Seeking ADR...my story

[jessmith07]

My Name is Jess, I'm 35 years old, 5'8" and relatively active...I have had no accidents to cause my back pain, but have been diagnosed with Degenerative Disc Disease. I've been dealing with back pain on and off for about 12 years, since shortly after the birth of my second child, and it's been chronic for the past 3-4 years. My disc at L5/S1 finally herniated sometime early 2008 (shown on an MRI, but it wasn't relayed to me), and I was scheduled for surgery to trim the disc away from the nerve. In the meantime, I found a new medication that effectively blocked the nerve pain (Topamax), so I cancelled the surgery and began walking 15-20 miles per week, going to the chiropractor 2-3 times per week, inverting on an inversion table 4-5 times per week, doing 100+ sit-up every morning, and doing lower-body strengthening exercises, all in the hopes of healing that disc. What wound up happening was, the disc got worse, the medication lost it's effectiveness, and the disc at L4/L5 began rapidly failing as well. By August 2008, I was in so much pain, all of the above came to a screeching halt. I could barely walk, couldn't sit for more than 30 minutes at a time, couldn't stand for more than 10 minutes at a time, and every time I moved while sleeping, I was jolted awake with excruciating pain, so needless to say, I wasn't sleeping very well. So I finally agreed to reschedule the surgery. In September 2008, I had a lamanectomy, which was a success, and after a few months and some physical therapy, the nerve pain finally went away. I knew that I would probably eventually need a disc replacement at some time in the future, but we were really hoping that this surgery would get me through for a few years until the surgeons in the US has more experience. But 6 months post-op, I was still in pain, and that's when my neurosurgeon finally told me that the discs themselves could be the source of my pain...which was news to me! That's when we really began discussing ADR (actually he wanted to do a fusion, which I adamantly refused), and I found out that in the US, I could only get a single level done, and that my surgeon, nor any other surgeon in the US, had much experience in the field of ADR. Well, I was in no mood to be a guinea pig, and I knew that our insurance would cover us outside the US, so I started doing research, and after MANY long hours, I finally found Dr. Bertagnoli in Germany, one of the best spine surgeons in the world. I sent him all of my tests and info, and he and his team accepted me as a patient.

Then, I went to my insurance company to make sure that they would cover the procedure, and I've been denied, first because they said it wasn't FDA approved, then once I showed them it was, they denied it again, there wasn't enough evidence to support the effectiveness of the prosthesis. So, I sent them a bunch of studies, and we're currently in round 3.

Anyway, that's my story. My husband is ready to pull the money out of our retirement account and just pay for the surgery, but I'm not willing to do that. My husband and I were planning a trip to Paris in June, him for business, me tagging along for pleasure, and we purchased my ticked several months ago with our "miles" from our Mileage Plus account, before all of this talk of needing an ADR procedure. So, my trip for pleasure has morphed into a trip of medical necessity; I'll fly into Paris, then take a "hop" into Munich. United has expressed a willingness to work with us on moving the dates, but time is of the essence in getting the insurance company to approve this, because as the dates for my flight get closer, I'm afraid that United's agreeability to work with us may wane. Right now, my doctor has tried me on a new medication, Arthrotec, which is helping, so I am getting some relief. Before that, I was just suffering, as I hate taking the narcotics, and would only take them when I was desperate for relief...a couple of glasses of red wine before bed helps too (we make our own, and it's Yummy!)

The only other thing I can think of is to hold out until open enrollment in December and switch to Blue Cross/Blue Shield (I've been told by other people that they'll cover ADR), and try this again next year. The only problem with that is, there will be more out-of-pocket expenses incurred, unless United will let us push my flight out that long, which I doubt, as we won't have enough "miles" to purchase another ticket, and unless we wait until June, when my husband will need to make his annual trip to Paris, we'll have to buy 2 tickets. But, it's much better than pulling the money out of the retirement account I suppose.

Some ideas that I'm currently pursuing to get the insurance company to pay is trying to find someone in the State Department or the Foreign Service who has our same insurance who has been successful in getting the insurance company to pay, and then going to the state insurance board, and getting quotes to from American doctors for a 2-level fusion in the hopes that the fusion procedure in America is more expensive than the ADR procedure in Europe, then I can appeal to their wallet. My husband also has some folks at the Office of Personnel Management looking into this because BC/BS pays for this procedure, so they are going to try to put some pressure on the insurance company to provide the same services to customers of the Foreign Service Benefit Plan.

We don't take "No" for an answer very well...

