Update: On February 1st, 2019, I won my external appeal, and a couple weeks later, I got the money I paid for my ADR surgery from BCBS deposited into my account! It took me a year but in the end, my lumbar ADR surgery was deemed "medically necessary" after all.
I initially filed an international claim with the global BCBS department. My claim was denied on the grounds of "not being medically necessary". I appealed that decision again, but that was also denied for the implant not being FDA approved. After filing the external appeal, I finally was able to claim my victory!
Insurance Nightmare
Warning: This narrative is a tad lengthy but accurately reflects what happened to me while trying to get pre-authorization for ADR surgery in the US. (You can review the "ADR vs. Fusion" section to learn about the differences).
After making peace with the fact that I truly needed surgery, I started my research to find a suitable neurosurgeon. At the time, I was only starting out with my research of surgical options and had limited knowledge of ADR but deep in my gut I knew I didn't want a fusion. I made two appointments with surgeons in the Orlando area, and both recommended traditional fusion surgery (one recommended an anterior approach, the other one preferred a posterior approach).
During those consultations, I asked about ADR surgery for the lumbar spine, and the first surgeon I saw in Oviedo stated that ADR surgeries used to be done when they first came out in the early 2000s but that there were no FDA-approved devices on the market anymore. This surgeon also disclosed that his practice just purchased a 1-Million-dollar machine used in spinal fusions, so I am sure he needed to get his money's worth. The second surgeon with the Celebration Orthopedic group was very arrogant and gave me the feeling that my back issue was not really that important. He also bashed ADR, stating that this technology never worked and is only being used to make money by greedy surgeons. Since I already knew that both statements weren’t quite true, I shifted my search to find a surgeon that specializes in ADR to get an evaluation.
I came across a reputable doctor with experience in the field of ADR in Miami, Florida. He advertised using the FDA-approved activL prosthesis, so my fiance and I drove down to Miami for my initial evaluation during the second week of August in 2017. Needless to say, I was extremely nervous because I was still hoping for this to be a real alternative to fusion surgery.
After reviewing my most recent MRI, I was deemed the “perfect candidate”, even though my disc space has already collapsed significantly at that time. Dr. G. and his PA appeared very confident that the pre-approval for the surgery would go well because I had the “better insurance plan”. I also was left with the impression that ADR surgeries are being done routinely in their practice, and the PA pointed out that they had performed ADR surgery just the previous week. I was shown a picture on the PA’s phone of a very fit body-builder, who allegedly was a recent ADR patient and supposedly returned to competition after his recovery.
So, full of trust, excitement, and hope, we went back home to complete a couple more tests needed for the initial evaluation. and after those came back encouraging as well, my surgery was scheduled for October 04, 2017. I got all my ducks in row, coordinated my school and work schedules, and prepared for my (up to) three months of recovery. However, little did I know that the nightmare was just beginning.
About two weeks after I scheduled the surgery, I got a phone call from N., Dr. G’s surgical scheduler, who informed me that Blue Cross Blue Shield Federal Employee Program (BCBS) denied the pre-authorization. She stated that a peer-to-peer appeal between Dr. G. and the medical expert employed by BCBS will be the next step in an effort to get the denial overturned. Needless to say, I was completely shocked and had a lot of questions!
N. was very vague when answering my questions regarding the timeline and what to expect next. She actually lied to me (I suppose to get me off her back), stating that a peer-to-peer appeal was scheduled for Thursday, September 28th, 2017 but that BCBS cancelled the date without returning N’s calls to reschedule. One of the few reponses I received from M. (the PA) after emailing her with my questions was to call BCBS myself to get answers. So I supposed that that's what I would do. When I called BCBS customer service, I was informed that no such peer-to-peer appeal appointment was ever made and that my case is still due to be scheduled for an unknown date. Now I was getting very frustrated and really needed some answers!
Apparently, after the initial denial, Dr. G’s office realized that I wasn’t “easy picking” and pretty much abandoned me. Every time I called to speak to N. I was transferred to her voice mail, but when I called back immediately to request to speak to the PA instead, N. miraculously picked up the phone. Finally, on October 6th, 2017, I got an email from N., stating that (quote) “Dr. G. spoke with BC/BS on October 5th, 2017, and denial stands. We have to now do a written appeal for the procedure, which is going to take around 90 days to get a reply”. Just like that, without any more elaboration. I tried again to contact M. because I was now concerned that, due to the rapid progression of my DDD, I may no longer be a candidate by the time I get the appeal done. I also needed to know what my role was in the written appeals process, or if there was anything I could do to expedite things. I was scared and felt incredibly helpless. Needless to say, I never got another reply from M., nor did Dr. G. ever reach out to me to discuss further options.
