The Health Insurance Dance

October 31, 2009 by  
Filed under Blog

A few weeks ago I read an article in the LA Times http://www.latimes.com/business/la-fi-transplant7-2009oct07,0,6616912.story about a man, Epham Nehme, suing Blue Cross because the insurance company had denied his request for a liver transplant outside his network (Los Angeles) when advised by his UCLA doctor to leave LA for a center with a shorter waiting list as his health was declining too quickly.

I contacted the LA Times journalist and she gave me the email address for Epham’s attorney, Scott Glovsky.  I sent the attorney an email letting him know that I thought I could help. 

My husband Chris had gone through the same thing.  Chris was diagnosed with a very rare cancer of the vascular system, EHE (epithelioid hemangioendothelioma), in early May 2006.  By the time we found out, Chris’ liver was severally compromised and the only thing that could save him was a liver transplant.  That was the diagnosis of both Cedars Sinai and UCLA Medical Center.

By mid May, Chris’ health was declining so rapidly that his own doctor at Cedars – just like Epham – advised him to go to another center. That’s what we did.  My husband was dying and even though Blue Cross had denied to cover the transplant at Mayo Jacksonville, the highest number of transplants at the time – we left for Florida having to wire $300,000 in cash a week later as a deposit for the transplant. 

Six days before Chris was transplanted Blue Cross approved the out of network operation but I have a suspicion that had something to do with an LA Time article entitled “Death By Geography” which described that people waiting in urban centers for a transplant were most likely to die than the people that were aggressive and picked up and left for other centers.  My husband was transplant from the ICU with his lungs and kidneys shutting down.

Since contacting Epham’s attorney, Scott, I have signed away all of Chris’ records for their case, have given an interview to CBS nightly news (not aired yet) and will be a witness in the case.

The reason I’m so passionate about this is very simple: why is that an insurance company would approve a transplant – so recognizing the patient needs the operation to live – but impose restrictions in the coverage, i.e. the location of the center?  Is it because they are hoping that some of these patients will die waiting and therefore they will never have to pay?  Because it makes no sense that Blue Cross would approve a transplant in LA but not approve it in Jacksonville and/or Indiana, after all the entire country does business in American dollars and all centers are willing to accept whatever an insurance company agreement is with other centers.  Whatever the real reasons we need to know.

Why is it when you are faced with the possibility of losing your life or the life of a loved one, do you also have to fight with the insurance company which in theory is there to take care of your medical needs when they arise?

I remember once when my husband had a MRI of his liver and the head radiologist of Cedars said she needed a PET scan because the MRI wasn’t clear enough and Blue Cross denied it.  After many calls I got on the phone with the center in Arizona where the doctor who had issued the denial worked and was able to talk to the supervisor of that institution.  I told her she had two choices: either she would get on a plane and come to Cedars and tell the head radiologist that she was stupid and didn’t know how to read a scan and proceed to teach her how or she had to have the scan approved.  There was no third option available.  At the end I got her to agree to have her doctor have a peer to peer (that’s when two doctors discuss a case) with my doctor.  The scan was approved but I was exhausted having given Blue Cross energy I couldn’t spare.

Or what about when Chris needed Avastin ( an angiogenesis inhibitor meant to cut blood supply to cancer cells) and Blue Cross denied it?  Why? Because it had not been approved by the kind of cancer Chris had.  Excuse me EHE is a rare cancer. Statistics say 20 new cases a year in the US and 100 in the world.  Everything is off label when you are talking about treating EHE.  Avastin cost $5000 a dose and Chris needed two a week and so I reached out to the drug company, Genentech, and they graciously provided Chris with the Avastin he needed.

Chris’ fight lasted two and a half years and although those years were extremely hard they were also extremely beautiful; we loved to our fullest.

I think it is important for people to realize the health system is fine until you really need it.  Having your insurance company pay for antibiotics is one thing but just wait when you need them for something else, you might find out that it is not so great. 

So I’m doing my part and trying to help and bring change in any way I can because while taking care of Chris I wondered how a more shy person would fair in such a system. Probably not very well. 

