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Medicare/Medicaid (Read 16271 times)
LisaH
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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Medicare/Medicaid
Aug 31st, 2005 at 4:16pm
 
Hi all,

As some of you do, I had Medicaid, which turned into Medicare after a certain amount of time. The problem with Medicare (this country's idea of insurance for the elderly and disabled Undecided) is that they do not pay for bypass surgeries. They (Medicare) do not believe that surgery is a viable solution to MM.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1...
Medicare program; withdrawal of coverage of extracranial-intracranial arterial bypass surgery for the treatment or prevention of stroke--HCFA. Final notice.

[No authors listed]

This notice announces the withdrawal of Medicare coverage of extracranial-intracranial (EC-IC) arterial bypass surgery when used to treat or prevent ischemic cerebrovascular disease of the carotid or middle cerebral arteries. Available evidence does not show that this surgery is effective.

PMID: 10110282 [PubMed - indexed for MEDLINE]


This leaves many in quite a fix (including myself). It's my mission now to try and change Medicare's thinking on this issue. In my research I found that there is a wonderful study now being done called "Carotid Occlusion Surgery Study", with many hospitals participating (http://www.cosstrial.org/coss/pccs.asp). It's a great study BUT one of their EXCLUSIONS for the study is Moyamoya disease. I've wrote to them to find out exactly why but regardless of that, it addresses a good issue. Here is a link to the study in general http://www.aans.org/library/Article.aspx?ArticleId=21861 If you go to the bottom of the page there is a link to a bigger website where they address the issue of EC/IC surgery not being considered a viable solution to occluded arteries/stroke which Medicare has based it's decision on.
Background and Significance


Approximately 730,000 first-ever or recurrent strokes occur each year in the United States. Ten to fifteen per cent of patients presenting with carotid territory stroke or transient ischemic attacks (TIA) are found to have carotid occlusion. This results in an estimated 61,000 first ever strokes and 19,000 TIAs per year in the United States that are associated with carotid occlusion. Prevention of subsequent stroke in patients with carotid artery occlusion remains a difficult challenge. The overall rate of subsequent stroke is 7% per year for all stroke and 5.9% per year for ischemic stroke ipsilateral to the occluded carotid artery (Cerebrovasc Dis 1991;1:245-256). These risks persist in the face of platelet inhibitory drugs and anticoagulants (JAMA 1998; 280:1055-1060).

The technique of extracranial-intracranial (EC/IC) arterial bypass surgery was developed in the late 1960s and applied to patients with carotid occlusion in an attempt to prevent subsequent stroke by improving the hemodynamic status of the cerebral circulation distal to the occluded vessel. In 1977, an international multicenter randomized trial was begun to determine the efficacy of EC/IC bypass for the prevention of subsequent stroke (N Engl J Med 1985;313:1191-1200). Among 808 patients with symptomatic carotid occlusion who were randomized, no benefit of the surgery could be demonstrated. Based on the results of this well-conducted trial, EC/IC bypass was generally abandoned as a treatment for symptomatic carotid artery occlusion. This trial has, however, been criticized for failing to identify and separately analyze the subgroup of patients with hemodynamic compromise in whom surgical revascularization might be more beneficial. Unfortunately, at the time that this trial was conducted, there was no reliable and proven method for identifying a subgroup of patients in whom cerebral hemodynamic factors were of primary importance in causing subsequent stroke.

