Prevalence of Rare Genetic Disease
Northeast Ohio’s Amish community descends from a small group of immigrants who fled religious persecution in Europe. Over generations, some inherited conditions have become more common in their community while others have become less common. These genetic diseases are European in origin, occurring in families all over the world. However, many are not well-studied and need better therapy options.
Burden of Cost
The Amish community traditionally and largely does not participate in health insurance programs. As a result, the cost burden of their health care is a very large factor in their treatment decisions, directly affecting accessibility and perceived relevance of typical treatment options.
Difficulty in Accessing Care
Gaps of information and understanding often create difficulties for families of children with special needs or development delay. When healthcare providers do not recognize a child’s condition, the child may receive many diagnostic tests. The burden of cost can quickly become unbearable.
New Leaf’ Center’s primary care physician and staff provide local medical care on a daily basis to children with inherited conditions that are common within the community. Our medical team is becoming acquainted with the particular genetic conditions and culture of the community in order to provide knowledgeable, relevant care. Families are able to establish a trusting relationship with the medical team who can both explain the options for treatment and guide the parents in making informed decisions.
By providing for the cost of a physician and a clinic up front, the community not only receives quality, accessible health care, but also is able to greatly reduce the overall burden of cost, both for the families of affected children and the supporting community. Familiarity with the genetic conditions of the community leads to cost-effective testing and diagnosis. Early detection and intervention leads to reduced hospital visits. Collaborative relationships and diligent networking lead to reduction of costs for some medications and treatments.