[dshobbies]

Hi Jess and welcome to the forum,

Perhaps different details but we've heard and experienced your story before. I'm sorry you're in pain and suffering. Long story short, Dr. B is the best and it will be a miracle in itself if you get any insurance company to pay for it, especially overseas. To the best of my knowledge, only a handful of people have been successful with their insurance companies in the U.S. and even less outside our borders. BC/BS is one of the worst, leading you into believing all the appeals will work. I think it was this insurance company that actually approved this surgery several years ago for a forum member and after the fact, claimed it was a mistake and wanted their money back! It became a legal problem and they weren't successful.

I don't think a 2 level is eligible for any trial and your previous surgery might eliminate you as well. In your shoes, I'd go ahead with the surgery with Dr. B in June and fight when you get home. You can then sight emergency reasons for the surgery and cost factors forced you out of this country. Doubt if it will work but always worth a try.

Even without reimbursement, your health and well being is worth the price. You can't do better than Dr. B, improving your chances of success and a pain free life.

I wish I had better news. You pay your premiums just in case you'll need costly medical care but the bottom line ( and executive's affluent lifestyles) is much more important to these companies than any individual's life.

OK, here's where my age is showing because I can't remember anything. Mark has a book in his library or you can buy it, outlining the hopefully, successful appeals process. Mark, help me out here

Good luck Jess, Dale

[jessmith07]

Thank you for your reply...as far as waiting to switch to BC/BS, it would be BC/BS Federal, and we have already found one person that works with my husband that had a single level ADR and BC/BS Fed paid for it without blinking an eye, and we've found another federal employee oversees with BC/BS Fed that had a 4-level ADR which was covered, so I know that they will cover it. And if they try to deny it, we have proof that they've covered it before, and HIPPA regulations prevent insurance companies from providing procedures for one person and excluding them for another in the same group. That's why I'm currently searching for someone with our insurance within the State Department and/or the Foreign Service. My husband is searching, too, and he has a pretty wide network of people to reach out to...it's just a matter of time, but we're kind of up against a clock.

Yes, we could pull the money out of our retirement account, but after the hit we took last year, the thought of pulling out another $50,000 infuriates me, and thankfully, I'm not so incapacitated that I have to go that route just yet. If I can just make it to December/January, then I should be okay...

[treefrog]

Yes, I have written off my insurance company. I don't feel like trying to fight them, with a very low likelihood of success. I have BC/BS of NC.

I also have to have 2-levels done (L4/5 and L5/6), and just got my surgery date with Dr. Bertagnoli, for May 26. My boyfriend and I are taking out a loan, to pay for the surgery. I know in this economy, it isn't the best time to try and get a loan. But if there is any way possible for you to financially swing it, it sounds like you should try.

I know I haven't really been living life, only existing. The pain has made it impossible for me to do much, that isn't absolutely necessary.

I hope that you are able to find a way to have surgery, and get rid of the pain, so you can start living again.

[runner]

Jess,

I don't know who told you blue cross/blue shield covers ADRs. I think they are mistaken, you have more of a chance with United, I think.
Are you under gov't insurance, because they do cover ADRs?
The book is Laurie Todd's "The Insurance Warrior".
To look up what BC considers "investigational, not medically necessary" go to google and put in Blue Cross and look for the TEC assessment and this will tell all the story.
I do have a friend who got United to cover his ADR and he is able to help if you want, but this is a tough road.
Might be different with husband in state work.
I don't know about it too much but federal employees under certain insurances are getting ADRs covered.
Blue Cross is notorious for not paying and they can come back up to three years later and demand payment back.

I didn't read the post you just put up. So excuse me if I missed something.


Good luck,

Runner

[runner]

Oh about HIPPA regulations.
I signed a paper/fax allowing Blue Cross to talk about my case, illness, to people, BC ignored that request and would tell people that they couldn't talk about my particular circumstances because of HIPPA regulations.
Be careful. They don't care if they covered someone else under the same plan, they invoke HIPPA and deny it.

[treefrog]

When you say that your husband knows of someone for whom BC/BS covered ADR surgery, was it cervical or lumbar? It seems to me that cervical surgeries are covered more easily than lumbar. What I mean is that insurance is unlikely to pay for multi-level lumbar ADR, let alone single level, but may be more inclined to cover multi-level cervical ADR. All in all though, it's very difficult to get them to pay for surgery done in the US, let alone pay for out of country surgery.

[jessmith07]

You aren't going to believe this, but after gearing up for war, my insurance company just approved my surgery today! What changed their mind was several items that I submitted and one that my husband found that was a long-term international study of ADR vs. fusion patients 5 years post op. I didn't know it at the time, but he actually had to purchase this report for about $40, and I'm going to get on as many websites as I can and get this info out to other people.

