Thursday, February 5, 2009

They denied Cyber Knife....

I just received a phone call from Diane. The insurance company has denied the Cyber Knife procedure. Diane is having a letter drafted in hopes that we can get our Senator to sign it. If any of you know someone who may have some influence in this area please let us know. This is just insane.

Yesterday Diane had to carry Cody the whole time she was at the hospital. His left leg is really hurting him and he can put any weight on it. It is so hard to see him this way. It makes me want to cry. Through it all, he really doesn't complain. He just gets from point A to point B the best he can.

Thanks Mary,

Our Senator is James Colgan of Virginia. Here is a link to his page.


29 comments:

elizabethnyc said...

Jeez Mickey, I'm so sorry to hear that - what a buncha *@&$%&# idiots. I just can't get over the fact that insurance companies have power over a doctor's ability to treat a patient.

I'm so frustrated for you all. and so sorry to hear that Cody's in pain from his leg.

Sending you all every positive thought I can muster, and prayers continue...

Cameron said...

Mickey,
Are we talking Senators in VA or DC? I am furious about the denial and his pain. If we could just get a name, we in blogland can bombard him with emails and faxes to get him to notice and do something about this. Let us know.

Mary

Cameron said...

http://www.npaf.org/federal/health-insurance-portability-assurance-initiative.html

Does this help you find the senators you need to talk too? I am just trying to find things on the internet. Sorry if it is a bad link for help.

Dottie O said...

Email sent.

Hugs to all,


Dottie

delighted heart said...

So sorry to hear the news...Don't give up hope! I have a feeling the senator's office is getting bombarded with emails this morning!
Praying for a reversal on that decision. Hang in there!
Hugs to you all...
Patti

trash talk said...

We will continue to pray for your family and for a reversal of the insurance co. decision. I really don't know what a cyberknife is, but it sounds like what was used to remove the heart from insurance companies. Debbie

Anonymous said...

I can't believe how much of a pain in the ^%#$^ the insurance companies are being. It is irritating, that they deny something so needed. Prayers and thoughts your way.

Susan and Jonathan

Jim Wilson said...

Have you tried writing to the news folks.

For Fox, the email is fox5tips@wttg.com

and they want the following:

Thank you for contacting Fox 5, WTTG, in Washington, DC. (NOT New York City) We do not
have the resources to respond to every consumer or investigative tip, but if we can use
your story, we will! We will not reveal your identity unless you give us permission to
do so. Please provide the following information: (click reply in your email account,
then fill out the form below.)

NAME:
DAYTIME PHONE:
EVENING PHONE:
ADDRESS:
EMAIL ADDRESS:
WOULD YOU BE WILLING TO BE INTERVIEWED ON CAMERA?

COMPANY OR AGENCY YOU WANT TO COMPLAIN ABOUT:
ADDRESS:
PHONE:
WEBSITE:
DATE(S) OF INCIDENT(S):
ARE/WERE YOU AN EMPLOYEE OF THE COMPANY/AGENCY?
WRITE A BRIEF DESCRIPTION OF THE TIP/PROBLEM:

DO YOU HAVE THE FOLLOWING ITEMS?
A WRITTEN CONTRACT:
OTHER DOCUMENTS WHICH PROVE YOUR POINT:
PHOTO OR VIDEO EVIDENCE:
OTHER VICTIMS OR WITNESSES:

HAVE YOU CONTACTED ANYBODY ELSE ABOUT THIS TIP/PROBLEM?
ATTORNEY:
BETTER BUSINESS BUREAU:
CITY GOVERNMENT:
COUNTY GOVERNMENT:
STATE GOVERNMENT:
OTHER TV STATIONS OR NEWSPAPERS:

Gettin Older said...

That is just stupid. I can't imagine the procedure would be that much more than regular Radiation Therapy.

Cameron said...

Thank you! I just spotted the link at the top of your page. I wrote a lengthy email to him. I hope you don't mind but I included your blog link too. Will keep prayinh hard this helps.

209Mike said...

What a bunch of horse sh!t. Really sorry to hear about that. I'll send a note as well to the Senator. Good luck and keep the faith.

Anonymous said...

