[I've surely loaded this post up with too many issues. If need be, I can break it up.]
My LLMD just rx'd Alinia for me as part of a new treatment plan. The doctor rx'd 56 pills per month for 2 months. When I went to
fill the rx, I discovered that Oxford will only cover 6 of the 56 pills for a $35 co-pay, and to fill the rest, they want me to pay $35 for every 6 pills, for a total of almost $700!!
I spent an hour on the phone with Medco, only to be told that I can't have my doctor apply for a Quantity Exception. I can only appeal it via mail with a letter of medical necessity from the
doctor AFTER paying all that $$, and having it take about 6 weeks to hear back!! Every time I've appealed before, I've been denied. I can't afford that anyway, so that isn't going to happen.
What have other people done when they were rx' Alinia---or anything else that their insurance company doesn't want to pay for?? Go through a Canadian pharmacy? We pay too much for
our premium to put up with this nonsense. It's getting worse and worse in terms of all the meds they will not cover, or they will only cover a tiny amount.
I need to get going on the treatment. As it is, Oxford is not paying a cent for my LLMD's visits or my neurolgist's visits, even though we pay for out of network coverage. They manage to weasle out of paying, in spite of my fighting their denials.
In the case of my LLMD, Oxford actually told me that they send all of the claims for this dr straight to the "Fraud and Abuse
Dept.!!" When I said that he's doing nothing fraudulent, they said, "we know, but his codes (for the amount of time the visit lasts) don't match up with his notes."
He doesn't want to have voluminous notes going to the insurance company for obvious reasons. As it is, the state is trying to take this LLMD's & 7 other LLMD's licenses away in our state, which is the most endemic state in the country.
Can you tell there is steam coming out of my ears?!
Help!
Posted by GiGi (Member # 259) on :
call/google Mark's Marine Pharmacy, Vancouver, BC
Posted by sammy (Member # 13952) on :
Last year I had Medco. I could only purchase 6 Alinia at a time. It was too expensive for me to use as a treatment.
Appeals for serious issues for other necessary meds did not even go through (for other MD's, not just my LLMD). I ended up having to pay out of pocket for my meds more often than not with that plan.
I don't submit for reimbursement because of what you mentioned above. It's not worth my effort either. Sad how our doctors are being treated.
Posted by Rumigirl (Member # 15091) on :
Thank you, Gigi! I didn't know who was good in Canada.
I notice that some Canadian pharmacies are selling a generic Alinia, when supposedly there is no generic yet (except in India, where they don't honor the patent laws). Gigi, did you use a generic Alinia? Do you know about that?
It's highway robbery that the US is held hostage to the pharmaceutical companies, who charge us astronomical prices matched no where else in the world!
Posted by AuntyLynn (Member # 35938) on :
Hey just wondering what State you are IN if you are saying they are going after docs?
Posted by Rumigirl (Member # 15091) on :
sammy (I'm so glad to hear from you!), so you didn't use Alinia? What did you use instead, Flagyl?
I wonder about the efficacy of Alinia vs other meds, such as Flagyl. Frankly, I need to beat these infections down the best way
possible---in this case Babesia, especially. So it may be worth it for me to get it from Canada.
But what a burn, when we pay for our premium every month!!
AuntyLynn, I tried to PM you, but your mailbox is full.
Posted by sammy (Member # 13952) on :
Hi Rumi, I didn't use Alinia. There was no alternative to switch to.
I had to wait over a year until my ins changed again to try to see if they would cover the Alinia. Thankfully they do cover it now, we are using it to help treat babesia and as a cyst buster.
So I am very grateful to have it! I think that it has helped me.
Hopefully you will be able to get it at an affordable price from that pharmacy in canada that GiGi referred you to. Sad that we have to look to other sources and pay out of pocket like that.
Posted by Rumigirl (Member # 15091) on :
At that pharmacy, they say that it is a generic from Europe. But from what I see, there is no generic yet. ????
