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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Tue Sep 30th, 2008 17:24 |
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I was instructed by Aussie Barb and Jeannine to start a new topic called MP and Medicare for those on the Protocol not permitted to post on the main site.
Unfortunately many of the information links on the main MP site regarding medicare are now old and/or no longer link to working pages.
This can be a place to gather more up-to-date information and proceedures for external MP patients to learn how to get the most out of their Medicare.
I currently am about to begin Medicare in 3 months. To the best of my knowledge I believe I am not eligible for medicaid. I'm fairly brain fogged and very much overwhelmed as to what to do.
I did go to the medicare.gov website, entered Benicar into the formulary and collected a list of all the perscription programs for my zip code that list Benicar as Tier 2, state no quantity limits or incremental therapy requirements, but I read on the marshallprotocol forums that these listings may not reflect the programs actual behavior when actually fillng your Benicar Rx's.
Anyone who has walked this walk, joined medicare, chosen either a gap program or an advantage plan and has figured out how to maximize their benefits for the MP, please share your stories here.
I'm sure there are many more than myself who can benefit from your wisdom.
-LugLast edited on Tue Sep 30th, 2008 17:35 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Jeannine R.N.
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| Joined: | Wed Oct 17th, 2007 |
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Posted: Wed Oct 1st, 2008 00:18 |
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Medicare Drug Plans You might want to contact some of the people in this post via email or private message.
Let us know what you find out!
IF ANYONE ELSE CAN GIVE US ANY INFO PLEASE DO SO!!!!
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Wed Oct 1st, 2008 01:06 |
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Hi Jeannine,
mercuryspice PM'd me and said her perscription provider after one year has now refuesed to fill her Benicar Rx. It seems that an Rx plan can refuse a customer forcing them like a nomad to search for greener pastures.
I have no idea what rights a Medicare participant has
- I'm assuming they are slim to none.
-Lug
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Barney
Member
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Posted: Wed Oct 1st, 2008 03:29 |
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My experience with Benicar and Prescription D has been this:
Each year when it is time to pick your provider....I copy the LETTER OF MEDICAL NECESSITY from the MP website, put my name in the right place and do not alter anything else, take it to my doctor who in turn, signs it and sends it to my provider (Aetna). Then, I get my scrips from my doctor. I go to our local Kmart and get the scrip filled..........absolutely no problems for over 2 yrs now. I have never had a provider tell me they would not fill. Where do they have a right to do this to begin with? Who has the right to refuse the scrip your doc wrote...who do they think they are anyway?
Now that I have remarried and my husband is retired Navy, I will not have prescription D...I will go into Medicare and Tricare for Life (military insurance that kicks in after Medicare has paid). I called ahead to the prescription agency (Express Scripts) and discussed what I would need...the lady advised the Letter of Necessity would be nice and that she was sure they could work around any problems.
I guess I am a bit pushy (Trevor would agree to this), and I do not take no for an answer without meeting with the CEO and being sure this cannot be worked out. I also say to the person that this treatment is saving my life and I would not be alive without it. So far they are really impressed by all this.
Hope this helps everyone.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
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Sarcoidosis-diabetes-asthma-loss r/kidney-hysterectomy-osteoprosis=Started MP 1/1/05,all 3 phases.
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Jeannine R.N.
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Posted: Wed Oct 1st, 2008 05:20 |
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Barney what I also love about you is that your doing this all with ONE kidney!!!!!!!! I think that speaks for itself!!!!!!!!!!!!!!!!!!!!!!! Thanks for sharing this info as it will help many others!!! Glad to see you back around the sites and congrats on your marriage. It is good to know that you are able do these things thanks to the MP.
Jeannine
IF ANYONE ELSE HAS ANY INPUT PLEASE SHARE!
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Wed Oct 1st, 2008 17:03 |
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Hey Barney,
That's great news to hear. Medco was my previous Rx provider and they definitely refused my Benicar on the grounds of no Peer reviewed studies. I fought them tooth and nail for months. Some of the tale is documented on the main site under Medco. It really took a toll on me. Those suffering from severe fatigue can't muster the bluster required to fight these beuroracies. It can definitely make your health worse.
Glad to hear your sucess story. I wish it was the norm.
-Lug
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Barney
Member
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Posted: Thu Oct 2nd, 2008 02:43 |
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Lug,
I too, suffer from extreme fatigue (it took me 5 naps in a rest area to get home from my daughter's home). The sun just really wastes me.
