Isaiah Newsome likes to play sports and hang out with friends, like any 17-year-old. But most of the time these activities are cut short as his body, stricken with sickle cell anemia since birth, fills with pain.
“It just kind of starts and holds me back from certain things I want to do, that other kids my age do,” Newsome, of Des Moines, said. “It just randomly happens. There’s no really preventing it or seeing it coming.”
Getting adequately health care all of these years has not been easy but at least he has had insurance, even though his mother had been without insurance for some time until the past year. Other African American families in Iowa with low incomes do not have insurance, adding to difficulties they face getting health care.
A University of Iowa Public Policy Center study in December 2013 put the problem into perspective, showing that African American, and Latino Iowans as well, do not have the same access to adequate health care that Asian and white Iowans have.
The Public Policy Center went on to say in its report, which used data from a child and family health survey conducted in fall 2010 and spring 2011, that Iowa’s African Americans and Latinos are more likely to need medical care, even though they are more unlikely than Asian or white Iowans to receive it.
The disparities are a result of varying factors, the Public Policy Center report said, including a lower quality of care in general, higher than normal unmet need for care, poor diets, a higher likelihood to seek care from a hospital emergency room, and fewer safe and supportive neighborhoods.
Social aspects, including someone’s poverty level, neighborhood, culture or race, account for 90 percent of what affects health status, the study’s authors concluded.
“The causes of health disparity vary but we need to look beyond health care,” said Dr. Peter Damiano, director of the Iowa Public Policy Center’s director and also its health policy research program. “Iowa needs to be looking at behavior, genetics and environment.”
Disparity is defined as a lack of similarity or equality.
Newsome’s family is living one of the many instances of low-income African Americans who work through challenges of receiving health care in Iowa. His mother, Charice Williams, did not have health insurance coverage until she signed up under the Affordable Care Act in 2013, although her son has had some coverage through a policy his father has. [ED. NOTE: Information about Newsome’s father’s policy was added after this story initially was published.]
“Even though I am low income, I am still over income for things. Everything goes by your gross income instead of what you really bring home as your net pay,” Williams, who works part-time for the city of Des Moines so that she can spend time caring for her son, said.
The Public Policy Center study focused on the several factors that create a disparity, including overall health status, insurance coverage, need and access to care, lifestyle and family and social environment.
The study pointed out that more than 90 percent of Asian and Pacific Islander and white children in Iowa had an overall health rating of “excellent” or “very good.” This compares to a 76 percent health rating in the same categories for African American Iowa children and 69 percent for Hispanic children in the state.
“Disparity can be because of less insurance coverage, less financial access, neighborhoods or environments with less health care providers, lifestyle, language and cultural barriers,” Damiano, who also is professor of preventive and community dentistry at University of Iowa, said.
A LIFETIME OF DEALING WITH ILLNESS
Isaiah Newsome was 3 years old before Charice Williams learned that the seizures he was suffering from were related to sickle cell anemia. Sickle cell anemia is a genetic disease that primarily afflicts African Americans in which there aren’t enough healthy red blood cells to carry adequate oxygen through the body. Red blood cells in people with sickle cell disease are crescent or sickle shaped instead of the normal round shape that flows easily through blood vessels.
“His blood cells are sticky, meaning they don’t flow through the blood stream very well,” Williams said in an interview at the family’s home in December. “They sometimes build up and cause traffic jams, which stops blood flow in parts of his body, causing pain.”
Newsome has been making at least two trips a month for stays at Blank Children’s Hospital in Des Moines because of chronic pain. The family found help there after unsatisfactory attempts with other doctors.
“Usually I start hurting in my legs, arms or back and the pain just progresses,” he said. “I try to handle it as well as I can at home, but it usually gets to a point where it’s intolerable, so we go to the hospital.”
According to the National Heart, Lung and Blood Institute, sickle cell anemia affects 70,000 to 100,000 people in the United States. The disease is found in 1 of every 500 African American births, the institute said.
No cure exists. Sickle cell anemia is treated with strong pain medications and fluids. Newsome takes a minimum of 22 pills a day, although that number can go up depending on how persistent and extreme the pain is.
Regularly attending school is difficult because the disease is chronic. Newsome attends school at Blank Children’s Hospital through a Des Moines Public Schools-run accelerated program that condenses the curriculum for young people with chronic illnesses and who miss a lot of school because of being in and out of the hospital.
