By the time the pain in Julio’s abdominal area had gotten so bad that he rushed to a Chicago emergency room, doctors diagnosed him with third stage stomach cancer.
He remembers his wife crying when they got the news in late 2022. Julio, who asked that his full name not be published, started to go through the math of the diagnosis.
“Maybe she was thinking it was a terminal illness for me, that she could lose me,” Julio said in Spanish. “But I was thinking about the doctors, the payments, how were we going to pay for rent, food.”
Julio, 48, has lived in Chicago for about 30 years without legal status. His job at a dry cleaners didn’t provide him with health insurance or sick days. But he and his wife had just applied for the state’s Health Benefits for Immigrant Adults, which provided health insurance for immigrants like him who were between the ages of 42 to 64.
The coverage from the HBIA program allowed Julio to undergo surgery and receive chemotherapy for the past two years.
He’s among nearly 33,000 people without legal status across Illinois — including almost 22,000 in Cook County — who could lose their health care coverage this summer under a program that Gov. JB Pritzker has proposed slashing from the state budget.
Once held up by Democrats statewide as a beacon of progressive governance protecting some of Illinois’ most vulnerable residents, the Health Benefits for Immigrant Adults program has been put on the chopping block by the governor due to ballooning costs in the face of a massive overall budget shortfall.
Now, advocates are pushing to salvage funding for a program that has served as a lifeline for thousands of lower-income people without other options.
“These are people who are doing hard labor, working outside, who are working in cleaning or in construction industries, who were told that they were essential workers during COVID. And these are the people to whom we’re saying, ‘You can’t have health care now,’” said state Sen. Karina Villa, D-West Chicago.
“It’s because their employers are not paying them enough and/or not providing health care benefits through their jobs. These are folks who really have sacrificed their bodies for our economy and it’s very disheartening to know that it’s on their back that we’re attempting to balance the budget.”
Surging costs
Lawmakers introduced a much smaller version of the program for seniors without legal status in 2020, early in the COVID-19 pandemic, providing coverage similar to Medicaid but without any federal help.
That coverage was eventually expanded to a larger pool of people 42 and up, though surging costs and popularity prompted the state to suspend new enrollment in 2023.
Immigrants currently covered in the program have to be undocumented or have Temporary Protected Status, live in the state and have a household income at or below $18,754 for one person, according to the Illinois Department of Healthcare and Family Services.
The HBIA program was initially open to immigrants who had been green card holders for less than five years, but those people were later moved off the program in favor of other options like Medicaid and Affordable Care Act plans, said Stephanie Altman, director of healthcare justice at the Shriver Center on Poverty Law.
The program fell under increased scrutiny last month when Illinois Auditor General Frank Mautino issued a report finding the state vastly underestimated program costs that have amounted to $1.6 billion over the past five years.
The audit also found that the state underestimated the demand for the healthcare immigrant programs and found errors in enrollment. For example, an estimated 6,098 people were enrolled in the program as “undocumented” but had Social Security numbers.
Pritzker’s office estimates cutting the program for adults aged 42-64 will save $330 million as the state aims to bridge a multibillion budget shortfall.
“These are people of working age… and have the ability, in many cases — and we’ve seen it — to get a job that has healthcare associated with it,” Pritzker said after delivering his budget address in Springfield last month.
Pritzker’s proposal — which lawmakers will be negotiating over to pass a budget by the end of May — maintains state coverage for people 65 and older, at an estimated state cost of $132 million.
“There are lots of priorities I’d like to do immediately if we had the resources to do it,” Pritzker said. “We cannot do it this year, and so that’s why we had to make some changes.”
Illinois Republicans, who have roundly opposed any spending from the start, say that should be enough to cut off the program immediately.
“There is no need to wait until the next fiscal year — immediately shut it down and protect Illinois taxpayers,” Illinois House Republican Leader Tony McCombie, R-Savanna, said in a statement.