What I am trying to say about acquiring the meds....there must be some way that we can force these pharmacies to fill the scrips as written. When someone is playing with my life, I am going to fight back and that may only be over the phone, changing places to buy, or getting your doc involved. This is not the first time I have heard this of Medco. Who do they think they are to question our doctors? There must be some place or some one who is over them.
HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY
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Sarcoidosis-diabetes-asthma-loss r/kidney-hysterectomy-osteoprosis=Started MP 1/1/05,all 3 phases.
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ShrnHml
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Posted: Sat Oct 4th, 2008 20:31 |
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Hi everyone..........................Jeanine has suggested that I might have something to add to this subject.
I have read the forum and also the link to the MP website forum and find that most of the information has already been written by someone. However it takes a lot of reading to get it all. Having gone through four companies and two unsuccessful appeals processes, I will try to summarize what I now know.
1) Use the http://www.medicare.gov website to pick out companies operating in your zip code that have no limits or step therapy for Benicar.
2) Call that company and VERIFY. If possible get a supervisor to make the verification. Write down that person's name, location, and title. Note date and time.
3) If a denial does occur at the first level, try the MP "letter of medical necessity" from your doctor. Don't use the name, Marshall Protocol. Say "systemic inflamation" instead. Note that the med is being used off label per doctor's orders.
4) If this letter does not work, you are extremely unlikely to win any appeal. IMO the system is rigged towards big pharma.
5) If you are "dual eligible" (Medicare + Medicaid), try another company any time during the year.
6) If not dual eligible, you are stuck with this company until the new re-enrollment period begins. I have heard that olmicep from India is the cheapest way to get olmesartan until you can get it covered by insurance.
There appears to be no standardization. Aetna would not cover Benicar for me but has for Barney. Meg is the only person I know of who got it from Humana. The better bets for me have been Silverscript, Sterling, and Unicare, but that could change at any time.
Jillian has suggested calling your State Insurance Agency if you need extra help. Two others have said that asking for a three month mail order supply raised a red flag. My advice: don't rock the boat. Go month to month.
I hope this is helpful. ..............Sharon
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JoshR
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| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
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Posted: Sat Oct 4th, 2008 20:53 |
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| I wouldn't even use the term "off-label", since in Benicar's case, there is no label to be off of. Its use is not restricted to any particular set of conditions.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Lugubrious D
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| Joined: | Thu Apr 17th, 2008 |
| Location: | Los Angeles, USA |
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Posted: Sat Oct 4th, 2008 22:56 |
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Has anyone relying soley on Medicare dealt with a "Bait and Switch"?
What rights do you have if your get trapped/tricked into accepting a perscription plan that later refuses to fill your Rx?
Why are Medicare patients trapped for a year while Medicaid Patients are not?
Does big pharma really legally have the right to raid your savings until you qualify for Medicaid?
I've also recently seen "Under The Skin" - the excellent Lyme Disease Documentary
which extensively discusses the insurance company manuverings to prevent coverage of long term antibiotic treatments.
Is it possible for Medicare Perscription plans to deny "Long Term" Antibiotic perscriptions like those for the MP?
Last edited on Sun Oct 5th, 2008 02:52 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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Jeannine R.N.
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Posted: Sun Oct 5th, 2008 00:35 |
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Calling the counsel on aging or the like in your area to ask what they think could also be of benefit to you or others.
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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jillian
Member
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Posted: Tue Oct 14th, 2008 16:21 |
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Hi Everyone,
I must tell you that as much as I appreciate that Medicare now has drug coverage, I dread this time of year as I must double-check each year that the insurance company I choose has UNLIMITED coverage for Benicar. So far, my room-mate, also on the MP, and I have done okay and not had any problems. She is dual eligible (Medicare/Medicaid), I am not.
As Sharon posted on Oct 4th, go to Medicare.gov and do a personalized search. I've just gone there and although sign up doesn't begin until November 15th, you can start searching for a policy using the Formulary Finder. Once you've entered your drug infomration into the Formulary Finder, Medicare will give you a list of possible policies. You must go one by one through the list (by clicking on the name of the plan) to see if they offer unlimited Benicar. How do you know that?, see below. The policy I've had for the past two years is no longer available. Each year there are fewer and fewer policies with unlimited Benicar, and many of these have the higher premiums... This year, for me, there are ONLY 3 different companies offering 5 plans that initially come up with no limits on Benicar! I'm preparing that by next year none will be available and I'll have to fight for coverage, which I'm not sure my doc will do!
IMO, very important things to consider about the list the the Formulary Finder will give you:
- You most probably want a PDP Plan Type (Precription Drug Plan). The MAPD is a managed care plan that's like a HMO.
- You must be sure that the plan lists NO in any of the plan limitations/restrictions (Prior Authorization, Quantity Limits, Step Therapy).
- Then, once the information is available (not yet, too early), you'll need to dig more to find out what that specific policy covers, i.e., the cost of monthly premium, the deductible, the co-pay, how do they handle the coverage gap, etc. I've done that in the past by going to the insurance company's website and printing out their formulary to double-check the status of Benicar. I would imagine this earliest this information will be available is November 15th, when we can sign up for a policy.
'til later,
Jillian from North Dakota
Last edited on Tue Oct 14th, 2008 17:12 by jillian
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. Started MP Phase 1 Oct.2005; now in one of the modified Phase 2s.
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Lugubrious D
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Posted: Sun Oct 19th, 2008 01:06 |
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Hi guys,
I'm posting my math to get some feedback.
It's taken me a month to gather this together and I'm pretty fogged.
I need to know if there's something I'm not understanding right:
The Best Medicare Part D coverage of Benicar I can find seems to be - Tier 2 -
which as far as I figure out research wise
seems to be 50% coverage at something like a $50 dollar co-pay. ???
If this is correct - which I'm not even sure of since I've never done this before -
currently plays out:
$50 dollars for 120 (4x day) -per month - if they honor it - which totals
$150 dollars for 360 tablets (a 3 month supply) - but there is an expense cap
which I've heard runs out after approximately 9 months.
Adding in the cost of paying monthly for the Part D RX program you sign up for,
these programs have about a $250 dollar deductable before they even kick in
and an average cost of $25 dollars per month (maybe more).
so 12*$25 = $300 + $250 out of pocket = $550 dollars.
Right now - CanadaGeneric.com sells Benicar (generic) @ $205.99 for 360 tablets.
So a year's supply is about $825 dollars.
If my figures are even remotely right - you don't save anything at all.
$250 out of pocket - your first 3 months - then the drugplan kicks in
$150 dollars per 3 months untill you reach the end of the year = $450 dollars.
Plus your drug plan fees for the year - $300 dollars.
This totals $1000 dollars.
So what's the point? I really need a 2nd opinion on this.
I have nothing to compare my figures with.
I'm not even sure I'm getting the problem right.
It took me a month to get this far and I'm pretty fogged up.
I was getting my RX filled at a $20 dollars copay for 120 tablets
before medicare which justified my rediculously high priced insurance premiums.
Is there even the point of having a drug plan?
...or am I completely missunderstanding this?
-Lug
Last edited on Sun Oct 19th, 2008 01:16 by Lugubrious D
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1.25D - 54 pg/mL 25D - 15 ng/mL -Began Ph 1 May08 - Began Ph2 Aug08 - Z M B - Chronic Fatigue, Thyroidosis, Motor Retardation, Psoriasis, Migraines, Severe Disturbed Sleep, Still Photo-sensitive.
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fostymom
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| Joined: | Mon Aug 18th, 2008 |
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Posted: Wed Nov 26th, 2008 00:12 |
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My Benicar prescription was denied by MaineCare (medicaid) for the following stated reasons:
1) member must try and fail ACE therapy (or be on diabetic therapy) before an ARB can be approved--chart notes documenting prior trial of ACE therapy or submit clinical rationale why this would be inappropriate.
2) clinical references supporting safety and efficacy of the dose requested must be submitted
3) MaineCare does not cover use of this drug for non FDA approved doses unless at least two published double blind placebo-controlled trials are provided supporting such use.
I believe that the following Letter of Medical Necessity may cover 1) above:
Letter of Medical Necessity
To Whom It May Concern:
____________________ is my patient and is currently under my care for ______________. I have prescribed Benicar, an Angiotensin II Receptor Blocker, at 40mg every six hours.
____________ patients have a dysregulated Vitamin D metabolism which causes abnormally high levels of the active metabolite 1,25-dihydroxyvitamin-D. This results in chronic inflammation and prevents the immune system from killing the cell-dwelling pathogens that trigger the abnormal immune response.
By blocking the angiotensin receptor sites, Benicar reduces the level of 1,25-D dramatically and provides an inflammatory blockade which allows the immune system to function normally. This greatly potentiates the use of antibiotics that treat the underlying cause of the disease.
Patients with inflammatory disease have many additional angiotensin II receptors in their inflamed tissues and they all need to be blocked to provide an adequate anti-inflammatory effect.
This inflammatory blockade only works if an adequate blood level of Benicar is maintained by dosing at least every six to eight hours. Therefore the dosage has to be individualized (in full accordance with the labeling) in order for the drug to achieve this effect.
FDA guidelines allow this dosing and this medication does not work effectively for this purpose at a lower dosage.
No other ARB (angiotensin receptor blocker) is adequate to substitute for Benicar(olmesartan), as it alone performs the specific actions needed to also act upon the VDR (vitamin D receptor) and fully enable the immune system.
Thank you for your consideration in this matter.
Sincerely
I believe that the following may address 2) above:
http://www.fda.gov/cder/foi/label/2002/21286lbl.pdf The Benicar prescribing Information Guidelines from the FDA (pages 6 to 7 under sub-heading 'Clinical Trials') states "the antihypertensive effects of Benicar have been demonstrated in seven placebo-controlled studies at doses ranging from 2.5 to 80 mg for 6 to 12 weeks, each showing statistically significant reductions in peak and trough blood pressure....[but] doses greater than 40 mg had little additional effect."
I welcome any additional suggestions to modify the above or to help with 3) above. I have had high blood pressure readings, but my inflammation is random, I have pulmonary nodules and my dx may be presumptive sarcoidosis.
I would like to respond to the denial by 28Nov08.
As has often happened before, I'm not sure if this is the proper forum to ask this question.
Thanks again, Carol (mother of caroldeleah)
Last edited on Wed Nov 26th, 2008 00:27 by fostymom
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Fatigue/HighChol/SleepApnea/RLQPressure/Skin?/PulmNodules/PreMP/D125(4-08)32/D25(10-08)14/LowDindiet
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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 26th, 2008 00:53 |
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Carol,
Last week medicare came under criticism in Congress for 'wasting' money paying for drugs used off-label. Off-label prescribing is the privilege of every physician in America, yet it sounds to me as though Medicare is trying to make it as hard as they possibly can.
You cannot possibly meet their point #3, very few medications used in chronic disease would meet this threshold, not even prednisone or MTX.
Point number one implies that your physician has prescribed the benicar for hypertension, but since it is at variance with point 3, it sounds as they they are just trying to cause you and your doctor trouble.
Point number 2 could be satisfied by sending the transcripts of Tom Perez and Greg Blaney's presentations at the Porto Autoimmunity congress.
I expect Medicare want patients to get up-in-arms, and march to Congress telling them to ease off from putting pressure on Medicare. That's my guess, but I may be wrong. In any case, it looks as though Medicare is not going to help you in the short-term.
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fostymom
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Posted: Wed Dec 3rd, 2008 01:14 |
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Thank You, Trevor, I appreciate knowing your perspective.
I probably should have started a new topic because the qualifications for Medicare and Medicaid are different. In the absence of another response, I will assume that what you said is also relevant to Medicaid.
Is there anyone out there who has had success (in the long-term) with an appeal to Medicaid?
BTW, is the forming of such a contingency in the realm of possibility? What is the criteria/prerequisite for such an effort?
Appreciatively, Carol
Last edited on Wed Dec 3rd, 2008 01:22 by fostymom
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Fatigue/HighChol/SleepApnea/RLQPressure/Skin?/PulmNodules/PreMP/D125(4-08)32/D25(10-08)14/LowDindiet
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Deedee
Member
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Posted: Wed Dec 3rd, 2008 15:24 |
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I have had a great deal of experience with Medicaid due to my daughter having developmental disabilities and mental illness. The key is to have your physician document the "medical necessity" of this drug. By FEDERAL LAW Early Periodic Screening and Diagnostic Treatment law (EPSDT) they may not deny your child under the age of 21 anything that is medically necessary, whether it is part of the "state plan" or not. For more information on this law, visit http://www.healthlaw.org. You can site this law to the person who is denying the medication. The attending physician determines medical necessity. Also, any appeal you make should be sent certified mail and pay attention to any deadlines. Include the physicians statement that the medication is "medically necessary" (use those words.)
Please note: Your statement of medical necessity is meaningless to them. Only the attending physician can determine medical necessity by federal medicaid law.
Last edited on Wed Dec 3rd, 2008 15:26 by Deedee
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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