Posted by micul (Member # 6314) on :
Alinia was sold as Daxon in Mexico (still is ) for pennies years before they called it Alinia and got approved for use in U.S. Also called Nitazoxanide, also known by the brand names "Nitaxide" in Beximco Pharmaceuticals Ltd. Bangladesh, Alinia and Annita (and by Daxon,
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by micul: Alinia was sold as Daxon in Mexico (still is ) for pennies years before they called it Alinia and got approved for use in U.S. Also called Nitazoxanide, also known by the brand names "Nitaxide" in Beximco Pharmaceuticals Ltd. Bangladesh, Alinia and Annita (and by Daxon,
Do you know of a reputable pharmacy in Mexico to get it from? Or anywhere else, besides the one that Gigi mentioned in Vancouver?
It's outrageous that the drug company and pharmacy is selling it for so much money. The pharmacy tech said that the retail price for the 56 pills was $1,800!! What??!! I knew that it surely costs pennies to manufacture the med. The enormous mark-up by the pharmaceutical company and the pharmacy is obscene!
It's actually illegal to get an rx from Canada or elsewhere, although plenty of people do it, I'm sure.
Posted by Catgirl (Member # 31149) on :
We should all write our congress people (house and senate) to get this changed (ordering from out of country pharmacies). There's strength in numbers.
Posted by Ellen101 (Member # 35432) on :
This is not just about lyme, insurance companies are denying more and more meds and now you need more letters of medical neccesity than ever before.
I have run into this with meds for myself and my children that have nothing to do with lyme. As far as them reporting him, I'm not totally understanding why his codes are not matching up. Obviously that will create some red flags.
I don't think the insurance company requests the actual notes, as that would be confidential.
Posted by Ellen101 (Member # 35432) on :
This is not just about lyme, insurance companies are denying more and more meds and now you need more letters of medical neccesity than ever before.
I have run into this with meds for myself and my children that have nothing to do with lyme. As far as them reporting him, I'm not totally understanding why his codes are not matching up. Obviously that will create some red flags.
I don't think the insurance company requests the actual notes, as that would be confidential.
Posted by Ellen101 (Member # 35432) on :
Also, I'm not understanding why it would take 6 weeks. I went through this with a med I needed there was aform for the doctor to submit indicating medical necessity, which was then faxed to insurance and approved the same day.
I wonder if the issue is more with your insurance company. Your doctor should be very familiar with what to do and should be able to expedite the process for you.
Posted by micul (Member # 6314) on :
quote: Do you know of a reputable pharmacy in Mexico to get it from?
I'm sure that you will be able to find a place to order from if you do a Google search under Daxon or Nitazoxanide.
These internet Pharmacy sites are always having to change sites because the Feds here keep shutting down their sites. This is because of pressure by U.S. Companies that lobby for this.
It's bad enough that our Goverment allows such robbery of it's citizens by these companies, but for them to actively go after alternative ways of ordering meds from outside the U.S. for less money is criminal IMO!
When you find a site, it's best to not post it openly on a thread because there is no doubt in my mind that health boards here are monitored for such info.
Posted by Larae30 (Member # 35220) on :
yeah I cannot do Alinia because it is like $30/pill for me.
Posted by lax mom (Member # 38743) on :
I bought Biltricide from a compounding pharmacy, which was much cheaper than using my Rx benefits at a regular pharmacy.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Ellen101: This is not just about lyme, insurance companies are denying more and more meds and now you need more letters of medical neccesity than ever before.
I have run into this with meds for myself and my children that have nothing to do with lyme. As far as them reporting him, I'm not totally understanding why his codes are not matching up. Obviously that will create some red flags.
I don't think the insurance company requests the actual notes, as that would be confidential.