The following is the 2007 study that my husband paid for:

Survivorship Analysis of the Charité Artificial Disc: Review of 1,938 Patients from Eight Leading International Spine Centers

Bryan W. Cunningham MSc1, George Demuth MSc2, Paul C. McAfee MD3, Matthew Scott-Young MD4, Kj Yoon MD5, Scott Blumenthal MD6, Richard D. Guyer MD6, Fred Geisler MD7, John Regan MD8, Bart Conix MD9, Robert Hes MD9, Luiz Pimenta MD10, Roberto Diaz MD11, Ira L. Fedder MD12 and P. Justin Tortolani MD13

1St. Joseph Medical Center, Towson, MD, USA
2NC, USA
3St. Joseph Hospital, Towson, MD, USA
4Southport, Queensland, Australia
5seoul, South Korea
6Texas Back Institute, Plano, TX, USA
7Chicago, IL, USA
8Beverly Hills, CA, USA
9AZ middleheim hospital, Antwerpen, Belgium
10Sao Paolo, Brazil
11Sao Paulo, Brazil
12Spine and Scoliosis Center, Towson, MD, USA
13MD, USA

PURPOSE: The current investigation reviews data from 1,938 Charité Artificial Disc patients at eight international spine centers and examines the incidence of surgical revision at the index and adjacent levels.

STUDY DESIGN/SETTING: Patients from eight leading international spine centers were evaluated in this study.

PATIENT SAMPLE: A total of 1,938 patients served as the basis for this study.

OUTCOME MEASURES: Surgical revision, reoperation or implant at the index and adjacent levels.

METHODS: A total of 1,938 patients were included in this analysis. 305 patients from the United States were all single level reconstructions and included those randomized in the Charité Food and Drug Administration Investigational Device Exemption and continued access studies. 1,633 patients from Australia, Korea, Belgium and Brazil all received single or multilevel Charité Disc implantations (two to four levels). Survival of the prosthesis was defined as absence of implant revision and re-operation at the index level, including removal of the prosthesis. Any incidence of surgical re-intervention at the adjacent level(s) was also compared to ALIF controls (n=58). Patient populations were divided into five groups -United States, Australia, Korea, Belgium, and Brazil - and tabulated in terms of total patient number, reoperative rate, mean overall follow-up, and mean follow-up at revision. For each group, Kaplan-Meier estimates were provided for the time to revision. For individual sites and the overall plot of subjects, the 95% lower two-sided bound was used as obtained from Peto's adjusted standard error. Patients were further grouped into postoperative time intervals of less than or greater than 2 years follow-up. A likelihood ratio chi-square test was performed on each subset to determine whether an association existed between clinical failure and the number of months to follow-up.

RESULTS: Mean follow up was 23 months. The 5-year predicted survivorship for the Charité Artificial Disc (without revision, reoperation, or removal) ranged from 91.6% (Brazil) to 96.2% (Korea), with an average of 93.1%. This compares with 80.1% for ALIF with BAK cages. The lower confidence limit for Charité Artificial Disc survival was 87.7%, and the lower confidence limit for lumbar fusion was 51.5%, which is highly significant (p=0.0034). The predicted five-year survivorship for the adjacent levels in Charité cases averaged 95.6%, with 19/1938 cases requiring surgical reintervention. This compares with 89.0% survivorship for ALIF with BAK cages at the same time interval, which was significantly different (p=0.035). The likelihood ratio test suggests that a statistically significant association exists with clinical failure occurring early postoperatively if it occurs (p=0.020).

CONCLUSIONS: This investigation is the first international, long-term survivorship analysis conducted on the Charité Artificial Disc. The 5-year predicted survivorship for the Charité, based on patient return to the operating room, is 93.1%. Moreover, the frequency of surgical reintervention and revision at the index level following Charité Artificial Disc reconstruction is significantly greater within the first 2-year postoperative interval than at 2 to 8 years postoperatively.

FDA DEVICE/DRUG STATUS: Charité Artificial Disc: Approved for this indication.

[jessmith07]

[quote=runner;9039]Jess,

I don't know who told you blue cross/blue shield covers ADRs....I think they are mistaken...might be different with husband in state work....I don't know about it too much but federal employees under certain insurances are getting ADRs covered....


Hi Runner...We went to lunch with the lady that had the lumbar ADR, and she has BC/BS Fed. Her only out-of-pocket costs was her regular deductible, and this was almost 2 years ago. I think the difference is because I'm talking about BC/BS Federal, which is only available to federal employees and their families, as my husband works for the US Department of State.

[jessmith07]

Originally Posted by treefrog

Yes, I have written off my insurance company. I don't feel like trying to fight them, with a very low likelihood of success. I have BC/BS of NC.

