May 13, 2014
In the mid-1990s, nurse Julia Means encountered an elderly African-American man whose wife had died and whose adult children were living out of state. One of his children had come back to visit and had taken him to St. Mary’s Hospital, where he came under Means’s care in the medical intensive care unit.
“In the course of examining this man, I took his sock off, and his toe fell off,” Means said. “He was a diabetic who was untreated and he had a gangrenous toe that had been dead for awhile.”
Though she had seen many patients suffering complications of diabetes, this man’s lack of care and its consequences shocked Means. “It disturbed me so much that this was going on in my community,” she said.
Diabetes, a disease that disproportionately strikes poor and minority individuals, has more than doubled in the U.S. since 1999. According to the latest data from the Centers for Disease Control and Prevention, 18.8 million American adults have been diagnosed with diabetes and another 7 million have the disease but are undiagnosed. Together, that represents 8.3 percent of the U.S. population.
Although the City of Milwaukee does not track diabetes, 13 percent of Milwaukee County residents have the disease, a higher rate than the nation and the state.
The consequences of untreated diabetes include heart, kidney, eye and dental disease; stroke; nerve damage, circulation problems and infections of the feet that can lead to amputation; and death. Like Means, those who work with low-income populations are losing an uphill battle in identifying and treating patients.
In the course of examining this man, I took his sock off, and his toe fell off. He was a diabetic who was untreated and he had a gangrenous toe that had been dead for awhile.
After her experience in the medical intensive care unit, Julia Means decided she was tired of trying to rescue critically ill patients and wanted to try a different approach. “I thought about how would it be if I would do the teaching before they got to be critical, to try to prevent a lot of that critical stuff from happening,” she said.
Means also wanted to add a spiritual component to her work, so she enrolled in Marquette University’s parish nursing program. Upon completing the program, she started working with St. Mary’s (now Columbia St. Mary’s) Community Services department. For about five years, she offered weekly chronic disease screenings to people without health insurance at a food pantry, a senior citizens home and three central city churches.
At one of the screening sessions, Means encountered a man in his 40s whose blood pressure was so high that she sent him to the hospital emergency room. He was treated and sent home with a prescription, but, unbeknownst to Means, he didn’t have the money to buy the medicine. She later discovered he had suffered a major stroke.
“When I found out, I was quite upset,” Means said. “I went to (Community Services Director) Bill Solberg and asked, ‘What good is it to do all these screenings if I can’t prevent (life-threatening strokes) from happening?’” Solberg took her words to heart and with support from the Medical College of Wisconsin came up with a plan to establish Community-based Chronic Disease Management (CCDM) clinics in low-income neighborhoods.
The clinic in the basement of Ebenezer Church of God in Christ Church, 3132 N. Martin Luther King Drive, is one of four that Columbia St. Mary’s opened to address the dramatic rise in diabetes.
According to Kim Sherard, the nurse practitioner in charge of education and medication management at the clinics, “We do a lot with diabetes, hypertension (high blood pressure) and high cholesterol, which usually go hand-in-hand. The (fact that patients) receive medications at no cost is huge.” The CCDM clinics offer limited services, Sherard said, “so you do what you can with what you’ve got” to keep people out of the hospital, she explained.
Larry Hopkins, who came to get his blood sugar level checked and pick up his medication on a recent Wednesday morning, learned he had diabetes about six years ago. Hopkins sought medical attention after he noticed that he was losing weight and had experienced a sudden decline in vision. Hopkins had medical insurance at the time so he was able to see a doctor, who diagnosed him with type 2 diabetes.
Since then, Hopkins, a resident of the Menomonee River Hills neighborhood on the Northwest Side, has visited the clinic at Ebenezer Church every month. The clinic’s 9 a.m. start time allows him get in and out in time to drive to his full-time department store sales job, where he starts at 10.
Hopkins, 56, is married with five adult children. He said his income has dropped to almost half of what he earned at a factory job he lost in 2008. Unemployed for more than a year, he delivered newspapers for a while and then got a part-time job at Home Depot. He is now on medical leave due to injuries he suffered in a motorcycle accident.
