Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-13-2011, 11:42 PM #1
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Question Insurance companies suddenly refusing to cover ketamine gel?

Among those whose insurance has covered it, quite a number of people have gotten some relief from burning pain from compounded gels containing ketamine, among other drugs. "Compounded" means than a specialized pharmacist makes up the order according to the prescription.

And although it’s not my predominate issue, at night, I would develop burning pain in both feet (they were injured almost identically on a piece of gym equipment) for which my doctor has for the last 8 years now prescribed an gel, now containing 10% ketamine, 5% gabapentine and another 5% lidocaine. A month's supply (per what were the insurance company guidelines) consisted of 400 ml. and cost roughly $650, with all but a $60 co-pay being reimbursed by the carrier. The stuff was great. That, and it was the ONLY way I could hope to wear dress shoes and socks for special occasions, not that it always worked. And here's a nice little article on point, Reduction of allodynia in patients with complex regional pain syndrome: A double-blind placebo-controlled trial of topical ketamine, Finch PM, Knudsen L, Drummond PD, Pain 2009 Nov;146(1-2):18-25. Epub 2009 Aug 22, FULL TEXT @ http://www.rsds.org/pdfsall/Finch_Knudsen_Drummond.pdf

The only problem is that after many years of picking this up, the pharmaceutical carrier recently issued a formal "Notice of Adverse Benefit Determination" on the sole ground that drugs costing less than ketamine “may” be equally effective. Oddly, two weeks earlier it issued a separate notice on the grounds that the pharmacist didn’t specify the cost of every item in the compound – having never made this request before - that has since been rectified, on account of which I'm just resubmitting as corrected. That way, if ketamine remains a problem, I can then deal with it in isolation. Getting a letter from my doctor, etc.

The only reason I mention this is that, from my pharmacist and others, I’ve heard of this happening to a number of people, as though a decision was made somewhere on high, in which case all the doctors’ letters in the world may not make a difference. (But in case they might, it wouldn’t hurt to give your MD a copy of the study by Finch et al: please note that the full citation is not on the PDF copy on file with the RSDSA, where it apparently posted the Epub.)

In any event, I raise the matter to see if others here are experiencing the same thing.

Mike
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Old 10-14-2011, 01:02 AM #2
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After 8 years of WC approving Lidoderm patches they've now started denying my refills. I believe I've stopped several instances of RSD spread from minor traumas in part by having them as part of my arsenal of pain fighting weapons. To me, it seems petty on their part. As well as being penny wise and pound foolish.

It seems to me that in both cases, this is just a matter of them latching on to any excuse possible to deny hundreds or thousands of patients? Even one months denial on meds that cost hundred of dollars starts racking up a small fortune. And many patients won't pursue the matter further...

I apologize for going off topic, but I'm curious what your opinion is on this matter...

I try not to get cynical about these kind of things, but it is frustrating. I ran into a homeless man yesterday that helped me with my cart in a parking lot one time. He is Schizophrenic, and it is very apparent, very quickly, that he has a severe pysch disorder. He was denied SSD. Maybe he was medicated at the time or whatever, but it seems like all the safeguards that use to be in place to care for those that are the most needy, are gone.

As a society we've chosen to sacrifice the quality of life of some of our most needy citizens due to their financial burden. Insurance companies might feel justified to deny our meds or treatment, but I continue to struggle with the ethical implications of their doing so.
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Old 10-14-2011, 04:03 AM #3
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Quote:
Originally Posted by LIT LOVE View Post
After 8 years of WC approving Lidoderm patches they've now started denying my refills. I believe I've stopped several instances of RSD spread from minor traumas in part by having them as part of my arsenal of pain fighting weapons. To me, it seems petty on their part. As well as being penny wise and pound foolish.

It seems to me that in both cases, this is just a matter of them latching on to any excuse possible to deny hundreds or thousands of patients? Even one months denial on meds that cost hundred of dollars starts racking up a small fortune. And many patients won't pursue the matter further...

I apologize for going off topic, but I'm curious what your opinion is on this matter...

I try not to get cynical about these kind of things, but it is frustrating. I ran into a homeless man yesterday that helped me with my cart in a parking lot one time. He is Schizophrenic, and it is very apparent, very quickly, that he has a severe pysch disorder. He was denied SSD. Maybe he was medicated at the time or whatever, but it seems like all the safeguards that use to be in place to care for those that are the most needy, are gone.

As a society we've chosen to sacrifice the quality of life of some of our most needy citizens due to their financial burden. Insurance companies might feel justified to deny our meds or treatment, but I continue to struggle with the ethical implications of their doing so.
Dear LL -

Please, there is no off topic when it comes to the essence of things. And you're right, we have greed, loss of community, loss of compassion, the list goes on. Sometime back, I want to say roughly 25 years ago, I first heard "what have you done for me lately?" I was appalled, but the other guy mean it. It was as they said, morning in America, Reagan was president, and the government was the enemy. But more importantly, they had thrown out the entire Hegelian concept of that state as the representative of the people. The vehicle by which they carried out their choices. Of course, I did so in Minnesota, still part of Scandinavia in many respects.

