Lawmakers refuse to end medical aid

BOISE – Idaho senators refused Monday to end a program that provides medical care to 34 Idaho adults who suffer from cystic fibrosis.

The debilitating genetic disease leaves its victims needing costly, extensive, daily treatments just to be able to breathe, eat and function. But major advances in drug treatment now are allowing people with the disease to live into their 30s. That success in treatment has made Idaho’s cystic fibrosis program no longer affordable for the state.

“It’s truly a predicament that we find ourselves in,” Richard Schultz, director of health for the state Department of Health and Welfare, told the Senate Health and Welfare Committee. “The dollars we have at the time aren’t meeting all our needs. We’re going to have to set some priorities.”

The program, set up in 1978, has been funded at just $24,000 a year ever since. But in the last two years, its costs have shot up – from $46,921 in fiscal year 2003, to $74,773 in 2004, to an estimated $128,405 this year. Next year, the program is projected to cost $205,448.

Sen. Denton Darrington, R-Declo, told his fellow senators, “Dick Schultz has a pretty serious problem. The problem is either support the program or abolish it – that’s what he’s asking us to do.”

But the Health and Welfare Committee, faced with a bill to abolish the program, had no way to increase its funding instead. That’s up to the Joint Finance-Appropriations Committee, which writes the state budget. Instead, it voted unanimously to kill the bill.

Sen. Shawn Keough, R-Sandpoint, who serves on both panels, said, “Perhaps we could get together and look at some other options rather than cold, hard cut-off.”

Sen. Dick Compton, R-Coeur d’Alene, the Health and Welfare Committee’s chairman, said, “What you’ve got here is a microcosm of what we’re facing in a lot of areas. This is terribly painful.”

The committee heard tearful testimony from the wife of a cystic fibrosis patient, who broke down as she detailed how her husband suffers. “He was trying to be here today but he is sick, so he can’t come,” Kendra Hooper told the senators. “He struggles every day with this disease.”

Her husband’s father, Dale Hooper, also testified. “I don’t think it’s morally right, physically right for him to lose the right to life – it’s in the Constitution,” he told the senators.

Kendra Hooper said she has insurance through her job and Medicaid as a backup, but fears the couple will lose Medicaid as both earn more at work. The state cystic fibrosis program picks up costs that Medicaid and private insurance don’t cover, including co-payments and deductibles; for uninsured patients, it covers everything.

Compton said, “Each time this happens, we say, ‘Oh, wait a minute, not that program. Some other program is what we want you to cut.’ “

Sen. Charles Coiner, R-Twin Falls, said, “I’m having a hard time believing that we can’t find some solution better than eliminating a whole program.”

Dr. Perry Brown, a Boise pediatrician who treats cystic fibrosis patients, suggested possibly seeking a federal waiver to set up a cystic fibrosis program under Medicaid, waiving or expanding Medicaid’s usual eligibility criteria. At least that way, 70 percent of the funding would come from the federal government, he noted.

The current program is funded entirely by state tax dollars.

Brown told the panel that if cystic fibrosis patients receive preventive treatment, it’ll save huge amounts of money on hospitalization and more expensive care later.

He was most concerned that quarterly clinics now held in the state, in which a specialist from Utah is brought in to treat cystic fibrosis patients, might end. But Schultz said those clinics would continue even if the overall program is eliminated.

Sen. Joyce Broadsword, R-Sagle, said she thought the state would spend much more than it would save by eliminating the program. “You don’t step over a dollar to pick up a dime,” she said.

The cystic fibrosis program is rare in that it’s a program designed to directly serve patients with a specific disease. There are many other terrible diseases for which Idaho has no similar program, Schultz noted.

When department officials presented their budget request several weeks ago, they said most patients on the program could get treatment through either private insurance or Medicaid, and also likely would qualify for special drug assistance programs that pharmaceutical companies sponsor for cystic fibrosis patients. The current state program has patients share costs on a sliding scale.

Both the House and Senate Health and Welfare committees previously approved a rule change proposed by the Health and Welfare Department to trim back the Children’s Special Health Program, which covers kids with an array of conditions including cystic fibrosis, PKU, heart conditions, cleft palate and more. That program is funded by a $1.1 million annual federal grant, but costs have shot up and the grant no longer covers the expenses.

Under the approved rule change, children with cystic fibrosis and PKU will remain fully covered, but for the other conditions, only uninsured children will be eligible. Only about 300 of the 2,600 children now enrolled in the program lack health insurance.

“We really are worried about the kids who don’t have insurance,” said Health and Welfare spokesman Tom Shanahan. “And there isn’t enough money there for everybody.”

Schultz said that program faces challenges similar to the adult cystic fibrosis program.

Marilyn Sword, director of the Idaho Council on Developmental Disabilities, told the committee, “We know you face an incredible number of difficult budget decisions, but we would hope that you recognize the importance of this program – particularly to those 34 people.”