Delivering genetic services to the eight states that make up what is called the “Mountain States Region” with a combined area of 1,081,813 square miles and a population of more than 44 million people is extremely difficult. This is going to become even more difficult since the states that make up the region Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah, and Wyoming are expected to experience continuous population growth over the next two decades especially among minority populations.
More than 800,000 births occur annually and currently the birth rates in the region are higher than birth rates in the U.S., however, 3 to 5 percent of these births are complicated by a genetic condition and as a result, more than 18,000 infants and their families in the region require genetic services each year.
In addition, Arizona, Nevada, New Mexico, and Texas have larger concentrations of Hispanic/Latino populations that the U.S. average. The Mountain States Region is home to a higher percentage of Native Americans than the U.S. as a whole and in the four states along the U.S.-Mexico border, a language other than English is spoken at home in one quarter to one third of all households. Therefore, the region is challenged to deliver genetic services to unique populations many of whom are culturally and linguistically distinct from the majority population.
The Mountain States Genetics Regional Collaborative Center MSGRCC) located in the eight state region operates to ensure that individuals with genetic issues have access to the appropriate genetic expertise and information delivered in the context of a medical home. The goals for MSGRCC is to provide newborn screening, expand and fortify the infrastructure for genetic services, improve care coordination for people with heritable disorders, improve access to services, and serve as a catalyst in the development of emergency backup systems for newborn screening services.
However, the region has additional problems that interfere with providing genetic services that relate to fiscal challenges, increases in children enrolled in Medicaid, the increase in states doing newborn screening, a need to coordinate laboratory screening with short-term and long-term follow-up across states lines, the fees needed to pay for newborn screening lab work, plus follow-up administrative costs can vary greatly in the states.
The states do offer some individual programs that coordinate genetic services. The typical delivery model for genetic services is a single major urban genetics center often using only one or a few board certified genetics providers to serve both the urban and rural population. Often patients needing services are often located hundreds of miles from subspecialty providers. To meet the needs, primary care providers often provide a high level of specialty and even subspecialty services in collaboration with distant subspecialists.
There is a great need to use telemedicine to provide genetic services, but currently telemedicine genetic services are not well developed in the entire region. The National Genomics and Public Health Conference held at NIH in December 2010 focused on genetic testing and speakers discussed why more genomic medicine is not brought to more Americans especially in rural areas via telemedicine technologies.
Several barriers exist that are slowing down the use of telemedicine in the Mountain State Region and the rural areas in general. Sylvia Mann Au, State Genetics Coordinator for the Hawaii Department of Health reported that she has been working with the U.S. Regional Genetics Newborn Screening Collaboratives on a national effort to use new software for videoconferencing. She explained that very often the present software is too complicated to use but other programs now being developed will use simpler systems to link patients and be easily accessible to the specialists.
However, when telemedicine genetic services have been offered in the Mountain State Region, they are well received by both families and providers. Some of the states in the region have strong IT systems and use telemedicine to deliver healthcare but Montana is only state that specifically offers genetics counseling through their Eastern Montana Telemedicine Network.
A MSGRCC Telemedicine Workgroup is in place to help the MSGRCC obtain data on the availability and use of telemedicine systems to provide genetic services in the region and the plan in this region is to take into account the development of telemedicine along with the medical home.
At the MSGRCC meetings, the group discusses some possible solutions in order to deliver more genetic services to their region. One way may be to contact some large providers with closed systems and see if it is possible to partner with them in order to eliminate barriers to the use of telemedicine. Also, high tech may not always be the answer to reach the target population since in many cases, high tech and even most low tech systems do not exist in rural and frontier areas so the only technology available to use may be the telephone.
In addition, developing marketing brochures for the region may be the key to reaching more people to increase the use of technology to deliver genetic services. Development of brochures on telemedicine could be aimed at consumers with another brochure targeting providers in the region. The telemedicine workgroup is continuing marketing efforts to bring genetics clinicians and telemedicine providers together with the goal to get the clinicians excited about the use of telemedicine in the region.