Since I started to lose trust in Dr. G., who clearly didn’t care about me as his patient, I started to look for alternative options. During my research, I came across highly-skilled European surgeons, who offer cash-prices to Americans in need of ADR surgery. I considered the idea of having the ADR surgery done in Germany and to pay out-of-pocket. I actually was evaluated by two German ADR surgeons after snail-mailing them my case file: Dr. Bertagnoli in Berlin, and Dr. Desai in Colonge. So, Dr. Bertagnoli quoted me around 30,000 Euros, whereas Dr. Desai offered a cash-price of 14,000 Euros (his prices have increased since). To be honest, my biggest concern of having major surgery in Europe was the fear of potential complications and that I would have to return to Germany for follow-up care. I just wasn't sure anymore what I should do.
As my frustration and anxiety grew, depression started to settle in. I really, really didn't want to be forced to have a fusion, and I was getting so angry at BCBS for denying a procedure that has been FDA-approved for over 10 years in the US! Why are they doing this to their members, who pay more and more in premiums while benefits decline?
Abandoned by my surgeon in Miami, I decided to take matters in my own hands and called BCBS myself numerous times to inquire about the appeals process. This was a whole new experience that got me to realize that insurance companies truly do not care about their members or their quality of life. I was rudely brushed off and denied to talk to the Appeals Department directly. My jaw dropped to the floor when, at one point, I was told by a BCBS representative that “Mam, it was not BCBS who denied the procedure, it was the Medical Director in Washington – it was the federal government!” Wow, I didn't realize that I was that important... After asking to speak with a supervisor, a “senior representative” informed me that I don’t even have appeals rights and that my case is closed. At that time, I hadn’t heard from Dr. G’s office in about a month.
I needed help, and I was not going down without a fight! So, in late October 2017, I contacted the three government officials of Florida to ask for help: Governor Scott, Congressman Soto, and Senator Nelson. I went to their respective websites and submitted my plea through their online platforms. Well, I never got any response from Governor Scott but I received an email from Congressman Soto, thanking me for my concern regarding Puerto Rico after the Hurricane Maria and to ensure me that he is doing great things for the Puerto Rican people (?!). The only one,who offered to look into my issue was Senator Nelson, which gave me new hope in my efforts to overturn the denial after all. I filled out a Release of Information form and faxed everything to the Senator's office right away. After that I really did get a phone call from an “Escalation Department" representative of BCBS on November 3rd, 2017, stating that BCBS “made a mistake”. I was informed that I do have appeal rights and that the appropriate paperwork had been mailed out to me already. At that point I really thought that I was finally getting somewhere. However, a month later, I still had not received the promised paperwork...
In the meantime, during my research, I came across an attorney who was advertising a class-action law suit for patients who were forced into fusion surgery due to insurance denial. In my frustration, I contacted attorney Dave S. in order to inquire if I can be added to that law suit. As it turned out, Dave was very familiar with the insurance-denial issue regarding ADR and knew some of the key-players in the industry. He got the manufacturer of the activL (Aesculap) to agree to help me with the appeal. Through Dave, I also found out that Dr. G’s office still had not forwarded any of my paperwork or filed the promised appeal, even though it had been way over a month already. But to be honest, I wasn’t at all surprised. Dave then helped me get in touch with the Texas Back Institute (TBI), a practice that is competing for market share with European providers and also offers a cash price to patients seeking ADR surgery but after being denied the procedure by their insurance.
At that point, I had truly given up on Dr. G. for obvious reasons and wanted to get evaluated with Dr. Z. at TBI instead. I was given a contact email at TBI and got a prompt response. I sent all my medical records to TBI , and one week later I was accepted as a new patient of Dr. Zs'. His office submitted the pre-authorization through the Texas BCBS network. I was really hoping that it would make a difference in potential coverage. However, when I received the denial letter from BCBS of Texas, I was yet again disappointed and discouraged. I immediately called TBI and was told that they received the same letter already and that the (also unsuccessful) peer-to-peer appeal had already happened. But I was ensured that a written appeal was going to be filed with BCBS later that day. Even though I was very disappointed, I was also impressed by the swift response and organized manner in which TBI handled my case. What a contrast to Dr. G’s office and their lack of response or care. I was informed by TBI that the appeal process usually takes about 30 days but that there are no required timeframes as to when the insurance company must respond. J., Dr. Z’s surgical scheduler, told me that she would call BCBS once per week to inquire about my current status. The appeal was filed on Friday, November 8th, 2017, and as of Friday, December 1st, 2017, my case was still pending.
