Newswise — PLYMOUTH MEETING, PA [December 7, 2021] — Today, the National Comprehensive Cancer Network® (NCCN®) hosted its annual Patient Advocacy Summit. The 2021 online program included a recorded presentation from Congresswoman Debbie Wasserman Schultz (D-FL)—one of the bipartisan sponsors of the Reducing Hereditary Cancer Act of 2021 (HR 4110). The summit highlighted diverse perspectives for expanding precision medicine in order to improve cancer outcomes; including discussions on federal and local policies to broaden genetic/genomic testing access.

“Our understanding of precision medicine and how to equitably use biomarker testing is changing rapidly day-to-day,” said panelist Crystal S. Denlinger, MD, FACP, Senior Vice President, Chief Scientific Officer, NCCN. “Given the ever-changing landscape of biomarkers, it can be hard to remain current on indications, terminology, appropriate testing technology, and coverage. The NCCN Biomarkers Compendium® is one resource to help us standardize access to expert-recommended testing and targeted treatment, but more work and awareness is needed to harness this evolving science in the most beneficial ways.”

The group of speakers also included patients, advocates, additional doctors, and payers. They stressed the importance of performing testing for biomarkers that can inform and improve patient outcomes, but acknowledged the various challenges faced around how to make sure that happens.

“Genetic and/or tumor biomarker testing are integral components of precision medicine, informing cancer treatment, screening, and risk-reducing interventions,” said Lisa Schlager, Vice President, Public Policy, Facing Our Risk of Cancer Empowered (FORCE). “Access to guideline-recommended testing can lead to better quality of life and outcomes for patients. We must institute public policies that facilitate equal, affordable access to these tests regardless of one’s age, health insurance, or socioeconomic status; this will ultimately reduce health disparities and save lives.”

“Access to cancer diagnostics always has a technical limitation—is the testing available to anyone—but also a social limitation—is the testing available to everyone,” said Dan Milner, MD, MSc, MBA, American Society of Clinical Pathology. “The challenge of biomarkers for patients today is not availability but rather reliable systemic access and consistent workflow. We can solve this through coordination, collaboration, and placing the patient at the center of the process.”

Speakers also acknowledged a significant need for education of multiple stakeholders around biomarkers so physicians can make the best possible recommendations and patients are better able to advocate for themselves.

“The lack of education and awareness among patients is one of biggest challenges for precision-based medicine,” said Wenora Johnson, Patient Advocate. “One way to empower them is to ensure that patients understand their individual genetic information, with the help of genetic counselors. This allows patients and caregivers to make informed decisions regarding their healthcare and any related problems. Universally-accepted policies for sharing treatment and outcomes data will lead to better patient outcomes.”

Mary Lou Smith, JD, MBA, Research Advocacy Network, agreed: “Genomic testing can provide valuable information for shared decision-making; but both patients and their treating physicians often have a hard time understanding the reports showing the results. We need clearer, more understandable ways of reporting the results from genomic testing in order to determine the most effective treatment option for patients.”

Another recurring theme from the summit was the acknowledgement that the role of precision medicine in cancer care will continue to grow. Speakers were concerned that this progress could widen disparities in outcomes by leaving out too many patients.

“Biomarker testing is currently a fundamental step in the evaluation of patients with most cancers, in order to determine the best therapies available as well as clinical trial eligibility,” said Debora S. Bruno, MD, MS, Case Comprehensive Cancer Center, Member of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Non-Small Cell Lung Cancer. “However, recent studies have demonstrated that many patients in the U.S. with advanced/metastatic cancers are not comprehensively tested and that racial disparities exist when it comes to this basic assessment. As science evolves and cancer treatments become more effective, we are creating disparities that need urgent attention so all segments of society have access to these innovative therapies.”

“In the last decade, there has been an explosion of new therapies in oncology which offer the promise of better outcomes,” concluded Bhuvana Sagar, MD, MBA, Evernorth. “It is critical that people diagnosed with cancer are tested to determine if they can benefit from these new treatments. By improving access to testing and using the test results to guide therapies, we can improve long-term outcomes for cancer patients.”

Additional speakers included:

  • State Representative Mary E. Flowers (D-IL), House Deputy Majority Leader, Illinois General Assembly
  • Hilary Gee Goeckner, MSW, American Cancer Society Cancer Action Network
  • Louis Jacques, MD, ADVI Health, LLC
  • Terrell Johnson, MPA, NCCN
  • Kristen Santiago, MS, LUNGevity Foundation
  • James Warburton, Novartis Oncology

The program also featured resource presentations from:

  • Monica Bryant, JD, Triage Cancer
    • Options When the Insurance Company Says No
  • Peggy Cottrell, MS, CGC, Sharsheret
    • Genetics for Life Program
  • Nikki Martin, MA, LUNGevity
    • No One Missed
  • Cassadie Moravek, Pancreatic Cancer Action Network (PanCAN)
    • Know Your Tumor Program

More information on these resources to help improve access to precision medicine for the cancer community can be found at Join the conversation with the hashtag #NCCNPolicy.

Register now! The NCCN 2022 Annual Conference will take place as a “hybrid” event, with live sessions in Orlando, FL, and a virtual platform, March 31 - April 1. Pre-conference programs begin March 30. Visit for more information and to register.

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About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit for more information and follow NCCN on Facebook @NCCNorg, Instagram @NCCNorg, and Twitter @NCCN.