Disabled man finds Medicare plan no help
Albany man explains his confusing, lengthy battle for MS drug coverage
By MATT PACENZA, Staff writer
First published: Thursday, April 13, 2006
ALBANY -- Tom Copeland did everything right.
The 55-year-old Albany man signed up early for Medicare Part D, excited that he had found a drug plan to help him pay for medication to keep his multiple sclerosis from worsening. He filled out every piece of paperwork and made every phone call.
But after months of dizzying denials and roadblocks, Copeland has discovered, months later, that the new Medicare drug program won't work for him. A co-pay that was supposed to be $3 is at least $211 -- way more than he can afford on his modest disability pay.
Copeland, who shares a South End home with his sister, is a relentless advocate for himself. He displays a massive stack of paperwork he has accumulated while battling Medicare and private insurance plans over recent months.
"From February till now, this has been my full-time job," said Copeland in his kitchen last week, waving a yellow legal pad. "And for what?"
Advocates for people with disabilities and people with MS said they have heard of plenty of problems like Copeland's.
"There have been so many screwups in terms of the information given out by Part D plans," said Kim Calder, the manager of the health insurance initiative for the National Multiple Sclerosis Society.
MS drug offers relief
The medication that Copeland has been taking, Rebif, is one of four drugs that helps ward off multiple sclerosis, an autoimmune disease that affects the central nervous system. MS varies widely, but it leads to symptoms such as vision problems, numbness, loss of bladder control, difficulty walking and spasticity. The symptoms tend to occur in periodic attacks, often brought on by stress.
The drugs, which work by modifying the immune system, are taken by about half of people with MS. "The evidence shows the drugs work," said Dr. Patricia O'Looney, the director of biomedical research programs at the National Multiple Sclerosis Society.
The medications cost between $16,000 and $24,000 a year, according to the National MS Society. Many people, even some with drug coverage, have a hard time affording Rebif and the other medications.
Copeland was diagnosed with MS in 1981. He's been relatively lucky so far, with only scattered episodes that affect his walking and speech.
"I've had to relearn how to talk and walk," said Copeland. "It isn't bad -- for me."
A native of New York City, Copeland attended college and worked as a bank officer and as a heating and air conditioning technician before his condition drove him to disability. He then qualified for Medicare, which funds coverage for seniors and people living with disabilities.
Copeland has been taking Rebif since December. It has worked, he believes. Stiffness in his neck has gone away for the first time in months, among other improvements.
In July, Copeland called a Medicare counselor to sign up for coverage. He was told that a plan from the First United American Life Insurance Co. would be the cheapest and best for him, with only a modest co-pay for Rebif.
It all worked at first. In January, he was charged a $30 co-pay, which he could afford. But then come February, he was charged $234.53.
Copeland immediately called the insurer. After several rounds of phone calls, he was told that $234 was the right figure. A First United spokesman did not return a phone call seeking comment on this story.
So he switched plans, as all Medicare Part D recipients are allowed to do one time.
A Medicare counselor again told him that the new insurer, United Health Care, had a minimal co-pay, of $5 to $20. But when the drug was actually shipped in March, the cost was $211. In April, Copeland just found out, it will go up to $233.
A spokesman for United Health Care did not respond to questions from the Times Union.
Copeland has finally figured out that the $233 is the right figure, after months of being told he would pay less.
A representative for the federal Centers for Medicare & Medicaid Services confirmed the bad news: At Copeland's income level, all plans include a 15 percent co-pay. If that's so, how come no one ever clearly told him that before? Why do the Web sites for the private health plans show much lower co-pays, according to Copeland?
"It should be pretty straightforward," said spokeswoman Danielle Liss. "I guess it depends on who he's talking to, on who the person is advising him."
System hard to fight
Copeland cannot afford the big co-pay. His only income is $1,071 a month in disability pay. Take away $300 for rent, $317 for utilities, $100 for the phone and there's just a little left for food and the rest.
"I get by," he said. "But I literally don't have $300."
Copeland's story shows how challenging the Medicare drug benefit can be. He is an educated man, with Internet access at home, with enough free time and wherewithal to spend hours a day interpreting small print and haggling on the phone.
Most people on disability don't have such resources, advocates point out.
"Part D is uniquely difficult for people with long-term disabilities," added Elizabeth Priaulx, a senior disability legal specialist with the National Disability Rights Network.
To Calder, the misinformation experienced by patients like Copeland points to a problem inherent in Part D, which has been widely criticized for its complexity.
"It was cobbled together by Congress at the last minute," said Calder. "When the people who are sickest and in the greatest need bear the greatest cost, there's something wrong with your system."
For now, Copeland is still on Rebif, because United Health Care gave him a one-time waiver on the big co-pay. His doctor might able to provide him some sample medication, but sooner rather than later, the drug will run out.
Copeland is disappointed -- and angry. And on the verge of giving up, especially because he fears the growing stress will bring back an MS attack.
"Forget it," he said Wednesday. "I have put in enough time on this. I'm going to get sick if I don't watch out. It's not worth it."
http://www.timesunion.com/AspStories/story.asp?storyID=471201&category=REGION&newsdate=4/13/2006
By MATT PACENZA, Staff writer
First published: Thursday, April 13, 2006
ALBANY -- Tom Copeland did everything right.
