare words, “It’s a tumor in your lung.”

So that’s my hope after losing her. Maybe something good can come out of something horrific. I wished I never had to be on this path, but it happened and I can’t change losing Gail. I decided to honor her and to make sure future generations might have more hope than we did by choosing to participate in this program and send in her scans and treatment history. It’s my hope many others might read this and will choose to help in these research efforts as well. Those lucky enough to survive and those who have lost someone close to them can easily choose to join me and make a difference as well. It’s so very simple and the cost is just your time. Trust me…you’ll feel better doing it.

Thank you to the Lung Cancer Alliance for collecting this data and advocating for research, better care for patients and hopefully a cure, but most importantly, God bless all of you whose lives have been touched in some way by lung cancer. You each know all too well the horrors of this disease. It’s time for us to now pick up the fight for those who no longer can and I hope you’ll be inspired to also participate in the Give A Scan program so maybe future generations can say, “Remember when lung cancer couldn’t be prevented or cured?” I hope it will be Gail’s nieces and nephews who are the ones saying it.

Scott Reid
New Jersey

Newly Published Research Further Supports the Cost-Effectiveness of CT Screening for Those At Risk for Lung Cancer

A message from LCA President & CEO, Laurie Fenton Ambrose

August has been a groundbreaking month for the lung cancer community! First, we received the long awaited news from the Government Task Force responsible for providing national screening recommendations that low dose CT screening for those at risk for lung cancer would be recommended. Screening with CT scans is the only proven method that has been confirmed as a way to reduce lung cancer deaths through early detection

Now, we have a new study, released this week, adding to this recommendation that low dose CT screening is highly cost-effective for those at risk (ages 50 – 64). The study also shows that offering smoking cessation interventions with an annual screening program will further improve the overall cost-effectiveness of lung cancer screenings.

This study, A Cost-Utility Analysis of Lung Cancer Screening and the Additional Benefits of Incorporating Smoking Cessation Interventions, is the third in a series of peer-review articles evaluating the benefits of early detection of lung cancer. The studies were performed by Milliman, Inc., a leading international actuarial firm, as well as researchers at Legacy’s Schroeder Institute for Tobacco Research and Policy Studies with input and support from Lung Cancer Alliance.

All three studies show strong evidence that early detection will significantly reduce lung cancer deaths – upwards of 70,000 a year and that low dose CT scans are more cost-effective than commonly used screening methods for other cancers.

We are so proud to have partnered with Legacy and Milliman on these studies which further bolster our long advocated call for backing of CT screening for those at risk for lung cancer. We will continue our efforts to ensure that this life – saving benefit is now deployed responsibly in our health care system.

Creating a Community: Host, Attend, Support a Shine a Light on Lung Cancer Vigil

Guest Blog by Jenny White

 

This year will be my third year hosting a Shine a Light on Lung Cancer Vigil in Nashville and each year, it just gets better and better.

Our first year, we hosted the vigil at St. Thomas Hospital and had a great turnout.  Last year, we held it at the club level of the Titans Stadium which faces downtown Nashville and the support we received was unforgettable. LCA helped with finding a great venue, gave us a toolkit with glow sticks, handouts and bracelets, and they offered advice and suggestions when we needed help!

We invited a radiologist to share information on lung screening guidelines and we featured a patient who participated in a screening trial and was diagnosed with stage 1 lung cancer. She had heard about the trial on the local public radio station, realized she fit the criteria and acted on the information.

We asked the daughter, who lost her father, to share her story and why she has added her voice to the historic momentum surrounding lung cancer.  And we honored all those impacted by lung cancer with a moment of silence while we shared a remembrance video.

Jenny White (center) with vigil attendees at the Shine a Light on Lung Cancer Vigil in Nashville, TN 2012.

Why do I continue to host a Shine a Light on Lung Cancer Vigil?  Because of the people who are willing to share their own experiences, empower us to raise awareness and make a difference and for the patient who had her cancer found in stage 1 through early detection in the hope we can exponentially add to the number of lung cancer patients diagnosed early.