Modern neuroimaging techniques have now made it possible to evaluate cerebral hemodynamics in patients with carotid occlusion. Two prospective natural history studies have demonstrated that patients with symptomatic carotid artery disease who have increased oxygen extraction fraction (OEF) measured by PET have a high rate of subsequent stroke within the next two years if maintained on medical therapy. Depending on the precise clinical and PET criteria used, the two-year ipsilateral stroke rates ranged from .26 to .57 (JAMA 1998; 280:1055-1060; Radiology 1999; 212:499-506, J Nucl Med 1999; 40:1992-1998 In contrast, the comparable stroke rates in the patients with normal OEF were .05 to .15, corresponding to absolute rate reductions of .21 to .42 and relative rate reductions of 75 to 80%. EC/IC bypass has been shown to return areas of increased OEF to normal in patients with carotid occlusion, but its effect on the subsequent risk of stroke in these patients is unknown. If the subsequent risk of stroke in patients with symptomatic carotid occlusion and ipsilateral increased OEF who undergo EC/IC bypass is the same as those in whom OEF was normal to start with, then surgery has the potential to produce an absolute rate reduction of .13 to .33 and a relative rate reduction of 40-50% in the subsequent occurrence of stroke within two years in these patients, even taking into account the peri-operative risk of 12.2% found in the EC/IC Bypass Trial. It is appropriate at this time to perform a new trial of EC/IC bypass surgery restricted to patients with symptomatic carotid occlusion and increased OEF identified by PET.


I find it absolutely ridiculous that Medicare won't cover the surgeries that we MM patients desperately need. Not sure exactly yet what to do about it but I'm trying. Undecided I'm wondering if any of you know anybody that works closely with Medicare in any capacity; if they would have any suggestions on how to change this. I'm also thinking of getting many (hopefully hundreds) of letters from neurosurgeons and bypass surgery patients, toting the absolute necessity of bypass surgery and presenting it to Medicare (in addition to some important governmental people such as US senators etc.). Does anyone think that might work? Or am I just wasting my time?

Thanks for any suggestion you might have.
Lisa
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« Last Edit: Sep 1st, 2005 at 4:01pm by LisaH »  

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Lore
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has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Medicare/Medicaid
Reply #1 - Aug 31st, 2005 at 10:18pm
 
Hi Lisa,

Bypass surgery went by the wayside because most of the patients receiving bypass surgery were in their 80's.

It's encouraging to see much newer statistics. Also, bypass procedures have been perfected over time by MM experts.

I believe they should look at Dr. Steinberg and Dr. Scott's track records or at least consider them as well as the other nuerosurgeons listed on this web site that have had good success rates. How can Medicare argue that?

In one of the newspaper articles on this web site (letter to the editor) I believe a VA doctor did his own study on bypass and MM.  Maybe someone will remember where the article is located.

You can write your congressman because he/she has to respond.  That may also be the individual to lead you to the appropriate person at Medicare to address the issue.  I find it odd that Medicaid pays for the bypass surgery yet Medicare does not especially since they are both federal programs.

Keep us posted on your findings.  I'm sure there are other MM patients on Medicare as well and would welcome the opportunity to receive lifesaving treatment. 

I wonder if Medicare ever pays for bypass surgery such as in a emergency?  What is Medicare's alternative to bypass surgery?

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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cubbie
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2005

Posts: 168
Delaware, USA, usa, 418, 133, OH, Ohio
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Re: Medicare/Medicaid
Reply #2 - Sep 1st, 2005 at 8:41am
 
Hi Lisa

Nothing Ventured,Nothing Gained!
Sorry a cliche is all I could add at this time.
Starting at US Congress is a good idea.
They have to respond.
Smiley

Kevin
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Kevin Allen- I was so much older than,I am younger than that now,The Byrds,My Back Pages
 
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Seachelles
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Posts: 681
Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female
Re: Medicare/Medicaid
Reply #3 - Sep 1st, 2005 at 11:19am
 
Hi Lisa,

I would strongly reccommend that you start with your US Senators and Representatives in the House.  Working in such close proximity to DC and the Capitol Building, I know that these people pay attention.  I think it would also be a great idea to get letters from Dr. Steinberg and Dr. Scott (along with other doctors that deal with bypass surgeries). 

Also, you might be interested to know about the NORD Conference that is coming up Sept. 30th - Oct. 2nd.  I've included their description of the conference below.  Hope this helps.

NORD's Conference brings together patients, researchers, medical professionals, support group leaders, family members and others who want to know the latest about rare diseases. This event is co-sponsored by the National Institutes of Health, and NIH researchers are among the speakers. In addition, there are workshops led by teachers, psychologists and others who can address quality-of-life issues. There is also a separate, but parallel, series of workshops for support group leaders.