E-mail sent to Senator Colgan on behalf of Cody, I hope all of these spur him into action. Continued prayers and as always if you need anything don't hesitate to ask.

Dan

Anonymous said...

I can't believe this. I know this has you all in stitches and I don't blame you. I've always said that it's a shame that we are forced to pay for all this insurance but when you actually need/use it then they want to drop you. I think insurance companies are from the devil!!! Anyway will send a letter to your senator and if there is anything else I can do let me know. This got my bp high just reading it. I bet they would do something if it were their child.

Prayers for Cody and the family continue.

Teresa (tcoplen)

Trish said...

Would a flood of emails and phone calls to the insurance company help or hurt your cause? If you think it helps list the info and I'm sure they will hear from all of us.

Anonymous said...

Mickey I am sure the Senator is getting blasted with e-mails. As the anxiety and stress reach a point none of us can understand your blogger family are praying for all of you.

You are an incredibly strong family!

Shilrley M-J

Anonymous said...

Mickey, I can't believe the insurance company denied this treatment. I copied my letter to your senator to your email. If you can send me the name and address of your insurance company, (to my email), I will have users of the cyberknife in my area write to the company in support. It appalls me that it's not denied to seniors on medicare and they are denying Cody.
Prayers, positive thoughts and LOTS OF EMAILS continue. g2g

Anonymous said...

I am so sorry that things are not going smoothly. I am here for you if there is anything I can do. I think about Cody all the time. Please give my love to him (at least 5 hugs worth.)
Casey (MSKCC)
xcaseybx@yahoo.com

Cap'n Ron said...

Mickey,
First, sorry that I haven't checked in for a bit.... out of town with limited internet.

Second, I am so sorry to hear of the continued trials and challenges you guys are having to go through. Insurance companies have absolutely no soul. I honestly don't have a clue how they can look at themselves in the mirror.

I sure hope things improve for Cody and he can at least be more comfortable. This must be excruciating for your entire family. I'll be sending every ounce of possitive energy I have in your direction.

Take care of yourself buddy!

Ron

Monica Cassier said...

Hi Mick,

Can you post a copy of the letter Cameron sent to the Senator? We could all just copy and send that - it would be very quick and easy to do. Also, what about the Insurance company? what about a lawyer reaching out on Cody's behalf? What is your health care company?
monica

Cameron said...

Mickey,
It appears I do not have the letter in my sent file. However, I will work on one tonight (since I have it fresh in my head) and repost it here. Sorry about that. I won't get to it till after my son goes down (8pm) but be on the look out if anyone wants to copy and bombard the office. I sure hope you hear something and it helps. It is unbelievable and makes me so mad.

TiredMamaRunning said...

Un-freaking-believable. I'm furious at the insurance company for you. Continued prayers being said for Cody, and hope to see that the insurance decision has been overturned very quickly.

jeriberinanabana said...

What a horrible thing to have to go through. I'm saying more prayers right now.

Anonymous said...

Prayers, prayers, prayers. I don't know what senators do with letters from people outside their district, but I sent something worded like "health care is a national issue." I hope it helps. My thoughts are with you guys every day.
Tamara (runlonger)

Cameron said...
This comment has been removed by the author.
Cameron said...

Mickey,
Here is the letter you requested on Cameron's blog. If you need anything my email is:

monarch444@yahoo.com

Here is the letter. I am resending it again tonight. I do not care how many people want to copy and send it to him again. If you have a blog, ask your followers to do the same. Post my letter to make it easier for them. Just be sure to change your name and location. They also ask for phone number to be included.

