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Medicare Part D and anti-retrovirals

Discussion in 'XMRV Testing, Treatment and Transmission' started by Sushi, Dec 2, 2009.

  1. Cloud

    Cloud Guest

    The currently available anti-retro viral meds are indicated for HIV/AIDS not xmrv. Using these drugs for xmrv is considered "off label". Most often off label use of drugs is not covered by any insurance plan without some fantastic medical justification by the doctor and and an insurance claims adjuster in a good mood. If anyone has some info that overcomes this problem, I would really appreciate this because I'm in the same situation.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I just spent some time on the Medicare website comparing plans. Here is my tentative conclusion: antiretrovirals are so expensive (even if they are covered) that they would drive you into the donut hole very fast and then none of your other drugs would be covered.

    Looking at prices from, for instance, Canadian pharmacies, it might be a better plan to, if some drug turns out to be a front runner for XMRV, order it online and just pay for it without insurance.

    I looked at the plans available in my area and Wellcare would pay for everything I currently take, for $0--as I only take generics now and they don't have co-pays for generics or have an annual deductible. Also, their monthly fees were only about $30 whereas my Blue Cross is going up to $44, with added co-pays (weren't there last year). So I will probably switch to Wellcare. I don't remember which of their plans I was looking at, but it didn't have a deductible or copays on generics.

    I think a couple of others said they were happy with Wellcare?? All this is WORK, but if you don't do it, you may end up with higher prescription costs. The Medicare site where you can compare plans is actually very good.:eek:

    Sushi
  3. gracenote

    gracenote All shall be well . . .

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    SHIP and Medicare

    cjbrennan,

    Have you tried calling this agency yet? I'm told they are very helpful, though I haven't called them personally. (From a post I made on another thread.)

    It's called the State Health Insurance Assistance Program (SHIP). To find the number for your state, go to www.shiptalk.org or call 1-800-677-1116.

    It is the people at SHIP that I've been told are "kind people" and very helpful. Let me know if you call if they are helpful to you.

    ----------
    ETA: Just realized this is the same thread I posted on before. Maybe it needed a second look?
  4. thefrug

    thefrug

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    Part D and anti-retrovirals

    (hi, I'm new here.)

    I was searching the web for Part D information and happened to find this:
    PA= Prior Authorization
    Full article here.

    Can't really help with what drugs are in which tiers in different plans, but at least they all have to have them on the formulary. Though as Ross said, using these drugs for XMRV would be off-label and probably not covered. You would have to request an exception, which would probably be denied, and then you would have to file an appeal, which is a big headache, but might be worth your time.

    I appealed a Part D denial of an off-label prescription a couple years ago, and the process took about 4 months, but in the end it was approved. I found this site helpful.
  5. klutzo

    klutzo Senior Member

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    Formularies can change

    Medicare Part D insurers all tell you that they can change their formulary at any time, so you could pick a plan that covers your drugs only to have them change it a couple of months later.

    I just found out that the FDA has removed all generic pancreatic enzymes from the market permanently due to standardization issues (translation: Big Pharma doesn't want competition for it's expensive brand names). So, my last refill was the end of my free drug. I will now be forced to buy a brand name. The brand name enzymes cost between $300 and $500 per month at my dosage level. My husband barely has any work now and is self-employed, but he has made enough earlier this year that we would not qualify for any help. I have no idea how we can afford this. I will be in the coverage gap (donut hole) by May 1st this coming year, which is terrifying. Without this drug, I literally cannot eat anything but small amts. of hot cereal and canned fruit, my hair falls out, and I lose about 4 lbs. per week.

    My current plan, Wellcare Signature, will cover a brand name of slightly lesser dosage for $85 per month, but there is no gap coverage. I found a Cigna Plan 3 that will give me an even weaker (probably too weak) brand name for free up until the gap, but there is no gap coverage and the premiums are double what I pay now, plus the other 7 drugs I take would no longer be free, but would have a $6 per month charge each. I also have a Walgreens family plan card which saves us a lot off all of our drugs. Also, Wellcare has over 22,000 members in my state, while the Cigna Plan 3 has only 815. That made me suspicious.