The 2005 NORD Annual Conference will be held Sept. 30 to Oct. 2 at the Hilton Crystal City at Ronald Reagan National Airport in Arlington, VA. An optional Capitol Hill visit is scheduled for Sept. 29.

The theme will be Access to Medical Care: Navigating Medicare, Medicaid, & Private Insurance. General sessions will focus on issues related to medical coverage and access to care. There will be two tiers of workshops, one for patients and family members and one for leaders of patient organizations.

For information, watch this Web site or contact Donna Bolton in NORD's Development Office at (203) 744-0100 or dbolton@rarediseases.org. Hotel reservations may by made at (800) 695-7551. Mention the NORD Conference to get a special rate of $129 plux tax per night.


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Michelle
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LisaH
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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Re: Medicare/Medicaid
Reply #4 - Sep 1st, 2005 at 3:58pm
 
Thank you for your responses.  I've been a busy beaver the past few days and found out quite a few things, most importantly that there are a few Moyamoya research studies pending.  This is good for all of us suffering from MM but also may finally prove to Medicare that bypass surgeries for MM is the only option.

I just heard back from one doctor in St. Louis MO who has a MM research grant pending from NIH and I offered the support of MM.com.  Here is his reply:

Thanks! I will forward your email to the grant officer at the NIH that is shepherding my application. I don't know if there is any role for advocacy at this point, but she would know.

I agree that moyamoya is not rare. I have followed a group of 45 patients over the last nine years here in St. Louis. We are submitting a paper on this group now. We made some interesting findings. One is that there appears to be active phase of disease for a few years and that stroke after that period is rare - that should be reassuring to people that are several years out from diagnosis and treatment. Another is that if the disease is only in one hemisphere (by angio), development of disease in the other hemisphere is rare (we didn't see any in 19 people with unilateral disease). Finally, we found a very high risk for stroke in those first few years after diagnosis and some suggestion (not statistically significant) that surgery may help.

I am hoping to learn alot more about ways to predict which patients are at risk for future stroke, and gain more information on the usefulness of surgery. Clearly we have a long way to go.

I know Dr. MacDonald well and you are in good hands.



Quote:
I wonder if Medicare ever pays for bypass surgery such as in a emergency?  What is Medicare's alternative to bypass surgery?


Lore- Medicare refuses to cover bypass surgery even in an emergency.  Their alternative is to treat MM (or any carotid occlusion) with medicines such as blood thinners, aspirin etc.   Basically they just believe that bypass surgeries don't help so why bother trying and paying for that.  As for why Medicaid approves the surgery and Medicare doesn't- well, I can't quite figure that one out myself! Undecided  All I know is thank goodness that they do or Kevin, myself and scores of others would have been up a creek!

Kevin- when did you start on Medicaid?  Has your time for Medicare to take over started yet?

As for contacting congressmen, I had the honor to meet with U.S. Senator Barack Obama about 2 1/2 years ago.  He is VERY involved with health care issues in this country.  Unfortunately, at the time, I had no idea that Medicare did not cover the surgeries for MM.  I intend to contact him again asap.  It wasn't until I was at Stanford that I found out about Medicare's stance on the surgeries.  I can't believe how many people are out of luck simply because they have Medicare!  They then have to pay for the surgery out of pocket and how many people are able to do that?  I also have a friend that is a state senator that has been of help to me in the past (getting Medicaid) but unfortunately he is leaving his post for bigger pastures.

The way I figure it is that with more research being done on MM (and it is being researched A LOT more!) eventually Medicare will have to change it's stance.  Unfortunately that could take years and patience has never been my best virtue! Wink  I think I will try to write letters and I will probably, in the very near future, ask for help on this board for letters from both patients who have had their live saved from bypass surgeries and the surgeons who performed the surgeries.  All I know is that since my Medicaid switched to Medicare, if I needed to have another bypass surgery tomorrow I'll be up $*@&'s creek! Cry

Thanks again!
Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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LisaH
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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Re: Medicare/Medicaid
Reply #5 - Sep 1st, 2005 at 5:21pm
 
Quote:
The 2005 NORD Annual Conference will be held Sept. 30 to Oct. 2 at the Hilton Crystal City at Ronald Reagan National Airport in Arlington, VA. An optional Capitol Hill visit is scheduled for Sept. 29.

