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John B

Which Medicare Insurance to Choose?

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I am wondering if anyone has input on this issue.  My wife has not been diagnosed (not for lack of trying) but has symptoms similar to Parkinson's and also some possible dementia.  She will turn 65 in a couple of months and we have a one-time open enrollment and can choose any insurance plan to go with her medicare without questions.

The way I see it, we could choose a comprehensive supplement such as plan F or a Medicare Advantage plan.  She can have a MA plan from her former employer that looks pretty good.  It is a plan I know because I am already on it.  The MA network is not restrictive at all and out of pocket is $3500, about as low as I have seen.  My only concern is over tests or procedures that might be required that they might not approve, whereas the plan F would approve anything allowed by Medicare.  I think these would have to be pretty special procedures, beyond normal imaging and other things that have become routine.

So what say you?  Are there any procedures that may be common in PD or dementia that would possibly raise a flag with an insurance company?  Any experiences good or bad with either type of plan?

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OK, I hear that sometimes,  but I want specifics.  If you or someone has had a problem, I want to hear.  What specifically have you been denied?

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I prefer regular Medicare plus a supplement plan as well. When I was on the United Healthcare Medicare Advantage Plan, I could not get the walker recommended by my PT as best for PD  because I was forced to use a UHC network provider. I could not be treated at the University of Washington because they were not a preferred provider under the UHC plan. Without regular Medicare Part B and my supplement, Washington State Apple Healthcare, my Duopa would not be covered at 100%. 
 

I've been to conferences about PD where various Medicare Plus plans have representatives tell me that if I have regular Medicare and Apple Health, they can offer me a better deal. I show them my Duopa pump and tell them that this one medication costs >$6000 per month. Suddenly they are no longer interested in getting me to switch.

   
Once you choose a plan, you can only change during the open enrollment period once a year. Choose carefully.

I have been getting emails asking me to write to my US Senators and my Congressional representative to ensure that any new health care plan includes Medicare Advantage Plans. It seems these plans may be in jeopardy.

Once your wife has a confirmed diagnosis, some plans might be able to deny her coverage. In this volatile time for insurance and the healthcare industry, I prefer to stick with as solid a plan as possible.

Dianne 

 

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Thank you, Dianne,

This is helpful and gives me much food for thought.  In our case, the network part isn't a problem as this is a group MA plan and pays the same in or out of network.  I understand that the commercial UHC MA plan is not accepted by one of our local hospitals, but the group MA plans are accepted (I have tested this).  I will have to ask questions of my pharmacy about Duopa.  That part would not be covered under a Plan F anyway but would be under the separate drug plan I would have to get with the supplement.

The deny of coverage is something I had wondered about but was not sure how that would apply to PD patients.  What are the expensive items they might be concerned about with PD?

Thanks for your input.

John

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John, to clarify, the Duopa pump, and the cassettes with the intestinal carbidopa/levodopa gel are billed under Medicare Part B, as Durable Medical Equipment. They are only available from two specialty pharmacies in the US. The likelihood of your wife needing Duopa is some years in the future. 

One test your wife might need in order to confirm a diagnosis of PD is a Datscan. Medicare paid for mine (in 2013, it cost ~ $11K at the County Hospital. At the University of Washington Medical Center, it would have cost $15K). Others in the Forum have had difficulty getting it approved by their insurance companies.If you search the Forum for DAT or Datscan, you may find posts that mention this.

Dianne 

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Thanks for clarifying that Duopa is Medicare B.  Yes, years in the future.  Good to know.

We actually tried to get a Datscan back before she became totally discouraged with search for a diagnosis.  They wanted to do one at Kirkland Center in Birmingham and were trying to get it set up, but they are so compartmentalized/organized/disorganized as to be ineffective and non-responsive (good neurologists, I think, but bad organization).  Shortly after that experience her neurologist at Vanderbilt told me that Datscan carried a high probability of false positive.  He said basically that we likely would not know anything more if we were able to get the test.  I am sorry we did not pursue it more at the time.  Puzzle pieces are hard to come by on the "undiagnosed" bench.  But her mental health was suffering from the build up/disappointment cycles and we had to just stop looking   Ten neurologists should be enough!  And here I have taken my own thread off topic!

Thanks for your input on this.  It helps and anything additional you or anyone else can think of is welcome!

John

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3 hours ago, John B said:

Shortly after that experience her neurologist at Vanderbilt told me that Datscan carried a high probability of false positive.  He said basically that we likely would not know anything more if we were able to get the test. 

Really? Well, that sounds suspect?

-S

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My MDS used Datscan to confirm diagnosis after evaluating me using other protocols. Great tool in diagnosis. 

Since  I will be on Medicare (with Military Tricare secondary) at the end of the year I too am researching what is covered and not covered by both plans. Anyone in forum land have a similar setup who has any advice? 

Edited by Dancing Bear

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6 hours ago, Superdecooper said:

Really? Well, that sounds suspect?

-S

This comment sounds rather offhand to me.  I don't really know what to make of it.  Keep in mind that I am a newbie.  I appreciate your input but could you be a little more direct?  I would like to learn something from your knowledge.

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5 hours ago, Dancing Bear said:

My MDS used Datscan to confirm diagnosis after evaluating me using other protocols. Great tool in diagnosis. 

