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Crucial but Costly Treatment Is Drying Up With Funding

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Times Staff Writer

Jim Hill’s world is closing in around him as his strength slips away. Until a few months ago, the 80-year-old led an active life, but lately he’s been forced to spend much of the day in a hospital bed. Twice he has broken his nose in falls.

“I got paranoid about falling,” said Hill, who lives in Northridge.

But Hill says what turned him from a retiree involved with church and family to a patient in a wheelchair is not just the disease attacking his nervous system. It’s Medicare.

To remain mobile and active, Hill depended on regular intravenous infusions of healthy antibodies. But recently, in a budget-cutting move, the government healthcare program for the elderly has reduced what it will pay for such treatments -- to less than doctors and hospitals say it costs to provide them.

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As a result, Hill and many others no longer get their regular treatments. And the medical alternatives are often less effective. Hill’s predicament is shared by more than 10,000 Medicare patients nationwide, according to a conservative estimate.

But his case is also a warning flag for all Medicare patients, and for the government officials and members of Congress who must grapple with the program’s rising costs: Cutting Medicare reimbursements, as President Bush proposes to do on a broader scale, carries major costs of its own.

In his new budget, Bush called for $36 billion in Medicare cuts over five years, affecting a range of providers including hospitals, nursing homes, home health agencies and outpatient facilities. More fundamentally, he has proposed automatic, across-the-board cuts when Medicare spending reaches certain specified limits -- the first time such cost constraints would be applied to a major benefit program.

If such reductions are imposed, Medicare authorities will have to cut reimbursement rates -- as they did with Hill -- or stop covering some kinds of treatments. Taken together, the changes could affect virtually all of Medicare’s 43 million beneficiaries.

Although budget experts and healthcare economists believe costs must be reined in, Hill’s experience illustrates how hard that is to do without hurting elderly patients.

Hill has a chronic disease in which his immune system attacks the nerves in his limbs, causing weakness and loss of control. The medication he was receiving until last spring is called intravenous immune globulin, or IVIG. One treatment can cost at least $3,000.

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Most IVIG patients must receive infusions every three to four weeks, therefore the annual cost can exceed $50,000. According to an industry survey, the average doctor’s office would lose from $7,800 to $9,700 a month by continuing to provide treatment at the newly reduced Medicare rates.

“We warned the government,” said Dr. Mark Brecher, a University of North Carolina medical school professor who until recently headed an advisory committee of the U.S. Department of Health and Human Services. “The committee advised them a major problem was imminent, and to the best of my knowledge, I have seen no real action other than checking on the inventory [of IVIG].”

The panel Brecher headed called on the Department of Health and Human Services to declare a health emergency and override the reimbursement cutbacks. Administration officials have not done so. They suggest congressional action might be needed to change the payment formula.

“We’re on the problem,” Health and Human Services Secretary Mike Leavitt said in response to questions from a lawmaker at a recent Capitol Hill hearing. “We understand it, and we’re going to resolve it.”

But the congressman, Rep. Mark Foley (R-Fla.) said in an interview that he was worried that the government was moving too slowly. “We have people who could in fact die if they don’t get some treatment,” he said.

Doctors have had to scramble to find alternative treatments for patients who have no other insurance that will cover IVIG, or who can’t afford to pay for infusions, though the alternatives -- as in Hill’s case -- are often less effective.

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“The reality of these budgetary reductions is suffering and disability,” said Dr. Xavier Caro, the rheumatologist who treats Hill. “My suspicion is that it won’t be too much longer before we are going to have people around the United States suffering to the point where they are succumbing.”

Sometimes called an “immune system in a bag,” IVIG is a medication made from donated blood plasma, the fluid that remains when blood cells are removed. It is administered by medical professionals in a procedure that can last several hours.

Rich in antibodies, IVIG is used to treat an increasing variety of conditions. Patients with genetic immune system disorders that leave them vulnerable to infections depend on it for survival. It is also used for several diseases that affect the nerves. The one Hill suffers from is known as CIDP, chronic inflammatory demyelinating polyneuropathy.

Until last year, Medicare reimbursed doctors using a formula that relied on the equivalent of list prices for the medication. As costs kept rising because of growing demand, the agency -- with the blessing of Congress -- switched to a new payment formula based on an average of actual sale prices.

Doctors soon began reporting that Medicare’s new rate could not keep up with increasing prices. Many stopped providing the treatment in their offices and started sending patients to hospitals. Beginning this year, Medicare extended the lower rate to hospitals, which have also started cutting back.

“There is a worsening crisis in the availability of and access to [IVIG] products that is affecting and placing patients’ lives at risk,” the government’s Advisory Committee on Blood Safety and Availability warned in a letter to the Department of Health and Human Services. The panel recommended that Leavitt declare a public health emergency, which would allow him to override the reimbursement policy.

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That was in the summer. Medicare officials declined to comment, citing the sensitivity of the issue.

The agency has approved a new administration fee for hospitals and doctors providing IVIG treatment, but doctors say it is still not enough to cover costs.

“Medicare is just turning a blind eye, although they say they are looking into it,” said Dr. Norman Latov, a professor of neurology at Cornell University’s medical school in New York.

Some doctors say the medication is getting harder to find.

Around the country, many patients have had to cut back on the number of infusions they get, while others are tapping savings. Some are turning to alternate treatments. But Medicare might not be saving much money, because patients are getting sicker.

Hill was hospitalized Feb. 6 after he became too weak to walk or stand unaided. After he stopped the infusions, Hill began to get weaker and became prone to falling. “He slides down the wall,” said his wife, Helen. He is in a rehabilitation center, slowly regaining his ability to stand, walk short distances and perform simple tasks.

Said Hill: “It would have saved a lot of money if we had gone the other way, instead of this way.”

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