I also have group health coverage under a BCBS policy. Under our policy there is a $1000 deductible for diagnostic testing. Not sure if you have such a policy but under a policy like we have lab work and diagnostic testing all fall under the deductible from what I have been told.

If your policy doesn't have such a deductible it's an interesting argument. By the way I am also a patient of Dr. Gorfine who has done 4 surgeries on me, assisting on 2 and lead on 2, all 4 between 1992 and 2000. He is a good surgeon and a good guy.

supposably pouch cancer is very rare, why do you get checked yearly??

Not sure how your plan reads, but for most current plans, the preventative care that is 100% covered is in regard to routine screening without a diagnosis, such as the periodic colonoscopy after age 55.

 

Scopes and biopsies for us is part of our follow up care and monitoring because of our diagnosis. Just like the monitoring labs my husband gets for his diabetes is maintenance, not prevention. Yep, it is a gyp. I can't even get a routine physical without a copay, because I have diseases that require monitoring. I tried disputing it and filed a grievance, to no avail. Apparently, preventative care has a very narrow denfinition in managed care!

 

Oh, and if you have chronic inflammation or a history of dysplasia or cancer, you need more frequent biopsies. Rare as it is, you want to catch dysplastic changes before they become cancer. 

 

Jan

Pouchormarx,

 

It's not pouch cancer they worry about so much as rectal cuff cancer.  Yearly scopes are indicated for anyone with  chronic inflammation and/or a finding of dysplasia in the colon before removal.  I qualify on both counts and have had annual scopes of my Pouch including biopsies of the rectal cuff, inside the pouch where I have inflammation, and the neoterminal ileum above the pouch where I also have inflammation from backwash stool/SIBO.

"Preventive care" got a bit better defined under the Affordable Care Act (Obamacare). There's a list of preventive services -- see https://www.healthcare.gov/preventive-care-benefits/ -- that plans offered in the Marketplace *must* provide without copay or deductible, including "Colorectal cancer screening for people over 50." Employer-provided insurance is generally grandfathered in, and sometimes doesn't provide identical benefits. In any case, pouchoscopy is just too unusual to be listed specifically on *any* insurer's list of preventive services, and their review procedures and staff are generally too callous to do anything thoughtful about individual situations. They probably are obliged to cover it in full, though they might reasonably argue that yearly is too often. If the dollars are worth the hassle you might get results by filing an appeal through your state insurance administration (that's what I did to get VSL covered, but it took a year). 

 

Poucho is correct that these cancers are unusual - nothing like the frequency of colon cancer in ulcerative colitis. OTOH, if you had dysplasia, cancer, or FAP, frequent screening is pretty important. FWIW, I had none of those things and generally don't bother with screening pouchoscopy. I've had a few pouchoscopies, when pouchitis symptoms warranted, but nothing like annually. There's not great data to support any particular screening frequency.

Scott,

 

In fact I was told by my former GI who is a protege of the famed Dr. Shen that a study on rectal cuff cancers out of the Cleveland Clinic showed a sufficient number of cases to warrant annual screening in those J Pouches with chronic inflammation and/or pre-colectomy dyplasia histories.  I had been on a 2 year scope schedule in 2010 to 2012, and that decision was reversed after Dr. Shen informed my GI of the CC study.  So there is data out there strongly suggesting annual screening for those with chronic inflammation and/or dysplasia histories.  For everyone else, screening frequency is an open question.

I certainly agree (as I wrote) that those with a cancer predisposition should be screened quite regularly. The actual frequency (of *any* screening) that's appropriate turns out to be a complicated question that even experts sometime violently disagree about (recent examples in the news include mammography and prostate/PSA testing). In any case, it's a mistake to neglect a high-risk rectal cuff, and in other cases it's not crazy to use "whatever frequency makes you and your doctor most comfortable" as a standard. Just don't expect your insurance company to have a clue what you're talking about if you want the procedure to be given special "preventive care" consideration. 

Yes, I agree that the surveilance frequency should be set individually. But, regardless of what that is for you, it is part of your ongoing follow up monitoring, and subject to whatever deductible and/or copay that is indicated in your plan. You are going to pay one way or another. I spent hours crunching the numbers to compare the costs of a high deductible plan, lower deductible plan, and copay only plan, and they all wound up costing about the same (at least for me). I either had higher premiums and lower out of pocket costs or lower premiums and higher out of pocket costs. The HSA plan just allowed us to shelter some money from taxes.

 

Jan

Had dysplasia in the rectum so Dr. Corfine said I needed to be screened even after my pouch

Thanks for all your responses looks like I am going to have to pay. I was just trying to save myself a few thousand. Dr, Corfine did mention that Cleveland Clinic study to me so he put me on a schedule of annual scopes of the pouch with a CT scan or MRI of the pelvic area every two years. Thank God I have not had any issues with my pouch other than scar tissue build up by the rectal cuff and in the small intestines. Dr. Harris told me after my initial operation that I was good to go so I guess there is even a debate among the doctors as to what screenings are needed.

I had my surgery in 1995. What I've learned over the years is that the knowledge base is evolving. What was a truth then has since been replaced by new truths. Basically, they make make their best educated guess based on the available data at the time. Just like with any other segment of health care, standards of care change. 

 

After several years of negative biopsies I was placed on an every 2-3 year scope schedule. Now that evidence of more chronic/recurring pouchitis has been an issue, I get scoped every 12-18 months, depending on how I am doing.

 

Jan

This is slightly off-topic but related.

 

I recently applied for supplemental life insurance and was turned down due to the fact I have a history of pouchitis. I was told I could have my doctor file an appeal if I want. I'd kind of like to do that even though I'm doubtful they would reverse their ruling. Not sure what my doctor should tell them if we tried.

 

Has anyone ever had this happen to them? Are pouchitis patients really on an express line to the grave?

I can get Aflac but have to wait one year for them to cover any chronic condition.  Or past problems.  Or to cover my pouch.  To get right to it. I don't and never had pouchitis.
Richard.

Pouchitis has no impact on mortailty, but IBD in general brings out the stupid in actuaries. I long ago abandoned trying to get reasonable life insurance. I try to save money aggressively, which over (a long) time can reduce or eliminate the need for life insurance.

Scott makes several good points.  My bet is the biggest hurdle is getting the insurance companies to understand that a pouchoscopy is pretty much a colonoscopy.

 

Insurers probably think you are getting a scope inserted into an ileostomy bag!  When I went for a pouchoscopy a few years ago, the radiologist asked if my pouch was inside or outside because at the time I did have an ileostomy.

 

 

 

If you're trying to get pouchoscopy covered as preventive care I'd suggest comparing it to flexible sigmoidoscopy, which is much more similar in time and equipment than colonoscopy. Some providers simply code it that way to avoid foolish responses by insurance companies. Calling it a colonoscopy, though, might be interpreted as insurance fraud.