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Melanie Soules had just begun a new job as chief executive and team leader for a Salt Lake City real estate company when her occasional odd symptoms hot, burning patches on her forehead became worse.
Within weeks, it felt like hot oil was flowing inside her skin, like a knife was inside her face. She began forgetting names and meetings, vision in her left eye suffered and it was difficult for her to swallow.
Soules, a single mother of two, tried to hide her failing health, but lost her job at Keller Williams in the fall of 2012 and along with it, her health insurance, because she couldn't afford to pay the full $900-plus monthly premiums.
Soules was eventually diagnosed with trigeminal neuralgia, which involves chronic pain affecting the trigeminal nerve, the nerve that carries sensation from the face to the brain.
She was among advocates who appeared before the Utah Legislature's Health Reform Task Force on Thursday to urge expansion of Medicaid or, at least, support for Gov. Gary Herbert's alternative Healthy Utah plan.
Vivian Lee, chief executive officer of University of Utah Health Care, was among those urging an Medicaid expansion, which she said would save her system $20 million per year in charity care.
The task force also heard what members called disturbing results of a new University of Utah study. U. economists say more than 77,000 Utah adults fall within a coverage gap, making too much money to qualify for Medicaid but too little to qualify for federal subsidies to help them buy private health insurance under the Affordable Care Act.
That's far more than the 54,000 the Utah Department of Health has been estimating, based on a consultant's study last year.
The state has been estimating there would be nearly even numbers in the two poverty groups that would be served by Medicaid expansion or Herbert's plan those earning incomes at the poverty level or less, and those making 101 percent to 138 percent of that level.
The poverty level is $19,790 per year for a family of three; 138 percent of the poverty level for that family is $27,310.
But the U. study, led by economics professor Norman Waitzman, predicts that 75 percent of the total number served by expansion 77,127 of the 103,124 would be in the lower income group.
Since that's the group Utah leaders feel most obligated to help, its larger size will complicate things as the governor tries to sell the Legislature on his alternative to expanding Medicaid.
Skeptical lawmakers will see covering the lower-income group as an even bigger program, says Rep. Jim Dunnigan, R-Taylorsville, co-chairman of the task force.
"I'm perturbed. We thought it was a 50-50 and now this says it's three-quarters," who fall in the lowest poverty level, he said.
Dunnigan said the state could be looking at a $40 million annual bill with Herbert's plan, but it could go as high as $60 million if there are more poor people covered or if employers drop their current health plans.
Waitzman said he believes the U. study numbers, based on U.S. Census surveys, make the governor's case for expanding coverage to both poverty groups even stronger.
The feds will potentially give the state higher funding 100 percent of new costs at the start and 90 percent after a few years if it does so. But if Utah limits coverage to those with incomes at the poverty level or less, the feds will kick in just 70 percent.
"It's actually a bargain," Waitzman says.
Hales told lawmakers that federal negotiators are agreeing to some pieces of Herbert's plan but not others. The governor wants to use public Medicaid dollars to buy private insurance for those in the so-called "coverage gap," with a work requirement.
The U.S. Department of Health and Human Services will not accept a plan that strips a poor person of health insurance if he or she does not work, but the state and feds are continuing to talk about ways to give incentives, Hales said.
For instance, the state could perhaps use funds from Temporary Assistance for Needy Families or other programs to offset health insurance costs and provide an incentive to work.
"We're shooting to have a really good vision of what's available by the end of the summer," Wesley Smith, director of state and federal relations in the governor's office, said in an interview.
Smith says the governor expects to call a special legislative session to deal with Medicaid expansion, but Dunnigan says it may be premature.
For Soules, a self-described "fiscal conservative," expanding Medicaid makes sense. Accept federal funding, she said, "and get our people better so they can be good parents and the best citizens that they can be."
She rents out the other half of her duplex, but that means she makes too much money to qualify for Medicaid and too little to qualify for a health insurance subsidy.
The ACA envisioned that people like Soules would be covered by an expansion of Medicaid, but then the U.S. Supreme Court ruled states can opt an option that 24 states so far are taking.
Her lack of health insurance meant a long delay in the aggressive, daily physical therapy Soules needs and which she just began this month, thanks to loans from friends.
Soules says the therapy is helping considerably. "I haven't had a headache in three days," she said earlier this week. " I am an entirely different person."
By the numbers
A new study by economists at the University of Utah makes these conclusions about Utah adults in the so-called "coverage gap" making too much money to qualify for Medicaid but too little for health care subsidies.
77,127 adults are in the gap, making federal poverty wages or less.
Another 25,997 make 101 percent to 138 percent of the federal poverty level and could benefit from Medicaid expansion or Gov. Gary Herbert's Healthy Utah plan.
More than 69 percent are over age 25.
Nearly half are in families and a third are parents.
More than 61 percent are working, but many who work part-time say they would work more hours or can't find full-time jobs.
Most of those who don't work say they're caring for family members; others are retired, disabled or sick.
90 percent are white.