Red tape halts girl's lifeline

As the rest of the world celebrated New Year's Eve, Erika White learned her 2-year-old daughter's small intestine died of infection.

It was the girl's second one.

Now, seven months after Emerson White barely survived one rare and complex multi-organ transplant to save her life, she must go through it all again. And this time, in what seems a one-two punch, the family's financial lifeline, Medicaid, is in limbo too.

"It is so overwhelming," White said on Friday, from the Nebraska hospital where her daughter has been since June, when the original transplant was performed.

Emerson received a new small intestine, liver and pancreas after an unnamed metabolic disorder left her without a working digestive system at birth. The procedure came after nearly two years of living on intravenous feedings, which over time damage the liver and lead to dangerous bloodstream infections. The University of Nebraska Medical Center in Omaha is one of the only hospitals to perform such procedures.

The girl's recovery from the transplant has been full of close calls, but it wasn't until a few weeks ago that an illness ravaged 95 percent of the transplanted intestine for good. And, as the news sunk in, paying for her care was called into question.

Although the family is not low-income - Emerson's father, Jim, is a managing partner of Phil Long Ford - the astronomical medical costs long ago maxed out their $2 million insurance cap. The surgery alone was roughly $1 million, and much of Emerson's life has been spent in the hospital. The family qualified for a Medicaid program that helps with part of the costs of her care and is not dependent on income.

That program, designed for medical care at home, stipulates a 30-day maximum hospital stay, but Emerson's coverage continued for several months without question. Then, just days after Erika revealed the need for a new transplant and many more months in the hospital, she learned that coverage would end effective Jan. 31.

Without proof of funding, White said, the family cannot put Emerson on the list for new organs.

After The Gazette called the Colorado Department of Health Care Policy and Financing, which administers Medicaid for the state, the department's deputy director contacted White and the Nebraska hospital, said spokeswoman Joanne Lindsay.

Several state officials have been working on the matter over the weekend to figure how it can help the family financially.

Although the state administers Medicaid, it is subject to rules from the federal Centers for Medicare and Medicaid Services, Lindsay said.

White is enrolling her daughter in another federal program, Supplemental Security Income, that should restore Medicaid funding. But enrollment is typically a four-month process. A surgery during a coverage gap could be financially ruinous, if it were even authorized.

White, who has blogged about her daughter's ordeal, has urged family and friends to contact state officials and policy makers, not just for Emerson, but other families who might end up in such a situation. "My first priority is to help Emerson, and my second priority is to help other families that come after her," White said. "No parent going through a life or death situation with a child should have to worry about how to pay for it."

Jodi Gentleman, a social worker with the Nebraska transplant team, said stories like the Whites are not unusual because of the rare nature of the bowel-transplant procedures, and the lengthy hospital stays that follow. State Medicaid systems routinely boot people out on technicalities, and the hospital negotiates with states to get their funding restored.

"These patients fall outside all of the normal policies for these programs," Gentleman said.

Most people eventually get back in the system after the hospital negotiates with state Medicaid officials, she said.

Still, for families coping with daily life-and-death scares involving their children, the financial stress and frustrations can "push them over the edge," she said. "They're being pulled in all different directions mentally, emotionally and physically," she said.

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Contact the writer: 636-0198 or brian.newsome@gazette.com. Visit http://www.pikespeakhealth.freedomblogging.com.