After my own diagnosis of lung cancer, I looked for something in Nashville to join in order to fight this terrible disease. I couldn’t find anything! I wanted to offer my community an opportunity to come to an event that honored individuals whose lives have been impacted by lung cancer, whether they were currently in treatment, out of treatment, loved ones or health care providers. After researching national lung cancer organizations, I found my match in Lung Cancer Alliance. Shine a Light on Lung Cancer Vigil is my vehicle to make a difference for those who fight against lung cancer.

For anyone interested in hosting, supporting or attending I encourage you to visit www.shinealightonlungcancer.org and help us continue to empower our community.

Jenny White is an active member of the Nashville lung cancer community and the Director of our Tennessee Chapter.

Saving Lives With Screening

A MESSAGE FROM LCA PRESIDENT & CEO, LAURIE FENTON AMBROSE

On average over  435 people die a day of lung cancer.  Over 200 won’t – if we implement CT screening right – right now.  And the good news is that pieces are falling into place to start saving lives today!

First, science has now proven beyond a doubt that low dose CT screening for those at high risk for lung cancer will increase survival rates. In November 2011, the National Lung Screening Trial, the largest cancer screening trial ever conducted by the National Cancer Institute (NCI), showed that screening those at high risk with a low dose CT scan improves survival by 20%. Other studies and modeling analyses have also shown that the improvement could be as high as 64%!

Second, there are a defined set of risk factors for people to know if they are at risk for lung cancer. An extensive smoking history, an advanced age, a family history and certain exposures to Agent Orange or other known carcinogens, among others, can put you at elevated risk for the disease.

Third, major medical associations have put together clinical guidelines to aid medical professionals in their efforts to set up responsible screening programs across the country.

Fourth, in addition to the clinical guidelines, Lung Cancer Alliance developed a set of principles to link and guide best practices uniformly among community-based and academic medical centers.  These principles are laid out in the  National Framework of Excellence for Lung Cancer Screening and Continuum of Care, and to date have over 75 medical centers following these best practices.

Fifth, some insurance companies have begun to cover lung cancer screening for those at risk in their health care plans.   

But the most important missing piece right now is government action.  The governing body that ranks all screening methods, the United States Preventive Services Task Force, (USPSTF), has been evaluating the available data but has yet to come out with its recommendation.  This delay is inexplicable.  We are urging an expedited review and calling for its highest level of recommendation.

We are working here in DC to ensure the life saving benefit of low dose CT screening is available to those who need it most.

While we continue this life-saving work – please be mindful of your health and the health of your loved ones. Learn about your risk for lung cancer. If you feel you could be at high risk, call your doctor or contact a screening center of excellence for help. The next life saved, could be your own.

Lamenting the Loss of Two Groundbreaking African American Women

In a matter of days, the nation lost two vibrant women whose writing and voices elevated important issues, especially those impacting the African American community. 

Lynne Duke died on April 20 at age 56.  She had been the Washington Post’s first African American female foreign correspondent, serving as Johannesburg Bureau Chief from 1995 to 2002 and covering much of southern Africa.  In her 2003 memoir — “Mandela, Mobutu, and Me: A Newswoman’s African Journey,” she chronicled her work and celebrated the “extraordinary fortitude, unwavering hope and profound humanity despite immense odds” of the African people.

Just days later, Dr. Antronette K. Yancey, a physician and a UCLA public health professor, who urged people to incorporate exercise into their daily lives in small bursts, died at age 55. In 2010, she authored a book — “Instant Recess: Building a Fit Nation 10 Minutes at a Time.”  She was a champion for health equity and was committed to real-life solutions to public health problems.  Dr. Yancey was a non-smoker.

It was stunning to lose two such young, vibrant, impactful women to lung cancer in just one week.  Lung cancer is the leading cancer killer of women and African Americans, but very few people are aware if this.

Blame, shame and stigma surrounding lung cancer have stymied efforts to lessen its lethal impact — whether these remarkable women smoked or not, we know that no one deserves to die of lung cancer.

Lung cancer is the leading cause of cancer deaths among African Americans.

Knowledge is power >> 

Anthony J. Principi Joins Lung Cancer Alliance Honorary Board of Directors

I am delighted to share the news that Anthony J. Principi, former Secretary of the United States Department of Veterans Affairs, has joined our Honorary Board of Directors. It is an understatement to say that it is a true privilege to welcome Secretary Principi to our Honorary Board. During his 4-year tenure as VA Secretary, Secretary Principi directed the federal government’s second largest department, responsible for a nationwide system of health care services, benefits programs, and national cemeteries for America’s 25-million living veterans and dependents.