The theme will be Access to Medical Care: Navigating Medicare, Medicaid, & Private Insurance. General sessions will focus on issues related to medical coverage and access to care. There will be two tiers of workshops, one for patients and family members and one for leaders of patient organizations.


Michelle- what I wouldn't give to get to that!! Smiley  Unfortunately I will already be out of town during those dates.  Anybody on this board in that area thinking of going? Is there anyway to get a video or transcript or whatever they do at these things?  Darn it , I wish I could go! Smiley

Thanks anyway Michelle,
Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Seachelles
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Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female
Re: Medicare/Medicaid
Reply #6 - Sep 1st, 2005 at 5:51pm
 
Lisa,

I actually live in that area and would be willing to work with you in getting information to and from that conference.  Let me look into more details about the conference.  I actually received a brochure from that just recently and set it aside.  I will look more at it over the weekend while I'm basking in the sun at the beach.   ;Grin

Seriously though, I am more than willing to attend the conference.  I will just need some help on what I should do and the things I should discuss there if given the opportunity.  All those that are willing to help, lay it on me.  Smiley 

I will make a seperate post over the weekend and will see if we can get some stuff together. 

Michelle
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Michelle
Chelles4U Chelles4U  
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Medicare/Medicaid
Reply #7 - Sep 1st, 2005 at 11:33pm
 
Hi Lisa,

I should let you know I had a tough time getting Kevin's surgeries covered.  I fought like a mad dog.  Smiley  I contacted my congressman who got his staff attorney involved.  I then contacted the Ohio CiviL Rights Commissiion who also got an attorney involved.  The problem is getting a state rep or a US Senator who will take up your cause and if they do, the time it will take to get something like this through is excruciating.  It is a lot of work.  I know from personal experience.  The good thing is you know some high ranking state and federal officials who may be able to help fight through the "red" tape.

I am not proud of how I had to go about getting Kevin to Stanford.  I simply went balistic and over the edge.  At one point I demanded names, addresses and phone numbers of the decision makers.  When they asked why I informed them I needed to know who to tell the police to arrest for murder when Kevin died. Smiley  It was awful! Smiley Desperate people sometimes do desparate things and I was desperate as Kevin was getting worse by the minute.  But, I got people's attention and Kevin was soon on his way to Stanford.  Perhaps they thought I was just a crazy person or that I was actually serious. Smiley I don't know and really don't care.  Regardless, I accomplished what I set out to do which was to get Kevin treated immediately. I even wrote Dr. Bernadette Healy as she was commissioned by the governor of the State of Ohio to reform Medicaid.  She did not answer. Imagine that!  Smiley I think the attitude of many is people who are uninsurable and on Medicare/Medicaid (which, by the way, is suppose to be a safety net) think Medicaid/Medicare recipients want the best treatment money can buy at someone else's expense.  Smiley Forget the fact Kevin and most of the rest of these folks worked all their life and paid into both programs. Kevin paid dearly to both programs as he owned a business and employed others.  Kevin's private insurance went "belly up" and at that point, Kevin had had a stroke and had been operated on for a dissected right upper internal carotid artery.  His private insurance company went belly up in the middle of his treatment!  He was uninsurable at that point.  The State of Florida (where he lived at the time, took over the insolvent insurance company) and paid for Kevin's treatment.  Kevin then exhausted his own funds on medical treatment and drugs while we looked for insurance.  I couldn't even get him catastrophic coverage as he was already considered catastrophic.  He is awaiting SSD and Medicare will follow.  He should know any day now.

I am willing to help in anyway I can.  However, after my last bout with the local officials, I know they were glad to see me go away. For all I know, I could be "black balled" from ever getting any more state and federal officials to help. I'm certain I am their worst nightmare. Smiley  This is very political and in a time when budget constraints are so great. That's why Kevin started the post on patient resources...to help others to not go through what we went through. I don't want to discourage you because your heart is in the right place. I know there are many who are in the same boat as you and Kevin and would be greatful to you for anything you can accomplish with this monster.  It sounds like you have done a lot of research already and have come across some great support.

