[pegleg]

I need for readers to do two things (we should ALL share this responsibility).

oops! hit submit too soon - will finish posting:

[pegleg]

Our nation is about to embark upon one of the most important pieces of legislation in our history. If passed, it can change everything from the diagnostic tests ordered, to which doctor you can see. The bill on the table is 1017 pages! There's no way that it will all be read and mastered by any one person (except mybe th authors). But together we can be made aware of what changes are proposed.

I am NOT wanting opinions posted here - it leads to far too much arguing and dividing. But is believe it IS our responsibility to know what is being proposed. Maybe you want to muster up support, but please don't make this thread one of political opinion. If it starts (the arguing), I will request it be deleted. (I am serious about this!) I believe we need to KNOW what changes may take place that will greatly affect our quallity of life or have a major impact on our medical services.

First, is this the actual document (or the most current one)?\\http://frwebgate.access.gpo.gov/cgi-...=f:h3200ih.pdf

Secondly, PLEASE take time to thoroughly read and learn what benefit versus problems are anticipated if this bill passes. If you want to point out a certain part, please try not to interject opinion. Just give us the facts that you find - ask questions - and pass on important topics.

Thanks!
Peggy.

[jeanb]

Good idea, Peg.

[chasmo]

Idon't think anyone knows whats in it. MY question is who wrote it and when!
The fact that it covers millions of illegal aliens is a non-starter for me.
ALso where are all the doctors going to come from to treat the 46 million people who all of a sudden are accessing the system?

Charlie

PS Peggy is full of great ideas!!

[indigogo]

Peggy - the whole thing is mind-numbing!

For the MJFF perspective, here's a portion of Katie Hood's post in the Huffington Post last week, you can read the whole thing here: http://www.huffingtonpost.com/katie-..._b_242829.html

"Based on our experience at The Michael J. Fox Foundation, I'd add that the entire medical research enterprise -- from basic science through translational research, clinical trials and care delivery -- suffers from an extreme lack of strategic oversight. In our opinion, that -- combined with the vested and disparate interests of stakeholders along the way -- is why we have the mess we have today.

I wish I were smart enough to know the answer, and I don't pretend to be. But I do know it's critical that we all understand the problem. It is not acceptable that U.S. health care costs are so high -- according to Leonhardt, roughly $15,000 per household this year, about twice what they were on an inflation-adjusted basis two decades ago and about $6,500 more than in other rich countries on average -- and that the overall quality is so low. While debate can get hung up on one aspect of the plan or another, we all have to realize that reform is imperative. The question is not: Should we take on health care reform? Rather: What is the root of the problem? What dimensions of reform are most critical? Where should reform begin?

In the last year and a half, our country has had to pull its head out of the sand on numerous issues as the economy has tanked and recession has set in. Our days of ignoring problems and thinking they will go away are finished. The problem our Foundation is facing head on has to do, in part, with the inefficiencies of the existing medical research enterprise, one piece of the overall health care puzzle. As we've learned more about the systemic problems that impede a fast track toward a cure for PD, we've realized that our strategy must, in large part, be directed toward addressing those challenges. And we've learned that clear articulating of what's broken in the medical research system, and how that drives our business model, is critical to building support for our efforts. It's far from a simple thing to communicate. But we find that when people understand the true nature of the problem, they often become very enthusiastic about our Foundation's strategy: to do everything we can to streamline a labyrinthine system, tackle roadblocks, bridge gaps, and get people and institutions talking to each other more effectively across the board."
---------------------------------------------

And for another, more detailed point of view, read CBS TV doctor Jon LaPook's Huffington Post entry on "Why You're Not Stupid if You Don't Understand Health Care Reform."

He says, "Very smart people are zoning out of the health care reform debate because they think it's just too complicated."
---------------------------------------------

edited to add: It's hard to find the global perspective in 1000+ pages of rules and regulations - will this reform actually change failed systems? At this point, I guess I just want something to happen, to let it happen, rather to chase the devil that's in the details.

[lurkingforacure]

can be found here:

http://fredthompsonshow.com:80/premi...lsaXN0U2l6ZT01

Also, note that the Rochester Mayo Clinic (and 18 other organizations) sent an open letter to Congress praising the effort to reform health care but expressing serious concern over the proposal(s) on the table. In other words, we need reform, but this ain't it. Here is the letter link:

http://open.salon.com/blog/kathy_rio...th_care_reform

Finally, I have read that Obama has said he will not participate in the plan. Without getting into politics, does anyone else have a problem with that?

[pegleg]

How many of you remember the days of "Dragnet" with Sgt. Friday? Whenever he investigated a criime, that was his reply when people started giving opinions, "Just the facts, ma'am." However, in this instance, and although this bill is supposedly being presented as a bipartisan piece of legislation, I am certain separation of facts or fiction is about as clear as mud!

I posted this here because I am concerned about the heresay that this legislation has in dealing with "chronic illnesses" - "long-term care elderly" - "care of the elderly and mentally deficient" - and "end-of-life care." Folks - that's people with PD! But it is just heresay to me, because I haven't read it all. The easiest thing might be to do what indigogo and lurkingforacure have done, and that is to refer us to summations or discussions then let us check them out ourselves for fact or fiction.

