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AACR Annual Meeting 2016: Survivors Bring Broader Perspective

Patient advocates share their knowledge during scientific meeting. By Marci A. Landsmann

The American Association for Cancer Research (AACR) Annual Meeting 2016 wrapped up in New Orleans April 20 with a crescendo as Vice President Joe Biden addressed thousands of cancer researchers, asking the scientists to collaborate and break down walls in research.


​Scientist↔Survivor Program scientific mentor and gastrointestinal oncologist Emil Lou and advocate AnneMarie Ciccarella participate in a Twitter chat during the American Association for Cancer Research Annual Meeting 2016.​​ | Photo by Kevin McLaughlin

 

In the days leading up to the vice president’s address, less prominent supporters of cancer research—34 cancer survivors and advocates participating in the AACR Scientist↔Survivor Program (SSP)—took part in panel discussions, attended scientific sessions and presented posters describing their advocacy efforts during the Annual Meeting, held April 16-20.

Cancer survivors offered personal accounts of their struggles and perspectives—amid a backdrop of highly sophisticated scientific discussions of topics such as companion diagnostic assays, immunotherapy drugs and genetic testing.

Patty Spears is a 17-year stage II HER2-positive breast cancer survivor and an advocate in this year’s SSP. She lives in Raleigh, North Carolina and participated in the SSP program in 2007.

“Back then, AACR had very basic research, and you hardly ran into anything clinical,” Spears recalls, noting that the organization has broadened its scope from basic science to translational research that can more immediately benefit cancer patients.

“It was still great even then because you really got to meet the scientists and you could ask the scientist questions,” she said. “You got to meet all these other advocates from all these areas.” Spears is still in touch with advocates she met at her first SSP.
 
More News from AACR Annual Meeting 2016

Can We Simplify Diagnostic Testing?
Researchers are working to harmonize the multiple diagnostic tests used to predict which non–small cell lung cancer patients are likely to do well on a relatively new class of immunotherapy drugs.

Biden Calls for Collaboration
Vice president cites immunotherapy, big data and team science as innovative ways to speed progress against cancer.

Research, Prevention and the Affordable Care Act
Best known for provisions mandating health insurance coverage for individuals, the Affordable Care Act also contains measures to emphasize research, quality care and preventive screening.

Test Identifies Which Patients Can Skip Chemotherapy
A genetic test identifies patients with early-stage breast cancer who can safely forgo chemotherapy after surgery.

Maximizing Cancer Cures
Everyone wants more effective cancer care and prevention. A lively panel discussed ways to bring these benefits to patients.

Immunotherapy Can Have Long-Lasting Effects
More than a third of melanoma patients who enrolled in an early trial of the immunotherapy drug nivolumab (Opdivo) were alive five years later.

Cancer in the Crescent City
The American Association for Cancer Research hosts a community event to talk about cancer in Louisiana.

Going on a Deep Dive
Cancer patient advocates head to New Orleans to sharpen their understanding of science.
Jane Perlmutter, a breast cancer survivor and independent patient advocate who owns a consulting firm in Ann Arbor, Michigan, offered her own perspectives during the April 16 opening dinner for SSP. She explained the important role that survivors play in advancing research and provided tips for being an effective advocate—including knowing your limitations and having your say without necessarily always getting your way.
 
“Patients don’t have the luxury of patience,” she said, and noted that most scientists care deeply about patients, despite often working on their own projects in labs, far from the bedside. “You don’t get into cancer research if you aren’t interested in changing the lives of patients.”
 
During a special community education event held April 16, local advocates joined researchers to talk about the latest developments in cancer research and medicine. The free event, organized by the AACR, was held at the Louisiana Cancer Research Center in New Orleans.

Kim Sport, a three-time cancer survivor from New Orleans, explained efforts she has made to help educate legislators about barriers to women seeking breast reconstruction after a mastectomy.  The Louisiana House of Representatives is set to vote in June on a bill that would overturn a current law requiring a person's mastectomy and breast reconstruction to be covered by the same health insurance provider.  In many cases, Sport said, a patient waits to get reconstruction—for personal or medical reasons—and during that time may change insurance plans. The legislation also includes, as part of its definition of breast reconstruction, liposuction, which allows fat from other parts of the body to be used for breast reconstruction, tattooing and surgical adjustments to the remaining healthy breast in cases of a single mastectomy.

“When a woman is battling breast cancer and everything that comes with it, including potential treatment and disruption in employment. … When you are fighting for your life, you do not need to fight your insurance company,” Sport said.

Another speaker at the community education event, Mark Mitchell, who has been diagnosed and treated for metastatic melanoma on three separate occasions beginning in 1985, currently shows no evidence of disease. He stressed the importance of seeking out clinical trials and exploring all treatment options. Mitchell underwent multiple surgeries and experimental treatments, but kept seeking facilities that would treat him—despite being advised on many occassions to simply get his affairs in order.

The AACR Annual Meeting also included policy symposia, including a packed-room discussion of the Affordable Care Act (ACA), often called “Obamacare,” and a panel discussion on how to get the latest cancer treatments to patients more quickly. During the session on the ACA, ovarian cancer survivor and patient advocate Mary Jackson Scroggins talked about perceptions and misconceptions of the ACA. Jane Singleterry of the American Cancer Society Cancer Action Network discussed common hurdles people with cancer encounter as they navigate the new health insurance marketplaces created through the ACA. 

Towards the end of the session, AnneMarie Ciccarella, an advocate who tweets using the handle @chemobrainfog, stood up to discuss her personal experiences in choosing health insurance. Weeks after she chose a plan specifically because it included a doctor for her daughter, that doctor was dropped from the plan.
 
“If we have a set period of time to pick a plan,” she said, “can’t they also have a set period of time where they can’t make changes?”

“I’m speechless, to be honest,” responded panelist and cancer researcher William S. Dalton to Ciccarella’s story. Dalton heads M2Gen, a Moffitt Cancer Center biotechnology company, and is founding director of Moffitt’s Personalized Medicine Institute based in Tampa, Florida. “That is a bait-and-switch scenario and I don’t have an answer.”

The scientific meeting gave SSP advocates a lot of research to digest, but policy sessions and survivor perspectives strengthened the research's impact, advocates noted. “I really liked the addition of many policy sessions,” said Spears. “SSP is a program like no other. … Every advocate should attend at least once.”


Marci A. Landsmann is the editor of Cancer Today.

04/27/2016
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