Healthcare: A balancing act

“She got sick really fast,” Yamilka Hidalgo says when describing her daughter’s first medical procedure. “At 5 weeks, she needed her first heart surgery. It was an emergency surgery. There were a lot of complications, like a lot of them,” Yamilka remembers. “But she overcame it.”

Yamilka’s daughter, now 6, has a genetic mutation that affects her heart and has required multiple surgeries and medical procedures over the years. Yamilka describes how scary the first surgery was for her, especially as it happened during the pandemic. “That was in 2020, right in [the] pandemic, right when it was COVID, [everything was] shut down, I was at the hospital, so that was even more traumatizing.”

Originally from the Dominican Republic, Yamilka moved to New York in 2005 with her father, her sister, and her brother. She was raised in Queens. Yamilka has the same genetic condition as her daughter, which she says she inherited from her dad’s side of the family. She herself has had to undergo treatment for her condition. “I had procedures done in [the] Dominican Republic when I was a baby and growing up, and then when I came here to the United States.”

Insurance coverage for one

To Yamilka, the quality and costs of her relationship with doctors are always front and center. These are things that she has to think about on a daily basis. Recently, her daughter was undergoing another round of tests to understand if she had to have surgery again. “She just had a CAT scan on Friday. I’m waiting for the doctor, who needs a response from the surgeon, to see if they’re going to operate again or not.”

But Yamilka is thankful that her daughter has health insurance. Her daughter has insurance coverage under the Child Health Insurance Program (CHIP), which provides low-cost, comprehensive health coverage to uninsured children under age 19 in families with incomes too high for Medicaid but too low to afford private insurance. In 2020, approximately 32% of children enrolled in Medicaid or CHIP were Hispanic, the second largest racial/ethnic group to benefit from the program.

In New York, where her daughter was born, the program covered 100% of her daughter’s healthcare costs. When they moved to Pennsylvania, where they have lived for the last 5 years, Yamilka had to go back and forth with the insurer in order to avoid copays. Currently, Yamilka does not have to pay for her daughters’ medical costs, because the insurance covers all of them, and Yamilka is grateful for that.

The price of not having coverage

When asked about her own insurance coverage, however, Yamilka tells a different story. Despite having a chronic heart condition that requires monitoring and frequent checkups, Yamilka has not been able to get the care she needs in about 3 years. “I cannot afford Medicaid or insurance, and I haven’t been able to check myself, so I don’t know how I’m doing.”

She has attempted to obtain service at a free clinic, but quickly learned that they do not have what she needs to evaluate her heart. “I saw a cardiology team, however, [there’s only] so much they can do, because obviously it’s free and the resources they have, they didn’t have an EKG, but they told me that I needed to get an echo. But I haven’t been able to.”

Yamilka’s story echoes that of many Latinos across the country who remain less likely to be insured than non-Latinos. Yamilka is among the 13% of Latino parents that, according to our survey, were not insured. Like the majority of Latino parents who responded to our survey, Yamilka expressed that it is important for the government to address healthcare costs. Yamilka knows family members and friends that like her, are struggling to obtain appropriate healthcare. She believes that the government should provide more options for people to qualify for health insurance and low cost healthcare, especially for people who have chronic medical conditions.“They need to administrate things differently,” she says.

Coverage for the future

When asked to consider her daughter’s future, Yamilka expresses concern about whether her daughter will continue to have access to the healthcare she will need long term to continue to treat her chronic medical condition. “Not knowing, one day…..that she will have access to free Medicaid, or just health insurance in general, so that she can check herself…,” that is what worries Yamilka.

At the same time, Yamilka remains positive about her role in helping guide her daughter towards a brighter future. “I see it more as her future’s in my hands.” she says. “Me guiding her for her to know what’s right, what’s not…. that’s how she will have a good future, or at least I hope so.”