The pools are supposed to be a safety net, but many, like Elder, are falling through the cracks.
Elder's family spent her final months fighting for Medicaid, with no clue that they qualified for Florida's high-risk pool. They are not alone: Of the estimated 200,000-375,000 people expected to enroll in PCIP in the first year, less than one-third have done it, according to the Department of Health and Human Services.
Leslie's husband, Jim Elder, admitted that he did not know many details of the program, and much of the conversation about health care has been confusing.
"I was under the impression that pre-existing (PCIP) didn't start until 2014," said Jim Elder in a recent interview with CNN.
"I'm puzzled. Since this act was passed, to us, people with pre-existing, we were hoping and searching for some sort of way to get health care. The way it has divided the country, some states suing to try and stop it, it's just confused everybody. It certainly confused us."
Jacobs, a nurse who met Leslie Elder in her role as a health care advocate and spokeswoman for the group National Nurses United, fears the Elders' story will be echoed repeatedly, even with ACA's passage.
"In a humane health care system, as much of the rest of the world has, no one would have to know the arcane minutiae of how to apply for a high risk pool," said Jacobs. "Everyone would have (coverage) that qualifies you for health care when and where you need it."
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