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CHAMBERSBURG, Pa. — It was a mother’s worst nightmare. Maria Lopez, a single mother of three, answered her door one August afternoon to find employees from her eldest daughter’s school.
“They told me, ‘Prepare yourself. They’re taking Brenda to the hospital,’” Lopez said.
Brenda Zamorano, then 17, had been found unconscious in the bathroom at school.
Lopez later discovered that her daughter had suffered a brain hemorrhage after an arteriovenous malformation ruptured. Less than 1 percent of the population is born with this condition, and ruptures most often occur in people ages 15 to 20.
“I started to pray and pray and pray,” said Lopez, a devout evangelical Christian. “It’s purely God’s mercy that Brenda is alive.”
But the brain injury left her daughter paralyzed and unable to speak.
Zamorano recently turned 19. The once vibrant and healthy teen, who dreamed of becoming a stylist, now spends most of her days in a wheelchair in a bedroom she shares with her mother and her sisters, ages 5 and 10. Zamorano will need 24-hour-a-day care for the rest of her life; she can’t breathe or eat on her own, using tubes in her throat and stomach and relying on diapers.
This has been devastating for her and her family, which has had to pay out of pocket for treatment. She lacks health insurance because of a federal rule that makes it virtually impossible for her and tens of thousands of other young immigrants to get affordable coverage.
Lopez can’t work, since she must care for her daughter full time. She applied for and received emergency Medicaid to cover nearly $100,000 in medical costs, but her daughter’s ongoing treatment relies on a hodgepodge of support and donations. She received diapers and food contributions from her church, as well as a few hundred dollars from local fundraisers. A general practitioner agreed to see Zamorano at a reduced rate and donated a year’s worth of medication. Lopez has avoided taking her daughter to other doctors, though, out of fear that she won’t be able to pay. She regularly receives bills that run over $1,000 for equipment rental.
Zamorano arrived in to the U.S. from Mexico at age 6 with her parents and lived most of her life as an undocumented immigrant. But with the help of a lawyer, in 2014 she won temporary status through the Deferred Action for Childhood Arrivals (DACA) program.
Announced in June 2012, DACA allows undocumented immigrants who were born after July 15, 1981, and arrived in the U.S. before their 16th birthday to apply for temporary legal status without fear of deportation. It permits recipients to get a Social Security number, meaning they may get a job and a driver’s license, open a bank account and access credit and college financial aid. The status must be renewed every two years and does not lead to legal permanent residency. Since the initiative began, more than 680,000 immigrants across the country have been given legal status through DACA.
But shortly after President Barack Obama launched the program, the federal government quietly implemented a rule barring DACA recipients from obtaining federally funded free or low-cost health plans or insurance through the Affordable Care Act. Though the government regards DACA recipients as having temporary legal status, many affordable health insurance providers are obligated to treat them as undocumented and deny them coverage.
Health care experts at the National Immigration Law Center said the decision was political and arbitrary. “The timing was in 2012, shortly before presidential elections,” said Jenny Rejeske, a center health policy analyst. “I think it was done to try to head off criticism.” She added that because DACA recipients are young adults — the same group the administration heavily targeted when promoting health plans — the regulations made little sense. “This is the population you want to buy health insurance,” she said.
Without access to insurance exchanges, a June 2014 survey of more than 2,600 DACA recipients found that only 21 percent managed to obtain health care coverage.
Adding undocumented immigrants to the Obamacare patient pool could make it younger and healthier, according to Rep. Luis Gutierrez (D-Ill.), who introduced a bill last month that would expand Affordable Care Act coverage to the undocumented. Democratic presidential candidate Bernie Sanders has endorsed the idea, though he hasn't supported federal subsidies for the undocumented.
DACA recipients can get insurance through their employer, their university or plans excluded from the insurance marketplace at full price. While the average premium through the Affordable Care Act is about $105 after subsidies, full-price premiums average $231 to $415 for 30-year-olds, according to Healthpocket, a health plan comparison website. An August U.S. Government Accountability Office study found that across the country, exchanges offer the most affordable plans. Without access to these exchanges, a June 2014 American Immigration Council survey of more than 2,600 DACA recipients found that only 21 percent managed to obtain health care coverage.
Cesar Calderon, 26, knows what it means to be shut out of insurance.
A DACA recipient and student at Mesa Community College in Mesa, Arizona, he has been disabled since he was nearly killed in a car crash in 2006. After spending several weeks in a coma in an Arizona hospital, the staff there decided to transfer him to a clinic in Mexico in a controversial practice known as medical repatriation, since at the time he was undocumented and lacked insurance. “I couldn’t believe that the country I call home would do that me,” he said later. His mother left her four other sons with family in the U.S. and accompanied Calderon to the facility in Mexico.
Medical costs mounted, and his mother eventually moved him to a friend’s home, where, after spending weeks unconscious, he finally woke up.
After about a year of recovery, Calderon and his mother returned to the U.S., having spent about $75,000 — an unimaginable sum for the family. Now he often uses a wheelchair to get around, frequently loses equilibrium and has a speech impediment.
He managed to finish high school and raise money to attend college. But after he was accepted into DACA two years ago, he learned about the insurance exclusion. “Oh, no,” he recalled thinking. “Even though I’m doing everything right, I’m still being held back.” He has problems with his arm and knee that might require surgery and has dozens of scars from falls. He has researched local facilities that offer rehab, which he longs to get.
At the moment, immigrant health care access varies widely by state. Although the Obama administration could legally change DACA insurance eligibility rules without participation from Congress, there has not been any effort to do so, and other attempts to extend benefits to undocumented immigrants have been stalled in courts. A handful of jurisdictions, however, use their own money to subsidize low-income health plans — including California, the District of Columbia, Massachusetts, Minnesota, New York and Washington — states that also cover DACA recipients.
Christian Enriquez, 31, of Oakland, California, is still alive, thanks to such health policies. He has end-stage kidney failure, and for the past nine years, he has been receiving dialysis nearly 12 hours a week. An undocumented immigrant, Enriquez traveled to the U.S. from Mexico at age 7. Through Healthpac, an Alameda County insurance program that covers undocumented immigrants, he has been able to afford and receive treatment, including an artery operation last month after complications from dialysis.
But Enriquez needs a new kidney, and his insurance won’t cover the medication he will need to take for the rest of his life to ensure that his body doesn’t reject the organ. So he’s working with a lawyer to get try to get either DACA or a special visa that would grant him provisional legal status and allow him to qualify for Medi-Cal, state-based insurance that might let him to get the transplant. But even if he receives DACA, getting insured isn’t guaranteed.
Enriquez said all he can think about is getting the transplant. “It’s pretty stressful,” he said. “Now to me, it’s like normal life.”