topeka indiana lagrange/ elkhart counties indiana plain...
TRANSCRIPT
Need Recognition
Recognition of need local community members and Indiana Hemophilia and Thrombosis Center
Initial Survey of Elkhart and LaGrange Counties
Increased incidence of Genetic conditions
Specifically IEM
Increased Mortality within that group
Especially in the first 3 years of life
Barriers to Care
Travel
Access to motorized travel
Location of specialty providers
Cost
High cost of Genetic care and testing
Faith based objection to conventional insurance
Education
Need for community education
Need for provider resources and education
Funding Model
1/3 – Grants and Private Donors State Grants (NBS, MCHS, Title V) IHTC
1/3– Local Fund Raising Dutch Dinner Benefit Auction
1/3 - Patient Revenue Significantly reduced rates 50% self pay discount PCGM administrative fees
Objectives of the Das Kind Program Provide immediate and culturally appropriate communication to
ensure prompt completion of confirmatory testing and initiation of preventative interventions
Offer community-based, expert genetics care to all individuals with a diagnosed or suspected IEM or other genetic disease
Provide education to the patients/families, community members, and healthcare providers regarding genetic disease and protocols to ensure optimal outcomes, and
Provide education to local health care providers, including midwives, about IEMs and the importance of correct NBS techniques and follow-up care
Small but important pieces
Bottles
Temporary cell phones
Education for families and local healthcare providers
Community Contact Couples
CHC Genetics Survey
The American Academy of Pediatrics describes the medical home as
“…..a model of delivering care that is accessible, continuous, comprehensive, family-centered, coordinated,
compassionate, and culturally effective.”
Having a medical home means: Care is in your community
Cultural background is recognized, valued, and respected
Staff are sensitive to stereotypes and cultural assumptions
Multi-language materials and services are available
How would this look for the Amish? A clinic within a buggy’s ride of the majority of
the community Access to staff who speak Dutch Culturally acceptable genetic counseling:
• Providing information on risk and inheritance, acknowledging the unacceptability of pregnancy termination
Respect for and privacy regarding a family’s decision regarding acceptance of insurance
Healthcare Sharing Ministry
Federally designated exception to ACA
Free will plan already existing
Distributes healthcare costs throughout community
Negotiates pricing for plain community members
Service Locations
Community Health Clinic – Topeka
Outreach Clinic – Fort Wayne
Hospital Affiliations – Parkview Regional Medical, Parkview Lagrange, IU Goshen, South Bend Memorial
Future Outreach Clinics – Adams County
Patient Population
~ 150 active patients
Indiana, Illinois, Kentucky, Michigan, & Missouri
70% Amish/Mennonite, 30% Non-Amish
80% Pediatric, 20% Adults
Religious Affiliation
Amish/Mennonite Non-Amish
Patient Age
Pediatric Adult
Known Amish/Mennonite Disorders Michigan: Crigler Najjar
Missouri: Cystic Fibrosis
Illinois: Cobolomin C Defect & Dopa-Responsive Dystonia
Galactosemia, GM3 Synthase, Hypomyelinating Luekodystrophy, VLCADD
Brittle Hair, CAH, CMT, CF, Dystonia 6, Galactosemia, Hemophilia & Other Bleeding Disorders, Hypertrophic Cardiomyopathy, MCAD, MMA, MSUD, PKU, Polycystic Kidney Disease, SCID
Dystonia, SNIP1
Non-Ketotic Hyperglycinemia, Spinal Muscle Atrophy
IEMs diagnosed by NBS
Duarte Galactosemia VLCADD, MCADD PKU
Biotinidase Deficiency IBDH Deficiency 2MBCD Deficiency MMA 3MCC Deficiency
Concerns
Undiagnosed Propionic Acidemia & Sudden Death in Nappanee
Lack of Education
Counties with high infant mortality rates have the highest incompliance & refuse follow-up
Expanding NBS to include Amish specific mutations will take time