Okay everyone, this may be the time to email Oprah about our coverage issues. Oprah has a link asking for people to email her about our health insurance woes. See http://www.oprah.com/tows/pastshows/...070605_b.jhtml

She recently had Micheal Moore on her show to discuss his latest documentary "SICKO" where he takes the health insurance indus head on. I just saw part of the Oprah show and he had a few woman who were denied test and/or treatment because it was experimental etc....

So it made me think..if she gets enough of our stories...maybe ADR can get a little air time.

Harrison,

What if we had some sort of organized thoughtful submission to the Oprah show, discussing you, this forum, your connections, our desire for ADR and how so many people have to go out of the country to get the best available treatment, and of course the issue that bugs me the most...how FEHB forces private insurers to cover this procedure for fed employees because fed gov't plan's have determined an FDA approved device can no longer be "investigational and experimental" while private employed invdividuals have a never ending uphill battle to get coverage.

Maybe we could all "sign" something thoughtful that incorporates references to surgeons and/or spinal organizations, literature? What do you think. Is there a way to have as many people sign something via the forum?

of course I think personal stories submitted invidually are also compelling!

since we don't have exact facts regarding how many people have been pursuing ADR and how many people have been denied, I don't think this will make their 30 second sound bite. However, if you can submit ridiculously approved coverage as opposed to life saving disapproved coverage then they would probably be happy to hear from you.

For instance, Blue Shield of California will cover an individual receiving a Facial Cleaning (as long as the doctor knows the codes), but they won't cover an MRI.

Did you see the story on Oprah? I'm not asking in general to send pleas to her...like others have before. This time it's an invitation by her to discuss the craziness of health care. Yes death cases will get more time, but If there is a large group mobilized....back injuries have a HUGE impact on the productivity of the work force! The prevelence of our issue alone should give it notice. Esp since so many of us would not be applying for disability, taking so much time off from work, or not
working at all because of back problems!

Plus don't you think some of the horror stories out of Stenum might get their attn for a number of reasons: 1, US citizens are being preyed on to get treatment at an undesirable facility because they cant get their ins co to pay for the service in our own country 2, now these patients are having a difficult time even finding a dr to touch them after having problems from a foreign surgery!

Then contrast those experiences with those with huge successes from local surgeons as well as the other Germany locations. Then point out the hypocrasy it is that companies like BCBS could deny most of their insureds coverage but be forced to pay for a fed employee with BCBS. That is arbitrary and bad faith in my mind and should be an issue raised.

Plus the crazy issue how fusion is a "gold standard" yet it's never undergone rigorous clinical trials that ADR has, plus the stats on non fusion and secondary surgeries for fusion is pretty dam high.

As stated by Medicare in it's decision memo regarding ADR policy:

"Millions of Americans suffer from pain-related problems (Salovey, Seiber et al. 1992). Low back pain is a common condition, with sixty to eighty percent of U.S. adults afflicted at some time during their life (U.S. Preventive Services Task Force 1996).
***
In general, the social and economic impact of chronic pain is enormous (Salovey, Seiber et al. 1992).

***

Fundamental problems plague the study of spinal fusion, including the lack of definitive methods to confirm a solid fusion, a weak association between solid fusion and pain relief, and the placebo effect of surgery for pain relief.” For patients, improvement in short term pain and function from fusion is unacceptably variable, and long term results remain controversial. In spite of the many difficulties and ambiguities, the use of spinal fusion surgery in the United States is rapidly increasing (Deyo, Nachemson 2004). "


All of our issues are important to the Oprah discussion opened up by Michael Moore's new documentary. Mr. Moore's issue is that it's a profit driven industry and that's why insurers are constantly denying coverage claiming things are "investigational and experimental" in spite of what our treaters are saying are absolutely necessary. He points out that we would never consider it reasonable for the fire dept to turn on profit on saving lives...why should our health care turn on huge profits to CEO's? There's no insurance company looking out for our best interest medically protecting us....it's all political and economics...and that is what part of this Oprah discussion is about.

