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By KRISTA CONGER Frequent jaunts to Hawaii are just what the doctor ordered, at least for Lucile Packard Children’s Hospital geneticists Eugene Hoyme, MD, Greg Enns, MD, Louanne Hudgins, MD, and Melanie Manning, MD. But, thanks to an interstate collaboration to provide genetic services and education to Pacific-Island residents, the doctors spend more time looking at Waikiki Beach than lying on it. "Hawaii’s geographic location makes it difficult to recruit and retain clinical geneticists," said Hoyme, the Mosbacher Family Distinguished Packard Fellow and chief of medical genetics at Packard Children’s Hospital. "In Hawaii, we are the only geneticists between California and Sydney, Australia, which can be a very isolating experience professionally." As a result, the Hawaii Community Genetics program approached Packard Children’s Hospital about a year ago to propose an ongoing collaboration with Kapi`olani Medical Center for Women and Children in Honolulu. Hoyme and his colleagues began their trans-Pacific commutes to their beach-view offices in June of this year. The physicians, who each spend about three weeks a year in Hawaii, also see patients from Guam, American Samoa and other Pacific islands. Such long-distance doctor-patient relationships benefit tremendously from modern technology. "We provide onsite genetic services one week each month, and we are available for telephone and telemedicine consultations the remainder of the time," said Hoyme, who is also a professor of pediatrics at Stanford’s School of Medicine. "The kind of work we do lends itself particularly well to telemedicine, especially when dealing with children with structural birth defects. The Hawaiian physicians can show us what the baby looks like in the neonatal intensive care unit at Kapi`olani, and we can talk with the family from here at Packard." The physicians also follow up on any abnormal newborn screening or other genetic testing from Hawaii. "The provision of genetic consultation to children and families who require them has become a standard part of comprehensive pediatric care," said Hoyme. "Statistics show that at least half of the children admitted to children’s hospitals in North America have a genetic or birth defect." Genetics plays a role in all human disease, and genetic consultation may be indicated not only in common birth defects, such as Down syndrome but also in many chronic illnesses, including cystic fibrosis and hemophilia. Correct diagnoses are critical when planning surgical or medical intervention, providing long-term prognoses or counseling the parents about the potential risks in a subsequent pregnancy." Unfortunately, because genetic services are not well-reimbursed by current health insurance plans, many children’s hospitals are unable to provide genetic consultation because of financial constraints. Hoyme was recently named Packard’s third Distinguished Packard Fellow —a program established to support essential medical specialties that don’t pay for themselves. "Another way to support genetic services is to combine the efforts of several different entities," said Hoyme. For example, Hawaii Community Genetics represents the Hawaii Department of Health Services, the Hawaii Medical Services Association, Queen’s Medical Center and the University of Hawaii’s John A. Burns School of Medicine, in addition to Kapi`olani. "Hawaii has a very diverse population, with no majority race and no dominant culture," said Hoyme. "It’s a great mixture of different kinds of patients — Asians, native Hawaiians, whites and blacks. This racial and cultural diversity makes Hawaii a unique site for medical education and clinical genetics research. We plan to include Hawaii as a training site for our medical genetics residents and for graduate students in a planned Stanford graduate program in genetic counseling." Although the physicians are happy to include Hawaiians among their patients, they stress that their time on the islands is no picnic. In addition to their clinical duties, they are also working with their Hawaiian colleagues to recruit a full-time medical geneticist who will maintain ongoing ties to Stanford, helping them set up outreach clinics on other islands and giving lectures to residents and medical students. "The physicians are wonderful people," Hoyme said, "but they work us very hard. They squeeze a month of work into just one week."
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Distinguished Packard Fellows Program funds innovators in unusual fields (11/5/03) New
approach to genetic screening may rapidly identify immune
diseases (5/14/03)
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Stanford Report, December 3, 2003
