2010-09-30 / Local & State

Amish Need More Clinics For Genetic Troubles

By Gil Smart

LANCASTER, Pa. (AP) _ In 1998, five Amish families traveled from northeast Ohio to a medical clinic at the end of a winding farm lane in Strasburg, hoping for a miracle.

They had read of the Clinic for Special Children and its founder, Dr. D. Holmes Morton, in Reader’s Digest. They knew the clinic, founded in 1989, specialized in diagnosing and treating inherited, genetic disorders in Amish and Mennonite children. The Amish families, from Geauga County, Ohio, all had children with undiagnosed disorders.

“The children had all been seen by the Cleveland Clinic’’ and specialists elsewhere, Dr. Heng Wang said. “But they had never seen a doctor like this.’’

Morton spent hours with each child, though ultimately he was unable to identify what was wrong with the children. “But on the way home, all the families were excited,’’ Wang said.

“They didn’t have a diagnosis. But they did have an answer.’’

The result was Das Deutsch Center for Special Needs Children in Middlefield, Ohio, opened in 2002 and based largely on the work of Morton and his Strasburg clinic. Wang serves as director.

Friday, he was one of about 30 physicians, researchers, academics and members of the Plain community who packed a second floor conference room at the Strasburg clinic to talk about the latest advances in treating genetic disorders among Plain children. Equally important, it seemed, was their desire to talk about why the Strasburg clinic has been so successful, and how that success might be replicated elsewhere.

Among the group were members of an Amish community in western Indiana that hopes to establish its own clinic along the lines of what Morton has done in Strasburg. Also present were those who work with Plain populations throughout Canada. And while much of the talk was technical, dealing with genome sequences and similar topics, other speakers cut right to the emotional quick. Slides of sick Plain children reminded the group that the core issue was one of anguished families. Pediatrician Dr. Kevin Strauss noted that the clinic, with its ability to quickly test for and diagnose genetic disorders, has saved local Plain communities millions of dollars in medical costs.

“What if we lived in a world where these services were available to all children?’’ he asked rhetorically.

Plain communities around the country are thinking about it, at least.

Throughout North America, the Amish population alone has doubled between 1991 and 2010, said Dr. Donald Kraybill, senior fellow at the Young Center for Anabaptist and Pietest Studies at Elizabethtown College. Kraybill, whose presentation kicked off the conference, noted that the estimated number of Amish in Pennsylvania has grown 86 percent during that period, from about 31,970 in 1991 to an estimated 59,350 this year.

In Lancaster County, he said, Anabaptist groups (including Amish, Mennonite and Brethren) total about 87,447 _ 17 percent of the county’s overall population.

But from a genetic standpoint, he noted, it’s “a very complicated maze and puzzle.’’ There are some 40 different groups of Amish alone, he said. Plain people in Ohio or Indiana can have very different genetic makeups than those living here.

That means, Morton said, their children may have different genetic disorders. “You see diseases in Mennonites that you don’t see in Amish,’’ and vice versa, he said. “You have to know the community, and there’s a tremendous advantage to (receiving) health care from a place that understands’’ the community.

Since 1989, Morton’s clinic has made understanding, and serving, that community its goal. Morton, who cofounded the clinic with his wife, Caroline, has been profiled in The New York Times and Time magazine. In 2006 he was awarded a five-year $500,000 MacArthur Foundation Fellowship grant. Among other things, he used the money to buy a microscope to use in neuropathology studies of glutaric aciduria, one of the 107 inherited conditions the clinic has identified as affecting Plain children.

Some of those disorders can be deadly. Maple syrup urine disease, for example – so named because of the sweet smell of an infant’s urine – can result in severe brain damage, even death, if left untreated.

The clinic, pediatrician Strauss told Friday’s gathering, receives no government money: 38 percent of its funding comes from charitable gifts, another 31 percent is generated by the 20th annual auction, held Saturday. Fees and other income finance the rest.

Friday, the clinic was hailed not merely as a model for those who would replicate it in other Plain communities, but for health care in general. “There’s no place in the university system where (researchers) have the collaboration with the clinicians who are actually seeing the patients,’’ Morton said. “There are certain things you learn here that you could not learn in another setting.’’

But ironically, Dr. Erik Puffenberger, laboratory director at the clinic, said he was warned that taking the job in Strasburg represented a career black hole. “I think we were all told we would be making a huge mistake by coming here,’’ he said. Better, they were told, to stay within the university system where there would be more and better career opportunities.

Recruiting may be a hurdle for those looking to replicate the Strasburg clinic’s success elsewhere, several speakers suggested.

Technology might be a second hurdle, Morton said. The Strasburg clinic does virtually all of its own testing and maintains a wellequipped and expensive laboratory. But “it is really necessary to have all this technology out in the middle of this field,’’ Morton said, as it saves the clinic substantial sums in the long run.

“We’re not shipping out all our lab work, we can do it here quickly and cheaply,’’ Puffenberger said.

Strauss estimated that the clinic has saved its Plain patients $11 million in testing costs alone. Its extensive knowledge of disorders affecting the community means that with a few simple tests, “patients could walk in today and get a diagnosis for $50.’’

Plain families, like everyone else, are feeling the pinch of high medical costs, he said. Early testing and diagnosis have enabled the clinic to save $6 million in hospitalization costs for Plain children with maple syrup urine disease alone.

“That’s a savings of more than three times the annual budget of the clinic, just in keeping children out of the hospital,’’ he said, noting that one day in the intensive care unit of Children’s Hospital of Philadelphia can cost up to $25,000.

The clinic also negotiates with hospitals on behalf of its Plain patients, Strauss said. “We say we feel you should give all self-paid Plain patients a 75 percent discount,’’ he said and, turning to the Indiana contingent, he advised: “Set up your relationship with the hospitals early.’’

Other speakers Friday stressed the importance of the Strasburg clinic’s relationship with Franklin & Marshall College and other initiatives that have made it a model for doctors and researchers in Ohio, Indiana and perhaps one day, in other states where growing Plain communities would benefit from having immediate access to doctors who understand their culture as well as their genetics.

“It’s not just about a medical practice,’’ Elizabethtown College’s Kraybill said. “That’s the great success here as well as the potential success of other clinics.’’

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