Yes, for years now Oxford will not process any claims that I send in from the LLMD or his PA without the office notes. And if I do send in
the office notes, they say that he does not write enough notes to substantiate the codes that indicate the long visit that it is (3/4
hour to 1 hour & 20 minutes). He purposely doesn't write extensive notes, because of both confidentiality and the fact that
that is what has given the state the opportunity to try to take his license away twice before. And now they are doing it again!!
I stopped sending in claims years ago, because they refused to pay a penny for my visits to him, which are expensive!! It's
criminal, but my fighting it got me nowhere. I am trying to put it through again, as I'm drowning in medical expenses.
When I saw his PA, who wrote more extensive notes, they paid next to nothing there either, claiming that because she was a PA
they didn't have to pay much---even though my visits with her were 1 hour to 1 hour & 20 minutes, and therefore expensive!!! I
am a very complicated case (as are many here). I'm so fed up with the whole darned mess, all the more so, because I can't
seem to make any progress medically, and suffer so much daily. I know that I am hardly alone in this situation. That's small comfort, however.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by micul:
quote: Do you know of a reputable pharmacy in Mexico to get it from?
I'm sure that you will be able to find a place to order from if you do a Google search under Daxon or Nitazoxanide.
These internet Pharmacy sites are always having to change sites because the Feds here keep shutting down their sites. This is because of pressure by U.S. Companies that lobby for this.
But how do I know which pharmacies are sending legitimate meds?? With the one that Gigi recommended, at least I have a
recommendation. However, I do wonder where the med is coming from, as they say it's a generic from Europe, but I see no
evidence that there IS a generic in Europe---only India. As it is, the majority of my/our gernerics are made in India, including
many of my IV meds. Having spent a lot of time in India myself, that does NOT inspire confidence! Maybe they are ok, but who
the heck knows?? There is zero oversight. It's appalling. It's profits over patient care, as usual.
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Ellen101: Also, I'm not understanding why it would take 6 weeks. I went through this with a med I needed there was aform for the doctor to submit indicating medical necessity, which was then faxed to insurance and approved the same day.
I wonder if the issue is more with your insurance company. Your doctor should be very familiar with what to do and should be able to expedite the process for you.
In the past, they let my dr fax in a letter of medical necessity to apply for a Quantity Exception, and they allowed for an
expedited review. Now, they are NOT allowing an application for Quantity Exception, and NOT allowing a faxed appeal (only by
mail both ways with no option for an expedited appeal), and only allowing an appeal AFTER I have paid the exhorbitant co-
pays (which I can't afford)!!! Plus, every time I have appealed a med decision, I've been denied.
Posted by Ellen101 (Member # 35432) on :
I wonder if the issue then is your insurance company. I have BCBS and they have not had an issue with anything I have filled for lyme.
It looks like alot of people have had issues with Oxford.
My BCBS of Kansas has been wonderful. I have had nothing refused.
Posted by paulieinct (Member # 17514) on :
I took Alinia for several months, and my BCBS covered it. This drug really kills bugs. I will say my herx was so bad I was asking for morphine (instead I just stopped for a week). I have read that Alinia works against parasites, viruses, fungi, and bacteria. All I know is, this stuff was killing bugs DEEP in my bones.
CT where I live has an Office of Health Care Advocacy. Patients can file a complaint with them after exhausting all appeals with the insurer.
I was prepared to do this after BCBS denied coverage (my appeal denied as well) for IV beyond 2 mos. What happened, amazingly, is that after I started paying out-of-pocket to Infuserve in Fla., BCBS started paying Infuserve who would then send me checks. I was shocked silly.
Infuserve is great in that they do everything possible to try to get your insurer to pay. Highly recommended.
I encourage all who have been denied to APPEAL APPEAL APPEAL. Not just your insurer, but your State Insurance Commissioner, as well as your state's Office of Healthcare Advocacy if your state has one.
I personally have had denials reversed on appeal. Yes, it is a pain, and many days you will not feel well enough to do it. But then there will be a day when you have a little energy, and you can type up a letter and run some copies. There is HOPE!
