2 down...

and I don't know how many to go. Yesterday, Dec. 7, marked the two year anniversary of my Multiple Myeloma diagnosis. It has indeed been an eventful two years. Since my diagnosis I have undergone several rounds of chemotherapy, an autologous stem cell transplant, remission and relapse, and more chemotherapy. Now I find myself in a literal life and death struggle with my insurance provider.
My best option for further treatment is an allogeneic stem cell transplant, with stem cells provided by my younger sister.
I know the statistics, I've read the literature, I understand the life expectancy of a person with this disease. Even knowing all of this, even in the face of the insurance company's intransigence, I still have hope, I still believe. I believe that I will be fine no matter what happens. I heard a great sermon this morning about unloading all of your baggage by giving it to God. I have tried over these past two years, not always succesfully, to give the baggage that is MM to God. Today I renew that commitment. I have been blessed with a wonderful wife, a great family, and better friends than I deserve, all of whom have been on this road with me. When I was diagnosed, I wasn't sure I would be around to write this. Now I look forward to posting on the 20th anniversary of this date, and the 30th. Will I be able to do that? I don't know, but I do know that with God's help and the support of my family, my friends, and all of you, the journey, how ever long, will be a great ride.
Deacon John
The Solemnity of the Immaculate Conception
Dec. 8, 2009
St. Peregrine, Pray for Us
Blessed John XXIII, Pray for Us

Appalling Appealing

Ok, I have been as patient as I can, waiting for my insurance company to reply to my first letter appealing the denial of my treatment. Here's a copy of my latest letter, the last nice letter I plan to send:
On Nov. 2, I mailed a letter appealing your denial of my request for treatment of Multiple Myeloma using an allogenic stem cell transplant. I asked at that time that certain documents be sent to me, documents that your denial letter stated I was entitled to see. I also asked that a reason for the denial, other than the vague ones given, be presented to me. I have yet to hear from you, almost four weeks after my request. Hopefully this letter is moot and the requested documents are on their way to me. Should they not be forthcoming, I hope this letter will serve as a reminder that I have requested this information and I do expect to receive it. It is my sincere hope that the next time I correspond with you it will be in response to the requested information. I also wish to remind you to send this information to my doctor as well, letter appealing their denial of my treatment.
I await your reply.
I think I have been patient enough. I have had a couple of calls from the nurse case manager, urging me to contact my doctor and press him to change the treatment plan to one they can approve. Since I did not go to medical school, I think I'll let my doctor make treatment decisions. I'll give the insurance company a couple of more weeks before I write again. The next time I'll not be nearly as nice, and the letter may have a few more adresees.
Deacon John
The Second Sunday in Advent
Dec. 6, 2009
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

It's In The Mail...Almost

I guess I finally calmed down enough to write an appeal letter to my health insurance provider. I tried to be as nice and as calm as I could, and I think I succeeded too well. I may have been too nice. Here's the letter:
To Whom It May Concern:
I am writing to appeal the denial of my appeal of your original denial of payment for treatment of Multiple Myeloma using an allogeneic stem cell transplant. Your letter states that the denial is based on the treatment being a phase II clinical trial, trial number NCT00683946, despite being assured by my oncologist that this treatment is not a part of this study. Your letter states that a photocopy of the Plan provision on which this denial is based is enclosed with this letter. No such document accompanied the letter I received. I request that you provide me with this document.
The reason for denial remains vague, at least to me. Is it the procedure itself, the drugs involved, one of the drugs, all of the drugs, some combination of the drugs? Is the denial based on the allogeneic stem cell transplant? Please enlighten me as to the reason for the denial other than the claim that the treatment is experimental.
I also request that you send me copies of all relevant documents and information on which this decision was based. I also request that this information, if it has not already been given, be provided to my doctor,
I await your response.

I omitted my doc.'s name and address, for his privacy. I also omitted the name and address of my insurance company, only because I am holding back should I need to use it later. Believe me, if it will help I will make them known. This fight has just begun and I am as stubborn a human being as ever lived. I'm fighting for my life and I will fight as hard as I must, using whatever I must to get justice. After all, am I not paying them? I thought about this, am I not living up to my faith, am I being vindictive? While it is hard not to be, I also decided that I am not fighting just for me, I am also fighting for all those in my situation, those who for whatever reason can't fight back, or have been intimidated into not fighting. Perhaps my fight will in some way help them. I hope that in some way God is using me and my fight to help others. If so, this is all worth it in the end, no matter what that end may be.
Deacon John
Friday of the Thirty-first Week in Ordinary Time
Nov. 6, 2009
St. Peregrine, Pray for Us.
Blessed John XXIII, Pray for Us.

