Cancer Advocates at ASCO: Connecting for a Cause
The two oncologists took their seats at the front of the U-shaped row of chairs. Each of those chairs was occupied by a cancer advocate, eager to hear the experts' opinions about some of the major research presented earlier in the day at the American Society of Clinical Oncology (ASCO) annual meeting.
For the doctors, Andrew Seidman of Memorial Sloan-Kettering Cancer Center and Sonali Smith of the University of Chicago, it was a polite peppering.
Shirley Mertz, a breast cancer survivor who serves on an advisory board to the NCI-supported breast cancer Specialized Program of Research Excellence at the University of Chicago, wanted to know about the results from a study in which levels of circulating tumor cells were correlated with the prognosis of patients being treated for prostate cancer. Could such measurements, she asked with some concern, be used in the future to deny patients care?
Musa Mayer, a breast cancer advocate with AdvancedBC.org, wondered whether the women called "high-risk" in an ovarian cancer clinical trial had been a predefined group. The trial results suggested that high-risk patients survived longer with the cancer drug bevacizumab (Avastin). But if the analysis of this specific subgroup had not been planned in advance, she warned, that could very well influence any potential regulatory decisions by the Food and Drug Administration.
One by one, they approached the tall microphone in the middle of the U and delivered question after probing question. Dr. Seidman, who earlier in the day had moderated a press briefing with a room full of often-skeptical journalists, was clearly impressed.
"You ask better questions than reporters from the Wall Street Journal, CNN, and Bloomberg," he quipped.
Connecting with Researchers and Other Advocates
Held at the end of the day on Saturday and Sunday, the scientific review sessions are perhaps the highlight of ASCO's official advocacy program. The sessions offer an opportunity for the advocates in attendance—most at their own expense—to learn even more about the progress being made against cancer, directly from cancer researchers.
Advocates can get a reduced registration fee and scholarships to help cover the cost of attending, explained Jeannine Salamone, a two-time breast cancer survivor who directs ASCO's advocacy relations program. About 350 advocates attended this year's meeting.
Many advocates spend their time at the 5-day meeting attending educational sessions or trawling through the poster abstracts in the cavernous exhibit hall for gems of information about their cancers or their causes. But attending the meeting is not just about education. It's also about action. A quick rundown of Valerie Guild's itinerary makes that clear.
Nearly every day of the meeting her schedule is booked solid. In addition to attending scientific sessions, Guild, who founded AIM at Melanoma 7 years ago, will meet with representatives from pharmaceutical companies to discuss their research efforts and upcoming trials, with academic researchers to follow up on their investigations, and with staff from other advocacy groups about potential or current collaborative efforts.
Guild, whose 25-year-old daughter died only 9 months after being diagnosed with advanced melanoma, rattled off drug names and trial acronyms with ease, clearly comfortable with the complex jargon of the oncology research world. For her, the meeting is a one-stop shopping extravaganza where progress toward many aims can be made in a short period.
"It's the one time of the year where anybody you want to find, you can find," she said. Having attended five previous ASCO annual meetings, Guild says she now understands how to make the most out of one of the largest medical research conferences in the world. The first year or two was a different story.
"It was definitely daunting," she says. "I wasn't familiar with the people in the field, the physicians, the companies. So I spent a lot of time in the advocacy lounge, talking to and getting guidance from other advocates in other disease areas."
For all of the advocates, but perhaps more so for those coming to the meeting for their first or second time, the advocates' lounge is a respite from the meeting's hectic pace. It's an oasis of sorts—a place where advocates can relax, get a snack, and talk with others. It's also the hub of advocate activity at the meeting.
"The advocacy lounge is such a wonderful place to network," said Elda Railey, co-founder of the Research Advocacy Network (RAN). "What happens in those moments in the lounge is invaluable."
Taking Knowledge Back to the Community
Railey and her organization are powerful proponents of advocates attending the ASCO annual meeting, and they put their resources behind it. Every year they send a group of advocates to the meeting on scholarships that cover the costs of registration, travel, food, and lodging. Before the meeting, scholarship recipients undergo training, including scientific Webinars led by top researchers, to help them get the most out of the meeting. In return, the advocates commit to working with an organization in their community to disseminate what they have learned. This year, 15 advocates attended the meeting on RAN scholarships.
"The goal is for the advocates to take the cutting-edge science presented at the meeting and bring it back to the patient constituency in their community," Railey explains.
Taking a break in the advocates' lounge, Susan Leighton of Huntsville, AL, a 13-year survivor of ovarian cancer, explained that she was attending this year's ASCO meeting on a RAN scholarship. As an older man in a white hooded sweatshirt tapped away on an iPad at the table behind her, occasionally dipping his hand into a bag of pretzels, Leighton, who helped establish the Lilies of the Valley Foundation, recounted her lobbying efforts on the local, state, and federal level for ovarian cancer research funding.
She didn't hide her concern—you might say anger—about the prospect of cuts in cancer research funding. She easily rattled off ovarian cancer incidence and mortality figures, and recounted data from a poster presentation she attended earlier about a spouse's powerful influence on a patient's participation in clinical trials.
"I'm obviously passionate about what I'm doing," she said.
Down in the Hall
The advocates' presence was also felt in the exhibit hall. Given prime real estate by ASCO near the hall's front entrance, advocates from 20 organizations staffed individual stalls in a large oval exhibit, as well as a nearby row of booths from 30 more organizations.
The organizations run the gamut, from survivorship-focused groups to those advocating for common or rare cancers. An example of a rare-cancer advocacy group is the 4-year-old Cholangiocarcinoma Foundation, whose booth was staffed by the organization's director of advocacy, Marion Schwartz.
Speaking over the intense buzz of the crowds and videos playing on the too-many-to-count plasma screens in the hall, Schwartz recounted the challenge of advocating for such a rare cancer, with an incidence of only 2 or 3 cases per 100,000 people. She couldn't say enough, however, about the unique opportunity the exhibit space provided for talking to physicians at the meeting and letting them know about the resources available through her foundation.
"When we first started exhibiting, most of the people who stopped by the booth didn't even know we existed," she said. After a few years, that has changed. "I think physicians really understand that we can help their patients," she said.
Achieving Their Goals
The decision to come to the ASCO meeting depends on the goals of the individual advocate or advocacy organization, said Nancy Roach, who has been involved in cancer advocacy since the mid-1990s and founded Fight Colorectal Cancer in 2005.
With her elbows perched on her knees as she sat in one of the large cushioned chairs in the advocates' lounge, Roach pointed to two of her colleagues, Kate Murphy and Pam McAllister, who come to every ASCO meeting to soak up the science. Murphy blogs about new research findings on the organization's Web site.
For organizations and individuals whose chief aim is to support new research, attending the meeting is important "because you really get exposed to the science," Roach said. "And more importantly, you can get face time with the scientists, which allows you to better evaluate the science and contribute more effectively."
But for many of the advocates, coming to the ASCO meeting is about providing immediate help to those who need it. "You can come here and learn the science," Leighton said. "And then you can really help the patients and survivors who want to understand it."
Having that information, she continued, may "help guide them in making educated treatment decisions with their physicians."