A new medical clinic rising on the north side of the village of La Farge will include a genetic testing program to generate medical breakthroughs for treating the Amish and Mennonite communities concentrated in Vernon County.
The program is rooted in Dr. James DeLine’s dedication to serving the unique needs of those populations in addition to the usual array of services at the La Farge Medical Clinic-VMH, where he is medical director.
“It’s been a passion of mine,” said DeLine, who started his La Farge practice in 1983 with the specific intent of treating a poor, underserved area.
Vernon County has the highest concentration of Amish in Wisconsin, ranking 15th nationwide. Although exact numbers are elusive, the Cashton area is believed to have more than 2,000, making it the No. 1 area among 15,000 Amish statewide, putting the Badger State behind only Pennsylvania, Indiana and Ohio. Neighboring Monroe County has about 1,000 Amish.
Serving Amish and Mennonites, who often are afflicted with genetic conditions specific to their heritage, accounts for 15 to 20 percent of the clinic’s patient flow and about 25 percent of his own practice, DeLine said.
Conditions stem from the so-called “founder effect” — the fact that all Amish and Mennonite communities are descendents of the 100 Amish families who came to the United States in the 1700s, and many have rare diseases because of that lineage, he said.
“Though great efforts are made by the community to marry others who are genetically distant, the founder effect still results in high frequencies of these diseases,” DeLine said.
With the help of the University of Wisconsin Department of Pediatrics and Waisman Center in Madison, the La Farge clinic has been developing a genetics program to improve diagnosis and treatment, not only for Amish and Mennonites but for all patients, he said.
Genetic maladies, which often involve costly tests when laboratories don’t know what they are looking for and missed diagnoses in others, include hypertrophic cardiomyopathy, a heart disorder that DeLine said results from a specific mutation in the Amish, although many different genes cause it in non-Amish people.
After one of DeLine’s patients was treated surgically at Mayo Clinic in Rochester, Minn., 10 years ago, he said clinicians advised echocardiograms for all siblings because they would have a 50/50 chance of having the disease, repeating the tests every five years.
The echoes would have cost thousands — quite a chunk for the Amish, who eschew insurance, although hospital systems often provide discounts, DeLine said.
“Now, due to advances in genetic testing, we can send samples to the University of Wisconsin, and for, $75, tell the individual whether they do or do not have the condition,” sparing the worry of repeated echocardiograms, he said.
Similarly, Yoder dystonia is a rare lethal condition afflicting only Amish. A developmentally delayed child who came to the clinic was diagnosed with a gene test that cost less than $100. Previously, extensive testing costing tens of thousands of dollars would have been required, with considerable suffering and risk, DeLine said.
“Once this lethal condition was identified, the child was cared for at her home, surrounded by loving family, made comfortable until her death,” he said.
Another rare condition, propionic academia, affected a child who spent a month in Rochester Mayo, where she was discharged without diagnosis for comfort care on the assumption that she would die, DeLine said.
The La Farge clinic then diagnosed her illness, which can be controlled with proper diet. If the diagnosis had been made earlier, most of the hospital stay costing several hundred thousand dollars could have been avoided, with better results, he said.
“In this area, the diagnosis is revolutionary,” he said. “We can now do testing for under $100,” he said, in addition to testing young couples to see whether they have the potential to have a child with a condition.
Only three clinics — in Pennsylvania, Ohio and Indiana — now manage such cases, caring strictly for such children, he said.
“Our practice is the first to attempt to incorporate the diagnosis and care of these rare genetic disorders into a full spectrum family medicine practice,” DeLine said.
After DeLine operated his private practice for 20 years, its growth prompted him to join Vernon Memorial Healthcare in Viroqua, which is building the new, 12,000-square-foot clinic expected to open in July.
The clinic has three physicians, a nurse practitioner and a physician assistant, and it is recruiting another full-time family doctor, he said.
“We are developing a collaborative medical home for the diagnosis and care for these complex children, with primary care in La Farge and tertiary care at UW or Gundersen Health System,” DeLine said.
The Amish have taught DeLine a keen sense of life and death, he said.
“In a way, they’ve challenged me to go beyond what I was trained to do — not in a cowboy fashion, but with clinical diagnosis and treatment,” he said.
“I’ve learned a lot about medicine and life,” he said. “A 21-year-old couple who have a stillborn child work through it with a maturity that is amazing, a sense of acceptance and understanding of the role of dying in their culture.”
He confessed confusion about the faith the Amish put in remedies advertised as medicinal lifesavers but often are little more than vitamins.
“Normally, those of us who use technology roll our eyes at that,” he said. “It’s challenging, but I’m respectful and, as long as it isn’t costing them the farm, I work with them. They are appreciative and grateful. It’s an honor to work with them.”
The clinic project has attracted good local support, including La Farge-based Organic Valley’s contribution of $50,000 a year for three years, DeLine said. He also has applied for a state grant and hopes to obtain other foundation grants and donations. The Amish also sponsored a fundraiser, he said.
The annual cost of the clinic’s genetic program initially is expected to run between $350,000 and $500,000, he said.
“Vernon Memorial Hospital has been good to absorb a lot of that,” he said. “They’re the unsung heroes of the program, but they understand the importance of the work.”
The clinic’s services dovetail with VMH’s triad of goals that many health care systems follow, CEO Kyle Bakkum said. The three elements are:
- Enhancing the patient experience.
- Improving the population’s health. “When we see the value of the clinic for early detection, that improves the health care,” he said.
- Reducing health care costs, which early detection accomplishes by avoiding the need for expensive care later, he said.
- Bakkum underscored the importance of availability of health care.
- “Having a clinic in a town of only 750 provides access not only to the genetic clinic but also primary care” needed in rural areas, he said.