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#453295 - 09/30/11 12:25 AM ? Re: LDN, compounding pharmacies, & insurance
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
hi all,

i've been on LDN since september 2009. my insurance company Medco has paid all but my copay for the drug that i get from my local compounding pharmacist until now.

i don't know the whole story, as my husband has been the one on the phone for hours, in a tug of war, between the insurance company that now says the compounding pharmacy needs to break down the cost of every component, including inactive fillers, etc on the paperwork in order for Medco to reimburse us. the compounding pharmacy says that rule doesn't go into effect until january. and Medco is not reimbursing us for LDN purchased as far back as february. Another compounding pharmacy in the city said they could fill my scripts, could supply the paperwork, but that the insurance company might still refuse to pay.

i get the impression (from talking to the compounding pharmacists) that there are some real battles, big pharma etc trying to work against compounding pharmacies, insurance refusing to pay for compounded meds, etc.

anyone else having these issues lately?


bless his heart, my husband has spent hours on the phone back and forth with the insurance company and the compounding pharmacy.

the insurance company is sending paperwork for us to appeal, but there is no guarantee.

truth is, LDN is relatively inexpensive. a lot cheaper than my fish oil. and a fraction of all my drugs and supplements that i get, whether i pay out of pocket or just the copay.

i guess its mostly the principle. and another one of those "we have enough on our plates, just trying to stay on top of our chronic illness" and "really, we have to fight these sorts of battles too."

guess its just so disheartening / frustrating that so many things become uphill battles.

but really my questions are:

1. anyone else having these issues

2. any success at overcoming them

3. what did you do to get past the problem of insurance refusing to pay until one jumps through some hoop that can't be jumped through


at least LDN is cheap. at least i have a doctor willing to prescribe it. at least it helps.

really, the insurance company not paying, in the over all scheme of things, is a minor issue. i know. at least its not an expensive drug like a biologic.

and my husband is talking to other compounding pharmacies in the area, reported the problem to our HR department here at work, and we'll talk to others who might care and be able to do something about the problem.

as i said, its the principle more than anything. not really about the LDN or me. but if they (medco) can do this with my compounded drug, they can do it to any compounded drug to anybody. and that might be something expensive that someone needs to survive, couldn't afford it without insurance, and couldn't survive without the drug. and if no one fights these sort of arbitrary decisions, nothing changes. so guess we're going through this to preserve the option of compounded drugs, for people who need them, and need insurance to help pay for them.


Edited by Sue22 (09/30/11 12:30 AM)
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#453358 - 09/30/11 10:19 PM ? Re: LDN, compounding pharmacies, & insurance [Re: Sue22]
ibelieve Offline
Lurker

Registered: 09/10/11
Posts: 1
Loc: kansas, usa
what is ldn?

Top
#453360 - 09/30/11 10:27 PM ? Re: LDN, compounding pharmacies, & insurance [Re: ibelieve]
sunnypower Offline
Copper_AS_Kicker

Registered: 05/11/10
Posts: 1279
Loc: usa
I haven't had any problem but I do recall seeing somewhere that someone was trying to go after compounding pharms. Saying something under the lines of... when a drug is trialed or prescribed it's based on the original manufactured product and NOT the active drug itself mixed with other random fillers.. something like that. Don't remember if someone had posted it here or if I stumbled onto it on web.

It would be awful to not have a compounding pharm. So many ppl with so many sensitivities and allergies.. ugh!
_________________________
AS & Fibro. NSD + no sugar

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#453366 - 09/30/11 10:54 PM ? Re: LDN, compounding pharmacies, & insurance [Re: sunnypower]
SnowLeopard Offline
New_Member

Registered: 07/03/11
Posts: 9
Loc: Northwest, USA
My insurance company paid a much smaller percentage of my compounded medication than for those from Big Pharma. But, they did pay something.

I also have the question, what is LDN?
_________________________
Undiagnosed and misdiagnosed for 35 years due to sero-negative aspect of these arthrites. Still ineffectively treated because correct diagnosis (PsA)in 2012 was followed by a BRCA diagnosis and I cannot receive biologics for at least two years. Cannot tolerate oral prednisone or methotrexate.

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#453375 - 10/01/11 03:13 AM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: SnowLeopard]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
thanks all. sorry to hear i'm not alone. wondering if anyone has fought the system and won and how you went about it.

LDN is my low dose naltrexone.

maybe i was lucky my insurance company paid all but my copay for so long.

my husband thinks, from talking to others including several local compounding pharmacists in the area that my claims may have been flying under the radar until now.

partly because now as he talks to the pharmacists and medco, back and forth, the stories he's getting don't seem to add up.

as i said, we plan to appeal it, petition it, etc.........
not just for us, but for anyone who needs compounded meds

why people put up roadblocks when all we're trying to do is be as well as we can, as productive members of society as we can, baffles me.

wondering if people on other compounded meds, even things as simple as bioidentical hormones like progesterone creme are having these issues. maybe its time to ask some of my doctors that prescribe these things.

we simply can't be the only ones dealing with this.
and no one else is complaining?
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#453385 - 10/01/11 10:23 AM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: Sue22]
Donette Offline
Gold_AS_Kicker

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA
You can learn more about LDN here by doing a search for it or go to ldn.org

It is a drug that seems to help with immune disfunction.