Glad to know you got some good use out of Datscan.  If I read this correctly, this was not the primary diagnosis method.  Might I ask what was primary?  You can say no if I am asking too much.  Thanks for your input.

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Hi John B,

To diagnose PD,  I think an MDS takes your medical history and then uses a combination of a physical exam, possibly a Sinemet medicine challenge (to see if PD meds work on you) and if necessary, a Datscan to determine if your symptoms are from essential tremor or parkinsonism.

False positive results from Datscans are pretty rare, I've been told by at least one doctor. But other doctors may disagree and use their own judgement and prejudices to determine what they believe Datscan results mean. Hence, lots of patients get second opinions when trying to figure out Parkinson's Disease.

It's pretty confusing being a patient especially when dealing with an illness of the brain.  Worrying about PD symptoms can sometimes make those symptoms show up in your body -  and then you expect doctors to figure out if those symptoms are real. 

-S

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1 hour ago, Superdecooper said:

Hi John B,

To diagnose PD,  I think an MDS takes your medical history and then uses a combination of a physical exam, possibly a Sinemet medicine challenge (to see if PD meds work on you) and if necessary, a Datscan to determine if your symptoms are from essential tremor or parkinsonism.

False positive results from Datscans are pretty rare, I've been told by at least one doctor. But other doctors may disagree and use their own judgement and prejudices to determine what they believe Datscan results mean. Hence, lots of patients get second opinions when trying to figure out Parkinson's Disease.

It's pretty confusing being a patient especially when dealing with an illness of the brain.  Worrying about PD symptoms can sometimes make those symptoms show up in your body -  and then you expect doctors to figure out if those symptoms are real. 

-S

I think you are spot on about PD vs essential tremor with the DAT scan. 

My dr gave me one to confirm. 

 

LAD

 

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One thing to check is how well the Medicare Supplement will cover PT , OT, and Speech Therapy which is so important for people with Parkinson's. Medicare rules recently changed and removed the "cap" on therapy services but I am anxious to see what this means. I am still working and my husband has insurance through my employer with excellent PT and OT/Speech coverage (up to 60 visits a year for each, until January 1 only $15/session, now is $40/session but still only the cap of the 60 visits per year for those services).

When I retire I have the option of a Medicare Supplement Plan with a much lower cost per month or the Retiree Supplement Plan (for people with Medicare) at a MUCH HIGHER monthly premium. I had some difficulty finding out the difference between the two but with much "back and forth" and detailed explanations, I learned that the Medicare Supplement Plan available to me follows Medicare rules for approving services (which with the therapy caps was a little under $2,000/year for PT/OT/Speech). The "Retiree" Plan follows the same rules as are in effect for employees so will be identical to what we have now (up to 60 visits a year for each service-PT and OT/Speech). 

Recently, my husband completed aqua therapy for back pain (yes, it helped!) but the bills were for more than $1,000 per session (we had just the $15 co-pays). We plan to go with the more expensive premiums to keep our access to PT/OT/Speech services. With Medicare removing the caps, this may not be needed but I am worried about how easily we will get approvals for the PT, OT, and Speech therapies or what we might end up paying out-of-pocket (I don't want to have to go back to work after I retire!). He has never hit the 60 visit cap but there have been times he's probably had 40+ sessions (the year he did BIG and LVST, for example). 

Friends are advising me to go with the lower monthly cost and pay out-of-pocket for what might be needed, I tell them, you don't have anyone with Parkinson's in your family, it just seems to be too big of risk for me. Looking at the current drug formulary is really important too. Make sure the drugs she needs will be on one of the lower "tiers". 

My mother who is 93 and my mother-in-law who is 87 both have Plan F Supplements and the coverage has been excellent. They both have health problems and have needed some PT but all has been covered. Neither have Parkinson's. 

A good resource is your state's "SHIP" program. Every state has one and they have helped us with learning about selecting coverage for family members in different states. https://www.medicare.gov/contacts/#resources/ships

Edited by Golden01

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On 2/20/2018 at 12:11 PM, John B said:

Glad to know you got some good use out of Datscan.  If I read this correctly, this was not the primary diagnosis method.  Might I ask what was primary?  You can say no if I am asking too much.  Thanks for your input.

My MDS uses the UPDRS  Scale (Unified PD Rating Scale).  If you google it you can see all the evaluation items that get scored and go into it.  This is different than the Stage 1,2,3, 4 scale/criteria.  The MDS observes your performance over a range of  physical tasks (toe tapping, grip strength, finger tapping etc) and there is a battery of questions relating to depression, cognition, recent falls, balance issues etc.

 

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Thanks for your response.

I think you are talking movement disorder specialist...  I looked at the list and she definitely would score more than zero on some of the items.  At least 2 of the 10 neurologists she saw would present themselves as MDS.  They and many of the neurologists gave her tests and interviews like this.  All concluded she did not have PD.  BUT that was 2.5 years ago for the last MDS and 2 years for the last neurologist.  Things have changed a little since then.  I know I need to get her to another MDS on a regular basis but am not up to the fight that will result.  She is NOT a good "patient" and does not want to go to doctors or even take medicine.  But she does keep the appointments already on the books and she does take her medicine and the Sinemet does help, I think.  She surprised me this week and insisted she drive on a 5 mile trip to a fun event.  She did fine.  It had been 3.5 years since she last agreed to drive!  I think it gave her a boost and I know it did for me.

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