Children with cystic fibrosis and other diseases receive less help with health-care expenses.
COLUMBUS (AP) -- When Tanner Stainbrook was hospitalized at age 3 with cystic fibrosis, a tiny program in the state Health Department paid the $14,000 not covered by insurance.
The Bureau for Children with Medical Handicaps also covered co-payments for prescriptions, frequent doctor visits and equipment such as a vest that shakes and pounds the chest to loosen mucus caused by the inherited lung disease.
But state programs that paid to treat conditions once fatal by adolescence find they can no longer afford unlimited aid because the children are living longer on ever more expensive drugs and treatments.
Ohio now requires families like 8-year-old Tanner's to pay more on their own. Idaho is seeking to end a program for adults with cystic fibrosis. Some states are trying to shift the 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."
Higher costs, same budget
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.
Even California, with more than $300 million in state and federal money, is struggling to meet increasing medical expenses for the children's fragile health, said Dr. Susann Steinberg, chief of the state's Children's Medical Services.
Program directors often criticize the government for cutting budgets, she said, but "It really does require the wisdom of Solomon almost to figure out what priorities need to be."
Ohio's $19 million program helps 21,000 children and adults with about 80 incurable conditions present at birth. But one uninsured child with a heart defect could cost $1 million a year, Bryant said.
The bureau has gradually shifted to depending on local property tax money from direct state aid. As both sources get pinched, its budget was cut 12 percent last year, and Gov. Bob Taft's proposed 2006-07 state budget shows a 5 percent cut that would take the agency back to the $23 million it received in 2002.
When states began financial help decades ago, children with the rare conditions died young and needed inexpensive services, said Suzanne R. Pattee, an attorney and vice president at the Bethesda, Md.-based Cystic Fibrosis Foundation.
For example, children with cystic fibrosis didn't live past their teens. The thick mucus makes breathing difficult and inhibits absorbing nutrients, so the patients need both respiratory medicine and nutrition supplements.
Pattee, 41, is an example of how things changed. She has a mild form of cystic fibrosis and takes medication. The median life expectancy is now 33 years, but drugs that make it possible can cost up to $2,000 a dose.
"It's making a program that maybe slipped under the wire now more of a lightning rod," she said.
Turning to Medicaid
Virginia and other states are exploring ways for adults with cystic fibrosis to buy into Medicaid, the government insurance program for the poor, even if they earn too much money to qualify otherwise.
In Idaho, two programs are in trouble. The $1.1 million that provided aid to children this year would have lasted only eight months. Since October, everyone pays a fee based on income, and those making triple the federal poverty level, or $56,550 for a family of four, are cut off, Health and Welfare Department spokesman Tom Shanahan said.
The department also has asked lawmakers to end aid to adults over 21 with cystic fibrosis, saying its mission is to protect the health of all 1.4 million state residents. The program was started in the 1970s and until 2002 could exist on $24,000 a year. Now, even though only 32 people receive help, Shanahan said, their care cost $85,000 over half a year.
In 2003, Minnesota saved $1.2 million over two years by eliminating its Children with Special Health Needs program, which covered insurance deductibles and co-pays. Most adults with the inherited conditions were moved to a new program that allowed them to buy coverage under Medicaid, but not the children.
Riley Schumacher, 7, of St. Cloud, Minn., can't make the blood antibodies and other components of a healthy immune system. He still receives infusions of antibodies, covered 80 percent by insurance. But his family has cut back on doctor visits -- relying on phone calls instead -- and 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."
Tanner's parents, Greg and Wendy Stainbrook of Ottawa in northwest Ohio, were among the 5,000 families who found out in July that their $49,000 income was too high, so under the income guidelines they must pay $6,000 in medical expenses before the aid kicks in.
"That's $6,000 we don't have," Wendy Stainbrook said. The family has averaged $150 in co-payments over seven months for drugs and doctor visits, and debts are mounting.
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 navigate the maze of social services available. The states paying for the extra help did it on their own.
Even the basic federal requirements are in danger, said Dr. Jeffrey Lobas, director of Iowa's Child Health Specialty Clinics. The state provides only coordination services such as helping find insurance coverage but had to close a center and go to four-day-a-week operation last summer because of a $750,000 shortfall, one-fifth of its budget.
"We have half the state dollars we had in 1990," said Dr. Lobas, president of the Association of Maternal and Child Health Programs. "I don't think we've been terribly effective at making the case that we're valuable."
The problem will get worse as new genetic syndromes are identified and new drugs developed, said Betsy Anderson, project director at 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.