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Riddled with cancer, 43-year-old Emily Young went uninvited to the governor's 2012 health summit hoping to persuade him to expand Medicaid.
Two years later, Utah policy leaders are still undecided, despite having spent about $140,000 on cost studies and task forces and Young is dead.
The Bountiful native died a few months ago from breast cancer, which she was unable to adequately treat without health insurance, said her primary care doctor, Raymond Ward, at the Tuesday evening debut screening of the documentary, "Entitled to Life."
Produced by Paul Gibbs, the movie personalizes one of the most polarizing and politicized policy debates in America by telling the stories of some of the 57,000 uninsured Utahns caught in a coverage gap. They earn too little to qualify for subsidized insurance on http://www.HealthCare.Gov, but too much to receive Medicaid under current rules.
"I don't know how anybody can hear these stories and not be moved," said Gibbs. "The problem is we have people elected who are choosing not to hear these stories."
Gibbs was moved to make the 30-minute film after hearing nearly a dozen working-poor adults testify last winter at the Legislature in favor of stretching Utah's health safety net.
He benefited from Medicaid years ago as a young, budding filmmaker, still in school and working a part-time job that didn't offer health benefits. It paid for his kidney transplant.
"I chose the title because the word 'entitlement' has taken on a nasty connotation of people wanting the world handed to them," he said. As he notes in the opening of his film: "Medicaid helps decent, hardworking people like me who don't think they're entitled to anything but life."
Utah's Republican legislative leaders recently have begun questioning whether a coverage gap exists.
"We are told somewhere between 49,000 and 70,000 people live within this [gap] … and it sort of creates questions in my mind who these people really are. I think we are taking this simply off the income levels. But there are a huge number of those who have insurance, who don't need it, don't want it," said Republican Sen. Allen Christensen at a Health Reform Task Force meeting in May.
"We're not heartless here," the Ogden dentist said, asking for help in identifying those in need. "According to the survey that I did, 450,000 people are taken care of, or seeking treatment through the charity care network [of providers] with 170,000 visits a year."
Many of those patients potentially fall in the gap, Christensen said, but maybe some "are rich people who just want an easy way to walk into Maliheh Clinic out there and get taken care of. … Many of them are the illegals who are here and don't qualify for anything supposedly."
Ward, however, said he encounters patients every week at his practice in the middle-income, bedroom community of Bountiful who fall in the gap.
Some were featured in Tuesday's film, including Young, who been employed and fully insured for 22 years before she was laid off from her job at a Midvale software developer in May 2009. Five months later, she was diagnosed with breast cancer.
She was able to afford to continue paying out-of-pocket to extend her health plan, which covered her surgery. But before she could undergo chemotherapy and radiation, her plan expired.
"I couldn't afford the tens of thousands of dollars for treatment. And I couldn't reach out to my family. I'm the sole caretaker for my parents," Young told The Salt Lake Tribune in September 2012. "So I did a lot of soul-searching and job hunting and hoped for the best."
She found a job that didn't offer health insurance, which put her earnings above the threshold to get Medicaid.
Then, a month before Gov. Gary Herbert's 2012 health summit, she learned that the cancer had spread.
Medicaid eventually came to her rescue, but only when she had grown too sick to work. It paid for her hospice care, said Ward.
Herbert is negotiating with the Obama administration for flexibility to, among other things, impose cost-sharing and work requirements on enrollees, deputy Medicaid director Nate Checketts said Tuesday. Herbert hopes to bring a plan to legislators for approval this summer.
But House Speaker Becky Lockhart, R-Provo, has resisted any plan that would tap federal funds and wants to defer debate until the regular legislative session next year.
The continued delays are frustrating for the growing ranks who support the expansion, including hospitals, Utah's doctor lobby and religious groups.
Most Utah voters 76 percent support using federal funds to cover the full expansion group, according to a Brigham Young University poll.
"I don't think you need to be a religious person to understand this problem. I just think you need to have warm blood in your veins, a heart that beats and a conscience," said the Rev. Scott Hayashi, bishop of Utah's Episcopal Diocese, who introduced Tuesday's film.
Those who oppose the expansion do so as a matter of principle, to take a stand against uncontrolled federal spending, said Hayashi, likening it to the arguments he and his siblings had as kids about who got the biggest piece of pie.
"I want lawmakers to go to these people and say to these families, 'Look, I know that because we're dragging our feet on this, that your parent or grandfather, mother or sister who works for $7 an hour is going to die, or that your father has been determined to be a person who has to be sacrificed for the greater cause.' "
Herbert's 'Healthy Utah' proposal
Utah Gov. Gary Herbert wants to use public Medicaid dollars to buy private coverage for an estimated 111,000 Utahns with incomes up to 138 percent of the federal poverty level, or $15,856 for an individual or $31,322 for a family of four.
Participants in his "Healthy Utah" plan would have to contribute an average of $420 a year toward their health care.
Some would face a work requirement. Low-income parents whose children are on Medicaid could get financial help to move the whole family onto a private health plan.