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NPAF Spring 2019 Policy Consortium

Barriers and Solutions to Accessing Genomic Medicine: Realizing the Benefits of Genomic Medicine for All

Barriers and Solutions to Accessing Genomic Medicine: Realizing the Benefits of Genomic Medicine for All

May 15, 2019

8:30 am – 2:30 pm

The Newseum, Washington DC

The agenda and speaker list are below. 

Discussion topics included:

  • Barriers to and adequate delivery of genomic medicine to underserved populations;
  • Patient experiences with genomic medicine;
  • Genomic medicine as an opportunity to reduce disparities and improve population health;
  • Closing the knowledge gap about genomic medicine for patients and health care providers;
  • Dealing with inconsistent and complex insurance policy coverage of screening and treatment.

We considered innovative ways of raising awareness of the potential for genomic medicine to improve individual and population health and alleviate barriers to access.

We presented the preliminary results of a study for which we partnered with Vence Bonham, JD, Senior Advisor to the Director on Genomics and Health Disparities at NHGRI, on barriers and disparities to access to genomic medicine.

At this Spring’s Consortium, we brought the patient and provider voices to the table on this important topic and explore the challenges that patients, their caregivers and health providers face in assuring equitable access to genomic medicine.

MEET OUR SPEAKERS: Click on photos to see full bios


Registration and Continental Breakfast
8:30 am

Welcome and Introduction
9:00 am

Alan Balch, Chief Executive Officer
Patient Advocate Foundation & National Patient Advocate Foundation

Gwen Darien, Executive Vice President of Patient Advocacy and Engagement
National Patient Advocate Foundation & Patient Advocate Foundation


The Case Manager Experience: Evaluating Underserved Populations’ Access to Genomic Medicine and Clinical Trials
9:15 am

Vence Bonham, JD, Senior Advisor to the Director on Genomics and Health Disparities
National Human Genome Research Institute


Personal and Cultural Barriers to Genomic Medicine
9:45 am

Kellan Baker, Centennial Scholar
Johns Hopkins Bloomberg School of Public Health, Department of Health Policy and Management

Candace Henley, Founder and Chief Surviving Officer
The Blue Hat Foundation, Inc


Carla Easter, PhD, Chief, Education and Community Involvement Branch
National Human Genome Research Institute, National Institutes of Health

10:45 am

What do the Patients Say? Putting Narratives at the Heart of Communications
11:00 am

Rachel Grob, MA, PhD, Director of National Initiatives
Center for Patient Partnerships
Senior Scientist
University of Wisconsin, School of Medicine and Public Health’s Department of Family Medicine and Community Health

Dhruv Khullar, MD, MPP, Assistant Professor
Weil Cornell Medicine, Department of Healthcare Policy and Research
New York-Presbyterian Hospital


Gwen Darien

12:00 pm

Expanding Access and Reducing Barriers to Cancer Susceptibility Testing
12:15 pm

Marc D. Schwartz, PhD, Professor of Oncology
Georgetown University
Associate Director
Lombardi Comprehensive Cancer Center
Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research

On the Front Lines: PAF Case Managers Share Their Perspectives
1:00 pm

PAF Case Manager Panelists
Wendy Kurtz
Beth Scott
Tammy Neice


Chris Wilson, Vice President of Advocacy Communications and Marketing
National Patient Advocate Foundation & Patient Advocate Foundation

Summary & Closing
2:15 pm

Gwen Darien