The 55-year-old Albany man signed up early for Medicare Part D, excited that he had found a drug plan to help him pay for medication to keep his multiple sclerosis from worsening. He filled out every piece of paperwork and made every phone call.
But after months of dizzying denials and roadblocks, Copeland has discovered, months later, that the new Medicare drug program won't work for him. A co-pay that was supposed to be $3 is at least $211 -- way more than he can afford on his modest disability pay.
Copeland, who shares a South End home with his sister, is a relentless advocate for himself. He displays a massive stack of paperwork he has accumulated while battling Medicare and private insurance plans over recent months.
"From February till now, this has been my full-time job," said Copeland in his kitchen last week, waving a yellow legal pad. "And for what?"
Advocates for people with disabilities and people with MS said they have heard of plenty of problems like Copeland's.
"There have been so many screwups in terms of the information given out by Part D plans," said Kim Calder, the manager of the health insurance initiative for the National Multiple Sclerosis Society.
MS drug offers relief
The medication that Copeland has been taking, Rebif, is one of four drugs that helps ward off multiple sclerosis, an autoimmune disease that affects the central nervous system. MS varies widely, but it leads to symptoms such as vision problems, numbness, loss of bladder control, difficulty walking and spasticity. The symptoms tend to occur in periodic attacks, often brought on by stress.
The drugs, which work by modifying the immune system, are taken by about half of people with MS. "The evidence shows the drugs work," said Dr. Patricia O'Looney, the director of biomedical research programs at the National Multiple Sclerosis Society.
The medications cost between $16,000 and $24,000 a year, according to the National MS Society. Many people, even some with drug coverage, have a hard time affording Rebif and the other medications.
Copeland was diagnosed with MS in 1981. He's been relatively lucky so far, with only scattered episodes that affect his walking and speech.
"I've had to relearn how to talk and walk," said Copeland. "It isn't bad -- for me."
A native of New York City, Copeland attended college and worked as a bank officer and as a heating and air conditioning technician before his condition drove him to disability. He then qualified for Medicare, which funds coverage for seniors and people living with disabilities.
Copeland has been taking Rebif since December. It has worked, he believes. Stiffness in his neck has gone away for the first time in months, among other improvements.
In July, Copeland called a Medicare counselor to sign up for coverage. He was told that a plan from the First United American Life Insurance Co. would be the cheapest and best for him, with only a modest co-pay for Rebif.
It all worked at first. In January, he was charged a $30 co-pay, which he could afford. But then come February, he was charged $234.53.
Copeland immediately called the insurer. After several rounds of phone calls, he was told that $234 was the right figure. A First United spokesman did not return a phone call seeking comment on this story.
So he switched plans, as all Medicare Part D recipients are allowed to do one time.
A Medicare counselor again told him that the new insurer, United Health Care, had a minimal co-pay, of $5 to $20. But when the drug was actually shipped in March, the cost was $211. In April, Copeland just found out, it will go up to $233.
A spokesman for United Health Care did not respond to questions from the Times Union.
Copeland has finally figured out that the $233 is the right figure, after months of being told he would pay less.
A representative for the federal Centers for Medicare & Medicaid Services confirmed the bad news: At Copeland's income level, all plans include a 15 percent co-pay. If that's so, how come no one ever clearly told him that before? Why do the Web sites for the private health plans show much lower co-pays, according to Copeland?
"It should be pretty straightforward," said spokeswoman Danielle Liss. "I guess it depends on who he's talking to, on who the person is advising him."
System hard to fight
Copeland cannot afford the big co-pay. His only income is $1,071 a month in disability pay. Take away $300 for rent, $317 for utilities, $100 for the phone and there's just a little left for food and the rest.
"I get by," he said. "But I literally don't have $300."
Copeland's story shows how challenging the Medicare drug benefit can be. He is an educated man, with Internet access at home, with enough free time and wherewithal to spend hours a day interpreting small print and haggling on the phone.
Most people on disability don't have such resources, advocates point out.
"Part D is uniquely difficult for people with long-term disabilities," added Elizabeth Priaulx, a senior disability legal specialist with the National Disability Rights Network.
To Calder, the misinformation experienced by patients like Copeland points to a problem inherent in Part D, which has been widely criticized for its complexity.
"It was cobbled together by Congress at the last minute," said Calder. "When the people who are sickest and in the greatest need bear the greatest cost, there's something wrong with your system."
For now, Copeland is still on Rebif, because United Health Care gave him a one-time waiver on the big co-pay. His doctor might able to provide him some sample medication, but sooner rather than later, the drug will run out.
Copeland is disappointed -- and angry. And on the verge of giving up, especially because he fears the growing stress will bring back an MS attack.
"Forget it," he said Wednesday. "I have put in enough time on this. I'm going to get sick if I don't watch out. It's not worth it."
http://www.timesunion.com/AspStories/story.asp?storyID=471201&category=REGION&newsdate=4/13/2006
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