After four years of planning, preparations and fundraising, the Community Health Clinic (CHC) in Topeka opened its doors in September of this year, beginning a new era of locally available, affordable, comprehensive health care for children and families with genetic disorders. The clinic will hold an official ribbon cutting ceremony at 11 a.m. on Saturday, Oct. 26, at 315 Lehman Ave. in Topeka.
Northeast Indiana is home to about 37,500 Amish people, the third largest Amish population in the United States. Similarly, the area is home to a disproportionately large number of children with inherited and non-inherited genetic disorders. The Amish and Mennonite communities, however, have lacked access to expert medical services consistent with the community needs.
The prevalence of one disorder, NKH (nonketotic hyperglycinemia), helps illustrate the uncommonly frequent instances of rare disorders among this population. One local family has two daughters with the disorder. The first was born in 2000, at a time when there were only 167 known cases of NKH across the globe. Since then, 16 more cases of the disorder have been documented in Northeast Indiana alone. In fact, a 10-mile area of Northern Indiana has the world’s largest concentration of patients with NKH. And medical professionals see dozens of other rare genetic diseases within this population, as well. The Community Health Clinic is designed to meet the need for expert medical services that cater to these rare diseases.
Governed by a community-based board of directors that includes medical professionals and Amish and Mennonite individuals, the clinic seeks to:
· honor the values important to the Amish and Mennonite communities;
· provide genetic testing, diagnosis, evaluation and ongoing management of rare genetic disorders, especially among children;
· improve access to affordable, community-based diagnostic services, medical care and treatment, and access to financial support services for children and their families;
· research the prevalence, signs, symptoms and treatment of rare disorders in the community, with an interest in being able to advance medical knowledge and care of patients with these disorders both locally and globally;
· provide counseling, education and an opportunity to meaningfully contribute to research that could lead to the eradication of certain environmental factors that interact with and intensify the symptoms of rare diseases;
· promote the importance of health, disease identification and prevention measures among its patients and their families;
· adhere to its core values: service, community governance, responsibility and integrity.
“The Community Health Clinic provides a much-needed resource in this area for special children and adults,” stated Jared Beasley, CHC clinical operations director. “Access to affordable local care for patients with genetic disorders helps to overcome two primary barriers that have posed problems in the past: cost and travel. By making early diagnosis and treatment accessible, the CHC impacts patients’ lives by keeping children healthier and reducing the total cost of health care. Providing early diagnosis and close management will help reduce the expense of multiple hospital visits and remove significant healthcare costs from the community.”
The Community Health Clinic is modeled after a similar clinic in Pennsylvania. That clinic has demonstrated reduced laboratory costs, reduced wait time for test results, decreased hospitalization rates and prevention of major neurological disability for its patients. The board seeks to see similar results for the Plain and other rural communities in Northeastern Indiana.
The Community Health Clinic is open daily. It is led by Zineb Ammous, MD, a physician trained in diagnosing and treating genetic diseases. The clinic's staff includes a clinical geneticist, nurse practitioner, metabolic dietitian, clinical operations director and office coordinator. It is currently recruiting a registered nurse.
For more information about the Community Health Clinic, go to www.IndianaCHC.org or call the clinic at (260) 593-0108.