I also have to have 2-levels done (L4/5 and L5/6), and just got my surgery date with Dr. Bertagnoli, for May 26. My boyfriend and I are taking out a loan, to pay for the surgery. I know in this economy, it isn't the best time to try and get a loan. But if there is any way possible for you to financially swing it, it sounds like you should try.

I know I haven't really been living life, only existing. The pain has made it impossible for me to do much, that isn't absolutely necessary.

I hope that you are able to find a way to have surgery, and get rid of the pain, so you can start living again.

Originally Posted by treefrog

When you say that your husband knows of someone for whom BC/BS covered ADR surgery, was it cervical or lumbar? It seems to me that cervical surgeries are covered more easily than lumbar. What I mean is that insurance is unlikely to pay for multi-level lumbar ADR, let alone single level, but may be more inclined to cover multi-level cervical ADR. All in all though, it's very difficult to get them to pay for surgery done in the US, let alone pay for out of country surgery.

Hers was lumbar, at L5/S1. I am going to try to upload all of the pdf files that I sent that helped me successfully appeal an insurance denial for an ADR procedure. I supposed I should put it under the insurance section...perhaps someone can direct me, since I'm new at this?

[treefrog]

What great news Jess. I am so glad that it is working out for you. Hopefully, one day, it won't be so difficult for all US citizens to have ADR surgeries covered by insurance.

[jessmith07]

Originally Posted by treefrog

What great news Jess. I am so glad that it is working out for you. Hopefully, one day, it won't be so difficult for all US citizens to have ADR surgeries covered by insurance.

Keep fighting, Kathy...you might be surprised...I sure was...I really expected them to say NO a third time.

[runner]

Jess,

When your husband comes home from work, give him a big hug because he is the reason you got approved.
For myself and others who don't have federal insurance, we cannot get approved (by several insurance companies). I spent months fighting Blue Cross (still fighting them for my surgery and their mistakes on my insurance that come up regularly) to no avail. I sent them a 200 page appeal. I sent them all the foreign studies i could dig up, so they turn around send me a letter saying they will only accept US studies. ProDisc approved in August 2006 (I was scheduled for surgery in 2007, then 2008). BC wanted five year US studies past approval before they said they would approve ADR.
The same with United Health Care and some other insurance companies. The insurance companies have a double-standard when it comes to federal employees.

I am glad you got it approved so you can do the important things before surgery and not worry about where you are going to get the money for the surgery.

The reason federal employees get ADR approved is that the federal insurance companies have to accept FDA (federal agency) approved treatments. Regular BC/BS, United, etc.. don't. Aetna, Cigna, and Kaiser are among the insurance companies that approve ADR.

Sorry, if I come on strong but I consider BC/anthem/wellpoint evil. You wouldn't believe what they have done to me and I will never forget it. I pray every single night that they are brought down like the big mortgage companies and banks, but that they don't get a bailout.

Now, Jess, you don't know me from anything, but I was personally speaking to corporate BC people in my appeal. I continue to fight the insurance companies. So realize I am not upset or mad at you, I am just upset at the money-grubbing insurance companies and the state of health care in the United States.

That's the end of the soapbox speech because I don't want my back hurting more than it already is or my blood pressure up.

Runner

[jessmith07]

Runner,

I'm so sorry to hear of your ordeal, yet it makes me feel even more blessed to have fought and won. I know that I'm among the fortunate few to get the insurance company to approve this. I just hope that the more people that fight and win and share their stories of how they did it, that hopefully, eventually, the industry will turn. I was fully prepared to go to the Office of Personnel Management in Washington, as well as the Department of Insurance in SC, whose job it is to help protect consumers against insurance companies. One thing I learned in my research is that HIPAA doesn't just protect your privacy...it's more than that form you sign at the doctor's office. HIPAA is a federal law protecting consumers from the corrupt insurance companies, and while it doesn't mandate that they MUST cover certain things, what it DOES mandate is that they can't discriminate treatment within a group. In other words, if you are in a group plan with 1,000 other people, and they cover ADR for someone else, but deny it for you, then they are in violation of federal law.

In Summary, HIPAA, Title IV looks something like this:

Group health plans may exclude coverage for a specific disease, limit or exclude benefits for certain types of treatments or drugs, or limit or exclude benefits based on a determination that the benefits are experimental or medically unnecessary - but only if the benefit restriction applies uniformly to all similarly situated individuals and is not directed at individual participants or beneficiaries based on a health factor they may have. (Plan amendments that apply to all individuals in a group of similarly situated individuals and that are effective no earlier than the first day of the next plan year after the amendment is adopted are not considered to be directed at individual participants and beneficiaries.)