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posted: 7/28/2014 5:30 AM

Kidney recipient finds endless headaches in obtaining needed pills

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  • Irene Schneider in 2010 with her three donors. Brother-in-law Duane Wepking (donor 2009) is at left; next is Schneider and her siblings, Kate Braus (donor 1994) and Joe Schneider (donor 1984).

    Irene Schneider in 2010 with her three donors. Brother-in-law Duane Wepking (donor 2009) is at left; next is Schneider and her siblings, Kate Braus (donor 1994) and Joe Schneider (donor 1984).
    Irene Schneider via Bloomberg

  • Kidney transplant recipient Irene Schneider shown in 2009 undergoing dialysis before her third transplant.

    Kidney transplant recipient Irene Schneider shown in 2009 undergoing dialysis before her third transplant.
    Mike Di Paola/Irene Schneider via Bloomberg

By Manuela Hoelterhoff
Bloomberg News

Having once offered my close friend Irene a kidney, I am always relieved to find her looking good and healthy when we meet.

The other day she seemed pale.

Born with two damaged kidneys in 1950, Irene Schneider was fortunate to have siblings and friends who, over the years, have provided her with three kidneys as hers slowly gave out.

Medications keep her going. She needs six: three of them immune suppressants, and two of those expensive -- $175 each per month.

Extracting them from her pharmacy has become increasingly difficult, she said.

Three major players control her well-being: The kidney transplant unit at Mount Sinai Hospital in New York; her insurance company, Empire Blue Cross & Blue Shield; and Express Scripts Holding, with its subsidiary Accredo of St. Louis.

Irene used to fill her prescriptions at a local CVS without a problem. On Friday, June 20, CVS called to say that Blue Cross was denying coverage. Suddenly, all six drugs had to be filled by Express Scripts through mail-order.

"So that Friday I called Blue Cross, then Express Scripts, and then their subsidiary, Accredo, which handles the expensive immune-suppressants," Irene said. "After about 40 minutes of talking to a series of at least two people at each company, Accredo issued an 'override' for mycophenolate, the drug I was almost out of, allowing CVS to dispense 14 pills, a one-week supplement to the half dozen I had left.

"At the same time, Express Scripts demanded that my doctor provide all new prescriptions. The existing CVS prescriptions would not do.

"On Monday, June 23, I emailed my doctor and the transplant clinic at Mount Sinai to request the new prescriptions for those three standing medications. The hospital clinic emailed back, saying they would only prescribe the immune-suppressants: tacrolimus, mycophenolate, and the dirt-cheap steroid prednisone.

"The others -- generic versions of Norvasc, Lipitor, and Fosamax -- would have to come from a primary care doctor.

"I pointed out that all six had originated with transplant doctors because they counteract or prevent side-effects of immune-suppression. Nephrologists have always been my primary physicians. Nope. No more.

"Days passed. On Thursday, I phoned Accredo to make sure I was getting the mycophenolate. Accredo couldn't find me or the prescription in their system. I emailed Mount Sinai again, urgently. The clinic finally phoned in the prescriptions and told Accredo to expedite delivery. I called Accredo.

"When the clerk finally found me in the system, she said the following:

"(1) Because the prescriptions were phoned in together, they were linked and would be dispensed together.

"(2) The tacrolimus was a 'Tier 4' drug. I asked what that means. It means it's so expensive that an internal policy exemption must be granted by Accredo. This made no sense, since I had earlier been told they each cost $175, but I feared complicating things further. Anyway, it didn't matter because …

"(3) If exemption isn't granted, they will not fill either one because the prescriptions are linked. Later, by the way, another clerk said that was not true, there is no link.

"(4) If approval is granted, the expedited order will be filled in 24-48 hours.

"(5) Prednisone has to come from Accredo's parent pharmacy, Express Scripts.''

I asked Irene if sick people are increasingly forced to order their drugs from distant places so they can't hunt down their tormentors with a hatchet.

Irene continued.

