Too far to swim: Providing access to genetic and newborn screening follow-up services to Hawai‘i neighbor islands and Guam

It is well documented that rural communities struggle to receive primary health care services. When it comes to sub-specialty care, the challenges are even greater with some families traveling for hours to see a specialist. Add in miles of ocean between the urban specialty center in Honolulu and the neighbor islands or Guam and it results in scenarios where families forego specialty care for their child or have to absorb high travel costs, loss of wages, and childcare costs for their other children. It is a difficult decision for parents especially when third party payment for travel is limited or non-existent. For public health genetics and newborn screening programs, the benefits of the program for families will not be realized if their children can not access the services.

This study involves providing access to genetic and newborn screening follow-up services to Hawai‘i neighbor island and Guam families using in-person outreach clinics and telehealth technologies. The services are provided by M.D. geneticists and genetic counselors with the help of neighbor island district health office and Guam public health staff. Personnel time and costs are being collected to calculate the cost of providing these services. Family, primary care provider, and specialty provider satisfaction surveys are also being done to measure satisfaction with the genetics visit. The outreach data will be compared to data collected at the Honolulu site. Findings from this study should help state policy makers and genetics and newborn screening professionals plan strategies to ensure access to genetic sub-specialty services.