PLEASE DON'T BE DISCOURAGE BY PREVIOUS ATTEMPTS TO GET ADR IN THE SPOTLIGHT. MICHAEL MOORE MAY HAVE JUST DONE US A HUGE FAVOR BY OPENING THE DOOR TO A DISCUSSION ON OPRAH BECASUE THIS DOCUMENTARY WILL LIKELY BE A HOT TOPIC IN THE UPCOMING ELECTIONS.

The short term cost of the disc is one hinderance in getting coverage over fusion. I could have been approved a 2 level fusion but not an ADR? How is that not a financially motivated denial!! The only difference between the two surgies is a vascular surgeon and the cost of the discs. If a treater recommends this surgery based on age, life style, career, kind of injury, etc...shouldn't the insurance company be forced to cover the procedure. That's the point.

When Mr. Moore was on Oprah, she specifically asked people to send comments after seeing his documentary (which is supposed to come out later this month). She had one of her "ah ha" moments about socializing medicine and want's to hear others comments and also experiences with the heath care system.

as a matter of fact, I saw the interview on Youtube. Only after you posted this thread. thanks for the heads up. It all looked liked 30 second sound bites. Of course they are correct in their assessment, but the interview seemed setup for the attention deficit disordered.

Sensationalism is what's she's looking for that's why we don't really stand a chance, unless of course, your insurance denied a spinal fusion or they refused to pay the hospital bill only after approving the surgery (which is my case). I think you do make a good point about federal workers being covered while the rest of the providers deny it.

I actually think we might get some notice if we send it to Oprah and CC: Barack Obama and Michael Moore.

I also edited my previous post...what about the stenum folks. That might be enough of a shock factor to get the rest of our discussion reviewed.

The part I saw on TV had to do with a women who was denied a test to determine whether kemotherapy would be successful (denied because the test itself was considered investigational and experimental)

Another women was denied treatement for a brain tumor. She was out of the country and dx with a brain tumor and her US insurer denied she had a brain tumor.

There were 5 women in focus...a variety of Blue Cross people and a Cigna. A chunk of the show was interrupted due to a local plane crash into Lake Michigan, so I didn't see the whole segment.

lbp
didnt you know that the fda is a useless piece of federal government. NOT
i smell a class action lawsuit coming.
chuck

I think you might have a very good point there about forcing patients to seek medical tourism. The worst outcomes (paralysis, death, etc..) would really spark conversation.

why don't you draw up a letter concerning those points and we can all add our names and addresses to it. then you could email it in to that show?



Part 1 of the interview
http://www.youtube.com/watch?v=-U_RIK7OyuY

Part 2
http://www.youtube.com/watch?v=Icor2ILQtLw

Thanks for the interesting discussion and ideas. I thought about sharing some of the interesting op-ed pieces I read on Michael Moore, but I couldn’t find the time to carefully articulate my views about this latest movie, and how our community might use it as a springboard for furthering our cause. That is to say, promoting awareness of the absurd insurance issues as well as medical tourism issues (there are many).

I’ll think carefully about what you’ve thoughtfully shared here, and send in my comments via the Oprah web site. If anyone here has contacts/phone #s for the producers, pls email or PM them to me so I can follow-up on my feedback. http://adrsupport.org/groupee_common...icon_smile.gif

Harrison,
I was unfortunate enough to have been hurt at work. I had, therefore, to deal with Worker's Compensation Insurance. I have a tape that they took of me that has been cut and spliced. I have the bill for an entire wrecked engine for the day I tried to bring it in front of the judge so they could get punished for falsifying legal documents.
I also had long term disability through work. Thanks to ERISA laws I havn't seen a cent in years.
We spineys should work with Michael Moore. No one besides the mentally ill gets treated worse by the insurance companies.
Marilyn
Been through the insurance mill big time
three level ADR Stenum July '07

Hi Harrison,
I hope this gets to you. Not feeling so well.
I regret our conversation, but it may be useful. I would like to take a three pronged approach and be solution oriented. Especially if we have Michael Moore and Oprah listening.


