Sherilyn Horrocks' body is under siege.
Her immune system is attacking her tissues and organs, causing her esophagus, stomach and liver to harden. "I'll die of [systemic sclerosis] like my brother did," she said. "It's just a matter of time."
Hoping to buy more time, and quality of life, the 61-year-old career homemaker is dropping by Gov. Gary Herbert's annual health summit on Thursday to try to persuade him to expand Medicaid.
The Magna woman isn't an invited speaker. She's among 123,000 uninsured Utahns who would qualify for Medicaid under an optional expansion of the low-income health program through the Affordable Care Act.
There is no cure for her autoimmune disease.
"But there are medicines and procedures that would prolong my life if I could afford them," she said. "I have a feeling I'm going to be one of those who falls through the cracks."
Utah has yet to opt into an expansion, despite analyses showing it would bring billions in federal funding to the state during the next 10 years, create jobs and reduce the charity-care burden on hospitals.
Republican legislators remain adamantly opposed, and Herbert is weighing the pros and cons of partial expansion scenarios to be discussed at Thursday's summit.
There's no deadline for deciding, though states that drag their feet risk forgoing federal funding and delaying coverage.
But for people like Horrocks, the clock is ticking loud and fast. "Her disease is attacking her liver and killing her," said Ray Ward, a family doctor who met Horrocks at a farmers' market health-information booth. "Her liver would undoubtedly last longer if she were on the right dose of immunosuppressants."
In 2003, the Institute of Medicine estimated that 18,314 Americans aged 25-64 die annually for lack of insurance.
Those numbers, based on a 20-year-old study, have been disputed by researchers who argue insurance status alone doesn't predict mortality. Rather, it's characteristics shared by the uninsured poverty, environmental factors and unhealthy behaviors that cut lives short, they argue.
Ward, a Medicaid-expansion advocate, points to other studies showing the uninsured are more likely to be hospitalized for preventable conditions, and that when they are hospitalized, they tend to get less diagnostic and therapeutic care.
The Bountiful physician this year persuaded Utah's powerful doctor lobby to revisit its stance on the Medicaid expansion. Utah Medical Association delegates declared in a policy statement last week they are in favor of "finding a way to get the available federal matching funds to provide coverage for the poor in our community."
They pledged to work with state leaders to "find which solution would be best for Utah."
Horrocks hopes a fix is found soon.
She doesn't need data to be convinced that insurance matters. Systemic sclerosis isn't something you get from stress or poor eating and exercise habits, she said. The cause is unknown, but it's thought to have a genetic component.
Diagnosed in 1992, Horrocks has managed her disease with immunosuppressants and other medications.
But 13 years ago she lost her insurance when her husband's employer, Arizona Eastern Railway, dropped its spousal coverage. He's retired now and on Medicare.
But it will be another four years before Horrocks can enroll, and she's not sure she'll live long enough to make it.
"I raised a big family and my husband made good money. I worked hard, I kept a nice house and I raised good kids," she said of her six adult children. "But there's no safety net for me."
For now Horrocks pays cash for all her medical needs, rationing her drugs and oxygen supplies. "I'm supposed to have my liver tested. I need a procedure to stretch my esophagus and I'd like to find out what this big lump is at the top of my stomach," she said. "But we can't afford it."
Her symptoms are getting worse. She is in constant pain and can't keep food down.
"I'm pretty far advanced because of not being able to take care of myself."
Horrocks is confident, though, her story will resonate with state leaders.
"If I push this through, maybe I can help someone else," she said. "There are probably so many people out there who are worse off than me."
About the expansion
What is the Medicaid expansion?
Under the Affordable Care Act, virtually everyone must have health insurance come 2014 and Medicaid is the path to coverage for the poor and uninsured. Full expansion would cover all individuals with incomes at or below 138 percent of the poverty level, or $15,600 a year for a one-person household.
What will it cost?
Utah could save $131 million during the next 10 years if state officials opt to fully expand Medicaid, according to an independent cost-benefit analysis ordered by the governor.
What's happening Thursday?
During Gov. Gary Herbert's annual health summit, officials, advocates and others will discuss the possible expansion and partial alternatives.