"So before I went to bed on Thursday night, I called Accredo to see if approval had been granted, starting a 25-minute phone call which began, yet again, with them unable to find me in their system, but insisting on going through their protocol (name, birth date, ZIP code) before they let me give my account number and I pop up.

"A very sympathetic woman informed me that the drugs weren't slated for delivery. They were still waiting for approval for the 'Tier 4' tacrolimus.

"I requested use of local CVS again, because I would swallow my last mycophenolate pill on Sunday night. That required really special approval because only one override is allowed. She advised me to call back in the morning. On Friday, June 28, I woke up to an email from Express Scripts, although I thought I'd been dealing with Accredo.

"The good news: the urgently needed mycophenolate is in process. The ghastly news: it will take 7-10 days, and I run out in three. I called and spoke to someone who, of course, couldn't find me in the system at first. She told me that everything was held up because Accredo requires prior authorization from my doctor. I immediately email Mount Sinai: 'The Accredo pharmacy is awaiting prior authorization before they fill the mycophenolate prescription.'"

"Less than an hour later, my clinic contact at Mount Sinai called to say that she reached Accredo and was told that, in fact, no prior authorization was required and that Accredo doesn't know why I was told it was.

"She added that she deals with pharmacies every day and that 'this happens all the time.'"

"So I called Accredo again. Same drill, can't find me, but this time, as the clerk was searching, I asked if I'm speaking to Express Scripts or Accredo, because it's never clear to me. She says Accredo, but adds that my drugs are in the Express Scripts system (which doesn't, however, mean any drugs will be expressed). I begged to use CVS until all of this was straightened out. This is not a feel-good drug, though obviously Valium should be dispensed with every 'specialty' prescription. The answer was no. I asked if I could speak to someone else.

"She said: 'I cannot volunteer to let you speak to a supervisor, but if you ask for one, I can transfer you.' So I got through to a supervisor who had the flexibility of a Soviet border guard. Finally, putting me on hold, she called Blue Cross. The answer was still no. 'What am I supposed to do?' I asked her. She asked if I could afford to pay for it out-of-pocket. I pointed out that I pay for health insurance, which pays for prescribed drugs -- that's the whole idea. But I'm beaten. I'm furious. I tell her that if I don't receive the mycophenolate by Monday, a lawyer will be in touch with Accredo.

"In desperation, I called my local CVS to explain the whole mess and ask how much it would cost to buy mycophenolate out-of-pocket. The pharmacist kindly offered to call Accredo and intervene. Less than 15 minutes later, he called back, saying he had approval to give me three more weeks' supply of mycophenolate for $70, minus the $17.50 that I already paid for the 14 pills received. Half an hour later, I picked them up."

I asked Irene how many medications she had after a week full of phone calls and emails.

"I have exactly one of six prescription refills," she said. "Next week I start over getting the rest, which means staying home all day since I must sign for them and don't have a doorman. Using a mail-order pharmacy is like being stuck in the waiting room of a really inefficient clinic."

My parents, I say, used to enjoy going to their small town drugstore because they were lonely and the people there were chatty and would ask Olga and Heinz how they were feeling.

When you're sick you want to speak to someone, however briefly, not jump through hoops on the phone.

Irene remembered that during New York's last blackout, she could rely on her local pharmacist to tell her which drugs absolutely needed refrigeration. He knew her and her many meds so well he would yell: "Clear the aisle!" when he saw her coming.

So, what's going wrong? I asked. Is this misery somehow connected to the affordable health care act?

"Nope," Irene said. "Go back to Ronald Reagan and his mania in the late 1980s for market-based models. The incentive is making money for the pharmaceuticals and insurers. I had one doctor tell me he retired early because the medical bureaucracy was threatening his health.

"My sister -- the one who gave me a kidney 20 years ago -- is a physician who shares his dismay. She thinks the system is more broken every day as insurance companies direct care."

Is the system fixable?

"Not even in a healthy person's lifetime, I suspect," said Irene.

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