Innovative Online Community Offers Guidance to Patients With Pancreatic Cancer and Their Families
Thursday, November 10, 2016
Let’s Win is an online community for persons with pancreatic cancer (www.letswinpc.org), but it is far more than a typical support group. Let’s Win propels interested users toward cutting-edge research, based on its founders’ commitment that no patient with pancreatic cancer should settle on the standard-of-care treatment without seeking potentially better options. The ASCO Post interviewed the co-founder of Let’s Win, Allyson J. Ocean, M.D., Chair of the Scientific Advisory Board, and Cindy Price Gavin, Founding Executive Director, about the impetus and mission of Let’s Win and how it is helping patients. Read the whole story here.
Started With One Patient
Let’s Win originated with a single patient with pancreatic cancer, Anne Glauber, who in 2014 was diagnosed with stage IV disease. Ms. Glauber was ultimately referred to Dr. Ocean, Attending Physician in Gastrointestinal Oncology at New York-Presbyterian Hospital/Weill Medical Center and Associate Professor of Medicine at Weill Cornell Medicine.
“Anne is an executive in the public relations world and was in the prime of her life when she was diagnosed. She and her family were stunned. They knew they had to do something urgently, and they began to search for treatments. As what happens for most patients, she was initially told she didn’t have much time and to ‘get her affairs in order,’” Dr. Ocean said. “Anne said, ‘No, I won’t listen to this. I will seek out more information and more options.’ And, since that time, her entire cancer journey has been a science experiment!”
Ms. Glauber became one of the first patients to have an organoid created in vitro of her tumor from a very small sample (via fine-needle aspirate), the results of a collaboration between Dr. Ocean and researchers at Cold Spring Harbor Laboratories. The researchers were able not only to interrogate her tumor genomically, but also to test thousands of compounds against the tumor and identify treatments that could be most effective.
“Her cancer was exquisitely sensitive to one of the drugs we tested. It’s not even a chemotherapy drug—it’s disulfiram (Antabuse)—but it has anticancer activity against her tumor,” Dr. Ocean said. “We did all the experimentation outside of her body and applied this knowledge directly in the clinic. That’s what we mean by thinking outside the box. We know that standard treatments just don’t work that well.”
Two and a half years after her diagnosis, Ms. Glauber is still on treatment and living well with her disease. “You would never know she’s sick—all this from using standard drugs in a nonstandard way,” Dr. Ocean commented.
Not Settling for Standard of Care
From Ms. Glauber’s initial feelings of helplessness and confusion came the concept that would become Let’s Win: Patients need to be empowered to seek out and to find the very best options for their cancer—not only those recommended in the guidelines but novel approaches that go beyond the standard of care, “which gives patients very limited long-term outcomes,” Dr. Ocean noted.
Together, the oncologist and her patient created a network of supporters, formed the core group, and established its mission. Dr. Ocean and Ms. Glauber partnered with Kerri Kaplan, CEO of the Lustgarten Foundation, and Willa Shalit, entrepreneur and philanthropist, to create Let’s Win. They recruited Ms. Gavin, who had an extensive background in the nonprofit sector. Together these founders created a website that was unavailable to Anne when she started her cancer journey: an online community that shares novel science-driven treatments with the hope that patients with pancreatic cancer can live longer and better.
This is not just about patient “education”; it’s about patient “empowerment,” Ms. Gavin emphasized. “We encourage patients to think outside the box, not just to take what they are hearing on day 1 and run with it—the message that Anne initially heard and refused. Our core is to create an interactive patient and family forum that enables dialogue and informs patients about fast-breaking information on potentially life-saving treatments and trials.”
Role of the Oncologist
The target audience for Let’s Win is both the patient population and the medical community. The patient group includes those seeking information and others who have been treated and are sharing their own encouraging experiences. The provider community includes clinicians seeking the latest information on pancreatic cancer.
Expert physicians on the group’s Scientific Advisory Board connect and offer guidance to both physicians and patients. All patient queries are answered by one of these oncologists and scientists; although they do not give treatment advice, they do try to connect the patient with the best resources, clinical trials, or even “right practitioner” or center of excellence, Dr. Ocean said.
“The problem with pancreatic research so far is that the amazing science being done is not getting to most patients on time,” Dr. Ocean commented. She wants to assure oncologists that the information on the website is always science-driven. The site does report on studies of investigational approaches, but they are vetted.
“We want physicians to understand that they need either to refer to centers that are doing research and clinical trials or at least point patients in the direction to find this information and the practitioners involved…. We want Let’s Win to make it easier for physicians and patients to take the next step and seek out these new options,” she concluded.
Current Challenges, Future Goals
Ms. Gavin would like to introduce the website to every patient with pancreatic cancer. Since May 2016, Let’s Win has registered more than 1,000 subscribers and over 3,000 unique users. “With roughly 50,000 patients diagnosed each year, we are still 49,000 patients away from our goal,” she noted. Scientists as well are finding the site, Dr. Ocean added. “They want their research out there, because this will lead to more attention, more donors, and more trials.”
The founders believe their model is appropriate for all cancer types, but they currently have no plans to develop Let’s Win beyond pancreatic cancer. They have, however, attracted the attention of others who are impressed by their organization, including Vice President Joe Biden, whose Moonshot team met with Let’s Win representatives. They are also interested in leveraging the data they obtain from patients in the hope of identifying treatment/response patterns, which could one day be clinically applicable; they are discussing these possibilities with large data-collection companies.
Other future goals are to create a visible presence at oncology meetings and within the oncology nursing, patient navigator, and social work communities. They also want to grow their online visibility, since one of the first things a newly diagnosed patient with cancer does is to Google their treatment options. “We want to know the best way to deploy our resources. Our greatest logistical challenge is determining the best way to reach as many pancreatic cancer patients as quickly as possible,” Ms. Gavin said