Transplant Champ Goes Nuts Begging for Pills: Hoelterhoff

Tap for Slideshow
Source: Irene Schneider via Bloomberg

Irene Schneider poses with her three kidney-transplant donors in 2010. From left: Duane Wepking, Irene's brother-in-law, kidney donor from 2009; Irene Schneider; Kate Braus, M.D., sister, donor 1994; and Joe Schneider, brother, donor 1984.

Close
Source: Irene Schneider via Bloomberg

Irene Schneider poses with her three kidney-transplant donors in 2010. From left: Duane Wepking, Irene's brother-in-law, kidney donor from 2009; Irene Schneider; Kate Braus, M.D., sister, donor 1994; and Joe Schneider, brother, donor 1984. Close

Irene Schneider poses with her three kidney-transplant donors in 2010. From left: Duane Wepking, Irene's... Read More

Source: Irene Schneider via Bloomberg

Irene Schneider at the Golden Door Spa in California, recovering from her second kidney transplant. Close

Irene Schneider at the Golden Door Spa in California, recovering from her second kidney transplant.

Photographer: Christopher Furlong/Getty Images

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

Born with two damaged kidneys in 1950, Irene Schneider was fortunate to have loads of siblings and friends who, over... Read More

Photographer: Mike Di Paola. Source: Irene Schneider via Bloomberg

Irene Schneider in 2009, undergoing dialysis before her third transplant. Close

Irene Schneider in 2009, undergoing dialysis before her third transplant.

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 loads of 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, sitting down with a glass of Chardonnay. (Yes, you can have wine, and are often driven to drink).

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 Co. (ESRX), 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.

I topped off Irene’s glass and let her continue a saga familiar in details to large numbers of Americans who will go insane begging for pills from insurers.

40 Minutes, 14 Pills

“So that Friday I called Blue Cross, then Express Scripts, and then their subsidiary Accredo, which handles the expensive immune-suppressants. 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 e-mailed my doctor and the transplant clinic at Mount Sinai to request the new prescriptions for those three standing medications. The hospital clinic e-mailed 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.

Missing Prescription

“Days passed. On Thursday, I phoned Accredo to make sure I was getting the mycophenolate. Ha. Accredo couldn’t find me or the prescription in their system. I e-mailed 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.”

Give Me a Hatchet

At this point, 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.

We had another glass and wondered whether the patient care advocates were coached to drive patients nuts or just not very good with computers.

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, birthdate, 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.

Ghastly News

“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 over-ride is allowed. She advised me to call back in the morning. On Friday, June 28, I woke up to an e-mail 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. Tick tock. 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 e-mail Mount Sinai: ‘The Accredo pharmacy is awaiting prior authorization before they fill the mycophenolate prescription.’

All the Time

“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.

Pay Yourself

“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.”

Blame Obamacare?

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

“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 Obamacare?

“Nope. 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.

POSTSCRIPT: Following publication of this column, Irene Schneider heard from the pharmacy, Accredo, which called to say her specialty medications would be overnighted. The contact apologized for any inconvenience, while saying efforts had been made to contact her since June 30. She was offered a 90-day supply for convenience, a first. The dosage for one drug was incorrect, but fixed quickly by Mount Sinai Hospital. She expected to stay home to receive them tomorrow, July 10.

Bloomberg News heard from Brian Henry, vice president for corporate communications at Express Scripts, who wrote:

“We were sorry to hear about Irene’s experience, and while we felt it was not representative of how we work with plan members, we certainly understand that it was not the experience she wanted or expected. Whether from Express Scripts, or our specialty pharmacy, Accredo, we are completely focused on making sure patients get the medications they need. When we learn about situations where there was confusion and misunderstanding, we make it right, just as we will do in this case.

“Unlike most retail pharmacies, Accredo has the unique expertise to deliver complex specialty medications in the safest, most cost-effective manner. Accredo has expert pharmacists who specialize in treating specific illnesses, and they take care of patients every day to ensure they stay on the right regimen. In some instances, when there is an immediate patient need, we allow for courtesy refills at retail pharmacies that may not be in a specific plan network. Our high-touch, patient-centered model works well to ensure access, good patient outcomes, and cost savings.

“We regularly reach out to plan members to explain their benefit, provide guidance on how to get medications, and we also provide concierge service for patients who have complex diseases that require specialty medications. We understand that patients need their medication and we do all we can to make that process as simple as possible.

“We have shared Irene’s story with our internal teams to make sure that those who work with her directly are aware of her experience and that we continue to improve the service we provide to all patients.”

(Manuela Hoelterhoff is an executive editor for art at Bloomberg News. All opinions are her own.)

To contact the reporter on this story: Manuela Hoelterhoff in New York at mhoelterhoff@bloomberg.net

To contact the editors responsible for this story: John Brecher at jbrecher4@bloomberg.net Mark Beech, Kevin Miller

Bloomberg reserves the right to remove comments but is under no obligation to do so, or to explain individual moderation decisions.

Please enable JavaScript to view the comments powered by Disqus.