    I found a Canadian drugstore in British Columbia that will ship me my enzymes for free with no prescription for $104 per month. All other Canadian drugstores want a prescription, which I can get, but it takes longer....generally, about a month to get a prescription filled. I've used them back before Medicare Part D existed. I would have to order in spring and fall only and order a whopping 6 months at a time though, since enzymes are destroyed by both heat (here in Florida) and cold ( in Canada).

    The math involved is simply too much for my brain and there is not much time left. It generally takes a month to get your new insurance card. I only just found out that gap coverage existed last week, after reading an article in AARP Bulletin. I did not even know donut hole coverage existed before I read that.

    SUSHI - how did you get the Medicare.gov site to work? Do you have one of those newer, very wide monitor screens that look like flat screen TVs? I tried Medicare plus 4 other comparison sites and could not make any of them work because part of what I had to click on was beyond the size of my monitor screen (15 inches) and there was no left to right scroll bar on any of the web sites! I wasted tons of time putting in my drugs, only to get nowhere.

    I have a rep from our local Canadian drugstore doing a plan comparison for me, but if he doesn't get back to me soon it will be too late. I am going to call that SHIP number later today. ETA that I called them and they said it will take several days for a volunteer to call me back. There is not that much time left until the deadline to enroll and get a card before Jan.1,2010. I am going to have to call Medicare, which means hours on the phone. I need Valium!

    BTW, Wellcare must be in violation of that new law because I could not find any antiretrovirals or antivirals in their 2010 formulary no matter what I looked under. Maybe my brain is just fried.


    What a mess and one more reason why we need one health care plan for all of us. This is ridiculous.

    klutzo
  6. klutzo

    klutzo Senior Member

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    They're all the same in the end

    I spent almost an hour on the phone with a Medicare rep who was very helpful until we were suddenly cut off by static, but this is the impression I got after she went through many plans with me:

    - If the premium is low, you'll get screwed on the coverage.
    - If the coverage is good, the premium is outrageous.
    - If the coverage and premium are good, the drugs will be "tiered" differently so they cost more per month, require prior approval, or "stepping" where you must try all cheaper drugs first and submit a medically needy form from your doctor, and you will pay much higher copays for them.
    - End result = they are all about the same

    (IME, this is why the so-called free market does not work in medicine. It is to the competitor's profit advantage to stay close to each other in price in order for all of them to maximize their profits. I do not think the word "profit" belongs in medical care anyway...it's obscene. Just my two cents.)

    After all that work, she found a maximum difference of $4.97 per month between the plans that came up as best for me with the 8 drugs I take. This may not be true for everyone, but it was true for me. The plan that was $4.97 cheaper isn't even licensed in my state, so I'd have to use an out of state agent, which makes me nervous regarding customer service. My currrent plan is one of the largest in my state, so I am sticking with it.

    She did give me the assistance phone number for the company that makes my enzymes in brand name form, telling me they could help me during the coverage gap, but they told me they only help those with NO insurance at all, so I would be denied since I have Medicare. They said that I should apply anyway, get my doctor to sign it and then appeal the denial on the grounds of medical need, so I am starting that process now, since it will no doubt take many months.

    klutzo
  7. thefrug

    thefrug

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    I was just referring to anti-retrovirals. By law, all Part D plans must have them on the formulary.
  8. beckster

    beckster

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    medicare useless and uselesser

    Klutzo and Frug, and all,

    year by year i have found that part d has gotten less and less useful. The formularies shrink every year. Last year i found one that coverd my most important and expensive med (no QL), but as soon as i paid them the $300 deductible in January, they stopped allowing it. I called and they said it was always QL, but it wasnt, neither in the computer printout i had in December or even the booklet they mailed me in the following year! I was looking right in the booklet and talking with them on the phone and they were telling me black was white! WE even appealed but to no avail . . . and this is not (relatively) even an expensive drug. If there's one thing more annoying, Klutzo, than allowing them to change formularies during the year its just OUTRIGHT LYING ABOUT EVERYTHING.

