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New York Daily News – How the cancer moonshot really could change everything: The key is aggregating anonymous patient data

New York Daily News – How the cancer moonshot really could change everything: The key is aggregating anonymous patient data

Thirty years ago, I watched my sister Gale die of breast cancer. In those days, that meant seeing a strong and beautiful woman lose an excruciating battle against a disease that we had barely begun to understand. What few drugs we had were toxic; at best, they offered a poisonous pause in a patient’s painful decline. Limited therapies meant little hope. In too many cases, a cancer diagnosis was a death sentence.


Gale, a lifelong New Yorker, died on March 13, 1986. She was 40. Her daughter, Jillian, was 4 years old.


My sister’s death changed my life; the end of her fight was the start of mine. I left a career as a successful businesswoman and founded Friends of Cancer Research, an advocacy organization that develops solutions to overcome barriers standing in the way of conquering cancer. For decades, our goal has been to get new and better cancer treatments to patients who need them.


This week could mark a turning point. On Wednesday, the Blue Ribbon Panel of the White House Cancer Moonshot initiative — which President Obama announced in his State of the Union address in January, and which Vice President Joe Biden has led with irrepressible energy and commitment — released its recommendations for making a decade’s worth of progress in the fight against cancer in the next five years.

I had the privilege of serving on the panel, alongside our country’s finest scientists and clinicians. Taken together, the recommendations represent the most compelling, comprehensive strategy for improving the lives and clinical outcomes of cancer patients ever crafted.


The report’s science is exquisite, but what is equally striking is the benefit the recommendations could provide patients. An obvious example is the report’s recommendation for a renewed focus on “patient-reported outcomes.” Patients and their families have long argued that self-reporting by patients can provide clinicians with invaluable data on the safety and side-effects of cancer treatments. Medical experts have now confirmed — and the panel’s report reflects — the wisdom of that insight.


The panel also proposes new strategies to expand access to clinical trials so that all patients may benefit from cutting-edge therapies and techniques. To improve access to treatment and optimize their use, we must ensure that clinical research is a part of routine cancer care — and that no patient is left behind.


The report recognizes the twin insights at the heart of patient care: First, that each patient, and every cancer, is unique. And second, that only by aggregating and accessing anonymous patient data can we uncover patterns and unlock breakthroughs. With these truths in mind, the panel urges both increasing genetic testing — which will enhance oncologists’ ability to understand the intricacies of each patient’s cancer and to recommend the best possible course of treatment — and expanding anonymous data sharing among our country’s cancer centers.


In the next decade, more than 15 million Americans — 150,000 of them children — will be diagnosed with cancer. The Blue Ribbon Panel has laid out national research priorities that could transform the future of treatment. The need has never been greater, the science never more promising. The time to take action is now.


Bipartisan legislation is soon to be reintroduced in both chambers of Congress that would create a new federal fund for medical innovation. The bill, the 21st Century Cures Act, previously passed the House with a robust majority. It could be the vehicle for the Cancer Moonshot initiative, and fulfill this once-in-a-generation opportunity to improve and save millions of lives.


For cancer patients and their families, this is an opportunity we cannot afford to miss.


Jillian, my niece, turned 34 in May. Gale did not live to see her become the remarkable young woman, in her mother’s image, that she is today. In this, our family is like so many others; a mother’s spirit lives on in a daughter whom she kissed goodbye too soon, and her fight continues in the loved ones she left behind.…