Lung Cancer Alliance

PASSED the HOUSE: National Defense Authorization Act of 2013 Conference Report

Laurie Fenton-Ambrose December 20 2012

Today, the House of Representatives passed the National Defense Authorization Act of 2013 Conference Report. This legislation includes the Recalcitrant Cancer Research Act, legislation creating new National Cancer Institute (NCI) scientific frameworks for the most lethal cancers. Lung and Pancreatic cancers are given priority status in the bill. The United States Senate is expected to approve the conference shortly thereafter, at which point, the legislation will be sent to President Obama for signature.

The Recalcitrant Cancer Research Act of 2012 requires NCI, within 18 months, to carry out a complete inventory of all research done to date, overlooked areas, the availability of researchers and the impact on public health. Then, they are to develop a scientific framework for a comprehensive plan of research action to address all aspects of the cancer including prevention, diagnosis and treatment.

Within 30 days of its development, the scientific framework must be sent to Congress and made publicly available.

We hope the Senate will act quickly and send this bill to President Obama for signature before Christmas. This would be a truly wonderful holiday gift to the entire lung cancer community that has worked so hard to accomplish this core priority.

Lung Cancer Alliance (LCA) is committed to ending injustice and saving lives through an alliance of advocacy, education, and support. LCA provides live, professional support, referral and information services for patients, their loved ones and those at risk for lung cancer; advocates for multiple millions in public health dollars for lung cancer research; and conducts national awareness campaigns.

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

Creating a Legacy within the Lung Cancer Community

Laurie Fenton-Ambrose December 14 2012

You can create a legacy that will allow us to continue helping others and grow the lung cancer movement – while meeting your financial goals at the same time. In fact, you may be able to do more than you thought possible and still receive favorable financial and tax benefits. There are many planned giving options and we recommend that you consult with your legal counsel, tax attorney and/or financial planner about these options: naming us in your will, gifts of stock, retirement funds, life insurance policies, and real estate.

We were recently contacted by a longtime supporter, survivor and friend who decided leave part of her estate to us in her will. In her own words, we would like to share her story with you.

How did you come to find LCA?
Twelve years ago when I was first diagnosed with lung cancer, I found information about Lung Cancer Alliance and your free support programs on the bulletin board at my oncologist’s office. The staff there also recommended the organization. The rest is history!

What drew you/or attracted you most about LCA?
It was really the grassroots advocacy efforts underway to secure more research funding for lung cancer. It just felt right. I feel good about donating.

As a survivor, what resonated with you about our work?
That you are always here to give hope, comfort and help to anyone who needs it regardless of who they are, where they are or stage of diagnosis. In my mind, you are leading the grassroots movement as you build the organization. The other groups like American Cancer Society are so large and you are small — but making strides quickly. The fact that you were just getting started, extending yourselves above and beyond what the bigger groups were doing really appealed to me.

What has been your experience with our staff/volunteers?
Wonderful and very helpful with all the information I need. You care and take the time to talk to me and help me through. A positive experience right from the beginning! I also wanted to start a new source of revenue for you through my estate. The fact that I can leave a legacy is very important to me. I can play a role in helping people and also making others aware that they can help too with estate gifts to your organization – rather than put them away where they are not helping anyone else.

Why did you decide to donate to LCA?
Because I felt strongly that you need help to keep doing what you started. I knew the best place to support was in a cause that is close to me and helps others.

Why as a bequest – why leave us in your will?
Because I wanted you to count on these dollars coming in to make a measurable impact – in one lump sum as that’s what you need now — and tell others they can do the same. At the end of your life you may find that you do have some money to give away. I decided to give it to you to help as many people as possible.

What would you say to others about making a bequest gift to LCA?
It makes you feel so wonderful to know that you are leaving a legacy behind and helping other people with the care that you provide while growing the grassroots movement. The whole picture is very positive and makes me feel great. I want people to know this is an option and we can really build upon this to keep up your grassroots work and support. Keep fighting the good fight!

- Barbara, 12-year survivor, Boston, Massachusetts

For more information on how you can leave Lung Cancer Alliance in your will or estate plans, please contact Emily Eyres at 202-742-1424 or eeyres@lungcanceralliance.org

Tobacco Companies Ordered to Advertise Smoking Harms

LCA Admin December 6 2012

Last week, a federal judge ordered tobacco companies to advertise their deliberate lies about the harms of smoking and the addictiveness of nicotine, despite the companies’ pleas that doing so would “shame and humiliate” them.

“Deal with it,” said Lung Cancer Alliance President & CEO Laurie Fenton Ambrose, who called last week’s ruling by U.S. District Judge Gladys Kessler “the first step in putting the blame where it really belongs and in bringing a more compassionate and comprehensive approach to lung cancer.”

