The Research Evangelist

Taking The Mystery Out Of Cancer Research When I started working at the National Foundation for Cancer Research, I was charged with educating our donors about the cancer research we were funding. To do that, I felt it would be helpful to meet the actual researchers personally, get to know them and their work, so that I could articulate this to our donors. What better way to take the mystery out of research by sharing their stories? I became known as the Cancer Research Evangelist because after getting to know many cancer researchers personally, and visiting their laboratories, I became an advocate for the need for funding to support their work. In my experience, many of the researchers I met were passionate and approachable. They had offices with pictures of their families, they loved their work, and they just came across as real people. However, not a lot of people I know have ever met a cancer researcher. I think it’s important that researchers and patients get to know eac...

When I was diagnosed with lung cancer years ago, my wife (who is a nurse) told me that the first thing I needed to do was to become my own advocate – to be proactive in seeking information about my disease and my care strategy. Of course, this was before the advent of genetic testing and the era of precision medicine. But even today, too many cancer patients die or suffer through toxic treatments and expensive hospitalizations when state of the art molecular testing could have offered better options with either approved treatments or promising clinical trials. Most patients are not as proactive and self-advocating as they could be, and there is a need to raise this awareness about just how a newly diagnosed patient can become his/her own advocate. One way is to connect with other patients with a similar diagnosis, either online or in person. More and more cancer patients are attending medical conferences and connecting with other patients. In many cases, because of molecular testi...

It wasn’t that long ago that a diagnosis of stage 4 Non-Small Cell Lung Cancer (NSCLC) was death sentence. Patients often heard “I’m sorry, there’s nothing more we can do” or “it’s time to get your affairs in order.” Unfortunately, too often that communication still happens today. However, with the advent and increasing availability of molecular testing, we are able to identify biomarkers that can lead to available targeted treatments. My friend Linnea Olson is one shining example of how far we’ve come in lung cancer treatment, and gives me hope for good outcomes if patients get their tumors tested. It’s also why I am such a passionate advocate cancer research and precision medicine.                                              Linnea (on right) and Dr. Alice Sh...

As I’ve previously written, the most useful biomarkers for predicting the efficacy of targeted therapy in advanced NSCLC are genomic alterations known as "driver mutations." These mutations occur in cancer cells within genes encoding for proteins critical to cell growth and survival. Through the use of molecular testing, the discovery of genetic mutations that drive NSCLC is rapidly improving the outlook for some patients in stage 4 disease. This is significant because almost 40% of lung cancer diagnoses are stage 4 patients. One of the first breakthroughs was the discovery of the EGFR (epidermal growth factor receptor) mutation, which is present in about 10 percent of patients who are diagnosed with lung cancer in the United States (interestingly more common in patients with adenocarcinomas and no prior history of smoking, as well as in women and those of Asian descent). I remember being at the American Society of Clinical Oncology (ASCO) conference in 2004 and the buzz s...

Vice President Joe Biden will be leaving office in 2 weeks. This has me thinking about what role he will play in the cancer community moving forward. I’ve been optimistic about increased cancer research funding and advances in targeted treatments since President Obama announced his Precision Medicine Initiative (PMI) in early 2015, a research effort focusing on bringing precision medicine to many aspects of healthcare. The mission statement of the PMI is “To enable a new era of medicine through research, technology, and policies that empower patients, researchers and providers to work together toward development of individualized care”. In his budget for fiscal 2016 he included $216 million in funding for the initiative for the NIH, the National Cancer Institute (NCI) and the FDA.   I was even more enthusiastic when in his 2016 State of the Union, Obama called on Vice President Biden to lead a new, national “Moonshot” initiative to eliminate cancer as we know it. He launched...

Lung cancer is the most common cause of cancer mortality globally, responsible for nearly 1 in 5 cancer-related deaths, or an estimated 1.6 million people. In the U.S., lung cancer is by far the leading cause of cancer-related death among both men and women; more deaths are caused by lung cancer every year than by breast, prostate, and colon cancer combined.   But after years of modest growth in new treatment options, there is much cause for hope. In 2015, the FDA approved six new drugs for the treatment of lung cancer—a one-year record – including two new immunotherapy drugs, nivolumab (Opdivo®) and pembrolizumab (Keytruda®). These approvals were landmark events for the treatment of lung cancer in 2015. And the scientific evidence is accumulating that genomic testing and targeted therapies for lung cancer patients, particularly those who have advanced, or metastatic non-small cell lung cancer (NSCLC) make a significant difference in outcomes.   The most useful biomarkers f...

I recently attended an event in Boston organized by Elsevier called “ The Next Giant Leap ” that brought together oncology experts to talk about cancer research and the goals of the White House Cancer Moonshot initiative. The event featured a panel of experts, each approaching cancer research and care from a different perspective, and was centered on the President’s Cancer Panel Report (the Report).   The panel discussed improving access to clinical trials, the impact of data sharing on patients and care providers, and how to break down silos and improve collaboration across all sectors.   The theme of the Report was how to improve cancer-related outcomes with connected health. This is an ambitious undertaking: how can we use technology to promote cancer prevention, enhance the experience of cancer care for patients and providers, and accelerate progress in cancer research. As the #CancerResearchEvangelist and a patient advocate, my personal interest in attend...

I am building momentum in my role as the Cancer Research Evangelist - with the help of many amazing people. This is not in the religious sense, not preaching about the gospel. No, another meaning for evangelist is “a zealous advocate of something”. Years ago, Guy Kawasaki became the Chief Evangelist at Apple, and popularized the word evangelist in marketing the Macintosh for Apple and the concept of evangelist marketing. In 2006 he wrote about the art of evangelism , and even today it resonates with me because its tenets are perfectly suited for advocating for cancer research. I’ve been writing for months about the need for someone to tenaciously advocate, or “evangelize” about supporting scientists that have to spend 75% of their time fundraising. I was at the CANCERx conference recently and heard Dr. Phil Sharp from MIT reinforce the importance of basic cancer research, and how the NIH needs to lead the way. With this in mind, I’m looking forward to speaking at Jeff Pulver’s ne...

  The Precision Medicine Initiative, launched by President Obama in his 2015 State of the Union speech, aims to extend the concept of precision medicine — the right treatment or prevention plan for the right person at the right time — beyond cancer, where we have seen great progress, to all health conditions. A key part of this effort involves building the Precision Medicine Initiative Cohort Program, a group of at least 1 million Americans who will donate data about themselves, everything from health records to genetic sequences and diet surveys. FDA Chief Dr. Robert Califf thinks that number should be as high as 100 million . Perhaps this may be possible. In a recent survey published in PLOS One   more than half of the 2,600 respondents (54 percent) said they would definitely or probably be willing to take part in the program.   The President called for $215 million in fiscal year 2016 to support the Initiative, which includes several components with effort...

Meet Johnathan Whetstine, PhD.   Cancer cells that stop responding to treatment (drug resistance) are a common cause of cancer deaths. Researchers are trying to understand how to treat resistance, and/or prevent it in the quest for the next generation of cancer therapies that can save lives. One such researcher, Johnathan Whetstine, PhD and his team in the Whetstine Laboratory at the Mass General Center for Cancer Research is studying how cancer cells become drug-resistant. They recently uncovered a protein that generates specific DNA fragments containing genes that cause cancer cells to become resistant to chemotherapy. This allows replicating cancer cells to grow and defend themselves against previously effective treatments. We all know how devious cancer cells are in trying to outsmart treatments. The Whetstine Laboratory’s discovery was the first of its kind, and provides a new way to understand how cancer cells change their DNA content and potentially acquire the a...