Impacting health centers
Villa praised the governor for defending “different populations in our state from the attacks that we’re seeing from our federal government” — but in addition to leaving thousands uncovered, cutting the program would “rip the rug out from under our network of health care providers in the state.”
She said she’s working with a broad coalition of groups aiming to get immigrant adult coverage back into the budget. That includes the Illinois Primary Health Care Association, a nonprofit trade association of federally qualified health centers that operate 400 clinics statewide.
Fewer people with coverage means more people waiting longer to seek care, and — like Julio — becoming more likely to resort to an emergency room when they do, according Cyruss Winnett, the association’s chief public affairs officer. That, in turn, means higher costs and thin resources stretched thinner.
“We are still going to be here and we’re still going to be doing everything we can to provide care to this population, and to anyone who needs it at one of our clinics,” Winnett said. “But everybody needs to be clear-eyed about the implications this decision will have on our service capacity and our ability to meet the needs of our communities.”
Or worse, it will leave thousands of people with difficult decisions, said Enddy Almonord, the campaign director for the Healthy Illinois Campaign.
“For a lot of folks, they are going to have to choose between paying for their medication or paying for a doctor’s office visit and paying for rent and paying for food,” Almonord said. “They’re not going to be able to seek health care until they are at a point where they have to go to an emergency room.”
‘It would be fatal’
For Raymundo Ruiz, 53, of Melrose Park, he worries that his medical condition could worsen if he loses his health insurance through HBIA. He was diagnosed with Parkison’s disease about four years ago after a doctor noticed his hands wouldn’t stop shaking.
“It would be fatal for me because with just one hour that I miss my medications, my hands start to shake and I get very tense,” Ruiz said in Spanish. “I can’t do anything. It would affect me a lot.”
He takes a daily combination of pills related to his Parkinson’s diagnosis, high blood pressure and depression, which are covered by HBIA. Even with the medication, he sometimes has trouble doing tasks like putting on his clothes or getting out of bed on his own.
“The doctors tell me the medicine they are giving me is the best there is to slow down Parkinson’s, but there could be a moment where it advances,” Ruiz said in Spanish. “I hope to God that it doesn’t but it could happen.”
Before his diagnosis, he worked for many years at a bakery and later worked doing odd jobs such as painting and home repairs. But he’s had increased difficulty securing any jobs because of concerns about his health. Ruiz has lived in the Chicago area for more than 30 years, but he’s been unable to legalize his immigration status.
For immigrants like Ruiz, seeking prolonged health care outside of an emergency room can be very limited, Altman said. Without legal status, people aren’t eligible for getting coverage through the healthcare marketplace and would have to depend on an emergency room visit or a federally qualified health center.
“Until HBIA, the options for that kind of continuing care is limited to none,” Altman said.
Julio, of Chicago, did not have health insurance before, and he can’t recall being so sick that he needed to seek a doctor. He usually treated colds with herbal remedies, and he considered himself a healthy person — running around the park with his two youngest sons and going on bike rides.
Then in 2022, he started to lose weight unexpectedly and his appetite decreased. He was down to 90 pounds by the time he underwent surgery after he was diagnosed with stomach cancer.
Julio had to stop working because his job wouldn’t give him time off to recover from chemotherapy, which he still undergoes — though it’s less frequent. He’s awaiting results that he’s hopeful will show the cancer is no longer present.
“I’m a person who believes and so I think it’s in God’s hand,” Julio said in Spanish.
His two youngest sons, ages 8 and 12, don’t know the severity of his health problems. He often jokes with them that his stomach looks like a McDonald’s apple pie after they caught a glimpse of his scars. He doesn’t know what he will do if the program ends this summer.
“If the cancer reappears years later, I would not be able to pay for the medicine or any other service that I would need to do exams,” Julio said in Spanish. “It would be terminal. And really my sons, if they were older and married it would be a different story because they would be grown and could work, but they are still young and need their father.”