Leslie Elder was always a fighter. But in a message to a friend in the waning days of her life, she seemed exhausted.

The note, written at a time of spiritual darkness, suggested defeat after a decades-long struggle for medical coverage.

"I honestly don't know how much more I can endure," Elder wrote earlier this year in a Facebook message to her friend Liz Jacobs. "I am fighting for (Medicaid) and disability. I can't work I sit in bed I cry a lot. I am still fighting for healthcare and still fighting foreclosure.

"I am so upset but perhaps it was not meant to be. I don't know anything anymore," said Elder, who died in July at age 63 without insurance coverage.

As she typed the note, Elder could scarcely breathe. Her lungs had filled with fluid over several months; her respiratory system was shutting down. After visits to the emergency room and several free clinics, Elder was finally diagnosed with Hodgkin's lymphoma.

But what makes her family bristle: Elder did not have to die.

If she had had health care, "Absolutely she'd still be here," said Jacquelyn Elder, Leslie's daughter, adding that Hodgkin's lymphoma has a high survival rate. "That is something really hard to deal with."

"I know she felt scared because there were no options. Why do something (about illnesses) when you know you can't get proper care to fix it?"

Except there were options.

The Affordable Care Act, which takes full effect in 2014, was supposed to save people like Elder (with pre-existing conditions and no medical coverage) in the interim by way of high-risk pools, also known as the Pre-Existing Condition Insurance Plan or PCIP.

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."

That sort of access is promised to many through the ACA, but stories like the Elders' suggest the act -- at least as it relates to high-risk pools -- still has some kinks.

In the midst of the family's confusion, Elder was unwittingly suffering from cancer again -- her fourth diagnosis. During a 2009 interview with CNN she quipped, "I don't get a cold, I get cancer, and cancer, and cancer."

That terrifying litany of cancer diagnoses began in 1988 with a bulging tumor found in her right breast. Thirteen years later, the same diagnosis, this time in her left breast.