    This year i am not even signing up because as soon as i do the company immediately gets $2000 from the government, plus my premiums, deductibles, copays, and then they say NO NO No. My doc says he hears this all the time. If they want a program to help PEOPLE not CORPORATIONS at taxpayer expense then they can set up a fund for X amount of dollars and when the person hits that limit, you hit that limt, no matter which med or which frequency or dosage of med. SIMPLE.

    This year there is only ONE plan in my area that covers my most important med with no QL (of course they'll play the same game the other company did last year) and even so the total of premium and decuctibles and copays (and which only covers HALF the amount of the quantiy of the med i need) still costs me TWICE what it would if i dont use part d and JUST GET IT FROM CANADA. WHAT DOES THIS TELL YOU?

    NOw, hate to break this, as it hasnt been mentioned, but if/when the health reform bill passes the senate and congress you will NOT be able to any longer obtain meds overseas. There is a Dorgan amendment which is under consideration as we speak (possibly a vote in the senate) which would ALLOW us to continue to order meds from overseas. But there is almost no chance it will be allowed to come to a vote, or be passed if voted on. WHAT DOES THIS TELL YOU?

    I ORDERED AS MANY SCRIPTS AS I COULD LAST WEEK . . . . most people have been stocking up

    Also, on the thread about DSM-IV (you can get the link there) i noticed another article in the Psychiatric Times of Dec 9 where it notes that medicare is probably going to eliminate two protected categories for part d, anti-depressants and anti-psychotics. This means the companies wont have to offer all or substantially all the meds in the category, just two meds. WHAT DOES THIS TELL YOU? (The article calls this diminishing medicare by formulary design, diminishing the costs and benefits of course).

    So, the formularies will shrink again. Doesnt matter if that one or two med they offer doesnt work for you, that's all they are required law (this is obviously business, not medicine or science). I WONDER WHEN THEY WILL ELILMLINATE THE PROTECTIVE CATEGORY FOR ANTI-RETROVIRAL???

    Then all they will have to do is offer two of the least effective anti-retrovirals, and no one will be knocking on their door. So profits soar, soar even more . . .

    Of course, pre-XMRV it was mad to think medicare was going to cover all the baby-boomers with HIV now and soon to be on medicare--much less the even greater number of XANDERS.

    I think if there is going to be any coverage once they get the viral assays figured out and then the treatment programs--its going to take a lot of ACTIVISM.

    But then, i forget, you cant do that either. I think it will come as a shock to the boomers, the old activist gang, that if they organize now, they arent organizers or protesters or cultural agents of change. You are now deemed a terrorist. At least that's what i read in the paper today, that's what the Govenor or California is calling the students at the universities there who are protesting the steep tuition hikes. WHAT DOES THIS TELL YOU? I dont understand. I dont understand the cultural apathy, i dont understand why we would let someone of stature tag our sons and daughters with such a connotation.

    I called all my state senators and representatives yesterday to inform and complain about this health care dilemna. Across the board, democrat and republican alike, the person on the phone doesnt have a clue. NOT A CLUE. After i explained that no part d plan covers what i need (of the 5 meds), that its cheaper to order overseas, but that option will probably disappear too and SOON, they follow with a non-sequitor, like "but we're going to close the donut hole." I said "but i dont care if you close the donut-hole because i cant even get into the donut-hole because you dont pay for any medicine i need-- you're just paying the corporations!" And then they breathe and sigh like they are drifting drifting far far away onto another planet . . . .

    And then, while i'm at it here, i thanked all the democrats for the wonderful credit card reform bill, because it too worsened everything. I had 7 percent interest and then it went to 13 and just the other day a notice came it went to 19. I really wish they'd left it alone. One drifting planeteerer said "well we cant fix everything at once" and i said "NO! oh yes you can, either write the law correctly--like to IMMEDIATELY affect all current balances and make retroactive increases illegal or dont write any law at all OR just rename the bill to reflect the reality: credit card company GIFT bill."
  9. klutzo

    klutzo Senior Member

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    Multinational Corporate fascism at work

    Hi Becky,
    Our bought and paid for politicians are not really even closing the donut hole. The bill would pay for half the cost of BRAND name drugs only in the donut hole. This is not designed to help us, since half the cost of the brand could still be more than paying full price for the generic. This is, as usual, designed to help the big pharmaceutial corporations to make more profits off their brand names. And, if the bill passes, none of this takes effect until 2013.

    I applied for a "Tier reduction" for my most expensive drug, which would cut the price in half up until the donut hole, and I know my doctor will sign it. We shall see if they approve it.

    I am also applying to the manufacturer of the drug for help during the donut hole and I got a local Medicare Elder Care agent who will help me fill that out to give me the best chance of approval. I will appeal if I get rejected also.

    Two of my stomach drugs are not covered at all by any of the companies. I was told they are too old, and newer drugs are being used now. Yet another way to aovid paying for generics, even if they are very good ones. I have taken one of these drugs for IBS since 1974. I have not found anything better.

    The health care bill also takes away our right to buy drugs from Canada, not just overseas. Canada is where I was planning to get my drug once I hit the donut hole next year, if I don't get approved for the aid from the manufacturer, which is a long shot. Once again, this is to help maximize the highest prescription prices in the world by far, right here in the good old US of A, a formerly free country that is disappearing so fast that you don't dare blink or you'll miss it.

    Sorry if I sound angry, but I am, so I might as well sound that way :D
    Checking out to calm down now.....

    klutzo
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Beckster & All

    If you get a chance, please take a look at the following article from the New England Journal of Medicine about the failure of Medicare Part D. It seems that several laws were broken while getting this bill passed, including the Chairman of the Commerce committee in negotiations for a huge contract which was clearly a conflict of interest, forcing a quick vote on a huge bill, and other illegal and/or questionable conduct. And yet, as far as I know, no one was prosecuted!! After reading stuff like this, it makes me believe that Part D was passed for the benefit of the insurance and drug industries and not for seniors or the ill.

    You might want to read it on an empty stomach because it frankly makes me want to barf.

    http://content.nejm.org/cgi/content/full/354/22/2314
  11. beckster

    beckster

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    dorgan vote fails, 51-48

    Minutes ago in the senate, the Dorgan amendment, which would allow americans to buy cheaper medicines overseas or in Canada, failed the vote 51-48.

    By the way, Howard Dean has now come out AGAINST the health care reform bill, which he says is no health care reform. He says we should push to kill the senate bill, push for better reform in the house, which would force a RECONCILLIATION bill (house-senate) which only needs 51 (not 60) votes in the senate!!!!!

    I'm contacting my senators and representatives, and you should too, whatever your viewpoint!!!!!!!!
  12. Hysterical Woman

    Hysterical Woman Senior Member

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    Beckster & All

    Hi Beckster,

    What have you decided about signing up or not this year. I am EXTREMELY close to cancelling the company I had last year and not getting any at all. My premiums will almost double at a time when social security disability payments were not increased. Add to that the fact that they paid $2.50 toward a prescription at that was all to the entire year (I obviously didn't take a lot of drugs this past year). The drugs I really wanted the company f to cover were valcyte and valtrex - which they would - but it would still be about $7500 for the prescriptions - something I just can't handle. Coupled with that, I discovered that many of Dr. Lerner's patients who had improved enough to go back to work were having to continue on the drugs longer than the 1 year time frame he had recommended to me. If I were 35 yo I might beg, borrow, sell my house, etc. to get the drugs. At 64 I am not willing to do that.

    And, as you point out, that insurance company was given $2,000 from our government the day I signed up. I don't really want another company that is going to be useless to me receiving $2,000 (is that still the amount)?

    Yeah, I know, we don't know what will happen. A "treatment" could emerge some time during the year and be at a reasonable price with insurance. But I don't seem to be able to find my crystal ball right now, so who knows what will happen for us next? Add to that, if the Dorgan amendment will not allow people to order from overseas, what does that do to people who are ordering immunovir from Canada, Ireland or Italy?

    Gotta make that decision soon, unfortunately.

    Sorry for the rant.

    Words of wisdom anyone?

    Maxine
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Klutzo,

    I just saw this post. Re: the computer screen problem--I also just have a 15 in screen and the whole page shows. Did you trying hitting ctrl and - together? This will make the print smaller and maybe you could see the whole screen.

    I don't know why Wellcare's signature plan (I am looking at that one too) didn't show anti-retrovirals. I plugged in AZT (it has a different generic name) and Isentress and they both showed on the formularies. And yes, it is very confusing and no great deals with that damn donut hole, but I'll probably get Wellcare as there is no deductible and no copay for generics on the plan I am looking at.

    Best wishes with this mess!
    Sushi
  14. klutzo

    klutzo Senior Member

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    Sushi

    Hi Sushi,
    I finally noticed on the front page of what Wellcare sent me for 2010 that they had sent their ABRIDGED Formulary, DOH. Might help if I read things once in awhile! In smaller print it said the Comprehensive Formulary could be found online. I went to it, and it covers a whole bunch of antiretrovirals, but not AZT.

    I am staying with Wellcare for the same reason as you are, and a Medicare agent I called could not find anything better for me. My pancreas problem is rare in people, but common in German Shepards. None of those in my family tree that I know of (grin). However, this should be a concern to CFSers, since Dr. Cheney and Dr. Hyde both say exocrine pancreatic failure is the number three cause of death in CFS patients, and that is what I have. I have never, in all my years on forums, seen anyone else say they've been diagnosed with this, however. Strange.

    I applied for a "Tier Reduction" to get the price of my drug reduced to a lower cost with Wellcare. That would cut the cost in half up to the coverage gap when I'd still be on my own. My GI doc has to sign the form and send it back. Then Wellcare will call him in 72 hrs. with a decision.

    I am also applying to the maker of the drug for help in the gap due to medical need. They are mailing me a form, but said I will be turned down due to being on Medicare, but can appeal. I will appeal, since my only other option, Canadian drugs, was removed for a second time last week by the a**holes in Congress. Obama removed the foreign drug option the first time, only two weeks after taking office after promising that we should get Canadian drugs. The second time was the failed Dorgan amendment to put the foreign option back. Gee, they are so eager to help the little guys who elected them (NOT). Another victory for Big Pharma's bought and paid for representatives. This is not partisan, as I think the other party would have done the same thing. There is no difference anymore.

    I have been with Wellcare since Part D started and have not had problems with them removing things from the formulary in mid year, like the problem Beckster has had in her post above. They changed Armour Thyroid from Tier One to Tier Two, but gave a whole years' notice that they were going to do it and now it's moot anyway, thanks to the FDA, the same jerks who took away my generic pancreas drugs.

    As far as the computer screen problem, which I had with al four Medicare comparison sites I tried, my online search told me that my browser should have provided me with a horizontal scroll bar, but I tried two browsers and neither one did. My computer repair person told me to lower my screen resolution, but even with the resulting tiny print, I still had to scroll back and forth. My gut feeling is it does have to do with the increasing number of people who have those super wide monitor screens. We get email from one friend whose mail has been twice as wide as our screen for about two months now. I wrote to him and asked him, and sure enough, two months ago he bought one of those screens.

    klutzo
  15. beckster

    beckster

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    maxine and all

    Hi maxine and all,

    i'm not signing up this year (which means i have to be sure to exit out of existing one . . .) but cant say for other people. for one i'm happy with another protocol i am on; also doubt if these programs will pay for off-label use. this area seems worse for some things than other areas i read about. dont think there is any provider (doc) around here willing to do this; in this area one would have to wait for the protocols to come out. but your mileage may vary.

    on the other hand i always think it is good when folks are vocal and active and fighting for what they need, so would encourage others to fight for anti-viral if that is what they want. someone in this post had success with this.

