A Different View of Health Advocacy in Amish Country Angela Kueny

in Amish Country A Different View of Health Advocacy

by ANGELA KUENY, Associate Professor of Nursing H ealth advocacy is defined as “Activities related to ensuring access to care, navigating the system, mobilizing resources, addressing health inequities, influencing health policy and creating system change” (Hubinette, Dobson, Scott, & Sherbino, 2017, p. 128). As a nurse, working in a health system of expensive marketbased specialized care, care centers primarily located in urban centers far from rural agricultural communities, and health care providers who receive little education and support in working with unique cultural groups, I believe in health advocacy as a core of my profession (American Nurses Association, 2020). Improving access to quality care to those who are left behind in this health system is one of my passions. I work as a nurse at the Decorah Free Clinic and annual University of Iowa outreach clinics for Amish families with hemophilia. Both charitable endeavors ask nothing of participants except to come, which represents one model of health advocacy to bring health care to marginalized populations. Sabbatical allowed me to see a new side of health advocacy that I had not explored before. This article will explore a model of joined health advocacy between providers and community partners that creates potentially more sustainable and empowering health care resources than I have engaged in the past. I will also describe the experiences of several Amish families with genetic illnesses who benefit from access to these resources. During my Scholar in Residence fellowship at the Young Center for Anabaptist and Pietist Studies (2020) in Elizabethtown, Pennsylvania in the fall of 2019, I came to deeper understanding of a vast innovative network of health options for Plain Population families. Plain Population is a term that represents religious group members of Anabaptist origins, such as Amish and Mennonite. Due to the high Plain Population size in Pennsylvania, several health care resources provide primary care, mental health care, and hospital payment plans (Amish America, 2015; Goldsmith, Porter, & Royce, 2019; Yohn, 2018). I was specifically focused on learning more about care for families with genetic illnesses because of my past work with families with hemophilia in Iowa. Plain Populations experience a heightened risk for genetic illnesses because of historical practices of marrying within their tight-knit religious groups, large family sizes, and founder genetic illnesses within members (Strauss, Puffenberg, & Morton, 2012). In a community that does not subscribe to public or private health insurance and lives remotely to any genetic specialist (Kraybill, JohnsonWeiner, & Nolt, 2013), a significant challenge is to make the connection between these families and life saving health care. Extensive time with Dr. Holmes Morton, the physician who founded the Clinic for Special Children in 1989 in Strasburg, PA and now the Central Pennsylvania Clinic (2019), allowed me to see the operation of a network of clinics to address the health care needs of Plain families with genetic illnesses. On one of our first drives through a valley in the Pennsylvania mountains, housing several conservative Amish and Mennonite sects, Dr. Holmes Morton pointed to each home, listing off the genetic illnesss found within such as: phenylkentonuria, propionic acidemia, pyruvate kinase deficiency, maple syrup urine disease, or familial hypertropic cardiomyopathy (The Change Foundation, 2006); all of these highly complicated illnesses with costly treatments require consultation with specialized geneticists. In Dr. Morton’s words (2012), “If in our society we have prejudices and business practices that in effect deny children with genetic diseases access to medical care, then we should change those practices and prejudices.” But, I wonder, what do Plain families with genetic illnesses need in their health care services? And, who is responsible for making these services available? In essence, how does one advocate for this unique and remote population? Joined health advocacy, in this case, would ask and partner with the Plain families to understand their needs and then house the responsibility of the needed care within the Plain Population members. Dr. Morton’s two clinics, in partnership with six other clinics across the country in states such as Ohio, Indiana, Kentucky, and Wisconsin, provide care in the heart of Plain communities to families with genetic illnesses with this model (Plain Community Health Consortium, 2020). These non-profit clinics are literally built by the Plain Angela Kueny at her desk in the Young Center at Elizabethtown College in Pennsylvania IMAGE COURTESY OF THE AUTHOR

Populations, endowed through fundraisers in Plain Population communities, overseen by a board comprised of mostly Plain Population members, and then paid for by Plain Population families when they receive care. The physicians, nurse practitioners, therapists, and nurses who are hired to work at these clinics are prepared in general fields, but then spend their practice focusing on genetic illnesses. The clinics house diagnostic genetic screening equipment, molecular biologists, pharmacies, and patient and therapy rooms; the clinic structures are in alignment with Amish cultural values with mostly wooden structure and quilt hangings, and minimally visible technology. Profoundly, the clinics continue to discover new genetic illnesses and manage hundreds of illnesses in thousands of patients (The Change Foundation, 2006; Strauss, Puffenberg, & Morton, 2012). It is easy for anyone to be inspired by this impactful work, and I sought a deeper understanding of the need for these services with a group of families with one specific genetic illness, phenylketonuria (PKU).

