263072 Increasing access for genetic services for the Indiana Plain population

Monday, October 29, 2012 : 9:10 AM - 9:30 AM

Rebecca Evans, LCGC , Indiana Hemophilia & Thrombosis Center, Indianapolis, IN
Chris Roberson, JD, MPH , Indiana Hemophilia & Thrombosis Center, Indianapolis, IN
Dennis Lehman , The Community Health Clinic, Topeka, IN
Glen Hershberger , The Community Health Clinic, Topeka, IN
Amy Shapiro, MD , Indiana Hemophilia & Thrombosis Center, Indianapolis, IN
The Indiana Plain population, including the Amish and Mennonite communities, has a high rate of rare, genetic diseases due to a founder effect and endogamous practices. A paucity of locally-available, specialized genetic services has led to highly preventable morbidity and mortality, especially among children. Plain community members must travel long distances to seek proper services for affected individuals. However, community proscriptions against both health insurance and operating mechanized vehicles has led to prohibitive out-of-pocket costs, causing many community members to not seek proper care for genetic disorders. A lack of genetic education and counseling and a preference for homeopathic remedies has resulted in vulnerability of the community to exploitation by individuals claiming to have a naturopathic “cure” for these disorders.

Due to these barriers, the northern Indiana Amish community along with the Indiana Hemophilia & Thrombosis Center have partnered together to create The Community Health Clinic, Inc. (CHC). This non-profit, community-based clinic aims to reduce these obstacles by providing locally-available, specialized genetic healthcare services, genetics education, access to contribute to genetic and genomic research through a local, community-governed bioresource repository, and a reduction of healthcare costs through bill negotiation services and an in-house Public Health Service pharmacy. The CHC has begun to assess the rate of genetic disorders in the Indiana Plain communities. Results from this initial assessment identify a high prevalence of potentially undiagnosed genetic disorders, underscoring the necessity for genetic services, local expertise in medical genetics, diagnostic testing, research, and education for the community.

Learning Areas:
Assessment of individual and community needs for health education
Diversity and culture
Implementation of health education strategies, interventions and programs

Learning Objectives:
1. Identify three healthcare barriers related to genetic services facing Plain communities. 2. Discuss three solutions to increase access to genetic services for the Plain communities.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Was a major contributor to the drafting of the abstract and I am a co-lead on the Community Health Clinic project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.