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Partnering With Patients To Find Cures

We count everything that has happened this year as progress, knowing that working together leads to scientific breakthroughs and programs that ease patient suffering. For me, these successes not only help me shake off the blues, but they also fuel my hope that victory is imminent against this dreadful and frightening disease.
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When national Lung Cancer Awareness Month arrives each November, I sometimes get the blues.

I look at the numbers and see tens of thousands of Americans still dying from the disease. Senior citizens. Active men and women. Young Mothers. College students. I empathize with the patients and their families who come to the Addario Lung Cancer Foundation to learn about new research and find caring companionship. And I rage at the predictions of a continued rise in new diagnoses - one every 2.5 minutes in the United States.

It's agonizing and every year I say, "Something has to change."

Well, something is changing. In fact, a lot is changing. This November caps a year in which hope and excitement have become the optimum words in 2016 among those of us in the cancer community.

The Addario Lung Cancer Foundation is unveiling two new and exciting initiatives - the creation of a first-ever Lung Cancer Patient Registry for patients around the world to share their data - and "Don't Guess. Test." a national campaign to inform patients, caregivers and physicians about the importance of comprehensive genomic testing and how it can help inform personalized treatment options.

Our hopes were first stirred in January with a White House vision of a "Cancer Moonshot." Who would have thought that Vice President Joe Biden would play a role in transforming and energizing the war on cancer. But when his son was diagnosed with and died because of brain cancer, Biden went from an outsider in our community to our champion. Now he's a cancer populist who has inspired physicians, scientists, technologists and patient advocates like me around the world. Great minds in medicine, science and technology now embrace the Biden call to achieve 10 years of progress in five years - and it's working.

I've come away from my meetings with the vice president and his Cancer Moonshot team enthusiastic and recommitted to the cause of making lung cancer a chronically managed disease within 10 years - and to ultimately find a cure.

In its final report to the nation, experts with the Cancer Moonshot said unleashing the power of data to unlock "scientific advances through open publication and storage platforms" was a key strategic goal. The Addario Lung Cancer Patient registry meets that need head on.

Right now, there is no global data repository that tracks all patients with lung cancer. What distinguishes our registry is it will be driven by patients who enter their own data - information that is then validated automatically with their personal Electronic Medical Records. They can decide how active they want to be in the registry process. Do they want to share the particulars of their case with researchers? Are they interested in being contacted about new research or trials? Would they like to receive news specific to their type of lung cancer? Our registry gives lung cancer patients complete control over their role in the larger community effort, and allows them to access the registry to see what their disease looks like compared to other patients in the registry.

It's another important tool, like IBM's Watson, that opens up a new world of lung cancer data to oncologists, researchers and patients working together to combat this disease.

Researchers need this data. It allows them to review the cases of thousands of patients with lung cancer the world over for patterns that could lead to better understanding, more effective treatments and ultimately better outcomes.

Patients joining the registry can play a pivotal role in the drive for a solution by generously giving their specimens for research, demanding genomic profiling and participating in clinical trials.

Our Don't Guess. Test. Campaign is the result of a partnership with Cambridge, MA. - based Foundation Medicine, a leader in comprehensive genomic testing. Don't Guess. Test. is a nation-wide campaign to educate patients, physicians, and caregivers on the new science of comprehensive genomic testing of cancer tumors, but also personalized medicine and how it leads to tailored treatments for those with the disease.

Approximately 80 percent of all cancer cases are diagnosed and treated in community hospitals where resources are stretched thin. The burden of keeping up with the science and data around cancer research, and knowing about new treatments and the intricacies of comprehensive genomic testing can often times be overwhelming.

There is no time for trial and error when you are fighting lung or any cancer. Don't Guess. Test. urges awareness of testing that can streamline this process. Instead of guessing about which treatment might be most effective, a comprehensive genomic test of a lung cancer tumor can, within 1 to 2 weeks, measure the entire coding sequence of hundreds of cancer-related genes to provide a full picture of an individual cancer at the molecular level.

Armed with this information, physicians can then tailor a personalized lung cancer treatment plan for patients. In many cases, this approach is extending lives and in the best of cases, leading to remission in people with the disease.

The cornerstone of the Cancer Moonshot is to innovate, communicate, collaborate and disseminate. Both of our new programs embrace these goals and aim to reach millions of people with new and powerful information about potential solutions.

Lung Cancer Awareness Month is a time when we pause to reflect on the accomplishments this year in our war against lung cancer and the triumphs patients have had fighting the disease. It is also our opportunity to look forward, to 2017 and the continuation of Biden's Cancer Moonshot in the next presidential administration.

We count everything that has happened this year as progress, knowing that working together leads to scientific breakthroughs and programs that ease patient suffering. For me, these successes not only help me shake off the blues, but they also fuel my hope that victory is imminent against this dreadful and frightening disease.