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 Center.

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 News (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 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 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. 

 

Follow Deborah Calla on Twitter: www.twitter.com/debcalla

Comments

[ConcernedMilf]

If every American has the right to life (per our Declaration of Independence), than we all have the self evident right of access to proper Healthcare to upkeep that life. When we hold certain truths to be self evident...­Life, Liberty, etc., than we ABSOLUTELY retain the right to a healthy & long life. Not a horrible illness ridden life with no access to the plentiful medical solutions that exist today. We all deserve access to Healtchcare, period.

That's the argument for making make Health Insurance available. What Congress is working on is a plan to make Health Care INSURANCE available to all. Not Public Healthcare hospitals for all.

So, I am not getting distracted by this national day of terrorism. I am writing snail mail letters to every Congressmen/Senator to get Health Care for Everyone. The workers on the Hill only respond to snail mail letters and I want to make this happen. For myself, my mother, my father, my stepfather, my friends, and all the people I know who've lost their jobs recently and need some help getting that insurance availability. If my hands don't hurt, I'm doing something wrong. Heck...eve­n going to my neighbors w/some extra preaddressed stationary, even gifting pens (regifting from cleaners) asking them to write too. This is more than a dance. It's time to hustle.

Facebook: Lisa Lindo
Twitter: lisalindo

[Andre Lieven]

Um... What's "Heath Insurance"?

"If you never say what you mean, you can never mean what you say."

[DavidBeckwith]

I can feel your tears as I read your words. I think it is important that people hear your story, and those like yours. Products and services should not have this effect upon people. On the contrary. Especially at those rates. Especially given the cost, which in this, and in so many other instances, is life itself.
But that is not the end of it, sadly. Sometimes the costs go beyond death, to the surrounding family, who are then burdened with draconian expense. What if Disney World (not nearly so expensive) had this effect on families, instead of the effect it usually has, which is nearly the opposite? How do they please, nay thrill, millions, while keeping a spotless environment? What can our health industry learn from Disney World? What if a trip to the hospital was more like those families on the Extreme Home Makeover? Body falling down? In need of repair? Come to Oz! Doctor Oz!
We need a clear, bold, and beautiful vision for what health care in the 21st century could become. Tragedies like yours needn't be repeated. But they can show what not to do. May your sacrifices not be for nought.

[Deborah Calla - Huffpost Blogger]

Thank you David. I just hope that we can start a change that will benefit all of us and specially the ones that need the most help. Best, Deborah