Simple Medicine Dover's Amish shun health insurance and state and federal aid. Faced with the rising costs of health care, families look to the community for help. Delaware Today, May 2003 Lizzie Yoder's tiny chihuahua tip-taps across the kitchen floor. By the window, her husband Ammon peers out with a pair of binoculars, certain he's seen a fox darting through the field on his farm. Their 13 children are grown up and married, so nowadays they keep up the house and enjoy spending time with their grandkids. All 68 of them. The Yoders are respected members of the Amish community in Dover, where almost 300 large families travel in horse-drawn buggies along the rural roads that spin off Route 8. They live quietly without so-called essentials like electricity and telephone lines. They also live, at their peril, without any form of health insurance. Historically, the Amish have kept away from insurance policies because they believe accepting insurance demonstrates a lack of faith in God. This belief led the Amish in the late 1950s to successfully request an exemption from Social Security taxes, which they interpreted as a form of government-run retirement insurance. "We don't believe in government hand-outs. We try to take care of our own," says Ammon. (He notes, though, that the Amish pay all other state and federal taxes.) The family unit among the Amish is held as self-sufficient — rarely do the Amish entrust the care of their sick or elderly to a long-term care facility or a nursing home. The Yoders, for instance, care for Lizzie's 89-year-old father in their own home. Without the safety net of private HMOs or government-run programs like Medicaid, the Amish must dig into their own pockets to pay for all medical expenses — doctor visits, medication, hospitalization and surgery. Few Amish are financially well-off. Most families bring in modest incomes, but because Amish families tend to be large, every dollar must stretch to provide for their basic needs, Lizzie says. "[People have] the idea that the Amish have a lot of money. I don't know how they think that, cause a lot of the Amish are farmers. "When you have a bill that's several thousands of dollars, you can't expect us to pay all at once." Dr. Francis Montone, a Dover pediatrician, treats children from about 50 to 100 Amish families. He says the costs of routine health care can place a huge financial burden on an Amish family. "Let's face it: Medical care is ridiculously expensive," Montone says. "When you're spending their money, it's really tough to say, 'Look, [your child] has to go in the hospital.' It's really a challenge for me." Bayhealth has worked particularly hard to help the Amish with their unique financial situation, Lizzie says. "Kent General is very good with accommodating us," she says. "They're very good with setting up payments, especially for people with low incomes." Some Amish families in Dover, though, are already suffering from the burden of high medical expenses. Ammon's niece, for instance, has dealt with the hospitalizations of several family members. One child needed a kidney transplant. Another family member was diagnosed with bone cancer. And another was hospitalized after a heart attack. The cost of a kidney transplant alone averages $50,000 to $100,000 for the first year of treatment, barring any complications, says Dr. Richard Kasama, a nephrologist at Cooper Medical Center in Camden, N.J. That estimate does not include the cost of anti-rejection drugs, which a transplant recipient must take for the rest of her life. Those drugs can cost more than $50 per day. "It puts a hardship on the immediate family, and a hardship on the community," Lizzie says. When a family in the community can't afford to pay their medical bills, the church tries to pitch in, sometimes even soliciting funds from other Amish communities in the region. Usually, though, the church can only help pay a small- to medium-sized portion of the total bills. "They can't pay out more than what the church has got," Lizzie says solemnly. "People who have really sick kids, the cost of health care could wipe them out," Montone says. Naturally, the Amish try to look for ways to keep their costs down, but cost-cutting can risk their long-term health. "Preventive health care is not usually at the top of their priorities," he says. "They tend to be very crisis-oriented." When an Amish child becomes sick, Montone says, the parents first try to manage the illness at home, rather than setting up an appointment with their doctor. "They'll try all kinds of things on their own. Then when it gets worse, they come to see me. We just had a huge outbreak of pertussis (whooping cough). I didn't see any tragedies, but a lot of kids were pretty sick." Montone says the outbreak was so widespread that some Amish families even set up signs at their doorstep that read, "If anybody in your family has whooping cough, stay away." The outbreak of pertussis concerns the state, whose Division of Public