And then it got mean. Too tired to chart all of the twists and turns, the deliberate efforts to dumb-down the electorate (beginning with support for public education under Reagan) until - finally - everything was just about the maximization of short term profits. Who care if denying this patient treatment will result in greater medical bills in the future, we may not even insure her then, and, more importantly, I'm not going to be sitting in this particular job when that happens, whether or not I'm still with the firm.

On one hand, we lost the wisdom that fundamentally generates compassion, without my perception of you, there is no me. On the other hand, and about as far from poetic expression as I can get, we lost the idea of "social capital," that a mark of a society's wealth was what it had and was continuing to invest in its citizenry.

And the homeless man? We put him out of the state hospitals and into group homes with his new meds. Except then the waiter showed up with the check for Vietnam - a decade after the fact - "hard choices" had to be made. And fundamentally the "middle class" couldn't have cared less about "those people." So no money for (enough) group homes, mo money for meds. [And just to show that I'm not working an Anti-American bias, the same thing has happened to one degree or another in every country with National Health Plans: they are voted in by the Left and the, when the Right comes to power, it's never politically expedient to scarp them, they just have to make do with fewer resources.] And then, in the blink of an eye American manufacturing shut down overnight, and with it all of the jobs that had propelled those willing to work hard and long hours into the American Dream. But did anyone other than a few left over "fringe" politicians in Washington really care? Not on your life. They had theirs and that's all that mattered.

The residents of Grover's Corner, New Hampshire are spinning in their graves, to be sure.

Mike


PS Apologies for seeming to have ignored/walked on your post in the sarcoidosis thread. I was just so hot to trot when I saw the opening post, that I literally did not see your thoughtful reply. I'm sorry.
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Old 10-14-2011, 06:34 AM #4
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I truly appreciate the time and thought that went into your reply (to be honest all of your replies) and it's a relief that my tangent wasn't inappropriate. While I too was thinking Reagan, I didn't want to tread on any Republican toes...

Anyway, I was a bit depressed from my interaction with the homeless man, and the subsequent exchange that followed with my doc that's doing my psych eval for the SCS trial. He's generally an amazing human, and very empathetic, but I got the impression he was stunned to even be asked the question of where to find local advocacy help, and had no better response than the County psych services.

Regarding missing my response in the sarcoidosis thread, I would never feel slighted by your overlooking one of my posts.

You must realize most of us would love to monopolize your time for our personal questions, but I'm able to glean enough from your very thorough posts (both current and past) to happily keep me reading indefinately.

I hope that doesn't sound ridiculous, but you made my heart feel lighter today, and the dedication you've put into the research for this board is, simply put, amazing.
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Old 10-14-2011, 09:07 AM #5
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I believe that compounding pharmacies are coming under the gun recently, and certain FDA changes may be soon implemented.

The bioidentical hormones, are being blocked as non FDA approved, and I just found some transdermal gels for pets may be changed soon--requiring using available dosage forms for manufacture rather than the pure drug as is now done.
(I've been researching transdermal delivery of bitter medications for our cat who has mast cell cancer and that is how I found that factoid.)

Ketamine to be made into a gel, would have to have FDA NDA, made for effectiveness and safety like other drugs have. The same "may" be extended to transdermal TCAs like amitriptyline and Neurontin which are in some recipes.

I have also heard that generic Lidoderm patches are coming very soon, and would expect insurances to require the generic when that happens. I think early 2012 is the target for that.
Many insurances have accepted the rule of prior Herpes Zoster neuropathy as a requirement for coverage. I don't believe "chronic pain" is an FDA approval yet. Some insurances are not requiring a prior diagnosis of shingles for its use, and others are requiring this diagnosis. If you are being denied, I'd go thru the prior authorization procedure your insurance has in place. By contacting your doctor and having them send in special circumstances and need, you might be able to obtain them again.

As the new actions and rules for compounding pharmacies expand shortly, you may be seeing many inconvenient changes coming.
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Old 10-14-2011, 05:06 PM #6
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Dear mrsD -

I suppose the obvious question is BY WHAT RIGHT can the carriers change their treatment of compounded drugs in the middle of the "policy year"?

Mike

Quote:
Originally Posted by mrsD View Post
I believe that compounding pharmacies are coming under the gun recently, and certain FDA changes may be soon implemented.

The bioidentical hormones, are being blocked as non FDA approved, and I just found some transdermal gels for pets may be changed soon--requiring using available dosage forms for manufacture rather than the pure drug as is now done.
(I've been researching transdermal delivery of bitter medications for our cat who has mast cell cancer and that is how I found that factoid.)

Ketamine to be made into a gel, would have to have FDA NDA, made for effectiveness and safety like other drugs have. The same "may" be extended to transdermal TCAs like amitriptyline and Neurontin which are in some recipes.

I have also heard that generic Lidoderm patches are coming very soon, and would expect insurances to require the generic when that happens. I think early 2012 is the target for that.
Many insurances have accepted the rule of prior Herpes Zoster neuropathy as a requirement for coverage. I don't believe "chronic pain" is an FDA approval yet. Some insurances are not requiring a prior diagnosis of shingles for its use, and others are requiring this diagnosis. If you are being denied, I'd go thru the prior authorization procedure your insurance has in place. By contacting your doctor and having them send in special circumstances and need, you might be able to obtain them again.

As the new actions and rules for compounding pharmacies expand shortly, you may be seeing many inconvenient changes coming.
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