The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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How to work with Medicare when you have ME/CFS ?

Discussion in 'General Treatment' started by Suffering Succotash, Jul 28, 2017.

  1. Suffering Succotash

    Suffering Succotash

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    Please share any thoughts on this.

    I'm disabled, like many ME/CFS patients. I have Medicare (actually Medicare Advantage).

    If you have Medicare, your ME/CFS medications and treatments must be a Medicare approved treatment,
    or you pay out of pocket.

    Sometimes it's tough getting treatments approved. Any thoughts on how to proceed to get helpful treatments paid for?

    My thought is that treatments are sometimes not known for ME/CFS but are known -- and approved for --
    the component illnesses ME/CFS: POTS, exhaustion, immune dysfunction, viral diseases, etc.

    What do *you* think?

    What about bigger guns like Rituximab and Ampligen and antivirals like Valcyte usually used for AIDS?
    How do you get THOSE paid for (or donated by the pharmaceutical companies)?

    Any info appreciated. I'm so sick and my Medicare Advantage HMO is resisting paying for care.
     
  2. Mary

    Mary Senior Member

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    I think your main problem is the Medicare Advantage - HMO - plan you have. I've never come across an HMO doctor who knows anything about ME/CFS. With a Medicare Advantage plan, you are stuck with their list of doctors and the list of doctors is generally very limited. Also, you're stuck with getting approval for treatment from the HMO insurance company, and you can imagine how cooperative they will be.

    With straight Medicare, you don't have to jump through any hoops for insurance companies. This is partly why a single-payer health plan is so valuable.

    Many more doctors take straight Medicare than Medicare Advantage plans, and your odds of finding a doctor who knows anything about ME/CFS or comorbid conditions greatly increase with straight Medicare.

    I saw Dr. Kaufman at Open Medicine Institute about 2 years ago. I had to pay cash for the visits (2), but Medicare paid for 95% of the tests he ordered. I have seen a couple of integrative medicine doctors who took Medicare and again almost all testing has been paid for by Medicare. I actually saw Dr. Chia in Torrance about 4 years ago and he took Medicare, and Medicare also paid for all his testing.

    So I would not go back to a Medicare Advantage plan. To me they're useless as to ME/CFS.

    I do have to pay 20% of the Medicare approved amount for doctor visits with straight Medicare, which I'm willing to do. And there aren't that many doctor visits anyways because no one can really do anything for me. But Medicare has been very good about paying for testing, and they pay 100% for lab work.

    I just did a brief search for Valcyte and Medicare and it is covered by Medicare, but you have to have a doctor who is working with you and not be fighting with an insurance company, which just wants to maximize profits.
     
    Rooney, zzz and bspg like this.
  3. Sushi

    Sushi Senior Member Albuquerque

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    I don't have to have anything approved, but then I have plain government Medicare--not an Advantage plan.
    I've never had to have anything approved--it automatically goes through unless I have to apply for pre-approval for a drug--but my diagnosis has never come into question.
    Why don't you switch to a government Medicare plan, also get a supplemental and a Part D or drug plan?
    Agree.
    Nope, I've never been questioned about anything.
     
    TrixieStix and Mary like this.
  4. Suffering Succotash

    Suffering Succotash

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    Some very good ideas here. I'm grateful for the responses.

    Which ME/CFS physicians take Medicare? Any?

    Kogelnik, Kaufman, etc in the Bay Area.

    Montoya takes Medicare but he's a disaster. Never in the office and elusive.
     
  5. Mary

    Mary Senior Member

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    The best way to find out is to call the office you're interested in and just ask. When I saw Dr. Kaufman at OMI 2 years ago, he did not take Medicare, so I paid cash for the visit, but Medicare did pay for his testing. I don't know his policies now.
     
  6. Suffering Succotash

    Suffering Succotash

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    Thanks, Mary.
     
  7. Suffering Succotash

    Suffering Succotash

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    Thanks for the feedback and insight, everybody.

    A senior Medicare analyst did an analysis of which plan in my area was best, and because of my very high prescription cost, the Medicare Advantage plan won out by thousands of dollars.

    I'll try to do another analysis soon.
     
  8. TrixieStix

    TrixieStix Senior Member

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    I am on plain ol' Medicare and I have rarely come upon a doctor/clinic that does not accept it. Unfortunately there are only a couple ME/CFS specialists in the US to begin with and not all accept insurance so choices are extremely limited. One place that does accept insurance is the Bateman Horne Center but they are not accepting new patients. I was put on their "waiting list" a year ago and even with their recent move to bigger offices they recently sent out an email saying they are still not accepting any new patients and made it seem like that would not change anytime soon.

    It's possible Dr. Nancy Klimas accepts Medicare, but I'm not sure about that.

    I ended choosing to pay cash and travel out-of-state to see Dr. Chheda (formerly of Open Medicine Clinic) and like the others said above, while the office visits/phone apps and some specialty tests are cash only (or credit card) all my blood work was covered by Medicare. For me I didn't go to her expecting any life changing treatments, but instead went seeking an official diagnosis (make double sure something else besides ME/CFS wasn't being missed) and maybe some recommendations for medications to help with a few symptoms.
     
  9. Mary

    Mary Senior Member

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    I think a re-analysis would probably be a very good thing for you to do. In general, the Medicare Advantage (HMO) plans have less coverage than straight Medicare. A plan may have a zero copay for doctor visits but the insurance companies make it up elsewhere by lowering coverage in other areas. I did my own comparison once and this is what I found.

    I'm not a Medicare expert; however, I find it hard to believe that a Medicare HMO plan, which in general has inferior coverage to straight Medicare, has better prescription coverage than a Part D prescription drug plan which you can purchase separately. The Part D plans run the gamut from very cheap to not so cheap. I have a very cheap plan ($17 a month) because I take almost no prescription drugs.

    Now would probably a good time to do the reanalysis so that if you wanted to make a change, you could do so during the open enrollment period which usually starts in November I think.
     
  10. Suffering Succotash

    Suffering Succotash

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    Thank you for your input. The difference in price between regular Medicare and a Medicare Advantage plan was $16,000. Trouble is, the Medicare Advantage plan fights MECFS patients every step of the way in obtaining coverage. It's hell. The illness is bad enough; fighting for care makes every day that much harder.
     
  11. Mary

    Mary Senior Member

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    I'm not trying to argue with you here, but I'm very confused as to what this $16,000 difference could be. Are you saying you would pay $16,000 more for prescription drugs with a Medicare HMO plan than with one of the Part D prescription drug plans you can buy?

    Which Medicare HMO plan has such great drug coverage? I'm just very skeptical about these figures. I find it next to impossible to believe that you can't get a separate Part D prescription drug plan that is the equal of or more likely better than an HMO drug benefit.
     

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