Patient Advocacy Plays Prominent Role at AACI Annual Meeting

Pictured above, clockwise from top left: Dr. Michael B. Kastan; Devon Still; from left to right, Dr. Karen E. Knudsen, Dr. Cornelia Ulrich, and Patricia Wiley.
Inspiring patient advocates delivered messages of hope and perseverance to an influential audience of cancer center leaders at the 2019 AACI/CCAF Annual Meeting, in Washington, DC. 

Keynote speaker Devon Still, a former professional football player, set the tone for the meeting with an impassioned telling of his 9-year-old daughter’s difficult but successful cancer treatment. 

Still reminded the audience that hearing that you have cancer, or that your child has cancer, is not ordinary, and the delivery of such news to a patient or their family is life-changing. Still learned this firsthand when his daughter, Leah, was diagnosed with Stage IV neuroblastoma in 2014. After meeting other families affected by cancer during Leah's treatment, Still discovered that the impact of a child's cancer diagnosis is magnified in single-parent households. According to Still, these families experience greater financial challenges, and often find it difficult to be with a family member who has cancer during chemotherapy treatment or other hospital visits. Through the Still Strong Foundation, Still has raised more than $2 million to provide assistance to families whose children are battling cancer.

Alan Balch, PhD, chief executive director of the Patient Advocate Foundation, also addressed cancer’s financial burden on families as a panelist at the 7th Annual AACI Physician Clinical Leadership meeting. PAF offers services such as case management, financial aid, and a Co-Pay Relief Program that helps insured cancer patients cover the costs of prescriptions and treatments.

Patricia Wiley, founder of On the Wings of Angels, a cancer awareness foundation honoring her daughter who successfully fought pediatric cancer, was a panelist for AACI’s Conflict of Interest Task Force Update. She urged greater transparency of the links between cancer research and the pharmaceutical industry, and more information about the benefits of those ties, as ways to build trust with patients.

Sydney Joorabchi was first diagnosed with acute lymphoblastic leukemia at age 13. Following courses of chemotherapy she went into remission, but at age 19 the cancer returned. She sought treatment at The University of Kansas Cancer Center where doctors administered CAR T therapy. Thirty days after treatment, she was in full remission. 

Joorabchi told her story as the keynote speaker for a three-hour CAR T symposium featuring two panel discussions. Led by Joseph McGuirk, DO, chair of AACI’s CAR T Initiative Steering Committee, the symposium delved into the value and cost-effectiveness of CAR T-cell therapy, and how to establish and administer a CAR T program.

The annual meeting, October 20 - 22, convened more than 450 AACI cancer center directors and executive-level administrators with industry and government health agencies to develop solutions to common challenges and share best practices.

During an overview of AACI’s work in 2019, Executive Director Jennifer W. Pegher acknowledged program and activity support from AbbVie, Forte – Now an Advarra Company, Amgen, Astellas, Bristol-Myers Squibb, Complion, Florence, Foundation Medicine, Genentech, Genomic Health, Gilead, Huron Consulting Group, Janssen Research & Development, Kite, Lilly, Merck, Novartis, Pfizer, Takeda Oncology, and Varian Medical Systems.

The AACI Annual Meeting Program Committee, chaired by Michael B. Kastan, MD, PhD, director of the Duke Cancer Institute, assembled an outstanding array of speakers. Panel discussion topics included artificial intelligence and Big Data, cancer center workforce training, broadening clinical trial eligibility criteria, alternative revenue streams and payment models, tumor metastasis, and community outreach and engagement.

In the NCI Director’s Report, a regular component of the annual meeting, Acting Director Douglas R. Lowy, MD, announced an expansion of the Cancer Center Support Grant (CCSG) award period from five to seven years for qualifying centers. Following Dr. Lowy, Henry P. Ciolino, PhD, director of NCI’s Office of Cancer Centers, provided details of the CCSG extension, including the requirement that a center have stable leadership and at least 15 years of CCSG funding.

The meeting also featured the unveiling of AACI’s Public Policy Resource Library, presented by AACI President Roy Jensen, MD, director of The University of Kansas Cancer Center. The library is Dr. Jensen’s presidential initiative.

Immediately following the annual meeting, a media team from The University of Kansas Cancer Center recorded a Bench to Bedside video hosted by Dr. Jensen with guest Karen E. Knudsen, MBA, PhD, AACI vice president/president-elect and enterprise director, Sidney Kimmel Cancer Center at Jefferson Health. They discussed cancer disparities, with Dr. Knudsen pointing out that these disparities—differences in cancer incidence, outcomes, and screening rates—are affected by a range of factors, including socioeconomic status, ethnic and racial differences, age, physical abilities, place of residence (e.g., rural or urban), or sexual and gender identification. 

"AACI can be the place where we can better understand cancer disparities that we’re facing in our own cancer centers … and determine how we can best work together," Dr. Knudsen said. "What works in Philadelphia might work in Kansas."

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