Joanne Capretti is in a fix. The 78-year-old widow needs an inhaler to breathe well enough to continue working part-time as a restaurant hostess, which supplements her paltry Social Security retirement benefits.
But she's worried she can't afford her medication anymore. Her out-of-pocket cost has more than doubled since July 1, when Illinois ended a program that helped her and thousands of other seniors buy prescription drugs.
"I can't quit working because then I won't be able to eat," said Capretti, who lives in the Chicago suburb of Lynwood. "I don't understand it. The older people don't get nothing and now they're getting less ... What am I going to do?"
The Illinois Cares Rx program ended just weeks after Gov. Pat Quinn signed legislation axing it in an effort to save $72 million and help fill a $2.7 billion hole in the Illinois Medicaid budget -- giving seniors and the disabled, who also qualified for the program, little time to plan.
At the time, some agencies advised worried seniors to get a 90-day supply of their prescription drugs. Now they're bracing for another surge of calls when seniors need medication refills they can no longer afford.
"We've been inundated," said Grant Nyhammer of Northwestern Illinois Area Agency on Aging in Rockford, where advisers are working their way through a waiting list of people seeking help.
One suburban Chicago agency hired extra workers to help with the calls. A Chicago-based group posted an alert on its website: "Unfortunately, we are not able to return each individual call at this time." In Champaign County, an event offering information drew 150 people. And in Central Illinois, churches chipped in by donating $10 pharmacy gift cards -- which Mid-Illinois Senior Services executive director Deb Groendal said is only a short-term solution that won't help seniors with ongoing medication expenses.
Here's a look at how people are coping with the end of the program:
Q. Who lost out?
A. About 168,000 seniors and disabled people were enrolled in the program when it ended. Of those, about 143,000 are 65 and older and about 25,000 are disabled people younger than 65.
They include individuals who make less than $22,340 a year and couples who make less than $30,260 a year. Because the program had no restrictions on assets, people could have large bank accounts and still be eligible.
"Here in southern Illinois, we have some farmers who have some land and some farmers who have some significant assets, in the six-figure range, who were on Illinois Cares Rx," said Chris Fulton of the Area Agency on Aging of Southwestern Illinois in Belleville. "We also have people who barely qualify for Illinois Cares Rx and have no assets whatsoever."
Q. What's the history of Illinois Cares Rx?
A. The program began in 2006 and was a favorite of now-imprisoned former Gov. Rod Blagojevich. Its aim was to fill gaps in the federal Medicare Part D program, which at the time was a new prescription drug entitlement championed by President George W. Bush. Medicare Part D still is extremely popular with seniors, but it has costs such as premiums, deductibles, copays and a coverage gap known as the "doughnut hole," which Illinois Cares Rx was meant to help alleviate.
Q. What other help is available?
A. A federal program called Extra Help assists people with very low incomes and little money in the bank. About one-third of the people enrolled in Illinois Cares Rx already were getting help with drug costs through the federal program. Illinois residents applied for both programs at the same time, so many people didn't realize which program was helping them with which costs.
Senior service groups are helping people enroll in Extra Help if they qualify and weren't already enrolled. An individual must make less than $15,080 a year and have fewer than $8,440 in assets. For a couple, the income limit is $20,426 and the asset limit is $13,410. If a person is near those limits, they can "spend down" their income and assets to become eligible. Senior service groups are actively helping individuals figure out whether that route makes sense for them.
The Extra Help program helps pay Medicare Part D premiums and deductibles. It limits copayments to $2.60 for generics and $6.50 for brand name drugs. It helps people caught in the Medicare coverage gap known as the "doughnut hole."
If people don't qualify for Extra Help, they may find they can save money by switching to a different Medicare Part D plan. They can make the change through Aug. 31. Senior service agencies are helping people comparison shop for the best plan with coverage for the drugs they need.
Q. Why did lawmakers dump the Illinois Cares Rx program?
A. Quinn said the state's Medicaid program was on the brink of collapse if the Legislature couldn't find $2.7 billion. Through a package of program cuts and a new cigarette tax, lawmakers were able to meet the governor's goal. One of the casualties was Illinois Cares Rx. The program's elimination saved $72 million.
Q. Will the Legislature replace the program?
A. Maybe. One bill would create an assistance program for senior citizens similar to Illinois Cares Rx, but with an added restriction on assets and no coverage for disabled Illinoisans younger than 65. Urbana Democrat Rep. Naomi Jakobsson, a bill sponsor, said she hopes it will pass in the fall veto session, but said she would bring it back next year if it doesn't. Champaign Democrat Sen. Michael Frerichs is sponsoring a similar bill in the Senate.
"We want to make sure that seniors who really need assistance with pharmaceuticals are able to get it," Jakobsson said, adding that her plan would cost about half of what Illinois Cares Rx had cost.