1 of 7
Laura Seitz, Deseret News
Two-year-old Daisy Doutre became deaf after contracting a virus called cytomegalovirus in utero. Rep. Ronda Menlove, R-Garland, introduced a bill at the state Legislature that would establish a statewide educational program to inform pregnant women and others who deal with young children who may be infected of the issues surrounding CMV, as well as direct physicians to test for it in babies who fail newborn hearing screenings, among other provisions. Photo taken Friday, March 15, 2013.

At the beginning of the Utah Legislature 2013 session, The Deseret News pledged to focus its legislative coverage on five key issues that matter to Utah families: early childhood education, college and career readiness, economic development, health care and well-being, and intergenerational poverty. See what transpired in each of those areas during this year's legislative session.

SALT LAKE CITY — A power struggle with the governor on Medicaid expansion dominated the conversation on family health at the 2013 Legislature, but lawmakers did make friendly moves toward ensuring better health for Utahns and their families.

Infant testing, hearing aids and secondhand smoke consumption were among the issues considered and approved that will likely have direct impacts in the home.

Expectant mothers and mothers of newborn babies can expect to get more information on various health concerns, including cytomegalovirus and congenital heart defects, which can be detected at very early ages with the right tests.

Cytomegalovirus, or CMV, can lead to lifelong disabilities, including hearing loss or cerebral palsy. If identified early enough, though, CMV can be treated.

Sara Menlove Doutre, of Willard, had an otherwise completely healthy pregnancy, but two years after her second child, Daisy, was born, the girl received two cochlear implants after becoming completely deaf.

Daisy had failed an infant hearing test, but doctors didn't think anything of it at the time because many babies require multiple hearing tests. Yet just as the toddler was beginning to talk, the family noticed she wasn't hearing well and sought professional help.

A specialist was able to obtain blood kept on record by the state from Daisy's first blood test, which revealed CMV was present at birth.

"It's amazing to me that with my background as a special education teacher, I had never heard of it," Doutre said, adding that very few people, including physicians, know anything about CMV or how to combat it.

Doutre is assisting the Utah Department of Health with a statewide educational outreach campaign, made possible by the passage of HB81 — the first of its kind in the country. Alaska is the only other state to recognize a need for increased awareness, having recently passed a resolution regarding CMV. Utah is the first state to actually fund a program to dispense information to expectant mothers.

"It's exciting," Doutre said. "Families can take easy steps to treat this."

Her daughter is now learning how to talk and hear through the new devices, which is tricky as the implants produce a more electric or synthesized sound. The family is hopeful Daisy will be mainstreamed by the time she enters kindergarten.

But with the proper education and intervention, Doutre believes all of it could have been avoided and it is possible that Daisy could still hear naturally today.

Lawmakers also approved a pilot program for low-income children who could benefit from receiving hearing aids at an earlier age. Experts believe early treatment of hearing loss could lead to better social and education outcomes.

Medicaid controversy

By passing a bill that gives them a say in funding the optional provision of the Patient Protection and Affordable Care Act to expand Medicaid, lawmakers expect to be a part of the ongoing discussion until a decision is made.

No deadline exists for the choice, but the state stands to lose out on available federal reimbursement moneys the later the decision is made.

Utah is one of five states left to make a decision on the expansion option. Other states are projecting savings and a boon to the health care workforce with the expansion, which is set to take effect in January 2014 for states that have opted in, and some have worked with the U.S. Department of Health and Human Services to achieve more flexibility and come up with their own plans of action — something Gov. Gary Herbert has also been seeking, with continued correspondence with officials in Washington, D.C.

Whether to expand Medicaid in Utah is Herbert's decision alone to make, although HB391 — the result of a compromise made in the late hours of the legislative session — asks that he consider economic projections as well as public input, among other things.

In the weeks and months to come, Herbert will likely make available the results of a Utah Department of Health-commissioned impact study on expanding the partially federally funded health insurance program to more Utahns, specifically those who are low-income and currently uninsured. That report was delayed several times since it was initially promised prior to the start of the session.

The governor has also said he will convene a committee of state leaders and stakeholders to weigh public input and ultimately do what is best for the state, those in need of care and the bottom line.

Local advocates for low-income people are looking forward to being part of that discussion "to find the best path forward for Utah," said Matt Slonaker, Medicaid policy and collaborations director at Utah Health Policy Project.

Slonaker said legislative action that encouraged a team approach with the governor was "a positive step in the right direction for the state."

More than 130,000 Utahns stand to gain coverage with the expansion, but it could end up costing the state millions in the end, especially if federal moneys suddenly become unavailable, as they are not guaranteed.

And even though no decision was made, Medicaid expansion was the hottest health topic on the hill throughout the session, with many people appearing to testify of their need for coverage.

Rep. Todd Weiler, R-Woods Cross, estimated that 95 percent of all correspondence he's had on the issue has been in favor of expansion, although having endured countless hours of testimony, committee meetings and public hearings in the past year, he said the choice is a tough one to make.

"I think we're getting close," Weiler said.

In order to make coverage available to the expanded population by the January 2014 federal implementation date, a decision needs to be made in Utah before summer's end. The option, however, is on the table indefinitely. Federal funding rates decrease after the first three years, however.

Air pollution

The problem of poor air quality in the state made headlines throughout the session, but lawmakers didn't make much headway.

More than 200 doctors urged Herbert to declare a public health emergency in January, the same month the Utah Legislature got under way. Advocates for cleaner air, however, say lawmakers continued to ignore the public health impacts of Utah's dirty air by failing to pass any meaningful laws that could have addressed the issue.

Comment on this story

Elevated levels of fine particle pollution have been linked to increased visits to hospital emergency rooms for incidences of stroke, cardiac arrest and accelerated onset of dementia in elderly women. Asthma sufferers also continue to bear the brunt of suffocating inversions that landed the state on the U.S. Environmental Protection Agency's list for the dirtiest air in the country this year.

Yet Utah's Republican legislators snubbed several bills dealing with the matter brought forward by a group of Democrats.

Contributing: Amy Joi O'Donoghue

E-mail: wleonard@deseretnews.com, Twitter: wendyleonards