1) Insurance companies know from the get go that they are trying to get rid of us. We cost too much. I can prove that if you read a book by Ray Bouhrris.It is called "Insult to Injury" Read it. Spineys don't get a fair shake because the problem is difficult, lengthy and often unresolveable.Insurance companies hate us. They deny healthcare as well as disability pay. They thought up ways to get rid of us looooooooong ago! We are too sick to fight back (until now)!
2) Probably related, drug regimens like "Lyrica" are delegated to;egally protected drugs that make pharmeceutacals a load of money. They are still under protection from the laws that keep other pharmeceutacal companies from stealing their inventions.No generics yet. Why not profit from this enigma? They often charge a fortune for this stuff. Or re-delegate the use, such as was seen for antidepressants for PMS? Any way to gouge us/insurance co's, /anyone else!
3)We often can be helped. Somehow it got lumped in to the "just say no" to addictive drugs, and we are criminals thinking...
We are sick, not criminals, and often what will help one person will make another useless. The Neurontins and the Lyricas are quite toxic, if you care to look it up. The simple opioids are well known to work well, give the patient a sense of well being, and be less toxic. Hey, if the Neurontins work, great! What if they make you choke (like me)and make it hard to think? The docs don't want to give you the opoids that will work. The DEA will actually put them in jail if they do. They're understandably scared. This is very real. After I almost choked on a piece of bread from the "Lyrica",(and everything else going down my throat, it's a side effect) I'm scared.I also feel like hell when I take the Lyrica type stuff. We need to push for safe drugs. Even if it's an opiate. We have the technology!

and........by the way, why do we accept the fact that if you got hurt at work that you won't get good medical care? That's true, but wrong! We are treated like criminals. I worked full time since I was nineteen and put myself through college and then some. We are injured workers, not the same as criminals. I was followed,filmed, recorded, harrassed, tapes altered, car ruined, reputation and self esteeem ruined, what else?
Stenum. Oye Vey!
Read "Insult to Injury" by Ray Bouhrris. All the documentation you need on insurance companies is RIGHT THERE!!! I beleive this and want to talk to Michael Moore! We all deserve timely, state of the art medical care!

Sorry you got in the way, bad day!
Much love to all spineys,
Marilyn

For people that wish to be involved, I would like to fax/email the producers at the Oprah Winfrey show. We MUST get their attention; so here’s how you can help:

- I’ll consolidate your concerns/complaints about health care (un)coverage for ADR (and other) procedures. Please spell out your concerns succinctly; I recommend 3-5 paragraphs, which is app. 500 words or less. Please use a spell & grammar check too.
- Time is of the essence, so send me your thoughts ASAP, no later than June 14th, this Thursday. Please email me this (prefer in MS Word) to info (at) adrsupport.org
- Whether I receive five or 500 responses from you, all will be included as long as your writing is coherent.
- After editing, I’ll post the final document that I’ll send Oprah/Moore in the Big Bucket.

Folks, I could argue that we spine folks are the largest, yet most unrepresented population of patients in the United States – as LBP points out in this topic! And things are only getting worse – see D. Coley’s post from today! http://adrsupport.org/groupee_common...s/icon_mad.gif

Come on everyone – spouses too – let’s pull out ALL the stops on this one! This may be our chance to work together and make some changes for all of us! http://adrsupport.org/groupee_common...icon_smile.gif

Folks, I submitted my comments to Oprah, and communicated that I'll be sending YOUR stories in within 5 days. So send me your thoughts...see above post!
___________________________________________

Thank you for your e-mail! Your message is important to us. Unfortunately, due to the volume of e-mail messages we receive every day, we cannot guarantee that you'll receive a personal response. Feel free to check out our Frequently Asked Questions for additional help.
http://www.oprah.com/tows/program/tows_prog_main.jhtml

Thanks again for writing to us!

Sincerely,
The Oprah.com Staff
www.oprah.com

LBP,
I got your message and I don't know how to respond back to it except here. Please tell me now. Thanks

Just read harrison's post above about what to do! Thanks

Here is what I have sent Harrison hope this can help all of us somehow!