Now, remember how the Florida BCBS admitted that they made a mistake by denying me appeals rights in Florida? I got a letter in the mail from Senator Nelson, who forwarded me the written reply from BCBS regarding his inquiry into my case. It clearly stated that I DO have appeal rights and that the appropriate paperwork had been mailed out. It also stated that my case would be reviewed once my appeal was received. Apparently, this concluded the involvement of the Senator, which I found a tad disappointing. But guess what happened next? Two days after I got the concluding letter from Senator Nelson, I received an email from BCBS, stating that they decided that I do NOT have appeals rights after all and that my case was now closed! Apparently, that is why I never got the paperwork in the mail, huh? The bottom line is that BCBS lied to the Senator, telling him what he wanted to hear, just to turn around and deny me my legal appeals rights after all! I do have everything in writing, so I actually have proof of this audacity.
I contacted the Senator to update him on this development and pointed out that he was lied to and that I felt discriminated against by BCBS. However, Senator Nelson's office ended up forwarding me yet another letter from BCBS, confirming my lack of appeals rights but didn't offer any further help. I guess it didn't matter enough that BCBS communicated the complete opposite of what was stated (in writing) just a couple weeks before. Now I felt like being not just let down by my own health insurance but also by the Senator. At that point, all my hope was invested in the BCBS Texas system in which I (curiously enough) did have appeal-rights.
As I stated earlier, when I first contacted TBI, I was very impressed by their prompt communication and timely manner in which my case was handled. I was given the choice of either coming to Texas for a separate evaluation beforehand or to combine that appointment with the time of surgery. I was told that it wouldn’t make a difference and that many out-of-state patients choose to combine all appointments.
Another reason why I had such high hopes was my belief that TBI had an “appeals package” ready to go, containing current evidence, data, and strong arguments as to why ADR is superior and the better choice for their patients. Or so I thought. After five weeks of waiting, TBI informed me that the denial still held and that I could only try an external appeal on my own. I couldn’t believe that I was now denied ADR surgery not just in one but in two states! I thought I put up a good fight and prepared myself to have surgery with TBI and to pay out of pocket.
However, before I was going to move forward, I asked TBI to please put in an order for an updated MRI since my symptoms had worsened significantly, and I wanted to make sure that I was still a candidate. I was told that since I was not a TBI patient yet, they could not put in that order. Well, but I am enough of a patient to wire you $36,000 two weeks prior to surgery, right? I started to have a weird feeling and asked TBI to please send me the documents they used in my appeal, so that I can include them in my external appeal. That is when I realized that TBI only sent a generic cover letter, stating that ADR is indicated for me but not why. They did not include any relevant evidence or data at all to back up the arguments! A cover letter, along with my own medical records, that was my appeal! I was so very upset, and I lost all my trust in TBI, which prompted me to cancel the surgery.
I told my attorney Dave how frustrated I was, and he agreed that TBI’s appeals process was “disappointing”. He contacted Dr. Z. to let him know how I felt, and I was told that Dave and TBI are going to work on “revamping” their appeals package. Oh, Dr. Z. also voiced his frustration that I didn’t come in person for a face-to-face evaluation, which I was told wasn’t necessary by his staff just weeks prior. As if that would have made a difference!
PICKING A SURGEON, FINALLY
It was during that time that I went from total despair to a final decision: I joined an ADR support group on Facebook with over a thousand members who went through or were going through the same medical nightmare as I was. I came across recent patients of Dr. Desai in Germany and saw their great outcomes. Dr. Desai was the most affordable of all ADR surgeons because he isn’t in it for the money, which is reflected in the bill. Even though it had been a few months since I had been evaluated by Dr. Desai, he accepted my new MRI, and I went ahead to schedule surgery with him in Cologne, Germany. Money was more of an issue than I realized because I only could apply for an unsecured loan, and in addition I ended up using all my savings to try and cover all costs. Furthermore, I would be couple of months without pay because FMLA only protects your job for 12 weeks but after your vacation and sick time is used up, you are out of pay.
In hindsight, I now realize that I wouldn't have been able to secure a $40K loan to pay for surgery at TBI regardless... But I also realized that the LP-ESP ADR implant was much better that any of the prostheses available in the US at this time (activ-L and prodisc-L). So, maybe everything was meant to be, and the hell I went through over the last several months helped me to be at ease and comfortable with going overseas for this major surgery. Surgery was now scheduled for April 4th, 2018, the flights and hotel were booked, and I was going to wire the money to Dr. Desai’s hospital early the following week.