"The professionals with the Indian Health Service (IHS) said there was a terrific need for genetic services among Native American children,"

Dr. Hoyme says. "But because of the remote areas many of them live in, they were unlikely to come to Phoenix or Tucson to see a doctor."

Dr. Hoyme was worried that children born with Down syndrome, Fetal Alcohol Syndrome, neurofibromatosis, Severe Combined Immune Deficiency or any one of a thousand genetic disorders, were not being diagnosed and treated. In some cases, early diagnosis of a genetic condition can prevent the onset of complications of the disease. In other cases, early diagnosis provides a better understanding of the disease and early treatment can prevent the condition from getting worse.

Collaborating with IHS, the UA Department of Pediatrics sought federal funding to take pediatric genetics services to the Native American children who needed them. The team applied for and received a SPRANS grant (Special Project of Regional and National Significance) to set up a pilot project for the Native American community.

With Dr. Hoyme's guidance, plans were made to provide genetics services on the reservations of the Navajo, Hopi, Apache, Pima, Tohono O'odham, Pima/Maricopa, San Xavier, Hualapi, Havasupai/ Supai and Colorado River tribes.

Dr. Hoyme emphasizes that from the beginning there has been a team approach to providing care for the kids. The team includes physicians, nurses, social workers and genetic counselors. "We need to deal with illness in context of the family situation and the community," Dr. Hoyme says. "And because we may only be in the community a few times each year, we've worked hard to establish ongoing support for the child and the family."

There have been some challenges along the way. "There are not words in every Native American language for every type of disability," reports Lynn Hauck, genetic counselor. "In Navajo there is no word that means 'genetic.'"

The notion of what health is varies from tribe to tribe. Many Native Americans integrate spiritual beliefs into their understanding of health and healing. "As a physician traveling to the reservations,

I must always remember that Western medicine does not have all the answers," Dr. Hoyme says. "I try to explain my understanding of the dis-ease but also encourage them to speak with native healers if that is part of their culture."

UA Pediatricians

The SPRANS grant was designed to be short term, but the program worked so well that the State of Arizona and IHS found a way to continue it. Now, IHS and the State Children's Rehabilitative Services (CRS) provide funds to ensure that this genetics program continues. This program is one of only a handful of demonstration projects in the country funded by a SPRANS grant that has continued beyond its initial funding period.

A team of professionals from the UA Department of Pediatric Genetics traveling the state now includes Dr. Hoyme, Chris Cunniff, M.D., UA associate professor in pediatric genetics, genetics counselors, Lynn Hauck and Sarah Iden, and genetics nurse, Sue Ogden. Dr. Hoyme recently accepted a position as director of genetic services for UC-Stanford Health Care to establish a regional genetics program in Northern California. The work in Arizona will continue under the direction of Dr. Cunniff.

With the Native American program well-established, the team has turned its attention to another area of need - the Hispanic community. "As the state's largest ethnic minority, Hispanics have their own health care needs and barriers to receiving that care,"

Dr. Cunniff says. A second SPRANS grant is funding the expansion of the genetics program to the Hispanic community, specifically in Douglas, Nogales, Eloy, Yuma and Parker.

In addition, the UA pediatric-geneticists hold clinics in Yuma, Flagstaff, Phoenix and Tucson. In all, they take care of more than 3,000 children across the state each year. For Dr. Cunniff, and the entire genetics team, it is a satisfying career.

"We try to build long-term relationships with families," Dr. Cunniff says. "Since genetic conditions last a lifetime, we can't prevent genetic diseases, but we can help children and families deal with them. It's an amazing privilege to share in other people's lives the way we do."

It's not enough to take care of children who are sick. Pediatricians at The University of Arizona are working to help create healthier communities for children statewide.

One of the country's most pressing public health problems is child abuse. In Arizona, the number of child abuse reports is 30 percent above the national average. No one wants a child to be hurt - least of all the pediatricians who see first-hand the devastating results of child abuse. One new program designed to change the statistics is Arizona's Child Abuse InfoCenter, a statewide clearinghouse for child abuse information.

When the subject is child abuse, the situation is most often urgent - as is the need for up-to-date information. The goal of the Child Abuse InfoCenter is to make the latest information available by fax, e-mail and the Internet to professionals and volunteers who request it, says Anna Binkiewicz, M.D., director of the InfoCenter.

The data compiled and housed at the UA Department of Pediatrics includes information about diagnosing sexual or physical abuse; reviews of current publications on child abuse and child abuse prevention; case law reviews; grant and funding information; Arizona legislative updates and current child abuse statistics.

"Having one source for all this information will save people countless hours of research," says John Meaney, Ph.D., research associate professor in pediatrics, who is assisting in coordinating this project. "We all need to work together to prevent child abuse and effectively manage cases of child abuse. This is one important step."

For more information on the Child Abuse InfoCenter, call Doris Carlson, program coordinator, at (520) 626-1997 or access the center on the Internet at http://ahsc.arizona.edu/ACAInfo.

Next Page

Contents Page