I DO know that we had better not pass this as quickly as we did the stimulus package. It's one thing to throw money at programs to save them, but quite another to make decisions about who gets treatment based on thinking in a philosophy that says "You're old and are going to die anyway," or "You have dementia or some illness where you won't get better, so you don't need this treatment." I also do not want the government to take away my insurance that I have worked hard for and pay for privately and tell me that I HAVE to sign onto their plan. THESE ARE FACTS!

Another fact - I have been on Medicare disability for 10 years and pay nearly $400 a month for a supplemental insurance - I am very fortunate in spite of the expense. I have never had any problems with the supplemental coverage, except maybe to clarify something. The government-ran Medicare, however, is quite another story. Just a couple of examples - I once had to wear orthotic shoes - one with a brace built into it. The pair (that's two) of orthotic shoes were to correct and prevent further foot, leg and gait problems. Get this - Medicare would only pay for the one shoe that had the brace built in it!

Wait - there's more. After having Medicare as my primary policy for a decade, just last month I had a bunch of claims denied saying that my supplemental insurance company was now primary. After hours of calls and investigating, the Medicare assumpotion was in error and the reason was someone had made a typo in using my middle initial.

Based on my experience with federal programs, I'm not so sure that I want ALL healthcare put into their hands. And I also worked for the Veterans Administration for 7 years in administration, and trust me - it was a zoo compared to the private sector.

This is fact based on my experience, and I am open for discussion.
Let's just be sure we know what all is facing us with oour degenerative illness.
Peggy

[lurkingforacure]

but all the babyboomers (oh yeah, that's us again!) that will get the short end of the stick. Those who are not able to be rehabilitated and return to the status of taxpaying working folk will be last on the list...in England, I believe it is, they get 13 months of wheelchair coverage and then that's it...clearly, they expect you to have gotten better and not need the wheelchair after that time...but if you have PD, or MS, or many other illnesses, you may need that wheelchair for years. Who believes that any of us will be able to get the newest (and therefore most expensive) drugs, therapies, or DBS under this plan-does anyone honestly believe the federal government is going to cover the 100K cost for DBS for any significant percentage of PDers? Ha.

The reality is that because of cost, most money will end up being delegated for the healthier young folk (prenatal, well baby, immunizations, etc.) As Peggy pointed out, the thinking is, sadly, that we old and/or sick folk are going to die anyway, so save the money for those who will still be voting in a few more years. There is no way to suddenly cover the entire country with healthcare and not go even deeper in debt (and Obama has said he will not increase the deficit for healthcare) without limiting, severely, what is covered, and who gets what coverage. Resources will be allocated accordingly.

I would be very curious what our various doctors thought about the proposals on the table. What few details I have been able to glean without reading the entire 1000+ page document, are not favorable, see post above. And we have all heard the horror stories from those living in places with socialized medicine (realizing, of course, that not everyone has that experience, but still, there are an uncomfortable number of those stories).

One other thing: I have read an article in which Tim Giethner stated that he did not quite know what to do about Freddie Mac/Fannie Mae, the federal bureaucracies charged with regulating the mortgage industry. He stated that these agencies were primarily responsible for the mortgage disaster we are still recovering from, and so clearly need to be reworked, but that they were so huge, he was not quite sure how to scale them back! He stated it would take a year "or so" to figure this out, and of course in the meantime we are paying a boatload of tax dollars to support these two agencies that failed miserably in their primary purpose.

Federal healthcare would be an even larger agency than Freddie and Fannie combined. Something to think about.

[indigogo]

Here's another link to more information:
http://www.cnn.com/2009/HEALTH/06/18...reform.basics/

Like Peg, I am also on Medicare, and I spend $150/month for an excellent supplemental plan that includes prescription drugs. (It paid my $10,000+ bill for the 3 days I spent at George Washington University Hospital with that infected cat bite during the 2007 PAN Forum!!!)

The bill as written does not call for universal care; it is a halfway measure that insures you can keep your current insurance and medical plan - if your employer chooses to keep the same plan - but, then, we have always been at the mercy of our employers when it comes to health insurance. The public plan would be one of many to choose from.

Here's a good interview with Obama and ABC News where a couple of neurologists pressed Obama on if he would seek better care for his own family; it also talks to many of the other issues:
http://abcnews.go.com/Politics/Healt...7919991&page=1

I'm really not afraid of this plan. My daughter and I went 3 years without health insurance after I lost my job and before I qualified for Medicare. It was terrifyingly stressful; my PD was never worse than during the time when I couldn't pay for meds or see my doctor. Now I go to one of the premiere PD centers in the nation, and medicare pays everything. The government safety net feels pretty good to me; all Americans should be so lucky!

[paula_w]

Just thinking about how we let ourselves get to this point is incredible. Who can read and absorb all that? Besides it being physically impossible, they are not even trying to convince us that this can be trusted - someone is reading and interpreting it to present to the public as a whole? Not sure??

which brings us back to just thinking about how we let....lol

paula