SALT LAKE CITY — About two years ago, Stacy Davis-Stanford wheeled herself to the state Capitol to take part in a rally for Utah's uninsured.
A group of people was building a paper chain with 150,000 links, representing the number of low-income Utahns who could not afford basic health care.
Davis-Stanford, who has a neurological disorder resulting from a car accident in 2010, remains uninsured. And up until about six weeks ago, her primary care doctor was taking mercy on her, allowing her to phone in prescriptions without an appointment.
Since then, however, she's been without medications that help her deal with painfully tight muscles, nausea and vomiting, and overall pain.
"My condition has gotten a lot more complicated being uninsured," she said Thursday. "I have no means to get it in check. I have to wait indefinitely until I can afford the out-of-pocket expenses."
And while she has to stay optimistic, Utah House leaders' decision to refuse to hear a proposal she believes has a lot of work behind it makes that even harder for her.
The proposal is Utah Gov. Gary Herbert's Healthy Utah plan, which would extend health insurance to Utahns caught in the coverage gap — making too much to be eligible for Medicaid and too little to qualify for a subsidy on the federal marketplace. Herbert and other stakeholders have spent months negotiating tenets of the plan, including visits and conversations with the federal government, since it comes as an alternative to the Medicaid expansion pushed onto states by the Affordable Care Act.
Statewide meetings have also been held involving testimony from the Utahns it would serve and those who would help it play out.
"The least they can allow is a hearing where the public can testify," Davis-Stanford said. "It's literally life and death for these people."
Utah stands to recoup hundreds of millions of federal tax dollars that would help pay for the program but is going by the wayside while the state waits on a decision.
"I don't know that people's lives should be debated," Davis-Stanford said. "Don't they have an obligation to care 'for the least of these' among us?"
The Healthy Utah plan seems to have what it needs to be successful, including support from religious communities throughout Utah as well as support from the widespread health care community. Vivian Lee, CEO of University of Utah Health Care and dean of the medical school there, has said Herbert's Healthy Utah plan is great for Utah.
"It enables about 90,000 people across the state, who right now are not eligible for health care or health insurance, to get insured," she said, adding that research has shown that people thrive when insured.
"They're healthier, and, actually, mortality decreases. … We actually save lives by putting people on health insurance."
Lee said hospitals will continue to treat people without insurance, but admits it would be better to not have to.
"Right now, the way that care happens is crisis care," she said. Extending an arm of help, "is just a smarter way of taking care of the population and a much more compassionate way of caring for people."
Davis-Stanford, 29, used to high-tail it to the emergency room or question every new feeling or symptom, but she has learned to live with those. Everything just takes longer.
She's completing her sixth year of undergraduate study and planning to attend graduate school as long as her health holds up. She keeps up a fairly successful online jewelry business, selling over 900 charms, necklaces and/or bracelets last year. But sales are a couple thousand dollars shy of qualifying her for a health care plan on the federal marketplace.
"That's all I'm capable of at this point," Davis-Stanford said. "I'm studying things to try and find a career and be able to work from home, but if I had access to health care, I know I could do more than put charms on chains. I feel so limited because my health is so out of control and unpredictable."
She's hoping that while she continues her studies at Westminster College, the lawmakers who've heard her story over and over, and those of many like her, will realize that aside from the individual lives their decisions impact, it is their job to "protect their right to life, liberty and the pursuit of happiness."
"This is a life issue. It deserves to be brought to the table," she said. "I have the same hopes and dreams and ambitions as everyone else. There are road blocks in my way that I did not ask for and road blocks can happen to everyone. I just need a little bit of a boost and I'll be on my way."
"I have no choice," she said. "If I give up, it's a lonely road. I don't even want to go there."
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