J.d. Pooley  /  AP
Tanner Stainbrook, 9, undergoes one of his twice daily treatments for cystic fibrosisis at his home in Ottawa, Ohio, Feb.12.
updated 3/16/2005 11:12:41 AM ET 2005-03-16T16:12:41

When Tanner Stainbrook was hospitalized at age 3 with cystic fibrosis, a tiny program in the Ohio Health Department paid the $14,000 not covered by insurance.

Over the years, it paid for other hospital stays. It paid co-payments for prescriptions and doctor visits. And it paid for the vest that shook and pounded his chest to loosen the debilitating mucus caused by the inherited lung disease.

Now Tanner is 8 and still struggling with this lifelong affliction. But Ohio is finding itself unable to keep paying the cost of health care like his. New rules mean his parents and 5,000 other families must pay much more before state aid kicks in.

For the Stainbrooks it’s $6,000 more, and “that’s $6,000 we don’t have,” said Tanner’s mother, Wendy Stainbrook.

Longer lifespans, rising costs
A number of states have helped families pay for rare conditions such as cystic fibrosis or heart defects — conditions that once were often fatal by adolescence. But the children are living longer on ever more expensive treatments, and states find they can no longer afford unlimited aid.

Idaho is also asking children’s families to pay more and trying to end an adult aid program. Virginia and other states are trying to shift some cases to Medicaid. Others, such as Minnesota, had to end all but federally required services.

“I have heard of families taking extra jobs and going into debt and having some major hardships,” said Dr. Jim Bryant, director of Ohio’s program. “We are concerned about it, but we have limited resources.”

One uninsured child with a heart defect could cost $1 million a year, Bryant said.

The problem will get worse as new genetic syndromes are identified and new drugs developed, said Betsy Anderson of Family Voices, a Boston-based advocacy group for children with special health needs.

“We’ve never figured out what is the extent of an individual’s or family’s role or responsibility to pay for this care,” she said.

Families face cruel choices
Families can face a cruel choice: Keep working and go into debt or bankruptcy, or quit a job or get a divorce to cut income to the level that qualifies for Medicaid, the federal-state insurance program for the poor and disabled.

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The Stainbrooks have considered cutting their income to a level that would restore Tanner’s state aid.

“If our medical bills exceed my income, it would be smart for me to quit work just so we could make ends meet,” said Wendy Stainbrook, who contributes about $12,000 of the family’s $49,000 earnings.

Federal money has stayed the same for five years while there are more children to cover, said Peter Sybinski, executive director of the Association of Maternal and Child Health Programs. Grants in 30 states were reduced as money shifted to growing population areas.

Ohio’s program covers such expenses for about 21,000 children and adults with 80 incurable conditions present at birth, including cerebral palsy, diabetes and spina bifida.

Cystic fibrosis a case example
Cystic fibrosis is perhaps the best example of the dilemma, because death used to come much earlier — often the teen years — and the available treatments weren’t expensive. Now, the median life expectancy is 33 years, and the drugs supporting that life span can cost up to $2,000 a dose.

The disease causes buildup of a thick mucus that makes breathing difficult and inhibits absorbing nutrients, so patients need both respiratory medicine and nutritional supplements.

“It’s making a program that maybe slipped under the wire now more of a lightning rod,” said Suzanne R. Pattee, vice president of the Cystic Fibrosis Foundation.

As life expectancy has increased, some states have set up separate programs just for adults with cystic fibrosis, since they couldn’t be covered in a children’s program.

In Idaho, $24,000 a year used to be enough to provide assistance. Now, even though only 32 people receive help, their care costs $85,000 over six months, and the state wants to cut off the adult aid. That state’s children’s program, like Ohio’s, is asking families to pay toward their care for the first time.

Financial aid programs cut
Minnesota ended its financial aid for children’s uninsured expenses two years ago. Riley Schumacher, 7, of St. Cloud, Minn., has a condition that’s left him with a weak immune system. His treatment is covered 80 percent by insurance. But his family has cut back on doctor visits — relying on phone calls instead — and they have not bought many of the medicines recommended to keep him healthy.

“When my wife went to the pharmacy and they told her it would be a $50 co-pay, she said we don’t have it,” said his father, Duane. “We increased the risk and we lowered his quality of life.”

A 1935 federal law required the states to “assure the health” of children with disabilities and other special health needs, which meant screening newborns for the conditions and helping families find insurance coverage and other social services. States paying for the extra help did it on their own.

Now even those basic federal requirements are in danger, said Dr. Jeffrey Lobas, Iowa’s program director and president of the Association of Maternal and Child Health Programs.

“We have half the state dollars we had in 1990,” he said. “I don’t think we’ve been terribly effective at making the case that we’re valuable.”

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