My Back Story
Abbe

For me my back problems started when I had a water skiing accident in 1986. The tip of my ski caught the water and before I knew it I was *** over teakettle. I did not release the ski rope from my hands and knew right away that something had gone pop in my back. I was very athletic and figured I would heal in a week or two with rest. That was far from the case. I finally went to an orthopedic doctor and had X-rays taken and there were abnormalities. At that time MRI’s were a new technology and were not being covered by insurance companies. They were considered “experimental and investigational”. I would have to shell out the money to have one of these studies done. But the claim was that they could see the soft tissue and be able to determine my ailment more accurately than any other technology at the time. So, I opted to have the test done. Sure enough the MRI showed a ruptured disc at L4 L5. I was young and scared of having back surgery. At least two doctors wanted to do spinal fusion, I was only 26 years old and knew I did not want my back fused. I put off surgery for six years until I could wait no longer and was on the floor in excruciating pain and tired of living on narcotic painkillers. I found a neurosurgeon who said he would try removing part of the disk orthoscopicly to see if that would make the disc bulge retreat. He told me up front that this was not a promising surgery but it was the least invasive. I gave it a go yet I did not have the relief I had hoped for. My second option was to have a hemilaminectomy along with more of the disc being removed and no fusion. He said this would leave my options open later down the line. I had a great success with this surgery and was happy not to have had the fusion surgery that the other two doctors had recommended.

Almost twenty years after those first surgeries I have also been diagnosed with the vertebra above and below with degenerative disc disease and ruptures and tears in the discs along with the original disc that I had problems with being all but gone and now I am bone on bone there. In 2004 I was considered a good candidate for the Prodisc trials but I would still have to pay for the artificial discs and they would run $10,000 each. I have had my ups and downs and have even went through steroid type of injections into my spine to alleviate the swelling and discomfort due to enflamed areas pressing on my spinal canal. I have also been put on a medication called neurontin, which helps the nerve pain but does not make it go away. In addition I also take an anti spasm medication to keep my back from going into spasms. Blue Cross of California has denied me three times this year for artificial disc replacement stating that it is “Investigational”. They dropped the term “Experimental” after the second denial when I wrote to them and I included the FDA approval of Prodisc which was approved last year. Blue Cross of California said they would approve a three level fusion surgery which is a major surgery and would take a year or so to heal from not to mention the loss of any lower back flexibility.

I have done quite a bit of research on fusion and disc replacement and have read many research papers and articles. I now have nerve damage affecting my legs and the last three doctors I have been to have all suggested I have disc replacement over fusion yet I am at the mercy of the insurance company.
Although I am not a doctor I am in charge of my body and not the insurance companies. If I were a person of unlimited means there would not be a problem with getting this surgery done. But since I am a middle class American I cannot get this procedure done without jeopardizing the financial well being of my family. If I were a federal employee Blue Cross would have to cover this procedure since it is FDA approved.

Thanks all. I now have 3 stories -- but looking for many more.

Please note:

- I’ll consolidate your concerns/complaints about health care (un)coverage for ADR (and other) procedures. Please spell out your concerns succinctly; I recommend 3-5 paragraphs, which is app. 500 words or less.

- Time is of the essence, so send me your thoughts ASAP, no later than June 14th, this Thursday. Please email me this (prefer in MS Word) to info (at) adrsupport.org

-----------------------------------------

Thanks Nanci, Amy, Abbe for your stories...

We are all targets for insurance/disability monkey business as Spineys. Now's the time to come out of the closet. Spine injuries/treatments are expensive and don't work well if at all. We are often too sick to fight back to get the treatments and compensations we deserve/need. Often, we get injured at work. Workman's compensation is a realnightmare among nightmares. Working Americans are denied WC care, and cannot use other companies'services since it is a work comp. claim. I hope it is finally time for justice.
Marilyn

Okay people....

even if you don't agree with Moore's documentaries in the past...we haven't seen his new one yet. Even Oprah says it's much less political.

Regardless, we all have stories to tell, why you went to Germany, you're denials and fights to get US ins coverage etc... not to mention good and bad stories of medical tourism etc.