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by paulieinct: I took Alinia for several months, and my BCBS covered it. This drug really kills bugs. I will say my herx was so bad I was asking for morphine (instead I just stopped for a week). I have read that Alinia works against parasites, viruses, fungi, and bacteria. All I know is, this stuff was killing bugs DEEP in my bones.
I was prepared to do this after BCBS denied coverage (my appeal denied as well) for IV beyond 2 mos. What happened, amazingly, is that after I started paying out-of-pocket to Infuserve in Fla., BCBS started paying Infuserve who would then send me checks. I was shocked silly.
That's great to hear about Alinia being so effective!! I've never had it. I have Babesia badly (clinically dx'd) and have had lots of parasites in the past from India, etc.
About Infuserve---I know, that's how I get my IV meds covered. Very few people know about this trick. I was told by someone in my Lyme Support Group years ago.
On trying to get the Alinia covered, after I have called Oxford on Monday, and the office of the president of Medco, if I don't get
anywhere, which I probably won't, I will make a complaint to the state AG's office. But the co's are allowed to not cover what they
don't want to cover from my understanding, so even that may not work. But I'll try. An appeal taking about 6 weeks AFTER spending the inflated prices is NOT a good option.
All of this delays my treatment, however, at a time when I am suffering so badly that I can barely go on. ANd it increases my
work and agita to an unbearable degree. I spend most of every day fighting my insurance co, the infusion co's, the labs, the dr's
and dentist's offices, etc. for years on end with no end in sight. I can't do this much longer like this.
I have been fighting going on around the clock opiods for years, and am in so much pain, I'm not sure that this has been a good
choice. I know that when I have adequate tx, the pain is sooo much better and visa versa. I've not had adequate tx much ever, due to so many tx obstacles of all kinds---medical, insurance, drs, etc.
Something has to give/change soon. What has been giving is me. I hate to say it, but I have been suicidal on and off for years
now. No, I won't act on it, but I come mighty darn close. I can't go on suffering and in this much pain much longer. And I can't
fight all these battles without end on my own any longer. ANd what choice do I have?? None that I can see. (Sorry for the long, long posts!).
Posted by paulieinct (Member # 17514) on :
Rumigirl: It is tragic that so many are getting beaten-down by the medical system all due to a pack of lies perpetrated by CDC/IDSA.
I am hopeful that Congress will get its act together and pass the Lyme Bill. At least there will be a congressional committee holding hearings, putting the IDiots' feet to the fire. Thank the gods for people like Blumenthal from CT and Smith from NJ. These guys GET IT, and when you hear them talk, they understand the outrage and the urgency we all feel.
Try to think positive, folks. The truth will eventually prevail. It ALWAYS does.
Posted by bcb1200 (Member # 25745) on :
It is the generic version made by a well known pharmaceutical company in India. (top brand.)
Posted by Rumigirl (Member # 15091) on :
Thank you, guys! I just called Oxford, and Medco gave me the wrong information!! I CAN have my dr apply for a Quantity
Exception. So I need to have him write a letter of medical necessity with any supporting documentation from my records, etc. and fax it
in. He's gonna love that---NOT! But, hopefully he will do it. Then, I should hear back 2 business days later, assuming that they don't need any more
info. He's often not in town, however. Well, at least there is hope on that front.
The whole mess of the medical board going after that many LLMD's in the state though . . . wow, I didn't even think that
there WERE that many LLMD's in the state! Some must be people no one has heard of, because I know what's what in the state.
And then there are all my dr visits not covered, even though we're paying for out of network coverage . . . I'm starting to fight
that again. It all takes an incredible amount of time and energy, which is in very limited supply. I feel like I can never get well this
way, spending endless amounts of time day in and day out for years fighting all of this. But I can't afford not to fight it either. I know that I speak for many of us.