Not so appealing

I am waiting to talk to my doctor about appealing the denial of my appeal, and I thought that I would write my own letter of appeal to my insurance company as well. I decided to wait on that till I calm down a bit since the least inflammatory opening I could come up with was “Dear Corporate Scum.” I thought the ending was rather fair though since I did ask God to have mercy on their worm-eaten souls, giving them the benefit of the doubt as to whether or not they actually have souls. Ah well, I am praying that my faith kicks in, and I find a way to act in a more charitable manner. I am trying to remember to love my enemy, though why they should be my enemy is a mystery to me. Pray for me and for everyone being driven around the bend by this insane system.
Deacon John
Wednesday of the 29th Week in Ordinary Time
Oct. 21, 2009

Denial ain't just a river in Egypt...

I got the letter I halfway expected today, the letter from my insurance company denying my appeal of their decision to not cover my bone marrow transplant. I’m disappointed, but not surprised. I suppose their job at this point is to deny and delay in the hope that I will either quit or reach the point I am beyond help. Well, I am a long way from being beyond help, and if they think I will quit, they don’t know me very well. They denied stating that the transplant is part of a clinical trial, despite being assured by my doctor that I am not part of any clinical trial. Denial again seems to be based on one of the drugs the doctor wants to use. I get the awful feeling that people are playing semantic games with my life. I am getting in touch with my doctor in Chicago to see what the next step is, I am sure he will appeal the denial. I’m not through either. I will fight back, and fight as hard as I have to to win. I envy people in countries that don’t have this insane insurance mess, who don’t have to spend time begging for help from people they are paying to help them. This crazy system needs to change and change today. Single payer, anyone?
Deacon John
Tuesday of the Twenty-ninth Week in Ordinary Time
Oct. 20, 2009

I Won't Back Down

Last year before my first transplant my brother and sister-in-law made this a theme song for the fight. In light of the relapse, waithing for the next transplant, and insurance difficulties, I thought was a good idea to bring it back. Sing along!
http://www.youtube.com/watch?v=LKqO0FeaCFQ&feature=related
Sorry, I couldn't figure out how to upload the video.
You can also find in my Facebook page
http://www.facebook.com/home.php?ref=home#/home.php?ref=home
Deacon John
Saturday
Oct. 3, 2009
St. Peregrine, Pray for us
Blessed John XXIII, Pray for us

I'm Feeling Much Better Now....

Yesterday we completed another whirlwind trip to Chicago (nothing like spending 10 hours in a car) in order to meet the new transplant doctor and make some decisions based on the insurance company’s denial of coverage for the allogeneic transplant. We came away from the meeting with Dr. Artz feeling much better than when we went in. We had many questions, all of them were answered. Dr, Artz stated up front that my treatment is not part of the clinical trial being conducted, they simply want to use that protocol because they feel it will be the most effective. I felt better because I came away feeling that I was not simply a number in a study, but a person that they cared about. As far as the insurance denial Dr. Artz said not to worry, he would get it approved. He had his appeal letter ready, he simply wanted to talk with us first and make sure of what we wanted to do. He said he is a bulldog about these denials and assured us once he pushed the red tape aside and talked to the insurance company’s medical director, he would get approval. As far as any drugs they find objectionable, that can be fixed. He told us to call back in a month, he will have it approved by then. Impressive. We discussed a variety of treatment options, and why this option is the best at this time. When we asked him the question no doctor likes, what would you do, he hesitated a bit then said that with all I have going for me, a perfect donor match, being relatively young for a myeloma patient, and being otherwise in generally good health, knowing all the risks involved, he would not hesitate to do it. I believe him. I am once again convinced God led us to the right place, that this is where we will get the best treatment, this is our best chance at success. We definitely feel much better now, and are ready to move forward.
Deacon John
Feast of Sts. Cosmas and Damian
Sept. 25, 2009
St. Peregrine, pray for us
Blessed John XXIII, pray for us