Insurance advice

Let me say a few things about insurance companies. First, the percentage is high that they will deny a procedure the first and even second time. (My ACI was denied three times before approval). Let's face it, they make money by ripping you off. I was offered a job, selling insurance once, I turned it down. After listening to a con artist trying to con me, I realized I could never play that game.
If denied, go through the appeals process and request a "peer to peer" with your physician and your insurance medical director. That's were they discuss your case, hopefully leading to an approval.

Second, don't give up!
Start a letter campaign to your insurance provider, not just one but multiple letters. Request another appeal by the carriers medical board. Seek multiple "second" opinions from qualified physicians. Call your carrier at least twice a week, if not everyday to check on the progress. Don't let them forget you.

Third, Use your state Representatives
They are there to represent their constitutes and are happy to help. Healthcare Reform is always a hot topic issue.

Finally,(Which should be the first thing you do). Be sure to read your insurance policy and see what items are covered and how much is covered. Be familiar with the pre-certification and appeals process. Save all EOB's and record all contact made with your insurance. Who you talked to, what department, what date and time, what assistance, if any, they provided. Don't be fooled into paying upfront costs, if someone from your insurance carrier requests that, direct them to your surgeons and Genzymes insurance liasions.
That didn't happen to me but I have heard about cases, were it did. Don't aggravate your Dr to death. I'm sure Dr Looney was about to go, well looney, getting my approval. Cigna would tell me to call him,that they needed him to call and they needed to talk to a health care professional. What the hell am I? Dr Looney would be waiting on them to call, then they didn't. All while I was crying(not literally) in his ear or rather email. So in my case Cigna was real good at giving me the run around But persistence paid off.
I am going to give a huge shout out to Dr Looney and his staff for fighting the insurance giant and getting me one step closer to healing.