    Klutzo, you made an error there. actually, obama when he first got into office basically told customs folks not to enforce the law that was already on the books (from bush days). so the law is actually on the books, just not enforced, hence we HAVE all been getting meds form canada or elsewhere the past year.

    i asked a representative how long until we will no longer be able to get meds overseas or from canada, and they didnt really know, said it could be months or even a year.

    also, as i hear on the radio today, once the main bill gets passed in a couple days, Dorgan is likely to bring up his amendment again, or in reconcilliation, so we are on notice, as always . . . keep your ear to the ground . . .

    klutzo, that's really nasty about the fda pulling the generic enzymes . . . hope you can stock up a bit now with the weather . what was the story about armour, i didnt really follow that one . . .
  16. klutzo

    klutzo Senior Member

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    Enzymes

    Hi Becky,
    Can't stock up on enzymes. Pharmacy told me they gave me all they had. They had no notice at all and have always had to order them for me anyway, since I am the only patient at that large Walgreens who takes them!

    Sorry you can't find a Part D program that will be worth it to you. It's too bad, since if you need to go back on Part D later, you will pay much higher premiums.

    I've been working on corporate taxes all day and my arms hurt, so I will sign off now. That's good news about them not enforcing the Canadian drug thing, at least not yet.

    klutzo
  17. beckster

    beckster

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    klutzo, maxine

    anyone know how much higher if you get out then get back in ???

    Klutzo, i meant stockpiling by getting some from canada while we still can.

    Maxine, how long do you think one has to be on these two anti-virals you mention? Did they give you any idea (I'm asking for other folks who are too sick to be on the computer . . ..

    Thanks, happy holidays to all. And bah-humbug too to whomever/whatever it applies!

    ( Someone gave me a red little winter coat for my small pooch with the green letters "BAH-HUMBUG" on the back. He is totally such a happy, frisky, loving blissfully ignorant creature that seeing him move blithely and blissfully with these letters is such an oxymoron and so humerous it makes me laugh everyday! )
  18. Hysterical Woman

    Hysterical Woman Senior Member

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    Beckster


    Hi Beckster,

    Thanks for responding. I do not know how much to get back in, but I am sure they will punish me for dropping out. At this point I am so annoyed at how bad the system is that it is beyond frustrating.

    I hope that as many people as possible are stockpiling from Canada or elsewhere, especially those on immunovir which if I understand correctly, you can't get at all in the US regardless of cost.

    I was a patient of Dr. Lerner's but haven't been back since I can't afford the meds that he has prescribed. He told me that I would be on them for a year. I considered trying to scrape together the $$ to get them, but I have learned that other patients of his relapse once they get off of them - especially considering my age and how long I have been ill. I am guessing that he told me one year, and I would then go off of them and see what happened. That is assuming that I don't have a major negative reaction to them and couldn't continue. Given that situation, I couldn't see selling my house to get the $$.

    You pooch sounds wonderful!! I am glad that he can make you smile, too - ah the wonders of pets!

    Happy Holidays,

    Maxine
  19. PANDORA

    PANDORA PANDORA

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    Hi There,
    If you have Medicare and Medicaid, it means that you are dual eligible and chances are that your income fits within a range that you will qualify for the special rates (subsidies to cover Medicare Part D), which are less than what someone who has only Medicare would have to pay, and that once you hit the doughnut hole, Medicaid will cover your meds with a small deductible from you. The issue is that if Medicaid also has a formulary as well, therefore there are many meds that they will not cover.

    However if you are covered by your mother's policy and her employer fall under the category of a certain number of employees, then her Aetna insurance would be primary and Medicare secondary. If this is the case, then you don't have to join Medicare Part D, because Medicare is secondary and that you need to tell Medicare that your mother's prescription drug program is better than Medicare Part D. If this is not the case, then the best thing to do would be to join Medicare Part D and you would probably qualify for some subsidy that would help you to pay the monthly payments of the plan you decide to choose for Part D.

    I hope this helps you. There is a web site Medicare Rights Center at http://www.medicarerights.org/ where you can re-verify these issues. I recommend to anyone here on this forum.
    Marly

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