Today I wrote a letter to Dateline NBC proposing that they cover this issue of FDA approval and insurance denial - as some of you may have noticed, I have posted many times in the past few days. This is so terrible that there is something out there to help us lead a better life. I resent that people have to go bankrupt in order to get medical help. I will not stop until there is a resolution. I have a few choices: to live like I am on meds or pay for the surgery myself - with a 1 level fusion and 2 leved ADR, it will run approx. $100,000. I can hold out for a bit longer, but I need to assess what all these drugs are doing to my system. Also, I am afraid of the fact that my back is so bad that it must be putting wear and tear on the other discs...

Anyway, I am going to contact all the other shows of this nature - if I strike it lucky, you will all be the first to know - keep your fingers crossed.

Laura,

Do you have the link or info to send a letter? I have one drafted all I need to do is send it out. I emailed Opera 2X but no response. I like the mass email idea. Anyone else on board? Lets pick a date to email them all at the same time.

Paulette,

Click on this link:
http://www.msnbc.msn.com/id/3303518/

At the right is will say, "How Do I contact NBC News or MSNBC TV" and then I just clicked on Dateline NBC"

I encourage all who are interested to write in.
Thanks!

I'm In !!!!!

Laura I also had the ADR/Fusion combo due to lack of facets (doctor removed them by mistake). My surgery was approximately $40,000 plus expenses for my husband and I.
Back in October Dr. Yue was not allowed to due my surgery in the states by FDA laws. If that has changed great, good news for you.
Did you ever consider going to Europe to have it done. Dr. B was many years of experience.

Judy

Is this the show where they have a live camera outside? Can I bring my picket? If you thought I was fighting before, you should see me go now. I'm in and on it. Bill

Hi All,

This is the opening to my letter to NBC. I encourage all of you to cut this and add your own story to the bottom. Or use it as a jump off to get started. I sent the letter to as many emails on the above link that may be interested. The more they receive at one time the better. I also put Artificial Disc Replacement Surgery in the subject area:

Dear NBC

There are thousands of people in the US that suffer tremendously from back pain and there insurance companies will only pay for fusion A surgery that takes away your mobility and cause the adjacent discs to fail in the future requiring more surgery. This is an outrage and we need your help to bring this to the attention of the American public. When I was first diagnosed with Degenerative Disc Disease I thought I was all alone but in the last few months I have realized it is not just about me but it is a much bigger, it is about thousands of Americans that are being denied health treatment for back problems because the insurance companies will not pay for Artificial Disc Replacement Surgery. This is an outrage and we desperately need your help to get the word out.....................

FYI I have already gotten a reply back from the local affiliate in Reno, Nevada They are very interested in my story. Maybe they can help us go even bigger. http://adrsupport.org/groupee_common...icon_smile.gif

Here is my letter:

Dear Dateline,

I am writing to you on behalf of thousands of people in need of an Artificial Disc Replacement (lumbar, thoracic or cervical). Since the FDA approval in October of 2004, hopes of severe pain sufferers have been shattered to find that most insurance companies are denying coverage for this procedure.

I have been suffering from severe back pain for over 2 years. I was born with a piece of a facet joint missing and now have 2 collapsed discs in my back. I am 45 years old and my daily activities have been diminished greatly and can only be tolerated by taking narcotic pain medication on a chronic basis. The operation that has been recommended by 3 of the top surgeons in this field (in Los Angeles) will cost approximately $100,000.

There are people who have paid for the operation out of their pockets, taken money from their 401K, retirement fund, credit cards, loans from family and friends. Some have been left financially ruined and ultimately filed for bankruptcy. There are many who have gone to Germany (where the Charite Disc was developed) to have the surgery because the cost is more efficient.

There are a few insurance companies, such as Aetna, Blue Cross of Mass. and a few others that are covering the ADR, but clearly not enough. I feel that this topic is worth publicizing as there are millions of people that suffer from chronic back pain.

Detailed information on the Charite Disc can be found at www.charitedisc.com

Thank you and I look forward to your response.

OK... my letter is already on it's way. There is power in numbers but I fear 500 +/- internationally will do little to encourage insurance companies to reach into their tightly sealed pockets.

As I mentioned in previous posts, to fight successfully, we need to combat the excuse used in denying coverage... which is that ADR's are EQUAL to fusion. A study proving superiority on some point is desperately needed. While telling NBC might bring our problem to the limelight... telling Johnson and Johnson that their profit is jeopardized every day until such a study is conducted might be even more effective. If they are just as greedy as the insurance companies, maybe our numbers will have an impact.

I was also thinking about consulting with an attorney. The problem is the cost to take this to a lawsuit would be prohibitive... maybe I'll start a fund!

Johnson & Johnson'e email address is DePuySpine@dpyus.jnj.com

Please include them in your emailing petitions.

Dale

I like your concise format Laura. Congrats. Paulettte on getting a response.

Maybe an email petition w/online signatures would be a good idea? I'm not sure how to do this but some political organizations use it.

Allan

Nice going Paulette - you can contact me if you need info of any kind - I am there %100.

Another angle that I thought might be to stress that because so many people are waiting for approval, they are taking more and more meds - which can't be good. I wonder sometimes if BC of CA is holding out in order to drive the cost of the disc down so that when they finally do cover it, the cost will be less.