No matter what your politics are, can't we all agree that the US Insurance Industry Dictatorship rule of our health is not a good thing???!!!!

Attached is a paper my Fiancée' wrote in grad school this spring at Northwestern about ERISA and ADR. It's very interesting to learn how insurance companies are protected under a law that never intended to cover health insurance. See the quote below and attached paper. BTW he got an "A"

"According to ERISA Disability Lawyer Michael A. McKuin, “the insurance industry has, in a very ingenious way, carved out the single greatest immunity from civil liability ever devised… This absolutely removes any incentive that an insurance company might otherwise have to treat the claimant fairly.” 16"

Interesting read Texas T
I clicked on his sources for more info. I found
http://www.pubmedcentral.nih.gov/art...?artid=1449155 this article to be very helpful in learning about the impact of ERISA over time, and the progress and regression of our rights to sue our health ins companies by various Supreme Court decisions over time.

this is a real political issue for the upcoming election. Oprah can be a forum to get a lot of attention perhaps even with Barak Obama.

Hey Harrison,
I would like to respond to the Micheal Moore issue and share my insurance nightmare, but I'm not sure how to email it to you. Please advise, and I will try to get back to a computer to complete it before Thursday.
Thanks,
Cathy

I sent mine to info@adrsupport.org and he got it fine. It's burried in one of his prior posts here. He also says he prefers it in MS Word.

I didn't realize until just now that if you submit through Oprah's website directly, it's limited to 2000 characters!

Hello ALL,

I hear what your all saying and I agree with most of it but if you really want to be taken seriously the last thing I BELIEVE the ADR community should do is assoicate ourselves with Micheal Moore. The guy is an absolute idiot and an extremist that has never done anything for anyone but himself. Everything he says or documents is less than half the truth.

Everyone loves Oprah but she has become nothing more than a marketing machine interested only in her own self interests. At one time she really tried to help people but I do not see that to much in her programs anymore. Her show is nothing more than an infomercial of which I am sure she gets a cut of every product/person she promotes. (i.e. Dr. Phil)

If we want to get the attention of the health insurance industry lets all get together and file a $100 million dollar (or whatever the number may be ?? ) class action lawsuit against the insurance companies that are the cause of the problem. If a good firm thinks we have a case they will take it on a contingency basis ( no fee to us unless we win).

Unfortunately, in a few years, but not now, I believe that ADR will be the standard for healing back problems. I am four months out and have never, ever felt better in my life. When the time comes all of us can take a little credit for being brave enough to have our "experimental" ADR's that will eventually give the insurance industry the facts they need to deem the procedure "acceptable for coverage".

I'm sure if Oprah could help us she would want a percentage of all the ADR surgeries to follow. She is no different, if not worse, than the people you want to change. Everything is about money. If she can make a buck, sure, she'll help.

Don't mean to offend anyone but I'd rather have a law firm represent me/us than Micheal Moore/Oprah.

David J.

wow, I'm a little offended and it sure is easy to say all this when you're on the other side I guess. This is too important of an issue for us to fight each other over our politics.

I happen to like his prior docs and yes I'm a liberal democrat and so are many litigators... but I understand not everyone agress with his politics. But any press is good press...I don't care where it comes from if it puts the heat on the Insurance Industry.

Please don't judge this Moore project until you see it. The best thing about Moore is that he opens up controversial diagalogue. Nothing wrong with that.

Oprah does TONS of things to help people. Do you actually watch her shows? And this seems to be the year of medical issues. Something I welcome! Especially with her support of Barak as a presidential candidate.

I am pretty sure if there was a class action to be made...it would be a whole lot easier with national attention from Oprah because all the news stations would follow.

If an attorney takes this case...it will not be out of the goodness of his/her heart and bankroll..he/she will expect a huge fee, and even on contigency you still have to pay for costs to fight the good fight, up front...experts are VERY expensive...depositions are expensive, investigators are expensive...this stuff is not on contingency. Any attorney taking a case like this will be seeking a lot of media attn...and would welcome attention from the Oprah show and Moore. Plus what are the real damages for an attorney to make money on a case unless the laws change. Given the status of the Supreme Court and recent rulings re ERISA it's an uphill battle and we need all the ammunition we can get.

