There are many anonymous tragedies in our country (and, God knows, the world) that happen every day. Some of them might be instructive to know about, though, by definition, we never will.
Then, there are public tragedies. In these cases, we can learn something. But I’m just not sure what.
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.”
First, the condolences. Ms. Elder sounds like a spirited woman, and a loving—and loved—wife and mother. We are sorry for her passing, and for the physical and mental pain she endured.
But I’m already confused, and I’ll give it away that the story is incomplete. First, as the story makes quite clear, she had health care—in emergency rooms and free clinics—though that would hardly be adequate to a woman in her condition. Indeed, Hodgkin’s lymphoma is highly curable, but it takes several months radiation and chemotherapy. Not likely to get that at a free clinic.
So, how did she get to be 63 and without health insurance? We’ll get there.
First, her battles with government-supplied health care (or lack thereof):
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.
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.”
Okay, we’re getting somewhere. She is a multiple survivor (told you she was spirited!), and CNN has been aware of her for years. I am astonished that no one who knew of her condition—not her providers, not her media exploiters—told her of the health care options available to her.
And about that private coverage:
By then, the Elders had been on a roller coaster, going from what they describe as the best medical coverage to having none. In between came skyrocketing insurance premiums, high deductibles, and stacks of unpaid medical bills following each cancer diagnosis.
At a certain point, feeling like her pre-existing conditions were to blame for her soaring and unaffordable insurance rates, Elder gave up on coverage.
Her insurance company Aetna later said Elder’s previous cancer diagnoses were not the culprit for the rate increases.
Although the company did not cite a specific reason for the increased rate, Cynthia Michener, an Aetna spokeswoman said: “There can be other contributing factors to rate increases for small business policies, including, for example, the aggregate cost of the entire pool of small business policies in the state.”
During the interview with CNN three years ago, Elder admitted to volleying between fear of the unknown and acceptance of her fate, even though without insurance, she had no idea whether she had cancer again.
She had coverage; she dropped it. And once she dropped it, no company was obliged to pick it up for her—though the state government would have, if asked.
To summarize: she was frequently (and expensively) sick; she made an error in dropping her coverage; she was poorly, even negligently, advised; she got sick again.
I don’t know what conclusions we are meant to draw, but to me, this is the perfect storm of health care disaster, from a personal point of view (she died), and a coverage point of view (she could have been treated).
In looking for a cause of this tragedy, the only entity clearly innocent of all charges is private health insurance. They didn’t drop her, she dropped them. She and her family (and their circle of friends, advisors, and handlers) missed out on opportunities available to them, and ObamaCare only made things more confusing. Several thousand pages of legalese can do that. If we had to pass the bill to know what’s in it, she was a goner from the outset. I read this story as saying the act did as much to kill her as its bloated claims promised to save women like her.
I suppose if we had had a National Health Service in place, Leslie Elder might be alive today. If she could have gotten an appointment to see a specialist within a reasonable amount of time. If that specialist, overworked and underpaid, correctly diagnosed her condition; and if the eight-month course of treatment had been followed rigorously. And if she hadn’t gotten a hospital-borne infection that ravaged her depleted body. She would have been fine until the next cancer.
For the truth is we can’t save everybody. That’s not to do with health care, but to do with cancer (and other often-fatal conditions). Ms. Elder survived cancer in both breasts and both kidneys. She “didn’t make that happen”, as the president might say, or not herself alone—American medicine did. The sad irony is that she died of a curable form of cancer, her fifth, when the medicine and the coverage were available to her. That she lived as long as she did is a miracle of modern medicine; that she died as early is a cluster[bleep].
I wonder if we need fewer laws, not more, and simpler approaches to these worrying issues. Worked out with the insurance companies, not over their dead bodies. Just a thought.