Figure. Dreama Runyan, patient and advocate
Like 42 million other Americans trying to decipher Medicare's new prescription drug program, Dreama Runyan hoped for the seamless transition promised by Mark B. McClellan, M.D., administrator of the Centers for Medicare and Medicaid Services.
But seamless isn't among the words she uses today to describe Medicare Part D, as the program is known, since its Jan. 1 rollout.
Disaster is more like it, says Runyan, a 48-year-old with multiple sclerosis who moderates an Internet discussion board for others with neurological disorders.
Disabled since 1993, she had to quit her full-time job and become fully dependent on Medicare (for seniors and people with disabilities) and Medicaid (for low-income patients). They covered all her prescriptions with very low copays under the old system. As a dual-eligible qualifying for Medicaid as well as Medicare under Part D, she was automatically enrolled in a new drug plan by Medicare - only to discover that it didn't cover any of the prescriptions she needs.
Helplessly watching her supply of medications dwindle, she kept phoning Medicare's helplines. I called and called but was always disconnected or put on hold, sometimes for as long as three hours at a time, she recalls. I can recite their recorded message by heart. By mid-December, she was at her wit's end.
I was suicidal, she says. I just couldn't handle it anymore.
Runyan finally got help not from Medicare but from the Medicare Rights Center, an advocacy group that enrolled her in a better plan. But even that plan won't cover all her medications and she's facing a huge increase in out-of-pocket expenses. Under the old system, my copay never exceeded $2, she says. Now I have to come up with at least an extra $200 each month.
Like many other people with disabilities, Runyan stockpiled medications under the old system in case there were coverage problems. But not everyone had such foresight. She has talked to scores of others in her online community who've been turned away by pharmacies unable to confirm either plan eligibility or coverage of their medications under their assigned carriers.
The bottom line is that many of us can't get the medicine we need, and if patients can't get their medications, they'll do one of two things: go to an emergency room or go without, she says. This is not what we were promised. It's a nightmare.
Runyan advises dual-eligibles to do as she did: look to advocacy organizations for help with Part D problems.
The Medicare Rights Center in New York and the Center for Medicare Advocacy in Connecticut are two national organizations with telephone hotlines and online assistance.
The Center for Medicare Advocacy has been able to keep up with thousands of calls because problems with the drug program were not unexpected, says executive director Judith Stein. We were aware of the complexity of the program and the confusion patients and caregivers endured while trying to decipher the plans and choose from so many coverage options. It is, by its very structure and design, a problem.
The government is supposed to compute the subsidy available to each beneficiary, but in many cases that information wasn't shared with insurers or pharmacists, says Stein. In addition, some seniors haven't received coverage documentation and many pharmacists have been unable to contact insurance companies because helplines have been overwhelmed. And Medicare's web tools often provide incomplete or inconsistent information, she says. It's not just isolated incidences, it's happening all over.
At the Pennsylvania Health Law Project in Philadelphia, director Michael Campbell says his advocacy organization has filed a lawsuit against the federal government on behalf of Medicare beneficiaries denied medication. It's a real disaster, he says, with breakdowns at every turn.
Health officials in Washington seemed unprepared as the Part D crisis unfolded. Two weeks after the rollout, Bush Administration officials admitted there were problems but maintained that overall the program was working.
During a Jan. 17 press conference, they advised Plan D beneficiaries to be patient with the transition and persistent with pharmacies. In response to the problems, they said the Centers for Medicare and Medicaid Services (CMS) instituted a computer system to help pharmacists and increased by 400 percent the number of operators for Part D calls.
Don't leave the pharmacy without your drugs, said the U.S. Secretary of Health and Human Services, Michael O. Leavitt. There is no reason for you to go without your medicines … or for you to have to pay more than you owe.
The problems would be worked out one pharmacy, one beneficiary, one state at a time, he added. If your pharmacist can't find information they need, they can enroll [you] in a default plan right at the point of sale.
Dr. McClellan was equally adamant.
It's unacceptable to me, as a physician, for anyone who had coverage to go without the medicines they need, the CMS administrator told reporters. The plans have been directed to make sure there is quick access for a pharmacist to verify that a person is continuing the medicine that they're already on, and so that they can get approval of that prescription while the person is standing at the pharmacy counter.
CMS spokeswoman Barbara Cebuhar also says the agency is doing its best to fix the problems. Any time you make a big change like this in a small amount of time, there are bound to be some unexpected problems, she says. The measure of our success should not be that we have no problems at the outset, but that we are fixing these problems. People are getting their drugs. Our conversations with pharmacists have indicated that things are working much better now, and we've worked with the plans to provide 30-day transition coverage.
The dual-eligible beneficiaries automatically enrolled in plans were assured of continuing to see their providers until March 31 to ensure they have access to any medications they were receiving before the change.
Toward the end of January, CMS also directed Medicare drug plans to ensure that dual-eligibles are not charged more than $5 per prescription and that they receive a temporary supply during the transition.
Barely a month after the rollout, 34 states had taken emergency action to help beneficiaries continue to get their medications without being charged higher copays. Each program is different, but all allow pharmacists to directly bill the state, temporarily, for the cost of prescriptions if they encounter coverage problems.
A survey by DSS Research Services found that fewer than 24 percent of eligible persons had chosen a Part D plan by mid-December, while 53 percent said they didn't expect to at all. These findings are consistent with our predictions, said DSS president Roger Gates. Part D is just too expensive and inferior to the coverage patients are familiar with.
Dreama Runyan puts it another way from her home near West Palm Beach, Fla.
My primary care doctor is so frustrated with Part D that he told me he's probably going back to Africa to practice, she says. I said, 'Take me too.'