Karen Greendale, Office of Public Health Genomics, Centers For Disease Control and Prevention
A Working Meeting and an Action Plan
to Save Lives Now
Nearly 2 million Americans are affected by one of three genetic conditions with a strong risk of early morbidity and mortality: BRCA 1/2 and hereditary breast and ovarian cancer; Lynch syndrome and colorectal , endometrial and ovarian cancer; and familial hypercholesterolemia and early cardiovascular events. At present these conditions are poorly identified by the healthcare system but evidence based recommendations are available to prevent disease and improve health.
On September 7, 2012, eighty experts and stakeholders representing federal, state and local public health agencies, clinicians, key advocates and community leaders came together at CDC’s Roybal headquarters in Atlanta to develop a plan to use evidence based “Tier I” interventions to reduce morbidity and mortality from these three conditions. The event was organized by the CDC Office of Public Health Genomics (OPHG) with help from the University of Michigan Center for Public Health and Community Genomics, Genetic Alliance, and a multi-disciplinary planning committee. The full meeting report is published on the Genomics Forum website and is available for download at http://genomicsforum.org/editoruploads/ActionstoSaveLivesNowReport.pdf
The day’s work centered around: reviewing the evidence of effectiveness in implementing available interventions; identifying opportunities, strategies, and models; and identifying the means to achieve success for these new and cost effective public health programs.
Using the “Health Impact Pyramid” as a guide, participants discussed various steps which could be taken, given challenges and opportunities for improvement. Particular emphasis shpuld be given to actions lower on the pyramid, such as policy changes (for example: coverage/care for Tier 1 applications). Interventions at this level have more population impact because they change the context to make people’s default decisions healthy.
Said Deb Duquette MS, CGC of the Michigan Department of Community Health, one of several state representatives present at the event,”Clearly work to inform policy change is critical for Tier 1 programs and has been a major part of our success in Michigan. This was particularly true where healthcare coverage for the USPSTF BRCA 1/2 recommendation was expanded to seven million people in our state. The public health impact for the dollar is large in the policy area and this model can be applied in many other states.”
- Incorporate and build on the previous success of state public health genomics programs, in particular by employing new policy implementation approaches;
- Develop and use standardized protocols as a guide for Tier 1 program activities;
- Develop and distribute standardized communication materials for Tier 1 applications including educational materials for patients, providers, and public health practitioners;
- Develop and use standardized surveillance indicators, such as those for HP2020 to measure success and integrate synergistically with provider/payer systems;
- Collaborate and share lessons learned with other states and partners such as what is being done with the Lynch Syndrome Screening Network (LSSN);
- Conduct cascade screening (identifying relatives at risk from case patients) pilot projects and consider the scalability and cost effectiveness of broader programs that use it ;
- Build strong partnerships toward mutual goals which include healthcare payers, healthcare providers, advocacy groups, and other key stakeholders;
- Stay abreast of changes in the field as new applications with sufficient evidence for implementation become available.
To follow up on the event’s success, a “Tier 1 Toolkit” is now being developed which will provide the tools and educational resource identified during the event as keys to progress. This resource will be available on CDC’s website before the end of this year, and will help states to overcome the unique challenges in this arena, establish key healthcare and payer partnerships, and take action to save lives now using Tier 1 public health genomics applications.
The event’s Patient and Community Perspectives Panel included key leaders (from left to right): Katherine Wilemon, Founder and President, the FH (Familial Hypercholesterolemia) Foundation; Sue Friedman, DVM – Executive Director, FORCE (Facing Our Risk of Cancer Empowered); Cristi Radford, MS, CGC – Lynch Syndrome International / Moffitt Cancer Center; Rochelle Shoretz, JD – Executive Director, Sharsheret: Your Jewish Community Facing Breast Cancer; Sabrina Ford, PhD – Department of Obstetrics, Gynecology & Reproductive Biology, Michigan State University; and Winona Hollins Hauge, MSW, LCSW – Fred Hutchinson Cancer Center, Governor’s Interagency Council for Health Equity (Washington State), National Community Committee Genomics SPIG/UW HPRC.
New Strategies in Public Health Genomics: Actions to Save Lives Now
September 7, 2012
|Planning Committee:||Sylvia Au – Hawaii State Department of HealthScott Bowen – Centers for Disease Control & PreventionSummer Cox – Oregon Health AuthorityRebecca Giles – Utah Department of Health Asthma ProgramKaren Greendale – Centers for Disease Control & Prevention
Katherine Johansen Taber – The American Medical Association
Jenna McLosky – Michigan Department of Community Health
James O’Leary – Genetic Alliance
Patricia Page – Emory University
Joan Scott – National Coalition for Health Professional Education in Genetics
Amy Zlot – Oregon Health Authority
|Speakers:||Lynch Syndrome speaker 1:
Heather Hampel – The Ohio State UniversityLynch Syndrome speaker 2:
Debra Duquette – Michigan Department of Community HealthHereditary Breast and Ovarian Cancer speaker 1:
Mark Robson – Memorial Sloan-Kettering Cancer CenterHereditary Breast and Ovarian Cancer speaker 2:
Amber Roche – Public Health Seattle & King CountyFamilial Hypercholesterolemia speaker 1:
James Underberg – NYU School of Medicine and NYU Center for Prevention of Cardiovascular Disease
Familial Hypercholesterolemia speaker 2: