posted
OK you Lyme-activist type people, I need advice. I have been in a battle with my mail-order pharmacy over obtaining antibiotics. They have started cancelling orders for any antibiotics for me. I am fighting it each time and so far have been able to access the antibiotics at a local retail pharmacy.
I stood firm and finally received a copy of the letter they sent to my prescriber stating, among other things:
"The Infectious Disease Society of America (IDSA) guidelines on the treatment of Lyme disease do not support combination of antimicrobials or long-term antibiotic therapy."
Yes, they finally put it in black and white for me. They are applying IDSA guidelines when I have intentionally selected a physician who treats using ILADS guidelines.
So how can I best use this letter they've sent me?
In the process of obtaining the letter I spoke with a representative of a retail pharmacy program who said he is aware of 10 to 12 other people in my "exact situation"--Lyme and denied access to mail-order prescriptions.
My plan so far is to write back to the pharmacy/parmacist using some of the verbage from a sample letter to an insurer and the CT Attorney General's Office press release I found links for on a message about "chest-bumps" over on support.
For me it feels more like head butts than chest bumps but that's probably because of the headaches I'm having...I digress.
Would it do any good to forward a copy of the letter to the CT A.G? AG in my home state or where the pharmacy is located? Or the state where the pharmacist has on the letterhead? Can you suggest anyone else that may be interested?
I can't help but think that maybe, just maybe this little bit of evidence might be used to help myself and others preserve our access to mail-order benefits.
Am I just spitting in the wind? Let me know your thoughts. Thanks, Grannie
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Hey Grannie,
Go to the California Lyme Disease association website. They have developed a draft letter, which was written by former attorney (the one that worked with the CT attorney General).
They say to personalize the letter, and attach a copy of the CT attorney General Findings. You can also dowload a copy of that CT AG press release from them.
When you send your letter, be sure to CC your own state attorney general. Also, find out who your states oversight board is for appealing health insurance deniels, and send copies to them as well.
Read the step by step directions at link below, and good luck fighting the B@$%@rds!
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Grannie,
Lorraine and I worked on those letters together, so I also have a copy of them here I can email you if needed.... and I have the written instructions if you need them. I don't see them on CALDA's site.
It's so nice CALDA finally got the letters on the web site so you can just download them now, which is a big help for patients! I am so glad to know that too, thanks Amanda!
When they were first published in Lyme Times, people had to type them out by hand from the publication. That was a pain... especially if you can't see well, think well or type well... like me.
I would also fax your denial letter to the LDA if you wouldn't mind. That sort of documentation (your denial) would be good for them to have on record with others they are collecting. They will respect your privacy, just let them know what you want protected.
Your Attorney General won't assist you with this I'm afraid, so I wouldn't bother with that piece of the puzzle. In fact, it might work the opposite for you and us, if you contact them.
I have never seen such a set up for an AG's office as they have in Virginia. It's nuts if you ask me. They work for the state's benefit- the health department included... NOT the individuals there. They about drove me nuts while we were doing the AG action and I was contacting various states and ran into their road blocks.
You might also want to give your pharmacy the ILADS guidelines with a statement saying you and your doctor, not a medical society who has been investigated for illegal practices related directly to their Lyme Disease Guideline development process, and was FOUND GUILTY and is being sanctioned for their wrong doings, has chosen your treatment plan.
Also you might mention the IDSA guidelines state right in them that they are "recommendations" and it is up to doctors to make the health care decisions. The IDSA has a nifty disclaimer in them you may want to copy too.
They try to use that "it's only a recommendation garbage" to excuse their blundering garbage protocols when they don't work and people suffer... so please do use them against them if you can.
You might also... can you tell this makes me VERY angry to hear?... ugggggg...
You might also repeat the words CHRONIC Lyme over and over and point out that the IDSA Guidelines are limited and do not address treatment of CHRONIC Lyme in their guidelines... only early Lyme treatment.
And CALDA's survey indicated.. well, here is the info Lorraine just sent me tonight stating how many failed treatment on IDSA protocols... and how many improved with additional treatment.
I wish you luck and I do hope you get your meds ASAP. This situation really makes me simmer and stew.
If I can help, please let me know.
Remember too that Wal-Mart and Giant Food Store and possibly other pharmacies are providing free, low cost or $4.00 prescriptions for a number of antibiotics. You may want to just get meds there till this gets straightened out?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh.. and "no" to the question should you forward the letter to the CT AG. His investigation is over, so it would be best to send it to the LDA for any actions that will be taken in the future.
posted
Thanks you, thank you , thank you for the direction, suggestions, recommendations, strategy, links, etc. I don't think well as it is and add anger to the mix and it'd be easy to go shooting off from the hip...probably would have shot my own foot in the process judging from Tincup's info on the VA AG office.
Amanda's link is the one I found elsewhere on Lymenet so yesterday I put together a first draft to the pharmacy adapted from the sample letter at the link.
Hat tip to Amanda, TinCup and Lorraine for making my life easier...might have quit if I had to think all this stuff up by myself. My product and plan certainly wouldn't have been as coherent.
Now I'll go through the other suggestions one by one and edit freely, compile and send to the appropriate places.
I truly appreciate the help from you more experienced warriors. grannie
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I found a little conflict of interest link going on with your delightful pharmacy and the Worm... and IDSA group.
No big surprise.. but that may be where this is coming from.
$$$$$
And to see the list of references that your place uses to support its position ... only 4 of them... but good grief!
One being the trash paper.. "A Critical Appraisal of Chronic Lyme".. and 3 other equally idiotic publications.
I think you have a chance to make things right for you and many others here.
Once the company is officially notified they are basing decisions (and denying medications to sick patients) from a medical society that has been investigated for illegal practices related directly to their IDSA Lyme Guidelines.. and conflicts of interest are a HUGE problem there...
They should have to suck it up and change that policy.
I would copy your complaint to the CEO of the pharmacy and address it to its stock holders and other admins at the company. Go to the top from the get-go.
I also noted MANY others have problems with them .. while they are putting down BILLIONS in profits.
NOT a pretty picture to paint to the CEO's and.. you could mention releasing this mess to the press.
Got it?
Good luck.... and know I am anxious to hear any results.
If you need an editor for a harsh but quick look-see... just holler... and know we are behind you on getting this fixed!
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I am fighting it each time and so far have been able to access the antibiotics at a local retail pharmacy. ![[confused]](graemlins/confused.gif)
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