You must apply and meet the criteria. Those who are accepted attend class for two hours a day, Mondays through Fridays.
“When you think about math, it’s a subject that has building blocks,” Williams said. “If you’re someone like Isaiah who ends up missing a week or more at a time, you’re missing all of those steps. The class is not going to stop and wait for him to catch up.”
Newsome was to graduate early – this month – so that he can get a bone marrow transplant in early 2015.
Williams supplements her pay as a part-time city worker with Title 19 benefits through the state, which pay for her son’s medication. A single parent, she is the family’s sole income provider but unable to work full time because of the time she spends helping Newsome with his health issues.
“Isaiah’s last hospital stay was 22 days; I haven’t received that bill yet,” Williams said. One stay was nine weeks and cost close to $900,000, she said. “It was crazy. I couldn’t believe it when I saw the amount.”
Williams said she is fortunate to have Blank Children’s Hospital’s medical team but the care comes at a price. The family has to make difficult decisions when it comes to money each month.
“My finances are always stressed. There’s not a time they are not,” Williams said. “When he’s really sick and I can’t get away from the hospital, every day I’m not able to go to work, I’m not getting paid.”
LIFESTYLE AFFECTS HEALTH
Williams said many African Americans struggle maintaining a healthy lifestyle because preventive measures are not easily available for those who do not know where to gain access to those measures.
“I think a lot of people don’t have insurance so they don’t go to the doctor,” Williams said. “I think co-pays are also an issue. If you don’t have the money for the co-pay, then you’re not going to go. People look at it and say, ‘I’ve got $20, am I going to spend it on food or am I going to spend it on a co-pay to go to the doctor?’”
The Public Policy Center report said 3 percent of Iowa’s African American children were not covered by health insurance. The rate for Iowa’s white children was 2 percent. The rate jumped to 10 percent for Latino children in Iowa, the study showed.
Six of every 10 African American children in Iowa were in public insurance programs like Medicaid or hawk-i programs at the time of the study. Five of every 10 were Hispanic. Between one and two, on average, of every 10 white Iowa children were in the program.
That lack of insurance drives the trend of going to an emergency room instead of a doctor. But using emergency room care as the only method of maintaining health is a reactive measure, rather than a preventive one.
Poverty-based problems are move prevalent for African American Iowans, even though they comprised 3.3 percent of the state’s population in 2013, because 35.5 percent were living in poverty in 2012, the most recent figures from the Iowa Data Center show. That poverty rate was close to triple the 12.7 percent for white Iowans, U.S. Census Bureau estimates show.
“We are seeing a better trend now with national health care, but individuals still don’t think about going to the hospital or getting adequate care, and that is when we decided to open our own clinic,” said state Rep. Ako Abdul-Samad, D-Des Moines, founder and executive director of Creative Visions, a non-profit urban program in northwest Des Moines with anti-violence, educational and health programs for low-income people.
“Iowa is in a unique position. We can become a leader for other states and start an education campaign on health care,” Abdul-Samad said.
“We need to reach out more to minority communities, not just when we talk about education or just a billboard or commercial, but someone with boots on the ground – an outreach worker who is educating individuals about health care,” he said.
Creative Visions employee Cynthia Hunafa said poor nutrition and a lack of knowledge about its impact play a big role in the health problems people in poverty face. “It’s easier to buy food at Family Dollar and get hot dogs, Cheetos and pop to feed your kids than it is to go to a Whole Foods,” she said.
“There are small pockets of African Americans secure in their jobs and have health coverage. Then there is a larger segment that isn’t secure and finally a huge segment that is scrambling to get things together,” Hunafa said.
Certain medical conditions are prevalent in African Americans. Besides sickle cell anemia, diabetes and high blood pressure are more prevalent in the African American community than the white community.
“Because sickle cell effects African Americans more so than any other group, and because we’re in Des Moines, Iowa, there is a very small percentage of people with the disease here,” Williams said about finding care for her son. “We were dealing with doctors that didn’t know what to do, they didn’t know much about the disease at all.”
Damiano, from the Public Policy Center, said people in certain racial groups, such as Latinos and African Americans, also go untreated because they have to work through complicated cultural differences. “It’s not as easy as giving someone a pill and it’s done,” he said. “It’s a challenge for providers to assess what the patient needs based on cultural barriers and lack of quality care over long periods of time.”