Sue, I have Medco too, but I've been off the LDN since May, so I hadn't run into the problem yet. Medco is kind of a monopolizing bully in my opinion. My cheap stuff (like my muscle relaxer) they were going to make me pay $25 for it (instead of $7) if I continued to get it from my neighborhood pharmacy in the grocery store. They demanded (monetarily) that I fill it through their mail order. Medco is so big, you would think they could do some of their own compounding. But it probably comes down to a relationship thing with big pharma. Its all about $. Sad to say.
_________________________

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#453634 - 10/04/11 07:47 AM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: Donette]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
i was so thrilled to learn early on while on LDN (and progesterone) that Medco wouldn't touch the compounding drugs. they'd let us continue to go to our nearest compounding pharmacist that we knew and loved and let us get our drugs for the price of a copay.

at first i was nervous about the mailorder standard drugs, mostly that i wouldn't get them on time, that was an old complaint i used to hear from people. but i've never had that problem, they let you order them far enough in advance, to make it work.

one issue i had with medco early on was that they kept changing the generic. didn't mind so much that i was on a generic, but the change was unnerving, as i've gotten in the habit of making sure my pills look like they should (to avoid drug mixups like you hear happen, like you hear kill people). and i had also been told, it didn't matter which thyroid pill i was on so long as it didn't change, and they kept changing it, so to solve the problem, i just have the endocrinologist write "synthroid" "dispense as written" on my script.

and while yes, they make us do mailorder by making the local pharmacy purchases exceedingly expensive in comparison, put the local pharmacies further and further out of business, this battle over paying for LDN is the first i've experienced real bullying by them.

its not that they won't pay. its just that they insist the pharmacy write up the paper work a certain way. and the pharmacy says its illegal for them to require that. and medco says we can require whatever we want. and as usual, we're the ones stuck in the middle, paying the price.

at least LDN is relatively inexpensive.
at least i currently work and can afford my medications for now.
but i am an expensive date; getting more expensive all the time.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#453661 - 10/04/11 02:27 PM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: Sue22]
gilth Offline
Fourth_Degree_AS_Kicker

Registered: 06/19/11
Posts: 343
If I ever get diagnosed and prescribed medicines, we get them almost for free here. It's limited to a 400 dollar per year maximum. (wich isnt really a lot given wages and disability here tbh. (after that they give you a free-card that gets any prescription med regardless of type for free. You have to try 2 NSAIDS before biologics btw. I guess I should count myself lucky to live in Norway. Your system sounds so complex, maybe it's in the eye of the beholder?

Love
gilth
_________________________
Diagnosis:
Multiple Sclerosis
Psoriasis
Herniated disc L5/S1
Herniated disc C6/C7
bone marrow edema jaw joint
Vitamin D defficiency
Stomach ulcer

Top
#453687 - 10/04/11 09:46 PM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: gilth]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 20633
Loc: Upstate NY
i do think its whatever you are used to. i know i'd pay a lot more without my insurance. and with the type of medical insurance i have, i can go straight to most of my specialists without going through a GP, to me that saves so much time, is so much more efficient. and if the specialist and i aren't a good fit, i can find someone else who is. and for very expensive drugs, a copay of less than $50 isn't so bad, if one is working and can afford it, that is.

as for trying 2 nsaids before biologics: try 8 nsaids and 3 cox2 inhibitors, or something like that. but still, no biologics. i used to think i wanted them, now i just don't know. pros and cons to everything. on the one hand i'd love for it to just "magically get better" on a biologic. on the other hand "if we can do it more naturally", but all means. but that hasn't worked yet and they doctors have been trying to do that for how many years now! but i like my current rheumy, so will just try to work with him.
_________________________


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

Top
#453891 - 10/08/11 01:48 PM Re: ? Re: LDN, compounding pharmacies, & insurance [Re: Sue22]
Stormy Offline
Fourth_Degree_AS_Kicker

Registered: 09/23/04
Posts: 337
Originally Posted By: Sue22
...this battle over paying for LDN is the first i've experienced real bullying by them.

its not that they won't pay. its just that they insist the pharmacy write up the paper work a certain way. and the pharmacy says its illegal for them to require that. and medco says we can require whatever we want. and as usual, we're the ones stuck in the middle, paying the price.



You mentioned in an earlier post that your husband thought your previous LDN claims had been "flying under the radar" at the insurance company. I think he is absolutely correct. As you mentioned, LDN is relatively inexpensive. The cost was probably not enough to trigger an internal review until now. Although your compounding pharmacy is accurate in saying that the legal requirement (under the Patient Protection and Affordable Care Act - "Obama Care") that they submit a breakdown of ingredients has not gone into effect yet, it is not illegal for the insurance company to require a breakdown before they pay for the compounded medication. It has been Medco's policy to do so since at least 2006 and most insurance companies have a similar policy. That may have been part of the reason your initial prescribing doctor did not want to deal with your insurance company on this Rx.

With your pharmacy's co-operation, you can resubmit the claim in accordance with the insurance company's guidelines, but you may not have much luck if you are trying to fight the requirement for the breakdown of ingredients. It is a relatively common insurance company policy now and will soon be a legal requirement. When they review the claim closely, you may also have a problem because of off-label use and the non-FDA approved dosage of Naltrexone. It may be worth the fight, but it may also be more hassle then it is worth for an inexpensive medication.

Top
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