Since 2008, except for a few months last year before Home Depot stopped covering part-time employees, Hopkins hasn’t been able to afford medical insurance. Recently, he signed up for BadgerCare at the Ebenezer Church clinic.
When asked what the hardest part of having diabetes is, Hopkins said, “Just having diabetes, period. It’s a scary process because a lot of my family, they died of diabetes.”
Hopkins said he is the only one of nine siblings who has the disease. He is not overweight and believes it was brought on by the stress of working with hostile co-workers at the factory.
Hopkins has given up many foods he likes in order to control his blood sugar, but he said he’s not sure what he should and should not be eating. The clinic staff recommended that he see a dietician at a local hospital, but he said his work hours do not permit that.
Though Hopkins would like to test his blood sugar daily as the clinic staff recommends, he can’t afford to buy that many testing strips. On the Wednesday morning he visited the clinic, his blood sugar level measured 266. The recommended level is 70 to 180, depending on when the patient last ate.
In addition to testing Hopkins’ blood sugar, clinic staff tested his pulse, blood pressure and cholesterol level. He left with a month’s supply of oral diabetes medications and a statin drug. He said he didn’t know why the statin drug was prescribed, but statins are typically used to lower cholesterol.
“People in poverty have higher rates of diabetes,” said Dr. Steven Magill, endocrinologist and professor at the Medical College of Wisconsin. “They tend to have higher rates of obesity, poor nutrition and poor access to healthy foods like fresh fruits and vegetables,” he said. He attributed that to a dearth of full service, high-quality grocery stores in poor neighborhoods. “It’s all convenience stores and it’s all junk food and soda,” he said.
Magill also noted that smoking rates are higher among the poor. “Smoking contributes to insulin resistance and people who smoke tend to have high blood pressure. All of that, the stress of inner-city living and cutting back on physical education in school contribute to weight gain and high rates of diabetes,” he said.
“Diabetes continues to increase at alarming rates in Wisconsin and across the nation, largely due to obesity and physical inactivity,” according to a Wisconsin (DHS) report. In addition, DHS estimates that one-quarter of county residents have pre-diabetes, a condition in which individuals’ blood glucose levels are higher than normal but not high enough to be classified as diabetes.
According to Means, some practitioners lack cultural sensitivity and communication skills, which drives away low-income patients. Citing a particular doctor who complained to her about the difficulty of treating African-American patients, Means acknowledged his frustration but noted that people won’t come back to a doctor who makes them feel guilty or unworthy for having a disease.
Practitioners expressed frustration with their low-income patients’ lack of consistency in taking care of themselves.
“A lot of our patients come sporadically and I will say, ‘You know, we’re giving you the meds for free. We’re drawing your labs for free. What else can I do (to make you take care of yourself)?’ They will often respond that they don’t have sick days and they work during clinic hours,” Means said.
When she knows that scheduling is a barrier to care, she arranges to be available at a different time so patients can get their medications, she added. Though the CCDM clinics don’t drop patients who miss appointments, other clinics do, Means said.
The CCDM clinics are working to overcome “a disengagement with the health system” where patients don’t feel welcome in a setting where the staff is mostly white, said Solberg. “They may not trust that the system actually cares about them.” But the CCDM clinic staff members treat patients as equals and so patients feel comfortable there, Solberg said. Hopkins, who is black, confirmed that he trusts the clinic staff.
Sherard noted that among the many barriers to care, the primary one is lack of insurance. “I see a lot of patients who are working poor. They work but they can’t afford insurance so they end up using the free services,” she said.
Other barriers are the inability to pay for childcare and a lack of transportation, Sherard said. “You have people who are indigent, who don’t even have money to catch a bus.” They may not have anything to eat, so their main concern is finding food. Seeing a doctor is on the bottom of their priority list, she added.