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My First Sip

July 19, 2009 by  
Filed under Featured

Written by Chris Rubin

I walked down into my basement a couple of weeks ago and rummaged through the wine racks, the small wine refrigerator, even the haphazard, precarious piles on the floor. I write about wine for a living, so I have more than the average person – okay, probably more than 50 average people put together. I needed a really special wine, so I searched through the 1000 or so bottles I had amassed over the past decade.

I kept being tempted, though, to grab something less than extraordinary, something of which I had several vintages, or several bottles from the same year. I had to fight with myself to pull out a one of a kind, one of the few big guns in my collection. I soon unearthed a ’96 Penfolds Grange and knew that it was the right bottle to open for this occasion.

I brought the dusty bottle upstairs, where my wife, my sister and her girlfriend waited. I grabbed four Riedel syrah glasses (Grange, Australia’s best-known wine, always features syrah as the dominant grape, and this vintage was 96% syrah, with just a splash of cabernet) and a corkscrew and joined them in the living room.

It was Thursday, December 28, 2006, and I wanted to open a bottle that would be memorable. The Grange would qualify, I suppose, for any wine lover. But the first sip that evening would have special significance for me.

Nearly nine months earlier, on April 5, I first became aware that I was seriously ill, and that the problem was in my liver. I had experienced intense pain the day before on an overnight flight home from New Zealand. Even in the comfort of Business Class, with a fully reclining seat/bed, I was in agony. Nonetheless, I had gone to a family dinner the evening of the 4th, bringing along a precious bottle of Sea Smoke Ten pinot noir. Though the wine was delicious, I couldn’t drink much as I simply did not feel good. My family gladly took up the slack.

Most nights before this, I had opened a nice bottle of wine and shared it over dinner with my wife. But the Sea Smoke turned out to be the last wine I drank as a diagnosis of a vascular tumor in my liver soon followed. The malignancy was so rare my older brother labeled it a “boutique” cancer, a play on the small production wine we had so recently shared.

When it became obvious I was no longer able or allowed to drink, I wondered if it would be difficult to give up. Luckily, the answer was no. I happily opened and poured wine for my wife and often inhaled the aromas, but felt no urge to drink, or even taste.

I needed a new liver, and I needed one fast, and the doctors at Cedars Sinai had told me they did not expect to be able to find one in time. In early June, my wife and I relocated to Jacksonville, Florida, to be close to the Mayo Clinic, perhaps the top facility in the country for liver surgery. I was no longer really able to travel, so we got there by air ambulance, a fancy term for a not so fancy yet very expensive private jet complete with a stretcher and a team of nurses.

Ensconced in our condo and awaiting the call that an organ had been found, I spent the days at the hospital undergoing a series of tests and was in and out of the Emergency Room with a variety of related ailments. A glass of wine each night helped my wife maintain her sanity, but drinking was the furthest thing from my mind. I was too busy trying to survive.

Miraculously, I got my liver just three weeks after arriving in Jacksonville, on June 26, and was home a scant three weeks later. I had lost 70 pounds and, temporarily, my mind, but somehow made it through the ordeal, even if I looked more like a concentration camp survivor than the well-fed food and wine writer I had previously been. I slowly resumed my exercise routine – a daily three mile walk around the reservoir in my neighborhood – and returned to work and other facets of a normal life that once seemed hopelessly distant.

As Christmas approached, I realized I was nearing the six month anniversary of the surgery – a major watershed as I would be moving past the most dangerous phase for organ rejection and other complications from the transplant. I had switched to a diet of mostly organic foods and, of course, continued to eschew alcohol. I felt fantastic by almost any measure.

But wine was a significant part of my work and my life, and I hated to imagine a future without it. Thinking ahead to the day I would hit my main liver doctor the big question, I asked a couple of specialists along the way, and neither had any objections. In fact, the tumor specialist I visited in New York turned out to be a major wine geek, and he advised me to “spit the crap, and drink moderately of the good stuff.” Good advice for anyone, really, and close to how I had lived my life with my first liver.

