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Feds’ U-turn on drug costs calms organ transplant patients

By ADAM SMELTZ,, Tribune-Review,Greensburg,PA

POSTED: 06/09/14, 11:06 AM EDT

Organ transplant recipients on Medicare are relieved by the Obama administration’s change of course on regulating steep medication costs for them.

The administration had planned to relax an insurance coverage mandate for many transplant recipients, whose life-preserving medicine can cost more than $2,000 a month. The Centers for Medicare and Medicaid Services reversed that stance because of an avalanche of opposition from lawmakers and transplant recipients.

Two-time heart transplant recipient Rudy Molnar, 75, of Natrona Heights said the reversal is a relief for him and the transplant community. He estimated that, under the proposal, his out-of-pocket costs for transplant-related drugs could have jumped about 20 percent to $120 a month.

“There’s a lot of people who can’t even afford what they pay now for drugs,” said Molnar, who has spent more than $4,500 since January for all of his prescriptions. “It does get kind of tight sometimes. They really put the squeeze on you with all the medications you’re on.”

Since 2006, a federal guarantee has mandated that private insurance plans providing prescription benefits for seniors and disabled beneficiaries on Medicare must cover “all or substantially all” medications in three categories. They are widely used antidepressants, antipsychotics and prescriptions that suppress the immune system and prevent rejection of transplanted organs.

In January, Medicare officials said the provision no longer was necessary to guarantee access to the drugs. They said dropping the rule could save millions of dollars for taxpayers and beneficiaries, whose out-of-pocket expenses often hover around $50 a month.

Plus, Medicare leaders argued, the widened availability of generic drugs could allow some regulations to be relaxed safely.

Lawmakers including Sen. Bob Casey, D-Scranton; Sen. Pat Toomey, R-Lehigh Valley; and U.S. Rep. Tim Murphy, R-Upper St. Clair, disagreed and said the revision could diminish access for patients in need.

Medicare and Medicaid Administrator Marilyn Tavenner throttled back in a letter to Congress on March 10, when she wrote that the administration would put the proposal on hold for 2015 while it collects more feedback.

An agency notice in the Federal Register on May 23 alerted the public.

“Given the complexities of this issue and stakeholder input, we did not finalize this proposal,” Medicare officials wrote in a brief statement to the Tribune-Review. Tavenner, in her letter, left open the possibility that Medicare officials could introduce a revised measure “in future years.”

Toomey plans to keep a close watch, spokeswoman E.R. Anderson said.

“The price and availability of prescription drugs is critical to many, and he continues to be mindful that changes can have real consequences for beneficiaries,” Anderson said in a statement.

America’s Health Insurance Plans, a national trade association for health insurers, and Downtown-based insurer Highmark Inc. did not answer questions about the development.

UPMC Health Plan supports access to needed prescriptions but fears “blanketing entire drug classes as ‘protected’ “ when that can drive up costs without necessarily improving patient health, a spokeswoman wrote.

The possibility of another pitch to change the prescription coverage mandate worries Jim Gleason, president of the Transplant Recipients International Organization. The advocacy group, which includes about 100 members in the Pittsburgh area, is among more than a dozen that protested the January proposal.

“There’s a concern that they (will) wait until everything calms down and then sneak it back in again,” said Gleason, who lives in Edgewater Park, N.J.

Molnar, who leads the Pittsburgh chapter of TRIO, said federal agencies tend to “cut where it’s easiest to get away with it.”

Jack Silverstein, a kidney transplant recipient, said those who oversee the programs often don’t understand the transplant community.

“I think that’s the biggest problem. Most of them haven’t had a transplant, so they don’t know what’s going on,” said Silverstein, 68, of Monroeville, president of the Western Pennsylvania Kidney Support Groups. “The important thing is getting the word out to them.”

Adam Smeltz is a staff writer for Trib Total Media. He can be reached at 412-380-5676 or

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