COEUR d'ALENE - After her daughter was diagnosed with cystic fibrosis 11 years ago, Ann Kersh has come to appreciate the magnitude of what that means.

"A lot of work? You have no idea what kind of work," the Post Falls woman said, ticking off clinic visits, X-rays, hospitalizations, all to ensure her daughter Elizabeth's survival of the genetic disease that can cause life-threatening lung infections.

And medications. Many, expensive medications.

That's why it is largely due to the Idaho Adult Cystic Fibrosis Program that Elizabeth - now 19 and attending Eastern Washington University to become on occupational therapist - has achieved a healthy and successful life, Ann said.

The state program has provided financial assistance for Elizabeth's multitude of treatments since she turned 18.

Even with the family's good insurance, Ann said, they would have had to pay $6,000 out of pocket last year just for medications, if not for the state's help.

"She's been able to try - not try, she does live a normal life, and she does it with a great deal of courage," Ann said.

If that program goes away, she added, it would be much harder for Elizabeth and so many others in Idaho to access the medication they need to survive.

"Without these meds, they're going to be hospitalized, plain and simple," she said.

Many like Ann have voiced concerns since the state Joint Finance-Appropriations Committee proposed not setting aside any funding next fiscal year for the Adult Cystic Fibrosis Program.

The 32-year-old program provides financial assistance for treatment for those 21 and over with the disease (Elizabeth Kersh started on the program when the age was still 18).

The disease requires medications that can cost up to $5,000 a month, said Dr. Perry Brown, associate director of the Cystic Fibrosis Center of Idaho in Boise.

"The bottom line is that some of them (people with cystic fibrosis) aren't going to be able to afford some of these preventative and maintenance medications, and they're going to live shorter periods of time and will be sicker during those shortened lives," said Brown, who has lobbied to keep the program. "Instead of spending money on prevention, we (the state) will be spending money on acute care and hospitalizations."

The Department of Health and Welfare originally requested $322,500 for the program for the next fiscal year, lasting from July 1, 2010, to June 30, 2011. Gov. Butch Otter recommended $150,000 in his budget.

But JFAC specified no funding for the program, which the House approved on Wednesday in House Bill 701 and the Senate will vote on in upcoming days.

Sen. Jim Hammond, R-Post Falls and a JFAC member, said zero-funding the program was part of a decision to not make any line-item appropriations.

"The Legislature is in a position where they're making tough decisions in many categories," Hammond said. "Because there was limited funds, it made no sense to specify line items."

Instead, the legislators leave it up to the IDHW to try funding the program within its allotted budget.

"The real decision is within the department," Hammond said.

But Tom Shanahan, spokesperson for the IDHW, said the agency is too pinched to cover it.

"Quite frankly, we're looking at layoffs and office closures in the upcoming weeks," Shanahan said. "We really don't have $150,000 to put into this program."

There are currently 44 people in Idaho on the program, he added, five of whom have no insurance.

He is most concerned for those five, he said.

"I assume they will go on prescription assistance programs," he said.

Cystic fibrosis is a chronic disease that causes the body to have thickened secretion in areas like the lungs, pancreas and intestines.

Without access to medications that control symptoms, Brown said, that secretion builds and causes infections that eventually lead to death.

"Some people ask 'Why don't we have programs like this for cancer?'" he said. "Cancer is devastating, and the survivors get treated with very expensive therapies. But that's for a year or two or three, and usually it drops off and it's done. Whereas for cystic fibrosis, it's chronic for the length of their lives."

If the state program goes away and patients miss their medications, he predicted, they will end up hospitalized and will turn to state or county assistance to pay for those bills.

He gave an example of one patient who feared losing state assistance, and recently started rationing her medication.

She ended up in intensive care for two weeks, Brown said.

"The total hospital bill, not including doctors fees, was $244,000," he said. "That's a single example of this being a penny-wise, pound-foolish approach."

He added that there are few other options for financing their medications. Only some pharmaceutical companies offer patient assistance, and the application process is time consuming, he said.

Dr. Michael McCarthy, medical director of the Inland Empire Cystic Fibrosis Clinic at Deaconess Medical Center in Spokane, agreed many will have to pay for their medications out-of-pocket or not at all.

"I think a lot of patients would probably need to choose between doing all of their treatments and medications and giving up some other essential expenditure in their lives," said McCarthy, who is the closest cystic fibrosis specialist and serves Idaho patients.

JFAC member Sen. Joyce Broadsword, R-Sagle, said there was simply no getting around the state mandate to balance the budget.

"You can't spend money you don't have," she said. "The funding was not enough to pay for the entire year for anybody. I feel really bad for these people, but there are people suffering with other illnesses I feel just as bad for, because we cut funding for every agency of every department."

She said she is hopeful that when the economy improves, the Legislature can fund the program again.

"As the revenues increase and the state gets back on better financial footing, we'll be able to better finance programs," she said. "And cystic fibrosis should be at the top of the list."