February 6, 2009

Dear Senator Colgan,

I am writing to you about a family that is in dire need of your help. They have a young son who is very sick. He has cancer. The young boy, Cody is in need of a medically necessary procedure called the Cyber Knife. At first the insurance company denied the procedure but the family was told that this is what usually happens and then the doctors would appeal the decision. Once it was resubmitted the person at the insurance company told the doctor that there was a good chance it would be approved. They just found out that this procedure was denied for the second time. How can an insurance company that a family has been paying into all these years for coverage, deny someone when they most need it? It does not make sense. It is inhumane. The insurance company is going to have a bigger problem on their hands if something happens to this precious boy. We are asking for help. We do not know what to do anymore. The mother of this boy has fought day in and day out to get what her son needs. Her parents do everything possible for their boy. But their hands are tied and now as their friends, family, and people they do not even know, are reaching out to someone else who may be able to get through to the insurance company. It is crucial we get them to listen and reverse their decision. Cody is in pain. No one should be in pain. He needs to be carried due to his pain. How can an insurance company allow a boy to suffer? Surely the medical review board that makes these decisions have sons and daughters of their own? Surely they would get on their hands and knees and beg someone for help if they were walking in these parents shoes. It is appalling and we ask and pray for your help. If you do not have the means to help us, please let us know who we can go to or forward this email to the proper contacts.

Thank you for reading this email. I know mine is not the only email you are receiving. We understand you are a busy person but if you could just set aside some time, you could possibly be saving a life and the heartache of a lot of people who love little Cody.

http://deckapes.blogspot.com/2009/02/they-denied-cyber-knife.html

Maryrose Gill
Martinsburg, WV 25405
304-616-0425

Kelly said...

Mickey,
I CANT believe they denied Cody, i see it time and time again, and it never gets less ridiculous. I think going to the news is a good idea.. I am gonna be in town on monday, i REALLY want to see you guys, will you guys be at gtown at all? Is there anything i can do? email me at kellybergfeld@gmail.com if you think of anything. Love you all and thinking about you guys all the time.

Monica Cassier said...

Dear Senator:

I'm writing to you today with the hopes you can save the life of a child. The Johnson family of Manassas, VA, have a young son who is very sick. He has neuroblastoma, a hidesous and life-threateneing cancer. This is his 3rd recurrance. To date, he has had more rounds of chemo than can be counted, had 3/4 or his liver surgically removed, made half a dozen trips to Memorial Sloan Kettering for painful treatment available only in NYC, radiation treatments, scans, and biopsies. He has gone through more pain than most of us will feel in our lifetime. Cody is 6 years old. His entire life has been disrupted. He started kindergarten and was forced home when the cancer returned. He has not been back at school since NOVEMBER 2007 because his fragile immune system could not handle a school environment. His father, Mickey Johnson, has kept a detailed record of his son's treatment for the last 14 months. You can view it here:
http://deckapes.blogspot.com/

Today, the cancer has returned to the bone in Cody's leg. He is undergoing radiation that makes it painful to even walk, as well as chemo to destroy the monster that is assaulting his young body. Cody is in need of a medically necessary procedure called the "Cyber Knife". What is "Cyber Knife"? Typically requiring only five or fewer outpatient visits, the CyberKnife System offers many cancer patients an effective and pain-free alternative to surgery and other prolonged, time-consuming therapies. The insurance company said no once. The family appealed the decision. It was denied again.

So instead of giving this family - who has been paying premiums for YEARS - the best possible care to treat their son who is suffering from a potentially DEADLY disease - the insurance company will relegate thie child to more rounds of radiation, chemo, and pain. This child is suffering and this insurance company looks at him as nothing more than a line item on a balance sheet.

I realize health care is expensive. But what is the value of the life of a child? We all know that if one of the executives of this company had a child in a situation similar to Cody's, the procedure would be approved without hesitation.

This is not something we can sit around and think about. CODY MAY DIE. This is about the LIFE of this child. This family isn't asking for some untested, unregulated, or alternative procedure; they are only asking for the best possible care to save the life of their son! That the insurance company thinks that it's ok to say "NO" and leave this family with the only alternative of submitting their son to the agony of further radiation and chemotherapy is BARBARIC.

Please, help this family. Do what you can to save the life of this child.

Sincerely Yours,

Monica Cassier
Midlothian, VA

Michelle said...

Continued prayers and positive thoughts sent to Cody and family.

Mishy
(formerly of RW)

Anonymous said...

I just came across your blog and want to say that my thoughts and prayers are with Cody and your family. I'm not sure if you are familiar with this story, but I thought it might provide some hope as there was a similar case recently on the west coast. Here is the link to the story:
http://www.ocregister.com/articles/nick-patti-medical-2043996-one-pacificare