“Tobacco companies have been so successful in perpetrating fraud, hooking people as young as possible and portraying smoking as a rational choice that even public and private health organizations categorize lung cancer as a completely preventable disease,” said Fenton Ambrose.

“The result has been devastating,” she continued. “We continue to see massive and tragic loss of life, an entrenched “blame and shame” stigma and minimal research funding directed to this disease.”

“Patients are routinely blamed, whether they smoked or not,” said Fenton-Ambrose, “and the prejudice against lung cancer is so pervasive that efforts to bring the scientific breakthrough of life-saving benefit of CT screening to those at high risk are being undermined.”

Lung cancer is the leading cause of cancer death in men and women, taking more lives each year than the four other leading cancers combined.

Yet research funding for lung cancer has been consistently far below and its 5-year survival rate of 15% has barely budged since the War on Cancer legislation was passed forty years ago.

“Our commitment is to continue to hold tobacco companies accountable for their wrong doing and advocate for a more compassionate and comprehensive approach to helping those who have been victimized by these fraudulent practices,” said Fenton-Ambrose.

Recalcitrant Cancer Research Act Creates New NCI Scientific Framework Focused on Lethal Cancers – Lung and Pancreatic to Launch Initiative

Laurie Fenton-Ambrose November 29 2012

Washington, D.C. [November 29, 2012]—Today, Lung Cancer Alliance (LCA) announced that its long sought goal of establishing a research priority within the National Cancer Institute (NCI) on lung cancer was another step closer to becoming law with the United States Senate’s approval of the Recalcitrant Cancer Research Act of 2012.

The legislation is a modified version of the bill formerly known as the Pancreatic Cancer Research & Education Act which passed the House of Representatives September 18, 2012 with strong bi-partisan support. The Senate passed the legislation as an amendment to the Department of Defense Authorization bill. The Senate must pass the entire bill and the House of Representatives must concur before it can proceed to the President for approval.

The Recalcitrant Cancer Research Act of 2012 requires NCI to develop comprehensive plans of research action, or scientific frameworks, to address the most lethal cancers – those with a five year survival rate of less than 50 percent. Immediate attention is to be given to lung and pancreatic cancers.

LCA worked closely with the Pancreatic Cancer Action Network to secure priority status for lung and pancreatic cancers in the legislation which together cause one in every three cancer deaths and whose 5-year survival rates of 15% and 6% respectively have barely moved since the 1972 launch of the “War on Cancer”.

Laurie Fenton Ambrose, LCA President & CEO, credited the achievement to the unrelenting work of the Pancreatic Cancer Action Network and its advocates along with the extraordinary efforts of lung cancer advocates all across the country who worked tirelessly to shine a brighter light on these deadly cancers.

In addition, Fenton Ambrose commended Senate leaders specifically Senator Sheldon Whitehouse for his work on behalf of the pancreatic cancer community and Senators Dianne Feinstein, Johnny Isakson and John Kerry for their sponsorship of the Lung Cancer Mortality Reduction Act whose central tenant, bringing a coordinated and comprehensive research approach to all aspects of the disease, was incorporated in the amended bill.

“Advocates, committed congressional leaders and legislative momentum were the driving factors that gave LCA the leverage needed to secure priority status for lung cancer in the compromise bill that was negotiated in the House and Senate Health Committees over the past weeks,” she said. “Thank you advocates and thank you Senate leaders for helping us realize this long sought goal.”

The Recalcitrant Cancer Research Act of 2012 requires NCI, within 18 months, to carry out a complete inventory of all research done to date, overlooked areas, the availability of researchers and the impact on public health. Then, they are to develop a scientific framework for a comprehensive plan of research action to address all aspects of the cancer, including prevention, diagnosis and treatment.

Within 30 days of its development, the scientific framework must be sent to Congress and made publicly available.

“We are hopeful that this new research standing at NCI will bring long needed focus on these lethal cancers, continue to engage advocates in the process, and lead to greater and faster breakthroughs and improvements in survival,” continued Fenton Ambrose. “From prevention, to screening for those without known risk factors as well as those at high risk, to better treatments and even cures—this is what our movement is all about.”

In 2007, LCA secured passage of bipartisan resolutions in both Houses of Congress calling for lung cancer to be a national public health priority.

The Lung Cancer Mortality Reduction Act, legislation calling for a unique multi-agency comprehensive plan of action to reduce mortality by 50% by 2020, was subsequently introduced in both Houses, again with bi-partisan support, and at latest count co-sponsored in the House and Senate by 117 Members.

In addition, LCA joined forces over four years ago with the Pancreatic Cancer Action Network and other lethal cancer advocacy organizations to petition NCI to develop a new targeted research initiative focused on lethal cancers with low survival rates and little progress.

The Recalcitrant Research Cancer Act of 2012 is an amalgam of these strategic efforts.

Lung Cancer Alliance (LCA), is committed to ending injustice and saving lives through an alliance of advocacy, education, and support. LCA provides live, professional support, referral and information services for patients, their loved ones and those at risk for lung cancer; advocates for multiple millions in public health dollars for lung cancer research; and conducts national awareness campaigns.

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

Lung Cancer Alliance Launches Lung Screening Initiative for At-Risk Veterans

Laurie Fenton-Ambrose November 8 2012

As a part of Lung Cancer Awareness Month, we have partnered with the Vietnam Veterans of America (VVA) and some of the finest medical centers across the country to offer CT screening and life-saving information on the risks of lung cancer for our nation’s veterans.

This brand-new national pilot initiative will take place from November 8^th to November 13^th, during the days surrounding Veterans Memorial Day, in order to reach those men and women who have so courageously served for us.

Screening those at high risk with low dose CT scans before symptoms occur can identify lung cancer at an early and most curable stage, saving tens of thousands of live every year.

Veterans—and Vietnam veterans in particular—suffer from a worse risk for lung cancer than civilian populations because of increased smoking rates and exposure to known carcinogens during active duty. While lung cancer may take decades to develop, symptoms do not usually become obvious until the cancer has already grown into late stage when survival is less than 15%.

The initiative will lead off November 8^th at Walter Reed National Medical Military Center in Bethesda, MD. Participating medical centers will join during November 8^th – 13^th, facilitating discussion on risk as well as scheduling and performing a low dose CT to screen for the disease.

Participating medical centers include:

Lahey Clinic, Burlington, MA
Norton Healthcare, Louisville, KY
Roswell Park, Buffalo, NY
St. Joseph’s Hospital and Medical Center, Phoenix, AZ
Swedish Cancer Institute, Seattle, WA
Sylvester Comprehensive Cancer Center, Miami, FL
WellStar Health System, Atlanta, GA

We hope that this lung screening initiative will raise awareness of the risks for lung cancer and help assure responsible care for at-risk American veterans. They have given so much in serving us and we strive to better serve them.

Roswell Park: What Veterans Need to Know About Lung Cancer Risk >> http://bit.ly/Sqikfi

Lung Cancer Alliance Earns 4-Star Charity Rating for Third Consecutive Year

Laurie Fenton-Ambrose October 16 2012

We are honored to announce that Lung Cancer Alliance has received a 4-star charity rating from Charity Navigator for the third consecutive year.

Only 9% of America’s charities have received this top designation for at least three years in a row. Additionally, LCA is among the “Top 10″ most highly rated charities with favorable reviews by the public.

Four stars is the highest rating for sound fiscal management and commitment to accountability and transparency given by Charity Navigator, the nation’s largest charity evaluator. Ken Berger, President & CEO of Charity Navigator, said, “This differentiates Lung Cancer Alliance from its peers and demonstrates to the public it is worthy of their trust.”

We hope this shows that your generous donations are being used to their fullest potential. Together we can make a difference in the fight against lung cancer.

We couldn’t have done this without our supporters, Board, staff, volunteers and advocates who have all worked so hard and put their confidence in LCA to lead lung cancer’s national movement. This designation renews our commitment to saving lives and ending the injustice of losing loved ones—a reminder that no one deserves to die from lung cancer.

Make a difference. Donate now.

Recalcitrant Cancer Research Act

Laurie Fenton-Ambrose September 28 2012

On September 19th, the House of Representatives passed the Recalcitrant Cancer Research Act, which establishes a new targeted scientific research framework within NCI to address those cancers whose 5-year survival rates are less than 50%. Priority status was given to pancreatic and lung cancer.

The United States Senate prepared to consider the legislation this past weekend but unfortunately did not pass it before recessing for the Presidential elections. Congress is now out of session but will return November 13TH to consider unfinished business of the 112th Congress. We will continue to monitor and advocate for the passage of this important legislation during this time and will keep you apprised of the
developments.

Lung Cancer Low Dose CT Screening For 9/11 Survivors + Responders

Laurie Fenton-Ambrose September 25 2012

Recently, lung cancer and many other cancers were added to the list of diseases covered by the Zadroga 9/11 Health and Compensation Act Fund.

We appreciate the work of the World Trade Center Health Program and commend the decision to expand the list of eligible diseases .

