SALT LAKE CITY — Kylie Toponce, a part-time waitress and full-time student at Weber State University who stands to benefit from a decision that might come from the current legislative session, said she won't have the time or resources to pay attention to what lawmakers end up choosing for her future.
"It's not something I know enough about," she said, adding that because no affordable coverage is available, spending time researching it is not favorable.
Toponce, of Kaysville, recently declared bankruptcy, at age 23, after accruing $36,000 in medical debt resulting from emergency room visits for debilitating stomach cramps and coughing up "an excessive amount of blood," she said.
Though she suspects Crohn's disease, without health insurance, Toponce can't afford to visit a specialist and has not received an official diagnosis of what could be wreaking havoc on her gut.
Left untreated, however, Toponce will likely end up suffering more.
"Without knowing what's wrong with me, alternative treatments are just not effective," she said.
Toponce is one of about 67,000 Utahns who need coverage but can't afford it. Finding a "Utah solution" to health care reform is the political discussion on Capitol Hill, but it remains very personal for Utah families. And while parts of the nation move forward with full Medicaid expansion as laid out by the Affordable Care Act, options to cover the state's uninsured once again hang in the balance for the Utah Legislature.
Toponce falls into what is called the coverage gap — a group of people who earn too much money to qualify for existing Medicaid coverage, but do not have enough income to qualify for subsidized health insurance offered through the Affordable Care Act.
"Nearly two-thirds of the people in this group are employed, many working more than one job to make ends meet. Of the remaining third, many are the medically frail, who have conditions that make it impossible for them to work," according to a 32-page publication detailing Gov. Gary Herbert's Healthy Utah plan, which he publicly unveiled in December.
For at least the past year, Herbert has developed an alternative to Medicaid expansion that is vetted by the federal government and involves individual responsibility on the part of Utahns who participate, all while recapturing some of the Affordable Care Act taxes already heading to Washington.
Healthy Utah would require participants to pay what they can for the health care they get. It would cost less per participant and cover more people than other options being considered by the Legislature, according to the plan detail.
The governor's plan, however, faces an uphill battle among lawmakers, who seem to favor the perceivably lowest cost option of offering health care only to Utah's "most vulnerable," the medically frail — those with disabling mental disorders, chronic substance use disorders, serious and complex medical conditions or other physical, intellectual or developmental disabilities, as well as children under 19 who are in foster care or otherwise eligible for Supplemental Security Income.
If the state doesn't pursue an option that expands Medicaid to at least 138 percent of the federal poverty level, it will continue to forgo millions of federal dollars slated to help the states that choose to expand their programs.
Republicans and Democrats in the Utah Legislature differ mostly on the perceived costs of implementing any type of expansion, though the numbers they're using have remained fluid throughout their discussion on the matter.
Also fluid, however, are the lives that stand to be affected by whatever decision the legislature settles on.
Toponce recently missed a week of work because of ongoing stomach problems. She said her co-workers and boss understand, but she's lost a job because of it before.
"It's my normal now," she said. "I get excited when I don't throw up in the shower. That's just gross."
Through the Affordable Care Act, which was enacted in 2010 to expand the availability of health insurance, states are given the flexibility to provide coverage to residents through Medicaid by expanding eligibility for the program up to 138 percent of the federal poverty level.
Utah is one of the last states to make a decision, and while the ultimate decision is Herbert's, the Legislature must also sign off on it.
After nearly two years of study, the state's Health Reform Task Force, a legislative interim committee, backed a few options, but Herbert's Healthy Utah plan wasn't one of them.
Sen. Gene Davis, D-Salt Lake City, is the only lawmaker to open a bill file on the matter so far, and he is pushing for full Medicaid expansion as prescribed under the Affordable Care Act.
Other lawmakers have said they plan to take action, but a streamlined plan hasn't stood out.
Community, academic and religious leaders have publicly supported Herbert's plan, however.
The Church of Jesus Christ of Latter-Day Saints in December issued a statement encouraging "a principled approach to health care coverage for needy Utahns."
"We recognize that providing adequate health care to individuals and families throughout Utah is a complex and weighty matter," the church said. "While the economic and political realities are being debated, we hope the discussion and decisions taken in this matter will be consistent with the God-given principles regarding care for the poor and the needy that in the end benefit all of His children. We reaffirm the importance for individuals and families to be as self-sufficient as their particular circumstances allow and recognize that the lack of access to health care can impair a person's ability to provide for self and family."
Vivian Lee, dean of the University of Utah's school of medicine and CEO of University Health Care, told the Deseret News the governor's plan is "really very well-thought out and very reasonable."
"As a health care provider, there's no question it is better to have these people on health insurance than have them uninsured, come into our emergency rooms with a heart attack and sit in our intensive care units," she said. "Those costs are absorbed by society, and it's just a bad way to manage a population. It's just not the right thing to do."
The Healthy Utah plan, which Herbert has said has preliminary approval from the federal government, would enroll participants in a work effort, to help them get jobs or improve on their current situations with training and consulting help.
Like many who would qualify for Healthy Utah, Toponce has a job. It's one that is limited to less than the 30 hours that would require her employer to offer benefits, but she is happy there and is working toward a college degree.
"The worst part, in my opinion, isn't my financial strife and downfall. The worst part to me isn't the fact that I have no idea what's wrong with me," she said. "The worst part, as I see it, is that this could have all been avoided. If proper health care was a human right, not something for those lucky enough to afford or qualify for the programs we've put in place, none of this would have happened."
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