Amish families with Phenylketonuria

I collaborated with Dr. Morton to interview Amish families with PKU in one Pennsylvania Amish settlement nearby the Central Pennsylvania Clinic. The clinic intends to incorporate PKU treatments into their practice but first needed to know family needs. As a background, PKU is a condition in which individuals are born without the ability to metabolize the amino acide phenylalinine, found in foods with protein (Mayo Clinic, 2020; National Organization for Rare Disorders (NORD), 2020). From the moment of birth, if children take in phenylalinine it builds in their system like a toxin and the child can develop irreversible cognitive impairments. The treatment for PKU is to remove all phenylalinine (natural protein) from the diet and incorporate a phenylalinine-free amino acid formula into their diet. Without insurance, the formula can cost between $60,000- $200,000 per year (Pollack, 2007). PKU is an autosomal recessive genetic disorder, passed on to children if both the mother and father have it (NORD, 2020). To diagnosis this early and initiate treatment, states provide newborn blood screening and metabolic programs to assist families (Iowa Department of Public Health, 2020). This illness presents a unique picture of understanding Amish priorities and considering health care services that may accommodate those priorities. All names are changed to maintain anonymity, and this study was approved by the Luther College Human Subjects Review Board.

Dr. Holmes Morton founded the Clinic for Special Children in 1989 and the Central Pennsylvania Clinic in 2019. IMAGE COURTESY OF WPSU PUBLIC RADIO

Family One: Unfamiliarity of Illness Severity and Treatment

I first interviewed Nora Stutsman, a widow with seven children, two who have PKU. She teaches school and manages a farmstead with the assistance of her children. Cheryl, an 8-year-old girl with PKU, sat quietly watching as we discussed her positive PKU diagnosis. Cheryl tested positive for PKU as a newborn and was referred to a metabolic geneticist in a town 80 miles away. The geneticist provided some initial education, including diet changes and the necessity of a prescribed formula. He arranged for Cheryl to have monthly tests of her phenylalinine levels through the local health department who came to her house to facilitate. Phenylalinine levels reflect how much she has in her diet, which should be minimal. She and her mother would get the results back in one week’s time and had little communication with any provider in between her appointments. Nora received some formula from the Central Pennsylvania Clinic for her son with PKU, who no longer lives at home. But, without continued access to the formula, Nora did not purchase the formula on her own. Cheryl did not take the formula and mostly controlled her own diet, as Amish children have a high level of self management. Her mother told me, “If Cheryl has a bellyache after she eats meat, she knows to stop eating it that day and take a break.” Then Nora read in a paper (she can’t recall which) that people with PKU should take 1-2 enzyme tablets per day; Nora thinks that Cheryls seems to be having fewer bellyaches with the enzymes. She showed me Super Enzymes, found at the local Amish grocer store. Although it did contain enzymes such as amylase, protease, and lipase, it contained no amino acids. Besides going in for bumps, bruises, and immunizations, they don’t see any doctors regularly. When I asked Nora what might help her and Cheryl, she wanted to know more about how to get formula and if it would really be beneficial to Cheryl.

Family Two: “Leaving Things to God”

Levi Yutzy is a bishop and father of six children, two boys and three girls still living. The three girls tested positive for PKU, and Levi described them as having a “touch of PKU” with lower phenylalinine levels consistently. They never received any treatment for PKU, but made adjustments to their diet to avoid proteins. One of his sons, Enos, had a more severe case of PKU and showed symptoms of intellectual disability growing up. Although they gave Enos formula (Levi called it “special milk”), Enos’s levels were consistently higher. Despite Enos seeming a bit slower, he did get married and now has a farm and children in New York. Similar to the Stutsman’s, the Yutzy’s went to see the geneticist in the town 80 miles away; they had Visiting Nurse Association nurses who came to provide formula and draw blood regularly. On one of the visits to the geneticist, Levi saw a room full of “special children.” As he recalled, “I stopped right then and thanked God for what I had and knew that things could be a lot worse.” He decided to “leave things to God” when the children were 13 years old; he was willing to see what would come. The state was providing funding for their formula, but Levi did not want to waste

22 Agora/Spring 2020 state funding or blood draws when nothing changed. Levi thought that the PKU was “over now,” and his children had successful productive lives running farms and raising children of their own. Within a week of my visit to Levi’s home, Enos made a phone call to set up an appointment with Dr. Morton at the Central Pennsylvania Clinic, noting that his symptoms seemed to be continuing to get worse as he got older and he was having a hard time managing his farm. He worried that it might continue to get worse.

