WASHINGTON – Far from the expected deluge, relatively few patients with cancer and other serious illnesses have applied for generous early Medicare (search) prescription drug coverage.
The Bush administration was planning a lottery to determine who would get the 50,000 slots included in last year's Medicare prescription drug law (search). Instead, just 6,364 people have applied for the head start on drug insurance for costly cancer medicines taken orally and self-injectable drugs for multiple sclerosis, rheumatoid arthritis and other diseases.
The Medicare Web site now advises: "There are still many enrollment slots available!"
Patient advocates and physicians blame the low enrollment on several problems: The government scared off some people by using the term lottery and hasn't publicized the program enough. In addition, it came up with an intimidating application for people with debilitating, life-threatening illnesses.
Complaints about complexity also have been raised regarding the Medicare discount drug card program, where enrollment also has fallen short of expectations.
The experience so far is a cautionary tale for the new full-blown Medicare prescription drug benefit scheduled to begin in 2006. Advocates, health-care analysts and even government officials expect that will be even harder to sort out.
"Maybe all of us were overly optimistic about how eager the consumer would be to get into the program," said Nancy Davenport Innis, chief executive of the not-for-profit Patient Advocate Foundation, which says it has helped obtain early coverage for 324 people.
The administration had expected tens of thousands of people like 81-year-old Helen Curtis to step forward when it unveiled the new program in June. While many cancer drugs administered in doctors' offices already are covered under Medicare, costly newer oral medicines and most drugs for other illnesses are not.
Curtis had been spending $560 for each shot of Abbott Laboratories' Humira that she injects herself with every two weeks to relieve symptoms of rheumatoid arthritis — a cost that would reach $14,560 for a full year.
Since her coverage began Sept. 1, Curtis said she will pay $1,200 for the medicine for the rest of the year, amounting to less than $150 per injection.
Unusual for someone her age, Curtis is an avid computer user and read about the program online. "I told my doctor about it and even took extra forms for other patients," she said in a telephone interview from her home in Scarsdale, N.Y.
"The sad thing is, people didn't know about it," she said.
Dr. Mark McClellan (search), administrator of the federal Centers for Medicare and Medicaid Services, said his agency is increasing efforts to publicize the program among physicians and organizations dedicated to the affected diseases.
"Some beneficiaries have gotten misinformation because they think the program might not provide much of a benefit or they might not have much chance of getting in," McClellan said. "That's absolutely not correct."
The perception was at least partly created by McClellan's boss, Health and Human Services Secretary Tommy Thompson. When he announced the program in June, Thompson said more than a half-million people without prescription drug coverage would be eligible.
"There'll be a lottery to be chosen as one of 50,000 lucky individuals," Thompson said then.
Medicare was planning two lotteries, the first in August to fill 5,000 slots. Instead, virtually all the 3,700 applicants were enrolled in the program. Officials set a second application deadline of Sept. 30.
McClellan now says Medicare will continue to accept applications beyond the end of the month. Medicare also has dropped all mention of a lottery, which some critics found distasteful when talking about serious illness.
That change probably was a good thing, said Innis, the patient advocate.
"Speaking as a two-time cancer survivor, if you're battling an illness you know can take your life and already conserving all of your emotional reserves to battle the disease, you may be dissuaded just by the word lottery," Innis said.
Bob Hall, chief lobbyist for the National Coalition for Cancer Survivorship, said the application form was too complex, although several groups offer help filling it out. "You think about the Medicare population and that population might not be one that gravitates towards a 12-page application," Hall said.
Still, advocates said they have been surprised by the lack of participation, given the number of people they presume to be eligible.
But Dr. David Johnson, a Nashville, Tenn., cancer specialist and president of the American Society of Clinical Oncology, said even the most generous benefit is of little value to people who don't know about it.
"This is something that hasn't been widely publicized," he said. "I didn't know about this thing until our policy people raised it with me."