SALT LAKE CITY — Emily Young thought that with a lumpectomy, she had kicked breast cancer. The surgery was all she could afford at the time and she trusted doctors when they said they "got it all out."
"I just hoped for the best," she said.
Now the cancer is back, and with the pre-exisiting condition, 43-year-old Young doesn't qualify for a health insurance plan. She won't until 2014, when health care reform mandates officially take effect.
"I have to not be afraid of death at this point," she said. Young has been visiting a spiritual healer, trying to "come to grips with what might happen" if officials in Utah decide not to support Medicaid expansion, which would extend coverage to her and about 105,000 others like her in the state of Utah.
It would be a third of the state's uninsured population — people who aren't offered a plan from their employers, can't afford or get one on their own and don't qualify for Medicaid.
Gov. Gary Herbert told hundreds gathered at his second annual Health Summit on Tuesday that he is taking a "wait and see approach" to implementing provisions of the Patient Protection and Affordable Care Act, which was signed into federal law in 2010 and upheld by the Supreme Court earlier this year.
A discussion on the issues is ongoing, but Utah and other states are waiting for the results of the November election before anything becomes concrete. President Barack Obama instituted the plan while presidential contender Mitt Romney has vowed to repeal the health care act
"We need to come up with the best benefit with the highest quality of service for the most amount of people at the lowest cost," Herbert said, repeating his long-held sentiment that federal health care reform was hastily conceived and was passed without input from the states.
"We still don't know what's in those 2,700 pages of federal legislation," Herbert said. "And those 2,700 pages are spawning and will spawn thousands of pages of additional regulations."
He said "all states can be laboratories of creativity," coming up with health care solutions on their own, and taking the necessary time to determine whether any idea is affordable and efficient before signing it into practice.
Advocates for equitable health care say waiting on making a plan may end up being too late for some.
"There are sometimes situations where there are people who might die without health care insurance. They are not just statistics; these are real people and their families who are impacted by this," said Dr. Raymond Ward, a family practitioner in Bountiful. He said that if Young would have received the nine months of chemotherapy and radiation treatments doctors prescribed for her following surgery, she may not have a recurring cancer diagnosis.
"I am focusing on finding goodness in all things and seeing the love that is there," Young said. "It's all you can do when you've done all that you can. The one thing I can do to keep uplifted."
The MBA grad and entrepreneur said she's tried to do everything right in her life, but "some circumstances are out of our control. The plan I've mapped out for my life is no longer a durable plan."
Young said that without insurance, her options are limited.
Experts who spoke at the summit said the key to reining in health care costs is prevention, catching disease early on. But research has shown that only those insured can afford to be screened, said Susan Dentzer, editor-in-chief of Health Affairs magazine.
Those without health insurance, she said, can also expect increased premature death rates, receive fewer services and treatments, have higher morbidity rates and worse health outcomes, and they are less financially able to take care of health problems that come along. All of those factors then impact society as a whole.
"None of us gets out of this problem alive, even if we have health insurance coverage," Dentzer said, adding that the latest census numbers reveal that nearly 412,000 Utahns are without health insurance.
In addition to increasing numbers of the uninsured, payment and incentive systems within the health care industry also contribute to the problems of rising costs and maintaining quality.
"Whether you like or don't like the Affordable Care Act, we still have these problems," Dentzer said. A recent Health Affairs survey, she said, indicates that similar numbers of Americans (28 percent) see the current system as "good," "fair" or "poor," where just 5 percent rate it "excellent" and 12 percent rate it as being "very good."
"There are a lot of people who think it could be better," she said. "If we keep an eye on the future, we could make a big difference."
Russ Wall, mayor of Taylorsville, said he often touted healthy lifestyle choices to his constituents, but none were compelled to listen as his waistline continued to grow.
"You can lead a fat guy to a treadmill, but you can't force him to walk with an Iceberg shake in one hand and an extra-large package of French fries in the other, and that was me before January," he said. Wall implemented positive changes in his own life and has since shed pounds and various medications from his daily routine.
He said there are plenty of parks, activity centers and walking paths available to people to help them make healthier choices, but to truly make a difference, "we have to convince people of the value of healthy living. We have to make it available and make it fun."
Providing enough physicians is also a piece of the health care puzzle, specifically in rural areas of the state, said Vivian Lee, senior vice president for health sciences at the University of Utah. The university has already increased the size of its medical class, and additional growth is scheduled to try and meet the population growth and demand in the state of Utah.
Private institutions are also starting up their own medical schools in the state and surrounding regions, but Lee said a private education is more expensive, which then turns graduates away from where they are needed, in primary care.
"Utah is among the most healthy of states, and the most affordable," she said, adding that access remains a problem, as well as maintaining quality care at affordable rates.
Herbert encouraged those at the health care table to "work in more collaborative ways" to solve the issues surrounding the problems at hand. He said deadlines for implementing pieces of federally mandated health care reform are looming, but he is certain the state of Utah will "find an appropriately balanced approach."
Young, who paid the $150 ticket price to get into the summit to provide a consumer voice, said she hopes a solution comes sooner rather than later.
"I don't fit into the typical Medicaid/entitlement demographic. I feel like I'm part of that strong workforce who can give back, if only I could get coverage," she said. "I just need help right now."
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