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TIF - ERO has also denied the appeal

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Posted 5/20/2012 2:27 AM (GMT 0)
The external reviewer has also denied my appeal to provide coverage for TIF. They are essentially saying that:
1) the added risks associated with Nissen such as advanced age, multiple medical problems, obesity, prior surgery, esophageal dysmotilty do not apply to me - so they think that partial fundoplication provides the greatest chance of long term relief of symptoms with minimal long term side effects of treatment.
2) 'good prospective', randomized studies comparing TIF to standard of care (Nissen) have not yet been done.

I guess my options now are:
#1: Go for TIF and pay for it out of pocket ($14K)
#2: Go for TIF and pay for it out of pocket and then pursue a legal recourse
#3: Get Nissen instead
#4: Pursue a legal course
#5: Don't do anything and monitor myself and wait for more time and see if the insurance starts to pay for TIF and then get it done then.
#6: Pursue Linx instead ($12K + travel)

I am not really sure if the insurance company is really looking out for me - and really thinks TIF is more risky (in terms of no-positive outcome) than Nissen - or are they trying to avoid having to pay more people who will be going for TIF since it is a simpler procedure?

I am confused at this time. Need to think this through.
Posted 5/20/2012 5:59 AM (GMT 0)
Have you asked your insurance company about covering the Linx procedure? Or do you think they'll also deny that?
Posted 5/20/2012 12:19 PM (GMT 0)
PPI,

Not surprised you got rejected for the TIF. I'd say most people are currently being rejected for it because it is considered a new and experimental surgery. I went through a similar process. There is good news for you though. You can sign up for the TIF medical experiment where you will receive the surgery for free, but unfortunately will need to go through the bells and whistles to get it and it could take anywhere between 2-8 months.

How come you won't consider the Nissen? It has proven long term relief and has a better chance of success (95% to 85%) vs the TIF.

I'm going in for the Nissen tomorrow because I just couldn't go through the rigors of the experiment and force myself to wait a possible 8 months to get it.
Posted 5/20/2012 1:53 PM (GMT 0)
Speedy - it took me close to 3 months (and several hours of writing letters and collecting data to present) - to complete the appeals process for TIF. Unless it can be proven that these surgeries have better (short as well as long term) success rate than Nissen or that my medical condition makes it necessary for me to have these surgeries and not the Nissen (due to any other complications), I am convinced they are not going to pay for these.

Curb - Good luck with your Nissen and thanks for the information about free TIF. How can I find out more about it? Re: Nissen - the issue is I feel my GERD is not that severe but I can not take medications - so I feel I want to try a less aggressive surgery for my GERD - especially when I know that I can always get Nissen after an unsuccessful TIF.
Posted 5/20/2012 6:01 PM (GMT 0)
There are a couple websites out there. I'm not sure if I can post links here, but the surgery is sponsored/created by EndoGastric Solutions. They have a list of surgeons on their website that do the procedure, so if you speak to one of them I'm sure you will get more details.

The experiment seemed fine to be, it just didn't fit my timetable. I've been suffering for quite some time and I didn't want to wait a possible 8 months (worst case scenario) for the surgery. My surgeon told me in this experiment, you'd have to stay on PPIs for at least 2 months, and then would come in for a type of double blind study. Here, you would also be paired up with 2 other patients doing the same thing. 1 of the 3 of you would go under (not know what you would be going under for; either an EGD or the surgery itself). After you wake up, you'll obviously know which one you had. It's a pretty serious clincal trial, obviously to measure the success rate of the surgery going forward. Altogether though, the surgery is free and at worst you'll get it after 8 months. From what my surgeon said this was the best way to get it since most insurance companies still haven't picked this up an as option.

Post Edited (CurbYourEnthusiasm) : 5/20/2012 12:52:58 PM (GMT-6)

Posted 5/20/2012 6:42 PM (GMT 0)

I could find no references to "Advanced Gastric Solutions."  The EsophyX device that does the TIF is manufactured by EndoGastric Solutions.  Is this what you meant?

There was a multicenter study of the TIF, published in the World Journal of Surgery in 2010, but only included 86 patients.  I'm not sure if these patients benefited from free surgery, but I didn't read the article.  This is the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2490723/

It looks like there's another clinical trial, but it's unclear if it is still going on, and I didn't click through enough to see if there was a close-out date.  There are also limited centers participating, so that would make it inconvenient for someone in the NorthEast.  Here's the link: http://www.acidrefluxstudy.com/the_respect_clinical_study.htm

-Bruce

Posted 5/20/2012 6:50 PM (GMT 0)
Bruce, my apologies. Yes, that is the company. I must've been confused with something else.

The clinical trial is still going on, I can promise you that. I was in my surgeon's office 3 weeks ago and was discussing it with me. I ultimately chose to go with the Nissen because I was looking to get it done right away. I didn't feel like staying on PPIs for 2 more months (they haven't been working that well with me anyway). They gave me the website to sign up for it, but I can't find it now after googling for a little bit.

The trick is to find a list of surgeons who do the procedure since very few are qualified to handle it.

Either way it seems like a good route to go if you can wait a little bit to get the surgery because it is ultimately free. Again though, you have to go through the entire battery of testing, so for some people (like me) this would've been a repetitive process.

Post Edited (CurbYourEnthusiasm) : 5/20/2012 12:57:40 PM (GMT-6)

Posted 5/21/2012 6:10 PM (GMT 0)
Thanks. From what I've read so far, one has to be on the PPIs for 6 months or more to be able to qualify for this study and therefore I won't be able to qualify for this trial. Further, not being local to the cities where they have these centers is going be a major hassle. I will call and find out more about this though.

Leaving the cost issues aside .. since my GERD is not that severe - I am not sure if I should try to get the surgery now - or wait it out more. The longevity of the surgery starts to factor into my mind. I am in my early 40s now and it's been about a year with GERD. The more I wait it out now, the more time I will have with my wrap later. Do the Nissens being done these days last longer (>20 years) now? However, I need to then balance it out with my current quality of life and not leaving this untreated for too long and not risk other complications (barretts/cancer) down the road.

This was another reason I wanted to start the way of TIF. If TIF was successful, ride on it for as long as I can and then consider Nissen down the road and therefore extend the longevity of the wrap. There have been several discussions on this board regarding the longevity of the Nissen wrap and they say it can last for as long 20 years (or even more). May be those of us who know more about this can comment on this.
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