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Caring for Kids with Type 1 Diabetes in Undocumented Families

-Craig Idlebrook/GluCraig

Some time ago, Dr. Daniel DeSalvo found himself growing concerned about the rising HbA1c levels of a 16-year-old patient at his endocrinology practice at Texas Children’s Hospital in Houston. It wasn’t unusual for teenagers to struggle with blood glucose management, especially with social pressures and hormonal changes. However, this patient was facing an added  barrier: his family’s immigration status.

“His mother was undocumented, had lost her job, and was facing deportation,” Dr. DeSalvo said. “This 16-year-old had to become the breadwinner for his family.”

The teen, an American citizen, began to work as a pizza delivery driver every day after school and all weekend to help his family. His grades declined as his blood glucose levels rose.

Dr. DeSalvo and social workers at the hospital eventually connected the family to a charity that helped the teen’s mother gain legal status and work. Her son could focus once more on school and his diabetes management, and his HbA1c dropped 2.5 percentage points in just six months.

“I think there was so much stress from all that, and it really impacted him on so many levels,” he said.

This story is a familiar one for Dr. DeSalvo and his team. The hospital houses one of the largest pediatric care centers in the country and often serves many patients who are undocumented–or, at least, who have parents who are undocumented. Caring for this population requires a lot more than advice on blood sugar management.

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Dr. DeSalvo, who is also an assistant professor of endocrinology at the Baylor College of Medicine, considers tailoring care to the individual needs of patients essential to his practice. Because he has type 1 diabetes himself, he knows the importance of such a personalized approach.

To help, he has become active in his hospital’s quality improvement initiatives. This, in turn, has led him to work with the T1D Exchange Quality Improvement Collaborative, a network of 10 diabetes centers focused on improving care in the clinic for people with type 1 diabetes. The Collaborative is currently focused on devising ways to help high-risk patients. Undocumented children, especially teens, fall into this demographic.

The state of Texas is home to roughly 1.5 million undocumented immigrants, according to an estimate from the Migration Policy Institute. Statistics suggest this population underutilizes the healthcare system. According to an analysis of 188 studies published in the International Journal of Health Services, immigrants make up 12 percent of the U.S. population but are responsible for only 8.6 percent of healthcare costs. Undocumented immigrants make up 5 percent of the population, but are responsible for just 1.4 percent of medical expenditures.

Some of this, researchers suggest, is because undocumented immigrants trend younger than the U.S. population. Investigators also say that this population faces more daunting barriers to affordable health insurance than the average American. A 1996 federal law was passed that prohibits many federal public health insurance programs from serving undocumented adult immigrants. Many of those restrictions were left in place with the passage of the Affordable Care Act, according to a Modern Healthcare report.

In this vacuum, states and communities have created their own programs to provide health insurance and healthcare to undocumented immigrants. Even states like Texas (which draws a hard line on immigration policy) have found that these programs are necessary to stave off otherwise tragic and costly medical disasters.

Dr. DeSalvo and others must navigate a patchwork of programs to provide care to undocumented children with type 1 diabetes. The hospital’s social workers steer income-eligible families toward a state-run health insurance plan which covers expenses for children with chronic conditions like type 1 diabetes, regardless of their immigration status. The team can also provide stopgap diabetes supplies until the families are enrolled.

The problem often arises when children grow up and age out.Texas does not offer a similar program for undocumented adults, and these young adults are not eligible for most insurance plans.

“Things like purchasing medications that are essential to diabetes management can be a real challenge,” Dr. DeSalvo said.

These young adults must rely on community health programs or figure out creative solutions to find affordable health insurance. For example, one social worker at the hospital encouraged an undocumented young adult to enroll in a community college class to obtain access to the college’s affordable health insurance.

Others are not so lucky. One undocumented young man with type 1 diabetes worked with Dr. DeSalvo to bring his blood sugar levels down. His HbA1c improved from above 9 percent to 7.2 percent, and he avoided DKA episodes for two years. Once the young man aged out of the children’s health insurance program, however, he could no longer afford pump supplies. Relying exclusively on cheaper, over-the-counter insulin, his HbA1c rose again and his diabetes management worsened.

Dr. DeSalvo can only tell the stories of the children with type 1 diabetes he sees at his practice, and the question remains of what happens to those in more remote areas of Texas who may go to hospitals with fewer resources.

Healthcare providers like Dr. DeSalvo also cannot reach families who won’t seek care because of concerns over their immigration status. For example, a social worker at Texas Children’s described working with a father who refused to apply for the state’s subsidized health insurance program for fear of appearing a burden on the system.

“We have had examples of patients who have ended up in DKA because they don’t have access to health care and medications,” Dr. DeSalvo said. “If they had been able to see even a primary care provider, it probably would have been picked up sooner.”

These fears among immigrant communities are becoming more widespread in light of President Trump’s anti-immigration rhetoric and hardline immigration policies, according to immigrant advocacy organizations. A Houston Public Radio report chronicled that two-thirds of U.S. health clinics surveyed by the Migrant Clinicians Network say their immigrant patients are reluctant to seek care. At the same time, there has been a rise in the number of no-shows at these clinics since the 2016 election.

Dr. DeSalvo has noticed how the election has changed the conversations he has with immigrant families. “They have been more reluctant to talk about the issue at all,” he said.

These conversations may become even more difficult to have if proposed changes in health care policy and immigration policy take effect in 2019. Part 3 of this series will explore how these proposed changes may impact healthcare for both undocumented and documented immigrants with type 1 diabetes in the United States.

To read all three parts of this series, click here

T1D Exchange takes no stance on current or proposed immigration policies. This series is designed to profile the challenges of type 1 diabetes care for a group of people in the United States who are more likely than the average population to have uncertain access to medical care.

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