Health has a hard time tracking contagious illnesses within the community because the Amish tend not to volunteer the information, Montone says. In late fall 2002, the division set up a pertussis clinic where Amish families could go to receive vaccinations. "Problem is," says Montone, "the vaccine is a series. I don't know what the follow-up rate is." Following up on health issues has been a consistent problem for doctors who treat Amish patients. "When they feel they're better, they don't go back for their follow-ups," he says, pointing to medical costs as a major factor in that decision. Even though the interest in preventive health care among the Amish appears lukewarm, the Division of Public Health does offer the Amish immunization programs and other preventive health services. Once a month, a public health nurse sets up a clinic at the Yoders' house where Amish families can get basic health services for free or for a reduced rate. "There's quite a few that bring their children to get immunizations," Lizzie says. However, some families are still wary about getting their children vaccinated. "I think they don't think it's healthy," she says. "They're still kind of scared of it." The choice to immunize is left to each family; because Amish children don't attend regular schools, the immunizations aren't mandatory. Jo Anne Baker, director of women's health for the Division of Public Health, says in addition to the clinics, all first-time mothers get a home visit from a Public Health nurse. She says she keeps the Amish informed about what options the state can offer them, but she acknowledges the culture's restrictions and tries to respect them. The Department of Social Services also keeps the Amish informed about its services, like its Medicaid program, although the response to that program has been uniformly negative. "We automatically send them a written notice of their approval," says Roseann Mahany of the Department of Social Services. "We've had situations where the health community may have urged an individual to apply for Medicaid, but they actually have to complete an application." One aspect of Amish living that may complicate their health care is the small genetic pool within each community. The Amish are forbidden to marry outside of their religion, so they marry each other, which can increase the likelihood of some exotic diseases. The large Amish community in Lancaster, Pa., for instance, has struggled with Crigler-Najjar Syndrome, an extremely rare disease of the liver that often necessitates radical treatment or a liver transplant. Dr. Holmes Morton and his wife Caroline run the Clinic for Special Children near Lancaster to study and treat Crigler-Najjar and other recessive disorders common in the Amish community there. These disorders aren't limited only to the Lancaster community — similar genetic conditions exist in Amish settlements throughout the country, Caroline Morton says. "We've seen a number of families from Ohio. There's a prevalence of genetic disorders within the Ohio community." Geneticists call this prevalence the "founder effect." Dr. Erik Puffenberger, the lab director at the Clinic for Special Children, says small, closed-off populations with a common ancestry tend to exhibit this effect over time. "Two-hundred fifty years ago, a small group of [Amish] founders separated themselves from the main population," he says. "If you start out with a small founding population, and one of the founders happens to be a carrier for a disorder, over time, the frequency of that mutation can increase." Puffenberger estimates that about 10 percent of the Amish in Lancaster now carry the recessive gene for some of the illnesses the clinic treats. If both parents in a family carry the recessive gene, each of their children has a 1 in 4 chance of having the disease. "We've had some families that have as many as four or five children with a disorder," Morton says. Some of those children require special diets or formulas. Others need surgery or special equipment, like children with Crigler-Najjar, who must sleep on an apparatus resembling a tanning bed to break down deadly toxin build-ups in their bodies. While these medical expenses can be a severe burden on Amish families, Morton points out that they're the best-case scenario, at least for now. "We always say, the cost of not treating these disorders is much higher than treating them." Dover's Amish community has been relatively free from such rare genetic diseases, but Puffenberger says the founder effect makes them more susceptible than the general population. Just a few isolated cases could quickly drain families of their savings. Lizzie Yoder says the Dover Amish may one day start a fund among themselves for medical expenses, but she points out that there is one form of aid the Amish do accept to help pay the bills. "If there's charity — just a fund that's a charity," she says, "we do accept that." Shaun Gallagher is Delaware Today's managing editor.