Kim Reyes, 55, grew up both in the Native American community in Milwaukee’s Muskego Way neighborhood and on the Oneida reservation near Green Bay. A proud member of the Oneida tribe, Reyes speaks about traditional culture at hospitals, colleges and universities around the state. She is employed as a special education advocate for American Indian children, acting as a liaison between their families and the school system.
Reyes’ adult son and his family live on the Oneida reservation and she and her husband visit regularly, she said. “We go up every fall and get all of our traditional medicines for the winter.”
A longtime caregiver first to her own children and then to many foster children, six of whom currently share her home, Reyes hasn’t accepted chronic disease easily. Although her husband was diagnosed with diabetes about 10 years ago, and she has felt the disease’s characteristic numbness in her feet for many years, Reyes couldn’t believe it when she received the diagnosis five years ago.
“After I was diagnosed with diabetes, I waited a long time before I would let them prescribe a med for me to help it because I would rather see if there’s something more natural I could do than add another pill to my daily regimen,” she said. Although she now takes three prescribed oral medications for diabetes and one for high blood pressure, Reyes prefers to use traditional plant-based medicines for colds and other minor illness because she believes “they enter the body more easily and bring less toxicity.”
The financial burden of their diabetes and her husband’s heart disease are eased somewhat by benefits they receive through tribal membership. They see medical providers at the Gerald L. Ignace Indian Health Center, 1711 S. 11th St., and when they plan far enough in advance, they can order free medicines from their respective reservations. Like the CCDM clinics on the North Side, the Ignace Center prescribes older medicines that cost less but have proven effectiveness.
Reyes, who abhors needles, doesn’t test her blood as often as she should. She said she wishes the center were able to get more modern, less painful blood sugar testing equipment.
Relieved to have adequate health insurance coverage through Social Security and BadgerCare, Reyes said there were years when she and her husband could not get insurance because of pre-existing conditions.
A group of Spanish-speaking diabetes patients meet weekly with a nurse and a nutritionist at the Sixteenth Street Community Health Centers, 1032 S. Cesar E. Chavez Drive. Some of the challenges they face in managing their diabetes are cultural, rooted in beliefs prevalent in the societies into which they were born, as well as differences in language and communication style.
“In Mexico and Puerto Rico you don’t go to do the physical. You go to the doctor because you are sick,” said group facilitator Eida Berrios, summarizing the words of several participants. Berrios, who is Hispanic, a nurse and certified diabetes educator, said prevention is not a part of their culture.
Group member Ramon Cervantes agreed. “There is a lack of education about going to the doctor. There is help but we’re embarrassed to look for it,” he added.
Cervantes and other group members said that Hispanics generally don’t like to admit that they have diabetes because they don’t want people to feel sorry for them. For men especially, it’s a matter of strength and pride. Several group participants expressed frustration with language barriers and feeling unwelcome or disrespected because doctors seem rushed and it’s difficult to see the same doctor at every visit.
Ellyn McKenzie, vice president of community relations at Sixteenth Street Community Health Centers, said that the clinic strives to have patients see one primary care provider to give them the best quality care. However, it is sometimes difficult for patients to be seen by their own doctor on short notice, she explained. Appointments are scheduled for 15-20 minutes, with annual exams and new patient exams scheduled for 30 minutes.
It’s also difficult for diabetics with low-paying jobs that have inflexible hours and no paid sick days to find time to get medical care.
Hilda Vera said her husband, a chef, often works 8- to 10-hour shifts with no breaks and no set schedule. “If he misses one day at work he will be fired and if the boss says he has to stay, then he has to stay.” These conditions make it impossible to plan ahead for medical appointments. It’s also difficult to find time to get the education needed to manage the disease.
Group member Victoria Ruiz complained that doctors do not speak Spanish. However, McKenzie said that patients can be matched with a Spanish-speaking doctor and the clinic provides translators for Spanish and other languages.
