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Alan Balch and Gwen Darien discuss NPAF’s work to assure access to genomic medicine
Genomic medicine is transforming our understanding of many diseases as well as revolutionizing how we treat those diseases. As we decipher the extraordinarily complex ways in which your body’s unique genetic profile contributes to your health and to a wide variety of illnesses and conditions, we can begin to tailor our approaches to the prevention, diagnosis and treatment of those diseases.
NPAF/PAF are currently working with the NHGRI on a project with the PAF case managers to identify the barriers that PAF callers face in gaining access to genomic medicine.
At the Spring 2019 National Patient Advocate Foundation Policy Consortium, speakers brought a deep, candid and sometimes provocative perspective to both the positives and possible negative consequences of the genomics revolution. Over 80 people attended the event held May 15 at the Newseum.
The Case Manager Experience: Evaluating Underserved Populations Access to Genomic Medicine and Clinical Trials
- Vence Bonham, JD Senior Advisor to the Director on Genomics and Health Disparities National Human Genome Research Institute, National Institutes of Health (NGHRI)
Defining Underserved Communities in Genomics and Genetic Testing
Watch the Full Session: The Case Manager Experience: Evaluating Underserved Populations Access to Genomic Medicine and Clinical Trials
“Today, we are beginning to realize the importance of the human genome sequencing project to health and society. Since 2002, there has been a dramatic reduction in the cost of genome sequencing and a great increase in the number of people who have had their genome sequenced. But the question is: where do we go from here?”
Personal and Cultural Barriers to Genomic Medicine
- Carla Easter, PhD, Facilitator, Chief, Education and Community Involvement, NGHRI
- Kellan Baker, Centennial scholar, Johns Hopkins Bloomberg School of Health
- Candace Henley, Founder and Chief Surviving Officer, The Blue Hat Foundation, Inc.
What Does Our Genome Say About Us?
Talking About Genetic Testing
Watch the Full Session: Personal and Cultural Barriers to Genomic Medicine
What Do the Patients Say? Putting Narratives at the Heart of Communications
- Gwen Darien, Facilitator
- Rachel Grob, MA, PhD, Director of National Initiatives, Center for Patient Partnerships
- Dhruv Khullar, MD, MPP, Assistant Professor, Weill Cornell Medicine, Department of Healthcare Policy and Research
The Impact of Genetic Testing on Families
Storytelling is at the Heart
Watch the Full Session: What Do the Patients Say? Putting Narratives at the Heart of Communications
Expanding Access and Reducing Barriers to Cancer Susceptibility Testing
- Marc Schwartz, PhD, Co-director, Jess and Mildred Fisher Center for Hereditary Cancer and Clinical Genomics Research
Barriers to Genetic Testing
Watch the Full Session: Expanding Access and Reducing Barriers to Cancer Susceptibility Testing
On the Front Lines: PAF Case Managers Share Their Perspective
- Christine Wilson, Facilitator, Vice President Advocacy Communications, National Patient Advocate Foundation
- Wendy Kurtz, Case Manager III, Patient Advocate Foundation
- Tammy Neice, Case Manager III, Patient Advocate Foundation
- Beth Scott, Case Manager III, Patient Advocate Foundation
ADVICE FROM CASE MANAGERS
- Educate yourself about genomic medicine and its vast potential. Many people, even professionals, do not really understand what genomics are or how deeply they are affecting medicine and other spheres of life
- Understand the many barriers that can stand between people and accessing genetic testing and genomic medicine. These include often deeply rooted issues related to identify, culture, distrust of the medical profession or the potential negative uses of genomic information as well as economic and geographic obstacles.
- Learn what resources are available in your community for people who can benefit from genetic testing and genomic medicine.
Watch the Full Session: On the Front Lines: PAF Case Managers Share Their Perspective
Learn more about PAF’s Personalized Care Line at patientadvocate.org
Making the Connections Closing Remarks by Gwen Darien
Additional Resources
Patient Advocate Foundation: www.patientadvocate.org
National Human Genome Research Foundation: www.genome.gov
The Health Experience Research Network: www.healthexperiencesusa.org