Putting the heat on an election year could be perfect timing.

Besides, how on earth would Oprah "take a cut" of ADR surgery? That's just insane.

davidj8121 said it best - "If we want to get the attention of the health insurance industry lets all get together and file a $100 million dollar (or whatever the number may be ?? ) class action lawsuit against the insurance companies that are the cause of the problem. If a good firm thinks we have a case they will take it on a contingency basis ( no fee to us unless we win)."

Unfortunately, a lawsuit would just get thrown out. The reason this would happen is because of ERISA. To quote my paper that Texas-T posted above, here's an explanation of how ERISA does not allow individuals to file lawsuits against insurance agencies:

"Recent Supreme Court rulings have further interpreted ERISA to cover employer based health plans, for which the law was not intended to do. As a result of this interpretation, policy holders of employer based health plans can only sue their health plan for coverage in Federal court.

"ERISA's regulation of managed care organizations stems from its preemption clause (29 U.S.C., section 1144(a)) which states that "[ERISA] shall supersede any and all State laws insofar as they relate to any employee benefit plan." This clause has essentially "prevented states from regulating the activities of employee based health plans," which has provided health insurance agencies with more power to determine which procedures they cover while simultaneously holding them less accountable for their decisions.

"Two Supreme Court cases have further reduced the liability for managed care organizations. On June 21, 2004, the Supreme Court "effectively immunized managed-care organizations (MCOs) from liability for negligent decisions about the care of patients in private employer-sponsored health plans" in its ruling in the combined cases of Aetna Health v. Davila and CIGNA Healthcare of Texas Inc. v. Calad. Davila and Calad sued their managed care organizations under the Texas Health Care Liability Act, which is a state statute that holds managed care organizations liable for negligence "when they fail to exercise ordinary care in making decisions about whether treatment is medically necessary for a patient." Because CIGNA and Aetna are "ERISA plans", CIGNA and Aetna argued that ERISA preempted the Texas statute, and that the case must be resolved in Federal court under ERISA to recover insurance payments due for the two plaintiffs' procedures.

"The Supreme Court gave a unanimous decision that ERISA "provides the exclusive remedy for patients in ERISA plans when an MCO denies benefits – even if the denial is based on a decision that the disputed care is not medically necessary for the particular patient." Many fear that because of this decision, health insurance agencies will "have little incentive to make medically appropriate decisions if the only penalty for wrongful conduct is no more than what they should have paid for in the first place."

"According to Dr. Mike Magee, ERISA "has become the central pillar of defining the roles and responsibilities of the health insurance industry's managed care organizations. More specifically, it's used to define the extent of their liability for both health benefits and the fallout of decisions to extend, or not to extend, coverage for a wide array of health services."

(Resources:
Cornell Law School. U.S. Code Collection http://www4.law.cornell.edu/uscode/html/uscode29/usc_se...0001144----000-.html

Cornell Law School. U.S. Code Collection http://www4.law.cornell.edu/uscode/html/uscode29/usc_se...01003----000-.html#a

National Conference of State Legislatures. "Maryland's Fair Share Health Care Fund Act Overturned in ERISA Challenge" (1/29/2007) http://www.ncsl.org/programs/health/fairsharenews.htm

Hellinger, Fred J, Ph.D. and Gary J Young, Ph.D., "Health Plan Liability and ERISA: The Expanding Scope of State Legislation." February, 2005. American Journal of Public Health. http://www.pubmedcentral.nih.gov/art...?artid=1449155

Mariner, Wendy K. "The Supreme Court's Limitation of Managed-Care Liability." 2004. New England Journal of Medicine

Magee, Mike. "The Laws that Protect Managed Care" Health Politics.Org. http://www.healthpolitics.org/progra...t.asp?p=erisa)

It's quite unfortunate that this has yet to be amended. While trying to get the attention of the public through Oprah and Michael Moore may or may not be the best idea, my advice is to write your congressmen and women, and your state's senators. Explain to them the frustrations and pain you all have had to endure. Mention ERISA. Cite Texas-T's World News Tonight video to show that this is debilitating. Call your local news. There have been stories done in Florida, California, D.C., and I think Boston on local news stations about patients with back pain who have been denied coverage for ADR.

