NPAF Spring 2019 Policy Consortium

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

“This Policy Consortium is focused on closing the gap between discovery and the people who need to access these new ways of diagnosing and treating diseases.”

Gwen Darien, Executive Vice President, Patient Advocacy and Engagement

For Full Agenda and Bios Click Here

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.

“Genomics are a crucial part of the person-centered care agenda.”

“Nothing is less efficient, less cost-effective than giving the wrong treatment to the wrong person at the wrong time, and genomics has the potential to provide precise, individualized treatment to every patient."

Alan Balch, Chief Executive Officer, NPAF

The Case Manager Experience: Evaluating Underserved Populations Access to Genomic Medicine and Clinical Trials

"When it comes to genomics and personalized medicine, we have to expand our definition of underserved from the traditional definition."

“There are insurance barriers, cultural barriers, geographic barriers that affect communities not generally perceived as underserved. We have to worry about the people who aren’t even talking to the case managers at PAF.”

Vence Bonham

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

"Who decides and who defines what you are?"

"The LGBTQ community worries that genomics could quickly slide into efforts by some groups to identify a “gay” gene or a “trans” gene—and use it to erase us. We can use these genomic tools in a powerful way without losing sight of the important issues. What does our genome say about us? How do we own this information? Who benefits from it?

Kellan Baker

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?

"I was diagnosed with colon cancer at age 35, but no one offered me genetic testing."

"I found out this is common. People in minority communities are often not told about genetic testing, especially if they do not have private insurance. When I did finally learn I had Lynch syndrome, no one explained what that meant, to me or to my five daughters.”

Candace Henley

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

“We need to move from anecdote to science, from voice to voices."

"We are using storytelling and qualitative methodology to develop an online resource which will represent the intersection of genetic syndromes and family history.”

Rachel Grob

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

“Data are crucial, but behind the data are the stories."

"In medicine, we tend to avoid the anecdote or discount it. But there is a difference between using an anecdote to justify a course of action and one to illustrate or explain something that is rooted in that data.”

Dhruv Khullar

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

“Does knowing about genetic risk influence treatment decision making?"

"Everyone with ovarian cancer should have testing, but only about 30% overall do, and that doesn’t take into account the disparities with minority women. As we learn more about the value of these tests, why are the rates either not going up, or decreasing?"

Marc Schwartz

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

“A lot of people don’t know there are genetic or genomic tests."

" They don’t know how to ask questions about these tests or about participating in clinical trials, so our role is often one of education, of helping people understand that they can ask their doctors questions and what those questions might be for each person. A lot of what we do is making sure that people know those options are there."

Wendy Kurtz

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