03/18/2010 05:12 am ET | Updated Nov 17, 2011

The Heath Insurance Dance

A few weeks ago I read an article in the LA Times about a
man, Epham Nehme, suing Blue Cross because the insurance company had denied his
request for a liver transplant outside his network even though
Ephram was told by his UCLA doctor to leave LA for a center which had more liver
offers and fewer people waiting, as his health was failing rapidly.

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

As many of you know, my husband Chris had gone through the same situation.  He was diagnosed with a very rare cancer of
the vascular system, EHE, in early May 2006 and by the time we found out,
Chris’ liver was severely compromised and the only treatment left that could
save him, was a liver transplant.  That was
the diagnosis of both Cedars-Sinai and UCLA Medical

By mid May, Chris’ health was declining so quickly that his
own doctor at Cedars – just like Epham’s -- advised him to go to another center.
That’s what we did.  We researched which
center would be the best, found that center to be Mayo Jacksonville, and packed
our bags.

My husband was dying, and even though Blue Cross denied covering
the transplant at Mayo Jacksonville, we left for Florida and wired $300,000 in cash 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 Times article entitled “Death By Geography” which described people listed
and waiting in large urban centers as dying, while the more aggressive
patients -- who picked up and left for other center -- surviving. 

Three weeks after arriving in Jacksonville, my husband was in
the ICU with only hours to spare, with his lungs, kidneys and liver  shutting down, when he finally got his
transplant.  So there is no doubt that
our decision to go to Mayo Jacksonville was the right one. 

Since contacting Epham’s attorney, Scott, I have signed away
all of Chris’ records for their case, have given an interview to CBS Nightly
(not aired yet) and will be a witness in the case all the way from Rio de
Janeiro, where I’m now working on a film.  

The reason I’m so passionate about this is very simple: why
is it that an insurance company would approve a transplant – so in essence
agreeing that the patient needs the operation to live – but impose restrictions
in the coverage, i.e. the location of the center?  What difference could it possible make?  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 or
any other health insurance would approve a transplant in LA but not approve it
in Jacksonville and/or Indiana or any other center in this country.
 After all the entire country does
business in American dollars and all centers are willing to accept whatever payment
an insurance company has negotiated with other centers.  So whatever the reasons are, we need to know.  

And why is it when we are faced with the possibility of losing
our life or the life of a loved one, do we also have to fight with an insurance
company which in theory is supposed to be there to take care of our medical
needs in the first place?

I remember once when my husband had a MRI of his liver and
the head radiologist of Cedars-Sinai 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 an idiot and didn’t know how to read a
scan and then proceed to teach her how, or she had to approve the scan.  I’m a very logical person and it was clear
that there was no third option available in this case. 
At the end I got this woman in Arizona
to agree to have her doctor have a peer to peer (that’s when two doctors
discuss a case) with my doctor.  The next
day the scan was approved but I was exhausted having given Blue Cross energy I didn’t
have or 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 for the kind of cancer Chris
had.  Excuse me but EHE (epithelioid
hemangioendothelioma) is a rare cancer. Statistics say there are 20 new cases a
year in the US
and 100 in the world.  Everything to
treat EHE is off label.  Avastin costs
$5000 a dose and Chris needed two a week and so I had to reach out to the drug
company, Genentech, and they graciously provided Chris with the Avastin he
needed.  Genetech saved my sanity but unfortunately
not my husband.

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

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 until you need them for something else, you might find out that the system
is not so great.  Chris had a PPO with a
$1500 deductible; not a bad plan by anybody’s standards.

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.

I believe that every human deserves medical attention and
treatment regardless of where they come from, their religion or financial
status.  Health care is a basic need and
what we have been doing so far in this country is acted like elitists deciding who gets care or who doesn’t. 

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