I have much to write about this week. I have had things mulling around in my head since last Tuesday but haven’t found the time to put them into words so I may write more than one post over the next few days.
These postings are outlets of my energy. They are a way to express my feelings and thoughts as it relates to my battle with Multiple Myeloma. They are also a way to keep everyone around me informed as to my progress – positive or negative – in that battle. By no means do I think that I am the only one that suffers, that I am the only one who is sick or who encounters difficulty day in and day out. As I have mentioned before, everyone has shit to deal with. Sometimes your shit is worse than others and sometimes it is better – but we all deal with it at one time or another. A few of my friends have had some shit to deal with over the past week. Whether it is shit of their own or the loss of a loved one I stand with you as you have with me. I have also said many times that I could never live long enough to pay back the kindness that others have bestowed on me (and I hope I never have to) but I have an opportunity to do so now. Therefore, please know that those that have had stuff this week – you are in my thoughts constantly.
So the last time we left our story Anthem Blue Cross of California was giving me a hard time about my stem cell transplant. Upon diagnosis, after much exhaustive research, we chose Dr. Jagannath at Mount Sinai hospital as my doctor. Dr. J is one of the TOP myeloma specialists in the world. He is the one who got me Carfilzomib before it was even approved for front line therapy. He is the one who developed the treatment plan. He was the one who put me into complete remission.
In May we found out from Anthem that they would not authorize the stem cell transplant (SCT) at Mt. Sinai because they do not consider it a “Center of Medical Excellence” and that I would have to go to either Sloan Kettering or Hackensack Medical Center. Dr. J said not to worry – go to Hackensack. Dr. Siegel at Hackensack is also a top Myeloma doctor. Everything would be fine.
To recap my past meetings with Dr. S: He recommended a different protocol than Dr. J. Nobody at Hackensack followed up with me afterwards. I finally met the transplant doctor who kept me waiting for over 90 minutes for an appointment that accomplished nothing and then nobody ever followed up with me from that appointment to get my SCT process going. In late June, Dr. J asked me if my stem cells had been harvested yet and I said no. He wanted to know why and I explained that I haven’t been through the process with Hackensack yet – they keep asking me to come back for consultations and now after the latest consult no one has scheduled my appointments. He said to get the stem cells harvested quickly. He put me on one more round of chemo. We found out from my routine blood work in early July that Myeloma may be back. I am out of remission. This could be a blip or it could be something more but my stem cells still aren’t harvested.
The delays at Hackensack have cost me my remission and I am PISSED. I went to Anthem and they said that I could APPEAL their decision and possibly have the SCT at Mt. Sinai – with the doctor I chose – and that has been treating me for the last seven months. My appeal came back and they denied it based on the fact that their (Anthem’s) doctor said there was no medical necessity to have the transplant at Mt. Sinai.
Hey Anthem doctor! How about the fact that Mt. Sinai put me into remission and Hackensack didn’t? Is that good enough?
Hey Anthem doctor! How about the fact that I have been treated by Dr. J for seven months and he was able to get me medicine that other doctors weren’t able to get? Medicine that put me in remission!
Hey Anthem doctor! How about the fact that the two doctors did not agree on the protocol and the doctor I chose put me into remission and now that I have been to your “center of medical excellence” I am not in remission anymore?
ARE ANY OF THESE THINGS TAKEN INTO CONSIDERATION UNDER APPEAL?
An appeal, by definition, is a request. A request to look at something outside of the parameters of which it has been originally judged. Yes – I KNOW – that my insurance coverage does not afford me to have the transplant at Mt. Sinai. Yes – I KNOW – that my insurance coverage does not have a relationship with Mt. Sinai hospital. Yes – I KNOW – that they don’t consider Mt. Sinai a “center of medical excellence.” That is why I made an APPEAL!
My appeal was rejected. Why? Because the plan doesn’t allow out of network SCTs. Why? Because Anthem does not have a relationship with Mt. Sinai Hospital. Why? Because Anthem does not consider Mt. Sinai hospital a “center of medical excellence.” HEY DUMB SHITS. I ALREADY KNEW THAT! THAT IS WHY I APPEALED YOUR DECISION.
The frustrating part of this is that we spent (Helene and I) hours on the phone with Anthem and the only thing they kept telling us was that Mt. Sinai is not a “center of medical excellence.” Finally I told the lady on the phone two things:
1. She has to stop using the terminology “center of medical excellence” because Mt. Sinai who they deem “not excellent” put me into remission and Hackensack who they deem “excellent” lost my remission. So their definition of “excellent” is really not accurate.
2. An APPEAL means that they have to look at a request from outside the boundaries of the plan. That there is something different about the circumstance that would warrant a different decision. It doesn’t mean to regurgitate the same decision based on the same reasons originally given.
I have wasted countless hours of my life arguing with Anthem Blue Cross of California only to come to the same conclusion: They would rather I DIE than get the proper treatment.
I played the game by their rules. They told me I had to switch doctors and I did – no matter that it made me uncomfortable and in my opinion compromised my care. The other place screwed it up. Now – Hackensack Medical Center is a WONDERFUL, WELL RESPECTED, TOP NOTCH, myeloma center. Dr. S is one of the foremost myeloma specialists in the world as well. I do not have a problem there. My problem is two things:
1. The administrative staff at Hackensack dropped the ball in my case and lost my remission
2. I have had the BEST results possible at Mt. Sinai
Why on Earth would you reject this appeal? The only reason is that they don’t care if I live or die. It is that simple. I am willing to pay out of network rates for the best treatment possible but Anthem won’t let me. My life is meaningless to them.
So here I sit – and wait – until July 29th when I finally begin the process of stem cell harvest at Hackensack Medical Center as my fucking insurance company wants. I am sure they will do a great job. So far the transplant coordinator has been great. She is very communicative and is taking care of all of my appointments and questions without hesitation. BUT – it isn’t my guy. It isn’t my CHOICE to be there. AND there isn’t any good reason why I am forced to be there.
This past weekend, in a very high profile murder/manslaughter case, George Zimmerman was found not guilty in the shooting of Trayvon Martin. It is a tragedy – loss of life is a tragedy – but a jury found Zimmerman acted in self defense. Now every movie star, politician and talking head is calling for an appeal. The Department of Justice said they would “look into this further” and Harry Reid said that “this is not over.” They will APPEAL that decision. Now – I don’t have an opinion on the case. I don’t know enough about the facts associated with it to form an opinion. What I do know is that when things get to a national level of consicousness – they become politicized – people get their appeal heard. For us little guys – we battle every day with shitty decisions that ill informed people make on our behalf for their own benefit – and there ain’t a DAMN thing we can do about it. That SUCKS.
Regardless, with the support of many – family, friends, associates – I will beat this thing – regardless.