Family Three: Uncoordinated Health Services

The Millers are unique to the others as the father, Daniel, worked for an English (non-Mennonite or Amish) roofing company that provided them health insurance. They left the strict Amish groups to become Mennonites with their parents. Their children were tested positive for PKU as infants and referred immediately to a local pediatrician in a nearby town. The local pediatrician never contacted them for a follow up appointment, so they delayed their initial visit. When they saw their local pediatrician, he did not recognize the symptoms of PKU but thought it might be autism. They needed to see Dr. Morton at the Central Pennsylvania Clinic for a different reason for their daughter, and he noticed they might have PKU due to their light hair color (common for untreated children with PKU). Dr. Morton provided instructions to adjust their diet, begin taking formula, and consult with a geneticist. Later that year, they did see the remote geneticist who then was able to oversee their care. They see the geneticist once a year, a local pediatrician for non-PKU routine or well child visits in between, and they send in their labwork once a month to the geneticist. Similar to the Stutzman’s, they don’t receive their labwork results for 1-2 weeks after their levels are drawn. Their insurance covers their formula, so they have no worry about the cost. Because they do access some technology, Mrs. Miller has connected to other families with PKU through a facebook site and finds recommendations for recipes that avoid proteins and answer any questions she has in between doctor visits. Mrs Miller would appreciate a local provider who can oversee her care for PKU; it is cumbersome to have a pediatrician in one location who does not work with PKU, a geneticist in another location, and then remote blood draws in between with delayed results.

Amish Health Care Priorities

These three families characterize several of the inefficient practices in our local health care system that is ineffective to reach and treat Amish families with genetic illnesses such as PKU. With the expectation for families to see a specialist in urban locations for education, care instructions, and follow up, this limits family access to their needed care for these rare conditions. Having a week in between lab draws and receiving results, Amish homestead in Big Valley, Pennsylvania

families are uncertain about dietary changes for a whole week’s time; that would be similar to having a glucose test and not knowing for a week what blood sugar levels are. With local pediatricians unaware of how to follow up with rare genetic conditions, there is a care gap for families when they are visiting these pediatricians for other reasons throughout the year. Without a system to assist non-health insurance carrying families in paying for the necessary formula, families bypass the formula in search of less expensive options, such as the Stutzmans do. Living with and being Amish is a definitive choice that individuals make as young adults. Staying in their homes and close to other Amish members

allows them to make health care decisions in line with their preferred Amish traditions. These three families highlight some Amish cultural factors that impact their understanding and management of illnesses. Families prefer to leave things to God and use natural supplements when possible (Cuyún Carter, et al., 2012). Families make independent decisions about their children’s welfare and their children’s treatments, such as the Yutzy’s cessation of treatment. Families prioritize a productive life of raising a

family and sustaining a farmstead or steady job to provide for the family; when these priorities are met, expensive medical interventions may not be prioritized. Amish families create a unique picture of health advocacy with their cultural approaches of limited technology, avoidance of private or public health insurance, personal transportation by horse and buggy, and minimal community telephones. These Amish families continually bring questions to my mind: How can I help families to access care that is closer to home and well informed? How can I best advocate for families with such different priorities for health care services and health outcomes than myself? What if families don’t want a typical American health service or payment plan?

Health Care Services for Amish Families with Genetic Illnesses

The Central Pennsylvania Clinic is an example of patient-led health advocacy that enables Amish families to receive culturally aligned care, at affordable costs, without dependence on mainstream health insurance. With their new building, Dr Morton will be able to conduct inexpensive PKU blood tests on site that give results the same day because these stand-alone nonprofit clinics can limit the overhead costs of larger institutions. Additionally, the clinic board can work to negotiate with formula companies for a reasonable price for families paying at cost because of the concentrated patient population. Finally, the nurses who live in community with the local Plain Populations will be able to make visits and give education to families as they need throughout their treatments. On our way home one evening from several home visits, a heartbreaking call came to Dr. Morton that a sweet little four-year-old, Evelyn, passed away in the evening. She was playing all day at her grandparents, came home for dinner, and started feeling nauseous with difficulty breathing. After a bit of the fit, she just collapsed and her heart stopped beating. Her parents had witnessed her having a heart attack and could do nothing for her. Dr. Morton assumed she had an arrhythmia. When we arrived at the home, the light in the kitchen shone, and a woman stood inside at the table. What would a mother be thinking right now? Why would a beautiful gift be taken away? In the quiet light, Dr. Morton entered the kitchen and several men were going in and out of the house with hurried footsteps and flashlights. It was 9:30 at night and pitch black in the Amish country without secondary lighting. Her little brother was awake during it all. Just the week before, he was playing in the barn and smiling at me, making finger gestures for me to mimic. Such a playful little boy who likely looked up to his sister just as my son, Liam, adores my daughter, Ruth. Evelyn had a poor heart function that wasn’t responding to treatments. Dr. Morton was disturbed that she had a cardiomyopathy of unknown origin with no known treatment. Despite his studies to find a solution to prevent the cardiomyopathy in the Amish population, he knows he is missing something with Evelyn’s case. I witnessed the anguish in his face and the need to persevere until a solution is found. Through this joined health advocacy model, Plain community members have the opportunity to identify their needs and work collectively together to address them; health care providers who are deeply connected to these communities have the opportunity to align their expertise in an exciting and growing health care field with their passion to care for children and families in need such as Evelyn, the Stutzman’s, the Miller’s, and the Yutzy’s. Doctors Strauss and Puffenberger who work at the Clinic for Special Children (2009) state, “The Old Order communities measure the value of medical research not in grant awards, publications, or academic promotions, but in human terms: alleviation of pain, prevention of disability, equitable delivery, and fair cost. They understand that to translate genetic information into better public health, one must first commit to caring for individuals.” In closing, my call to serve marginalized populations sees great hope in his joined health advocacy model with Plain Populations through these clinics. These models of care not only give me a template for health care options for Amish families with genetic illnesses, but they give me a network to join. This sabbatical project renewed my sense of health advocacy, and challenged my traditional inclination in health advocacy to create options for my patients and communities. Truly, with partnership, patients, families, and communities can be the solution in themselves, creating and sustaining health care services. This, I am sure, will be my next chapter’s scholarship work at Luther College. Angela (Oldenburg) Kueny (‘02, Nursing) and her sister Martha Oldenburg (‘09, Nursing) are pictured in front of the Clinic for Special Children in Strasburg, Pennsylvania, which specializes in genetic health care for Plain populations. IMAGE COURTESY OF THE AUTHOR