McKenzie also noted that doctors “depend very heavily on the educators and nutritionist to spend larger periods of time with patients to review the specifics of diet, (how to use) insulin and other information.” The doctor’s role includes explaining the physiology behind the disease and its symptoms; warning of complications related to uncontrolled diet management; monitoring lab values, medications and symptoms; and encouraging lifestyle changes.
In Mexico and Puerto Rico you don’t go to do the physical. You go to the doctor because you are sick.
Most of the patients in the group said they had minimal or no insurance, although one man said he is covered by Medicare. Though the health center charges on a sliding scale based on income, the group members said their diabetes medications, which range from $50 to $500 per month, create a financial burden.
The cost of healthy food is also an issue. “Diabetics need a very special diet. We have to eat healthy food without grease. We can’t eat noodles. We can’t eat white bread. We have to eat whole wheat bread. We have to eat lean meat. For us, all that is expensive,” Vera said.
Most of the group members said that learning to eat right and staying on a healthy regimen is very challenging. Berrios translated for patient Maria Tolentino, who addressed the question of giving up traditional foods and focusing on moderation.
“When you come to the doctor and he says, ‘No more tortillas, no more rice, no more, no more, no more, no more,’ it is extremely hard to do the transition. The more [he says] no, the more that you want and that aggravates the situation.”
Certain factors — race, income and access to healthy food — serve as indicators for diabetes risk. There is no data on the number of adults in Milwaukee living with diabetes. However there is data on the risk indicators within the city of Milwaukee. Showing where these indicators are most prevalent shows where people are most likely to be at risk of developing diabetes.
The red dots on the map represent specialized clinics created to help manage the diabetes epidemic in Milwaukee.
More than one mile from grocery store
More than a half-mile from grocery store
Sources: U.S. Census Bureau (data on median household income and race); U.S. Department of Agriculture Economic Research Service (data on food access).
Searchable Map Template by Derek Eder.
Diabetes is a disease in which levels of glucose (sugar) are too high in the blood. Everyone’s blood has some glucose in it. Blood glucose increases after eating but returns to a normal range after one or two hours. The body needs glucose in the blood for energy, but too much sugar in the blood can lead to poor health.
Glucose is carried by blood to all the cells in the body. The hormone insulin helps glucose from food get into cells.
Insulin is created in the pancreas, near the stomach and then released into the blood.
If the body doesn’t make enough insulin, or if the insulin doesn’t work properly, the glucose cannot get into the cells. Instead, it stays in the blood, causing blood glucose levels to rise.
In type 1, the pancreas no longer produces insulin and blood glucose is unable to enter the cells to be used for energy.
In type 2, either the pancreas does not make enough insulin or the body is unable to use insulin correctly. Type 2 diabetes is the most common form and accounts for 90 to 95 percent of all diagnosed cases of diabetes.
Type 2 diabetes has a stronger link to family history and lineage than type 1, although it also depends on environmental factors. Lifestyle choices also influence the development of type 2 diabetes. Diet, exercise and weight have a strong effect on the development of type 2 diabetes. Race and ethnicity also play a role in addition to age.
Early detection and treatment of diabetes can decrease the risk of developing complications of diabetes. Symptoms include: urinating often, blurry vision, cuts or bruises that are slow to heal, tingling, pain or numbness in the hands or feet, feeling very thirsty or extreme hunger and extreme fatigue.
Diabetes can cause long-term damage to the body. Since diabetes affects blood vessels and nerves, it can involve any part of the body. Complications from diabetes can be avoided by strictly controlling blood glucose levels.
People with diabetes must be responsible for their day-to-day care, and keep blood glucose levels from being too low or too high. Healthy eating, physical activity and blood glucose testing are the basic treatments for type 2 diabetes. Many people also require oral medication, insulin, or both to control blood glucose levels.
Diabetes prevention is as basic as eating more healthfully, becoming more physically active and losing a few extra pounds. Quitting other unhealthy activities like smoking will also also decrease risk of diabetes. Making a few simple changes in lifestyle can help avoid the serious health complications of diabetes down the road.