Change Your Beliefs; Change Your Life

March 5, 2011 by  
Filed under Blog

Photo by Angie Rubin

In writing how our beliefs shape our actions, Susan Smalley, suggests we investigate these beliefs to understand if they are bringing about kindness and positivity or envy and anger to our lives.  Not as a moral stance – kindness is good and envy is bad – but because of how we experience life based on our beliefs.  Below is an excerpt of her post:

Joseph Campbell wrote at great length about the power of mythology. I was beginning to see how our beliefs — our mythologies — provide us with a means of understanding the unknown (in my friend’s case, this odd phenomenon of 111). If what we believe generates compassion, love, and helpful actions, perhaps those beliefs are beneficial to oneself and humanity at large. If our beliefs generate intolerance, inequality and hatred, perhaps those are ones you may want to jettison. But we need to examine how we relate to our beliefs, maybe more than dispelling of them as fact or fiction.”

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The Health Insurance Dance

October 31, 2009 by  
Filed under Blog

A few weeks ago I read an article in the LA Times,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.