References

Amish America (2015) New Clinic to open for special children & adults in Big Valley, PA. Retrieved from https://amishamerica. com/the-new-clinic-for-special-children-inbig-valley-pa/. Central Pennsylvania Clinic (2019) Central Pennsylvania Clinic. Retrieved from http:// centralpennsylvaniaclinic.org/. Clinic for Special Children (2020). Clinic for Special Children. Retrieved from https:// clinicforspecialchildren.org/. The Change Foundation (2006). Amish, Mennonite, and Hutterite genetic disorder database. Retrieved from http://www.biochemgenetics.ca/plainpeople/index.php. Cuyún Carter, G.B., Katz, M.L., Ferketich, A.K., Clinton, S.K., Grainger, E.M., Paskett, E.D., & Bloomfield, C.D. (2012). The use of daily aspirin, nutritional supplements and alternative medications among Amish and non-Amish living in Ohio Appalachia. Nutrition & Cancer, 64(7), 911–918. https://doi.org /10.1080/01635581.2012.714046. Goldsmith, G., Porter, J., & Royce, M. (2019). The Plain Community: Meeting a unique consumer healthcare challenge. The Patient Experience [Blog]. Hubinette, M., Dobson, S., Scott, I., & Sherbino, J. (2017) Health advocacy. Medical Teacher, 39(2), 128-135. Kraybill, D. B., Johnson-Weiner, K., & Nolt, S. M. (2013). The Amish. Baltimore: Johns Hopkins University Press. Mayo Clinic (2020). Phenylketonuria. Retrieved from https://www.mayoclinic.org/ diseases-conditions/phenylketonuria/symptoms-causes/syc-20376302. Morton, D.H. (2012) Roads Taken: Recollections, words, and images from meaningful work. Retrieved from https://www.etown.edu/centers/young-center/files/hmorton-references/ Roads%20Taken.pdf. National Organization of Rare Disorders (2020) Phenylketonuria. Retrieved from https://rarediseases.org/rare-diseases/phenylketonuria/. Plain Community Health Consortium (2020). Retrieved from https://www.plaincommunityhc.org/organizations. Pollack, A. (2007, December) Agency approves drug to treat genetic disorder that can lead to retardation. The New York Times. Retrieved from https://www.nytimes.com/2007/12/14/ health/14genetic.html. American Nurses Association (2020) Advocacy. Retrieved from https://www.nursingworld. org/practice-policy/advocacy/. Strauss, K. A., Puffenberger, E. G., & Morton, D. H. (2012). One community’s effort to control genetic disease. American Journal of Public Health, 102(7), 1300–1306. https://doi. org/10.2105/AJPH.2011.300569. Yohn, M. (2018, February 23). Pennsylvania Dutch: WellSpan tries to close cultural gap in health care. YorkDispatch. Retrieved f rom https://www.yorkdispatch.com/ story/news/2018/02/23/wellspan-dutchliaisons-seek-close-cultural-gap-local-healthcare/364790002/. Young Center (2020) Young Center For Anabaptist And Pietist Studies. Retrived from https://www.etown.edu/centers/youngcenter/.