There's a lot of work to be done, but there are also many quality resources to get in touch with to help make a difference. Let's not limit ourselves to Michael Moore and Oprah.

FYI - If you have health insurance through your employer then you governed by ERISA. Any lawsuits you file against the insurance company must be filed in Federal Court where the most you could ever expect to receive is the cost of surgery - no pain and suffering. This is why the insurance companies have no incentive to cover ADR. Even if you sue after years of appealing, the most they will ever have to pay is what they should have paid in the beginning; the cost of surgery. It’s a win-win for them all around.

I think we all agree that there is problem when insurance companies can routinely deny treatments that are FDA approved and recommended by a reputable doctor. We can argue till we’re blue in the face over the solution, Jeff and I do this often as we support different political parties. The one thing that unites us though is that we want people to know that this is happening, to raise awareness so that it can be addressed. Regardless if it’s Oprah, GMA, Michael Moore, or politicians that take up the issue; if we get people talking hopefully some good will be found. Perhaps our focus should be awareness of the problem at this juncture. Once solutions are suggested by individuals, we can evaluate the pros and cons’s and better choose who to align ourselves with.

I had my ADR a year ago and I still cry when I think about how awful things were before the surgery, the hopelessness and the uncertainty caused by the insurance company. I was able to obtain coverage fairly quickly and sometimes this makes me feel guilty because there are so many people on this board who need the surgery just as much, if not more than I did, and they are forced to endure a truly screwed up process.

ADR will never become the standard of care in the US unless insurance companies start paying. Surgeons will not get the experience to perform the surgery and little advancement in the procedure will be made because people cannot afford the surgery or endure a fight with the insurance company. If ADR was covered by more insurance carriers who knows what advancements could be made; a surgeon might find newer and better ways to perform the surgery, they may even find ways to help individuals with more complicated cases or even failed ADR. The payment issue isn’t just about our individual cases; it’s about so much more.

I am sure that both sides agree that we need insurance reform NOW!! If you want to understand the seedy underpinnings of insurance businesses (ALL OF THEM), please read "Insult to Injury" by Ray Bouhrris. It documents just how they routinely get out of their contracts with us, the consumer. A MUST READ !!!
Marilyn
bottom three ADR Stenum '07
Still struggling with pain

Count me in. The problem with class actions is that the attorneys get all the money. I'd love them to pay my Stenum bill!
Marilyn
Three level ADR
Stenum July'07

Erisa needs to go!If we are getting political about things, I'll go for a march on Washington (a crawl?) to bring attention to the fact that if you become permanently disabled and have purchased insurance through your employer, you are screwed. ERISA was meant to help the employee originally, but it (the only federal legislation on the books) was used for big corporations as a loophole to get out of paying . We Spineys are a target for a lot of things, because our problems are so expensive and problematic. I still think a crawl on Washington would be a good thing. The "million man that couldn't walk" march. We certainly deserve better. Even those of us who were well insured like me. All I have is social security, even though worker's compensation insurance was in place, and my long term disability was paid for twenty years! I have tapes given to me by my attorney that were spliced, altered, violating some law, reams and reams of tapes. Days on end, I would look out the window and the PI's cars were out there, waiting for me. Endlessly waiting to film and film, and that they did.
Then they send you to the creepy doctors who write ridiculous reports. Endless creepy doctors.
Wouldn't it have been cheaper to actually just pay what was owed?I really think it would.

Anybody else go through this BS?
Broke and Disabled Spiney
3 Level ADR Stenum July '07
Still have pain.

</div></BLOCKQUOTE>


The wonderful thing about Democracies are that they are always being re-worked. Our power is only in numbers. If we choose to work toward a common goal, which would be insurance company reform. I should be getting a few payments here, but as things are, I'll never see them.
And do I need money!!! OY!