Still, I knew I would abide by the decision of my liver specialist at Cedars, as he had been part of the team that diagnosed me and had been overseeing my post-transplant care since my return to Los Angeles. I had given him a bottle of Krug Champagne, taken from my cellar, before I left for Jacksonville. It was a genuine token of my appreciation – and it seemed likely I’d never be able to drink it, one way or another. And if it helped sway his decision, well that was just a bonus.

Finally, I gathered my courage and sent the question by email. I had worried for months that I would never be allowed to drink again, and that I would have to find a new field of work. Naturally, surviving was far more important than continuing in my previous job, but I needed to work, and I’d have to find another subject if I weren’t allowed to drink. So I was thrilled to find out my doctor had no problem with “moderate” consumption of wine for me. I didn’t even bother to ask him to define the term as I knew my wife’s interpretation would be far more strict than his – and the one I would most likely have to follow.

I sat down on December 28 with three people very close to me to celebrate one more step towards reclaiming my earlier, “normal” life. I wondered as I opened the bottle of Grange if I had been too ambitious, if maybe I should have started with a simpler wine, sort of like training wheels, to ease me back into it. But then the cork was out, and the decision was made. Luckily, I had not forgotten how to drink. It is, apparently, much like riding a bicycle: it all came back to me in a second.

I filled each of the glasses about one third full and passed them around. Fortunately, I had retained my wine swirling skills by muscle memory: there were no embarrassing missteps, spills or other accidents on this first outing. Finally, I raised the glass to my nose and inhaled, savoring the aroma – a total knockout in the case of this bottle.

I silently toasted the anonymous donor and his or her family; their thoughtfulness and generosity at what must have been the most difficult time in their lives had literally saved my life. And then I took that long-awaited first sip.

Wow – it was explosive. I was afraid something like wine might seem trivial in my personal new world order, but I was immediately blown away by this rich, complex wine. Sure, I could say it had strong cassis aromas and a subtle hint of licorice, but – far more important – the wine was life itself. Bottled nearly a decade ago, this Grange was vivacious and bursting with energy. I temporarily forgot my long, enforced abstinence and was caught up in the complex web of flavors. “Really nice,” said my sister. Yes, it was. We all sat in silence, assessing the scale of this massive wine.

Was I just caught up in the moment? Would a bottle of plonk have had the same effect? My emotions had been ramped up ever since the surgery, partly from the anti-rejection drugs, partly from the sheer thrill of being alive. So it was probably both the greatness of the wine and my general heightened emotional state that produced such a profound effect, much as I had wept at the sheer beauty of the music when listening, post surgery, to Joseph Arthur, Peter Gabriel and Ludwig van Beethoven on my iPod in the hospital bed.

Websites showed a price range from $250 to $450, perhaps even higher, for the ’96 Grange. Robert Parker awarded the wine a 93 on his 100 point scale, with the provision that the score might go up as it reached optimum age. For me, it was simply off the charts.

Now, having learned the hard way that life is truly too short to save just about anything for a “special” day that may or may not arrive, I will no longer hoard these big wines. Anyone who has been through a similar life-threatening and life-altering experience will almost certainly tell you that every day you are alive is special.

Most of all, it felt miraculous to be sitting there, back to 100% good health, surrounded by loved ones – with the added bonus of a glass of very fine wine in hand. I got woozy from just a few sips. Not drunk, really, but more an intoxication of the senses. I basked in the warm, mellow feeling that permeated my body as I remembered – and experienced again – the unique warm camaraderie of people sharing good conversation and a great bottle of wine.

Go to www.donatelife.net to find out how to become an organ donor.

Chris Rubin, an independent journalist wrote for Variety, Travel & Leisure, Robb Report, Rolling Stone Magazine, LA Times, LA Weekly and many other publications on music, restaurants, wines and spirits.

Chris Rubin died on August 15th 2008 from complications of a rare vascular cancer. The above piece was written in 2007.

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