I like all that I see....I have no idea what she can do, who she know, but my wife works for KIRO TV SEATTLE NBC (sorry ppffft) But possibly she can get these letters to someone?

Jefferson,

KIRO is CBS

I sent my letter in also. I had already written to Montel etc. I also contacted my state and US senators. I have heard nothing back from anyone yet. The email for dateline is dateline@msnbc.com

Jefferson you may be onto something. I found out a long time ago with another issue that it took getting to a Dateline producer before I ever got any type of response to my problem. Your wife might be able to get us a contact that we could give our stories to and see what a widespread problem this is.

OK scratch that its dateline@nbc.com I just got my first one back sorry for the wrong info.
Kim

Interesting. Tonight on our local news they did a report on the Charite and how great it is and yadda yadda, well up popped my dr, they interviewed him and he talked about the disc, he is the only one on the central coast to do the Charite replacement, so i emailed the news station, cause of course they didnt report about the lack of insurance covering the procedure. I already had sent the letter before i signed on and i wish i would have waited to take some stuff out of the persons post from their lettter, but oh well. I will let you all know how it goes. It isnt dateline but it is something. we need to put a fire under the Insurance companies


Julaine

Here is a list of everyone that I have emailed: dateline@nbc.com
2020@abc.com
abc.news.magazines@abc.com
NETAUDR@abc.com
today@nbc.com
EarlyShow@cbs.com
60m@cbsnews.com
60w@cbsnews.com
Viewerservices@foxnews.com
Oreilly@foxnews.com
Just in case anyone else needs the email addy's

Thanks Patrick, Shows you how much I really care which Networks covers what call letters and how much time we watch them!(My joke was that I do not care for either of them NBC especially, hers being CBS makes my time home alone no easier)
_____________carry on____________
My wife is willing to take any and ALL of this info here and take them straight to her head and main programming administrator if you continue to organise something representable. She read this thusfar and sees no reason to not have something eligible for airtime - too many poepl, too many doctors and too much pain.

everything you see on the KIRO screen is because of my wife. She has worked there for over 23 years. She knows anyone and all. If this is a serious enough of an issue: It goes and it can hit national if she nicely asks....ahem, stomps her feet. Her main boss has 2 blown discs right now and has no idea exactly what to do with the as a matter of fact, early denial stages of what to do what to do... (Pat, don't quote my mispealling ok, I am nediprated) k http://adrsupport.org/groupee_common.../icon_wink.gif

Cat-mt

Do you have the links for these shows that you could post?

Hi Everyone,
Thanks for your hard work and time in getting e-mails sent. I'm in too!
How about also writing to Hilary Clinton? She's so into healthcare and it certainly couldn't hurt.
here's her contact info Paulette provided back in June:
http://clinton.senate.gov/email_form.html
Andrea

Update: I sent an e-mail off to Sen. Clinton and received what looked like an automatic response indicating she is not able to respond to anyone outside of New York.
I will send the same e-mail to Colorado senators but maybe someone out there from New York could e-mail her too. I'll even provide e-mail I sent.
Thanks!
Andrea

Nediprated...is that before or after I become annebriated (spell check?) http://adrsupport.org/groupee_common...s/icon_eek.gif

Whatever station she works for...I would love to see a story on it. I just got a heads up on my surgery being postponed due to legal mumbo jumbo between the trial and the hospital...go figure http://adrsupport.org/groupee_common...s/icon_mad.gif

If your wife can get some coverage on this then count me in. I will give her any info I can and I am sure that others here can pipe in too!!! There are so many of us that if they see how many, they would have to be interested in the story I would think

Kim or Laura, or whoever seems to be landing as a committe chair - If someone wants to make a master file of sorts...We then could organise these letters and chronologically get things in order and decide how to best present them.

If CBS (KIRO) Here in Seattle was or was not interested, then it still will be presentable for the very next presentation and move on. This is a positive thing that you are doing.

ALL too often do we see the 'passing' of a very small spot of misinformed chronic pain owies, or a charite non fda approved thing just in the blink of an eye. WE ARE DISABLED and need some attention here!

If you would not mind, put the committee together, get the letters organized and get the back to us so that Sandy, my wofe would have something substantial to get to the program directors. It will get an answer when presented in that light, Thank you.

Folks, I am obviously happy to support the process; just let me know how.

http://adrsupport.org/groupee_common...icon_smile.gif

What? No one wrote to Oprah? (or did I miss it)

We all wrote to Oprah previously and no one has gotten any response that I know of so far. We all wrote Montel and various other TV personalities.

cervie,

I wrote Oprah 2X myself. Maybe if she hear about your story will get some attention. Would be a great time if we could get in their. http://adrsupport.org/groupee_common.../icon_razz.gif

On the business of selling ADR over fusion and for that matter, any other type of joint replacement surgery, there is one key factor that none of the investigators and ins. cos give any value: recovery time. Recovery times for ADR seem to be significantly shorter, allowing, one would presume, earlier returns to full-time work, less dependence on meds, return to exercise and healthy lifestyle, etc.

I think it's time they started factoring it into decisions.

Another thing - it seems most of the stats relate only to one-level surgeries - by far the most common, but are the OC the same for multi-level? I would think that ADR OC would be better esp for ROM. Is ROM considred significant by ins. cos? It sure is for me!