If Oprah is interested, she is pure gold. She is a real power broker in this country, and whether you like Michael Moore or not, he is too. Our individual complaints could become one voice, asking for justice, insurance reform, and the American Way!(Maybe it's time to get a cape on, haha) I call for a walk on Washington (crawl, wheel, lay down, whatever) It's our time!!I just spent eight years in bed being tortured by the insurance companies, then went to Stenum and paid out of pocket. I have to deal with Worker's Compensation as my insurer and they play all kind of tricks to get out of paying for health care of any kind. I legally cannot use my other insurances, so I go without health care, pay for it myself, or bargain with the doctors. Let's get off our sore behinds and do something about this!!
Marilyn
three level ADR Stenum July'07
Still struggling

You have shown us no proof that he's an idiot and no proof that he tells half truths. If anything I think you've revealed something about yourself. It's too bad you want to sit off on the sidelines for this one.

This topic is getting a bit inflammatory and in danger of becoming divisive. Just to overshare, this is why I hinted earlier about not broaching the Moore issue earlier -- his work is provocative and usually elicits a very visceral/digital/opinionated response!

That being said, I like the quote it’s “better to light a candle than curse the darkness.” We as a community have started an informal, but very personal appeal that I would like to share with “the media.” Our message is not in danger of being quelled by the Oprah gatekeepers! I will work hard to get this story -- our story -- to other media outlets, especially our congressman in D.C. And I can now say that I was in their offices, speaking with them and their legislative assistants!

It may not change the woefully dysfunctional insurance issue (with ALL new procedures, not just ADR), but we do have the chance to educate influencers in the media, government and the rest of society. That is, we will tell them our grueling stories of suffering while under the duress of unmanaged care.

Now that I’ve come this far, I believe that anyone like Moore who can move people to act in a constructive path towards positive change is a very welcome force in our complex society.

Thanks to all contributed their stories, I have about nine so far. Let’s get back to work. http://adrsupport.org/groupee_common.../icon_wink.gif

I cant believe we only have 9 stories submitted??? I sent private messages to over 100 people to ask them to read this post????

I do not agree with your classification of Michael Moore as an idiot. Neither Oprah. We should keep in mind that we have an objective, and they are advocates. No matter what you think of them, they can help us get our message out there. We want medical care paid for, we want disability payments owed to us, we want justice when it comes to trials (including workers' compensation) . What do you guys and gals think of converging on Washington DC? We want action, let's go for it. I am going to challenge Oprah to have her cameras follow me through a "normal" day. I just got my physical therapy denied by Work Comp. I cant walk so I went to Costco and rode around in one of those little carts. A man had to help me with a giant cake that I got for Fathers' Day. Kind people are everywhere (everywhere but working for insurance companies). Spend a day with me and see how great it is to get injured at work. I was called a "Malingerer" despite diagnostics that proved otherwise. We who lose our lives (and lifestyles) to dangerous workplaces deserve respect( and money owed by insurance companies, health care, etc.) If we want our message out there, lets get our sorry behinds out there and tell people what its' like to have a serious health problem in this country. It sucks!!!
marilyn
3 level ADR Stenum July'07
Still hurting
You have shown us no proof that he's an idiot and no proof that he tells half truths. If anything I think you've revealed something about yourself. It's too bad you want to sit off on the sidelines for this one. </div></BLOCKQUOTE>

Marilyn, good points all around! LBP, thanks for all your hard work…wow…100 private messages is impressive. For what it’s worth, people in the marketing/PR world would be very happy with a 9% return…not to mention the financial world.

It’s not over yet. My original request was asking folks to submit letters to me until tomorrow, but I’ve figured out a few ways to make this easier for me, you and the media. More in the next 48 hours.

Thanks all for expressing your concern. IT MATTERS!

Count me in! I'm not sure exactly what we are looking for, but I'll be happy to share one of the success stories. Harrison, please IM your private email address and I'll be happy to share my story. Please let me know what you are looking for. I am crazy passionate about ADR and what's I've been through and what's it done for me. My friends are tired of hearing about it! Give me a platform and I'll share. I just want a day or so to collect my thoughts... Let me know how to help!

Craig