At the same time, we urge the inclusion of low dose CT screening for lung cancer.

While breast and colon cancer screenings are included, lung cancer screening, even for those at high risk, is not. The overall five-year survival rate for breast cancer is 89% and colon cancer 64.5% due to early stage diagnosis. In comparison, the overall 5-year survival rate for lung cancer is 15%, and only 16% of cases are diagnosed at an early stage.

Low dose CT screening for those at high risk for lung cancer has been scientifically proven by the National Cancer Institute to dramatically reduce lung cancer deaths and has been endorsed by many of the leading medical professional organizations.

We need to do everything possible to ensure the 9/11 survivors and responders have the benefit of all the tools available to detect cancers at their earliest and most curable stages.

One Step Closer to Conquering Lung Cancer

Laurie Fenton-Ambrose September 19 2012

The U.S. House of Representatives and the U.S. Senate are poised to take votes in the next 48 hours that will mean that our movement is getting close to achieving a long held goal – making lung cancer prevention, diagnoses and treatment a priority on our nation’s health care agenda. It’s a major step forward, and we are proud to have worked with thousands of people from coast to coast to help achieve this incredible victory. We applaud the bipartisan efforts of the House and Senate to allow for this important proposal to go forward, and we are grateful to our friends at the Pancreatic Cancer Action Network for working with us to help shine a light on the need for targeted research on these two areas. This legislation will give The National Cancer Institute the tools it needs to step up its efforts to combat cancer, and we believe it’s a major leap forward that will ultimately improve public health and help save lives. We are monitoring closely both the House and the Senate and the legislative process, and we look forward to having President Obama put his signature on what we believe is landmark public health legislation.

The movement we started several years ago is now paying off. We have joined forces with the Pancreatic Cancer Action Network and other lethal cancer advocacy organizations to petition the National Cancer Institute to develop a new targeted research initiative focused on lethal cancers with low survival rates and little progress. The tireless efforts of people in every part of the country have made the difference. Thanks to all of them for their incredible efforts.

Lung Cancer Alliance: A Look at the Coming Months

Laurie Fenton-Ambrose September 17 2012

We are excited to make this a watershed moment for patients, survivors and caregivers alike by ramping up our initiatives to bring life-saving, cost-benefiting, stigma busting efforts to all those affected by lung cancer.

We’re confident that lung cancer’s mortality can be cut in half by 2020 through our multi-tiered plan of action:

Integrate lung cancer screening into public health benefit
Increase federal and state research funding
Continue our national awareness campaign tackling stigma
Expand messaging to include information on risk
Increase our live and professionally staffed support, information and referral services to meet growing needs and expectations

With recent scientific validation that screening those at high risk with low-dose CT scans can save tens of thousands of lives a year (and at lower cost for each life saved than other cancer screening methods), we swiftly translated the science into public health benefit. We released the first of its kind National Framework for Lung Screening Excellence and Continuum of Care, to ensure that lung cancer screening is carried out safely, responsibly and cost effectively.

We applaud the 120 plus medical centers across the country that have adopted the National Framework and established lung cancer screening programs within their continuum of care.

The No One Deserves to Die Campaign has been an overwhelming success. It took direct aim at the biggest obstacle preventing any progress in lung cancer survival—the stigma and blame associated with the disease. Our objective was to break down this barrier and open the door to a more constructive public discussion on how to reduce lung cancer’s mortality rate—once and for all. We will be launching the next phase of the campaign in early 2013.

Federal research funding and a national plan of action for all aspects of lung cancer continually grow in both dollars and support. The Lung Cancer Mortality Reduction Act of 2011, the first ever bi-partisan call for a comprehensive and coordinated plan of action to address lung cancer, with the specific goal of reducing lung cancer mortality 50% by 2020, now has a record setting number of 29 Senators and 70 Members of Congress cosponsoring the legislation. We have also secured an additional $10.5 million specifically for lung cancer research in the FY2013 Department of Defense Lung Cancer Research Pipeline. We established this dedicated pipeline in 2008 and have secured $70 million in federal research funding to date.

We appreciate those who have participated in our signature national awareness events, such as the National Shine a Light on Lung Cancer Vigil and Team Lung Love. As these events continue to grow we continue to fuel our grassroots movement and engage advocates in record numbers representing every state. The National Shine a Light on Lung Cancer Vigil has gone international and we have partnerships with the Australian Lung Foundation, CanSURVIVE in Egypt and the Albert Einstein Israeli Hospital in Sao Paulo, Brazil!

We are confident that together, we can bring about the greatest life-saving and cancer mortality reducing effort ever by 2020.

Thank you for your help, your support and your continued belief in our work.