A New York native, Secretary Principi is a 1967 graduate of the U.S. Naval Academy at Annapolis, Md. and was awarded the Bronze Star with combat “V” for valor and several other military decorations for valor during his service in the Vietnam War. His counsel will benefit our overall mission and the entire lung cancer community. He has shown a proven committed to the protection and betterment of others, especially veterans who are at an elevated risk for lung cancer. We are honored that he has joined our fight!

Read more information about Secretary Principi here.

Follow Lung Cancer Alliance on Facebook and Twitter: @LCAorg.

Take a Deep Breath of Hope

Join. Walk. Fight.

Whether you’re looking for support, inspiration or to save lives, your participation in the 5th Annual San Diego Breath of Hope 5k Walk is how we can bring positive change to lung cancer.

Don’t just stand up for what you believe in, walk for it. Register today for the 5k walk on Sunday, April 28, 2013 at 9 a.m. (on-site registration and expo begin at 7:30 a.m.) at Cancer Survivors Park on Harbor Island in San Diego.

To show how you can make a difference, meet this year’s walk chair, Cipi Enriquez.

Q: How did you get involved in fighting lung cancer? Who is your inspiration?
A: I got involved when my wife Maria was diagnosed with lung cancer in 2003. She is my inspiration.

Q: What is it about the San Diego Breath of Hope that is so special?
A: Besides being the only lung cancer specific venue in San Diego, it is like a family gathering because you see all the people that were there in previous walks and you can catch-up with them.

Q: How long have you been involved in the San Diego Breath of Hope?
A: I was involved since it began five years ago.

Q: What is your favorite part of the walk? What can people look forward to this year?
A: I like seeing all the people that return and bring new walkers! You can look forward to a uplifting experience with a festive atmosphere as we help bring attention to the need for more resources to one day find a cure for this and all other cancers.

Q: How can one person make a difference in the battle against lung cancer?
A: One person can tell their friends and family to tell their friends and family to join us here. That is how the San Diego Breath of Hope began. Three survivors told their friends and family and now we have over 1200 participants!

If you can’t make it to the event, donate to the cause.

With your help, we can create an impact much greater than 3.2 miles.

NEW STUDY: Lung Cancer Screening Could Prevent 12,000 Deaths

A newly released study shows that by screening a targeted population of 55-74 year old smokers and former smokers with CT scans could prevent 12,000 lung cancer deaths a year.

“This is a very large number of lives, the equivalent of eliminating almost all deaths from cervical cancer and melanoma combined,” said Laurie Fenton Ambrose, President and CEO of Lung Cancer Alliance.

This would be the biggest single mortality drop in cancer history.

“We hope that the study will spur our public health officials to move now to formally recommend screening and incorporate this life-saving benefit for those at risk in healthcare coverage,” Fenton Ambrose said.

“This number cannot be ignored, and we believe that the implementation of safe, efficient and equitable screening for those at risk the number of lives that will be saved will prove to be even higher,” she said.

The calculations for the estimates released by the American Cancer Society today, were based on the results of the National Lung screening Trial (NLST) which compared CT screening to chest x-ray screening for smokers and former smokers with a 30 pack year history.

Within a very short period of time for a screening trial, and after only three annual screens, there were 20% fewer lung cancer deaths in the CT arm, which triggered an immediate termination of the trial so people in the chest x-ray arm could be advised of the results.

But the analyses of subsequent studies as well as other national and international trials indicate that with more screening rounds and a longer look-back period and the advances in imaging and screening techniques that have occurred since the NLST, the mortality benefit could be 35% to 65%.

“Our highest priority is to see that screening those at risk is done right and well,” Fenton Ambrose said referring to LCA’s National Framework for Excellence in Lung Cancer Screening and Continuum of Care, which lays out the rights of people to know if they are at risk, the risks and benefits of screening and what to look for in a screening site.

LCA is listing sites that adhere to the principles of the Framework on its website to help answer the questions: Am I at risk and where should I go.