Kevin received an invitation to the NORDS conference.  Unfortunately, Kevin is unable to attend due to the fact he still has some difficulty with abstract thinking as a result of his stroke. He is still in speech therapy. I would need to accompany him and I work fulltime and have taken all my time except what I have reserved to take Kevin back to Stanford in November for follow-up.  If Michelle can go or perhaps one of us can get a tape or transcript that would at least help. 

Like I said, I will assist with writing or whatever you feel you need help with.  Just let me know where you think I might be of the most help.  If it is calling these people "everything but a child of God" well, I am good at that! LOL.  Smiley

Keep me posted on your findings and progress and let me know how I can help.

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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LisaH
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Be thankful in all circumstances

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Re: Medicare/Medicaid
Reply #8 - Sep 2nd, 2005 at 1:38am
 
Lore,

Kevin and I share a lot in common on our journey to get help for this disease.  I was "dumped" by my insurance the minute I even started getting sick.  Being self-employed sure has it's benefits but health care coverage is not one of them!  One of the things I remember most about meeting with Sen. Obama was his statement that "every single person in this country is one medical condition away from bankruptcy".   Thank God that Kevin has you in his corner fighting for him! Smiley

I went to Stanford twice for consultation (all out of pocket tests etc.) but ultimately had to stay in state for my surgeries.  When I got Medicare I initially thought "yahoo, now I can go anywhere (aka Stanford) for my next surgery" until I found out that Medicare basically stinks!  lol  Oh well, all turned out in the end but it still galls me and it's just not right!

It took me almost a year to get Medicaid and that was only after I had newspaper articles written about my situation and ultimately hired a disability lawyer.

Quote:
When they asked why I informed them I needed to know who to tell the police to arrest for murder when Kevin died.

I LOVE THIS!  You go girl! Smiley  I definitely would want you in my corner!

Thank you for all your help and concern.  Together, I believe, we can make a difference for future sufferers of MM.
Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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LisaH
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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female
Re: Medicare/Medicaid
Reply #9 - Sep 2nd, 2005 at 1:44am
 
Michelle,

That would be awesome if you could get to that conference!  I hate to ask you to do that though. Undecided  Let's both think about this and figure out all the details.  I am trying to figure out if I can change my schedule and get there myself although, with the gas prices going up I'll betcha airfare will be insane.   

You think about it this weeked while on the beach and I'll think about it while at the horsetrack, deal?   Smiley

Thanks so much for offering to do this.  It could mean a lot to a lot of future MMers in financial predicaments.

Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Seachelles
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Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female
Re: Medicare/Medicaid
Reply #10 - Sep 28th, 2005 at 11:06am
 
Lisa,

Just wanted to let you know that I am going to the NORD Conference this weekend, but only on Saturday.  I will be attending 2 sessions.  They are:
  • Who Will Listen to My Story? Getting the Attention of the Media.  Individuals and families are looking for ways to bring awareness to their disease through media contacts.  How do you create the hook? Seasoned media experts will explain the maze of publicity resources. 

  • Choosing Healthcare Plans for Medicare Part D.  An insurance representative will assist individuals with how to make the best decision for their health care needs.
  Lisa, if there is anything that you want me to find out while I am there, please send me an email or a PM.  My email address is Chelles4U@aol.com.  Or if anyone else has something they want me to check on, I'd be happy to do anything I can.   

I will also be attending a panel discussion on Reasons Why Medicaid and Medicare are Important to You and a general session titled Private Health Insurance and Rare Disease. 

Michelle

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Michelle
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Lore
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My brother Kevin (Cubbie)
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Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: Medicare/Medicaid
Reply #11 - Sep 29th, 2005 at 10:38am
 
Michelle,

How sweet of you to attned the NORDS conference. I'm interested in the Media and getting the word out about moyamoya.

The Medicare Part D is the new drug benefit for Medicare. For those on Medicare, this will be real important in terms of them making the appropriate choice.

