URBANA – Without her daily injections, Cassandra Cook can barely survive.
She can't walk. She can't raise a cup to her mouth – or even pick up a spoon.
So when she went to the drugstore recently to buy another month's worth of injections and couldn't get them because the paperwork for her new Medicare prescription drug plan wasn't in order, she was scared.
"I was down to three, and I was terrified," she recalls. "I said, 'Oh my God, what am I going to do? I can't afford this medicine.'"
Cook, 42, of Urbana, has multiple sclerosis, a disorder of the central nervous system. She says the self-injections that help her function cost $1,050 a month without insurance or government help, and she was paying $3 a month before she wound up in a new Medicare drug plan.
Cook said she finally got her prescription refilled – for $3 – after a three-day, nerve-wracking wait as two pharmacies, Carle Rx Express and Walgreens, sorted out her Medicare paperwork.
But her experience has become all too common among the elderly and disabled since the Jan. 1 rollout of the new prescription drug program for Medicare recipients called Medicare Part D.
The stories health care consumer advocate Claudia Lennhoff has heard from distressed older people are so heartbreaking, she says, she's come to think of the new Medicare program as "elder abuse."
"It's been a disaster," said Lennhoff, executive director of Champaign County Health Care Consumers. "The government is saying, 'Be patient, it's a big program to roll out.' Well, y'all should have thought about that before."
The government did, contends Robert Herskovitz, spokesman for the Centers for Medicare and Medicaid Services in Chicago.
Herskovitz says many of the early glitches are being addressed by contingency plans that have been put into place, so people can walk into pharmacies and get their medicines without delay – and at appropriate copayments.
"Things are moving along a lot better lately," he said.
Lennhoff, just back from a national conference of health care advocates, said that's not the way she hears it. Advocates across the country complained just last week that Medicare's contingency plans don't seem to be filtering down to the pharmacy and insurance company levels, and the telephone help lines are still overwhelmed with calls.
"It's kind of like it's still a big traffic jam," she said. "I think some progress has been made, but it's not going well."
The problems her organization and others are finding include issues with:
– Automatic enrollments
The state, the federal government and some insurance companies automatically enrolled many seniors in Medicare Part D drug plans, creating a web of confusion.
Illinois, for example, created a new program called Illinois Cares Rx to help subsidize the out-of-pocket costs that qualified Medicare beneficiaries will have with their new Medicare drug plans. The state then chose two of the standalone Medicare drug plan options and randomly enrolled many of the Illinois Cares Rx beneficiaries in one plan or the other.
Except for those Illinois Cares Rx beneficiaries who qualify for this state help, but who also get their health insurance through a Medicare managed care "Medicare Advantage" plan: Two Medicare Advantage plans are automatically enrolling this group of seniors in their own prescription drug plans.
The federal government, meanwhile, is doing automatic enrollments in 16 different drug plans for the low-income people in Illinois dubbed the "dual-eligibles," meaning they qualify for both Medicaid and Medicare.
The problem is many seniors didn't know they were being automatically enrolled in any plan, and having listened to the advice they were given to carefully choose the Medicare Part D plan right for them, did exactly that.
"People who wanted to make independent decisions would get letters saying welcome to this plan, and they'd say, 'What do you mean? I didn't choose this plan,'" said Victoria Christensen, program manager of Champaign County Senior Services.
– Wrong plans
The automatic enrollments were done without regard to what prescriptions individuals take, so some people wound up in plans that don't cover their drugs.
The state, fearing its Illinois Cares Rx population wouldn't get enrolled in a Medicare drug plan on time, randomly enrolled those people in either the AARP MedicareRx Plan or the Pacificare Saver Plan, according to the Illinois Department of Healthcare and Family Services.
Those people who are having trouble getting their medicines on one plan can switch to the other, but they must call one of the government help lines to make the change.
– Terminal hold
Calling with problems on any of the government or insurance company help lines has meant a long wait on the phone, and sometimes no resolution on the first try.
Here's what happened to Christensen when she tried to get through on one help line for a senior having problems: After a five-minute hold, someone picked up the call and Christensen quickly explained the situation. The person at the other end of the line put her on hold again – this time for 25 minutes – and after finally getting back on the line asked her how to spell Illinois.
"I was going to hang up after a half hour," Christensen said.
– Confusion about recorded instructions
Today's seniors didn't grow up with the automated phone systems handling the Medicare problem calls, and some folks don't understand how to navigate them.
"They're already anxious and scared. They don't know if there's going to be any end, if they're ever going to get to talk to a real person," Lennhoff said.
– Too much paper
Medicare recipients are being deluged with letters and forms to fill out, and they sometimes don't know when they've received some important pieces of information – such as their new drug plan ID numbers and cards.
– Long waits at the drugstore.
Pharmacists have spent hours on the phone trying to sort out problems for individual Medicare customers, says Kirby Crawford, manager of the Carle RX Express pharmacy at Carle Foundation Hospital, Urbana.
In some cases, Carle pharmacists have wound up giving people a week's worth of medicines to tide them over, and sometimes they've just given people their prescriptions and hoped to be reimbursed by the right Medicare drug plan eventually.
"Each day we take one step forward and two steps backward," Crawford said.
Herskovitz said that's one problem that should be resolved by a new toll-free number set up just for pharmacists to verify Medicare drug plan member information.
"We've put measures together for pharmacies to communicate with us," he said.
Not everybody is experiencing problems, and Rita and Harold Roy of Mahomet – who take about 26 different medicines between them – are sure glad they've been among the lucky ones.
Last time they went to the CVS drugstore in Mahomet for refills, their new Medicare drug cards got them copayments of $5 or $2 a prescription, Rita Roy said.
"So far, so good," she said.
The less lucky ones, warns Katie Coombes, Medicare 100 Plus program coordinator at Health Care Consumers, might have to be their own advocates at the pharmacy counter. Don't just plunk down your grocery money for a prescription that is only supposed to cost you a few dollars, she said.
"Tell your pharmacist, 'Keep working on this. I know I'm not supposed to be paying full price or walking out without my prescription,'" she said.
Lennhoff advices people who have a prescription drug plan outside Medicare that works for them to stick with it for now.
Not only is there proposed legislation to extend the penalty period for late enrollment in Medicare Part D, she said, but waiting to enroll might actually benefit you as the government works out more kinks in the program.
"With my parents, I'm saying take your time and don't enroll," she said.
According to the government's latest count Jan. 13, millions of Medicare beneficiaries nationwide do appear to be waiting.
Of the 43 million eligible beneficiaries, there have been 14.3 million enrollments in standalone and Medicare Advantage plans, including automatic enrollments. About 9.5 million other people are also now in Medicare subsidized plans.