But while health providers need to be knowledgeable to treat complicated patients, patients also need to be more educated about the health system, sources interviewed by IowaWatch said.
“The under-served are unfamiliar with the health system, which makes it difficult to navigate and gain access,” Betsy Richey, data management program manager in the Iowa Department of Public Health’s Bureau of Communication and Planning, said.
“The goal of studying health care disparity is to get a sense of health in Iowa, to see what is going well and what we need to focus on to improve,” Richey said.
CULTURE AND LANGUAGE BARRIERS
Non-native Iowans tend to have a language barrier with providers. Also, “beliefs and customs are different, which prevents some cultures from trusting providers or going for medical care,” Joan Jaimes, outreach counselor at Marshalltown Community College, said.
“Hospitals need to be more culturally competent in order to better evaluate the under-served population,” Jaimes said.
However, “hospitals are not all to blame,” she said. “The Hispanic culture is less healthy in general, not because of hospitals or doctors, but because of the way we eat and our customs, making us prone to more diseases like diabetes that go untreated.”
Lucia Santillan and Iraima Franqui, of Fort Madison, can tell you about language barriers when getting health care in Iowa. “I’m used to receiving weird looks from people in the Midwest because of my accent or when I speak Spanish,” Franqui said in Spanish, with Santillan translating as they sat in a Hy-Vee in Burlington this past summer.
Iowa was 5.5 percent Latino in 2013, Census Bureau estimates show. Latino Iowans’ poverty rate was double that of white Iowans, at 26 percent, in 2012, the most recent figures available from the Iowa Data Center show.
Santillan, 27, and Franqui, 43, lived in a homeless shelter as recently as early 2013 but were operating a cleaning business after moving to Iowa almost two years ago.
Franqui said her English is not 100 percent so Santillan translates for her when they go to the Great River Quick Care clinic in Burlington to keep their costs down. They also have gone to hospital emergency rooms for care.
“In poverty, without insurance all you have left is low income clinics and the emergency room. Iowa has a lot more low-income clinics than Nebraska, which is what we can afford,” Santillan said. “The clinics in Burlington work with us to start a payment plan if we need to.”
The couple said they cannot afford insurance but also reveal a truth for their particular circumstance. “I prefer to not have insurance because the clinics work with you so well in Iowa to make payments without insurance,” Santillan said.
RESULTS WITH OPPORTUNITIES
Isaiah Newsome hopes things start looking up 2015. He and his mother are to go to the University of Minnesota Amplatz Children’s Hospital in Minneapolis in January so that Newsome can have a bone marrow transplant. He is to have chemotherapy to wipe out his diseased blood cells, giving new ones a chance to form normally and stop his constant pain. [CORRECTION MADE: The location of Newsome’s transplant was corrected in this story after the initial report that was published had a different location.]
The family learned in fall 2014 that a donor was available for Newsome. It came as a surprise to Williams, as they had only been actively searching since January 2014.
“One of the issues we find in the community is people of African or Latino dissent are not registered on the bone marrow registry,” Williams said. “I think it’s just a lack of knowledge. And there’s a fear of the medical community in the African American community – a fear of the unknown because that preventative care has never been a part of our community, so people are afraid to go to the doctor.”
The Minneapolis trip is to last six months as long as everything goes well. “Within that six-month time period, my bills here won’t stop,” Williams said about her obligations back home in Des Moines. “I still have all the same stuff going on that I would if I were there, but the difference is I won’t be working at all.”
Williams said she receives $400 a month through Social Security disability to help with Newsome’s costs, but after 30 days in Minneapolis that money is at risk of being cut off because Newsome will be lodging and eating at a hospital instead of predominantly at home.
With this in mind, the family has a Go Fund Me account online and friends have held fundraisers in their name to help with the extreme costs. The transplant is a serious procedure, but the family has high hopes that the pain will cease once they return to their Des Moines home.
Then Newsome can take aim at his next goal: attend college.
This IowaWatch story was published by The Des Moines Register, The Gazette (Cedar Rapids, IA), The Hawk Eye (Burlington, IA), The Courier (Waterloo-Cedar Falls, IA), Sioux City Journal the Mason City Globe Gazette, the Black Christian Network, the Kaiser Health News morning briefing and Macroinsider.com under IowaWatch’s mission of sharing stories with media partners.