The only question I have is why are there differences in what  Medicaid and Medicare cover and don't cover like brain bypass surgery?  Medicaid covers it and Medicare doesn't.  Why, since both are federal programs are they different when it comes to medical procedures covered and not covered?  They should be uniform.  It can't be an "age" thing since there are young and old on Medicare and Medicaid.

Again,

Thanks for attending the conference.

Hugs,

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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LisaH
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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: Medicare/Medicaid
Reply #12 - Oct 4th, 2005 at 1:10pm
 
Michelle,

So how did it go?  Learn anything new to help us (and future MMers) out?   

I'm sorry that I couldn't answer you sooner.  I have been out of town working and didn't see your post until now.  Regretfully, I'm sure I could have come up with a ton of questions for you.  Oh well! Undecided   I tried to get there myself but the hotel costs turned out to be prohibitive of that happening.

As it so happens, I have just found out that they dropped my Medicaid (without warning) because I "have too many assets"- so they say! Smiley    I've been spending the last week or so trying to prove to them that this is not true, that somewhere along the line someone made a big mistake.  The actual number in assets they came up with was so incredibly ridiculous I laughed at them!  I WISH I had all the money they claim I have! Smiley  Just another example of the fun games that both Medicaid and Medicare like to play and how difficult it is for the average Joe to obtain, and then keep, the help they need so badly. 

Anyway, thanks so much for taking the time to go to the NORD conference and I look forward to hearing about anything you learned.  Also, do you happen to know if next years conference will have anything to do with these topics also or do they change "themes" totally every year?

Lisa
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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost
 
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Re: Medicare/Medicaid
Reply #13 - Oct 5th, 2005 at 10:18am
 
Lisa,

Unfortunately, I didn't learn much about medicaid/medicare while I was there.  I was exhausted from the night before and drove up there so I could at least go to one workshop and went to the media one at that time.  Then I went home and slept!!  Sorry!!!  I didn't want to overtire myself since I have had some recent TIA's.  I will look through the literature that was given to me and see if I can find anything useful, but will have to get to that next weekend probably as I will be out of town this weekend in Dallas. 

Maybe I can find out some information through NORD.  I did get someone's card that works with the media there. 

Michelle
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Michelle
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Re: Medicare/Medicaid
Reply #14 - Jan 31st, 2006 at 1:48pm
 
In reference to Medicare I was wondering what AARP is doing can anyone tell me if they will pay for the surgery
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Re: Medicare/Medicaid
Reply #15 - Feb 6th, 2006 at 3:03pm
 


  I am so seriously down & out regarding treatment or (lack of) I should say.
  I am tired of the countless TIA's I seem to encounter, the fatigue, brain fog, forgetfulness, etc.

  "please excuse me... I am just venting"!!!

  I just started receiving disability from soc. sec in Jan 2006 was discouraged to find out that (medicade turns into medicare after 2 years) & I am so confused as to what to do now.  I was diagnosed & had all testing done as a Kaiser member (expediting records from them is difficult to say the least).  Now that my medical coverage has changed I have no clue as to what to do, Kaiser had dropped me as a client because they have no plans that fit my medical coverage status... its crazy..   Undecided

   Shan had referred me to her Neuro here in Hawaii & I do have an appoihtmwnt on March 3... thank God.

  God Bless you Shan for the referral... & Bless the rest of you for all you do too !!!  Wink

  At Kaiser my neuro strayed away from the surgery thing because she said my particular moya case was not as bad as most.  But my personal pcp had made mention that medicare will not cover my particular type of surgery & Kaiser & most doctors had absolutely no regimine on treatment for moyamoya, other than aspirin & cholesterol, blood pressure lowering drugs if needed...  I am no longer with Kaiser so while pondering stuff,  I now kinda understand her reluctance... it stinks being deceived because of bureaucracy, but thats a reality for us moyas.

  Thank you all here for taking the high road to help others... God so loves Ya.

  Any feed-back as for where I should turn next... please let me know, I am at the end of my rope... seriously.
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Re: Medicare/Medicaid
Reply #16 - Apr 1st, 2010 at 11:08am
 
One option some people have to take for surgeries like these are self financing. This is a big reason why a lot of people choose Health Savings Accounts for times like these.
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