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Neurology left out of health care reform!

Contact your Senators and urge them to support vital health care amendment!

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The health care debate is moving fast in the U.S. Senate, and members of the Parkinson's community can effect change for millions of Americans. Currently, neurology is not listed as a specialty eligible for primary care incentives in section 5501 of the Senate Health Reform Bill, even though family practice, internal medicine, pediatrics, and geriatrics are included. This will mean that neurologists are the only physicians who regularly manage and coordinate care who are not eligible for the bonus.

Earlier this week, Sen. Amy Klobuchar (D-MN) introduced an amendment to the health care bill that would add neurologists to this list, enabling millions of Americans living with Parkinson's, Alzheimer's, Multiple Sclerosis, and ALS to get the proper care they need.

Neurologists, many of whom are providing the principal care for people living with Parkinson's disease, need to be included in the incentive. Excluding neurologists could have long-lasting ramifications for all people living with neurological conditions, including Parkinson's.

Sen. Klobuchar's amendment, which has strong bipartisan support from Sens. Susan Collins (R-ME) and Sharrod Brown (D-OH), will correct this problem. Call or e-mail both of your senators today and ask them to support Sen. Klobuchar's amendment (H.R. 3590), and ask the senators to let the Senate Finance Committee know of their support.

Take Action!

[paula_w]

I'm disgusted and ready to revolt. They left neurology out? That's because the scarecrow in the wizard of OZ could out think congress.

Now we are supposed to write them and ask them to save us? Am i the only one who is angry - no one is going to save anyone it's all just a big waste of time and money.

I sound like the recently deceased David Boots, advanced pd , God rest his soul, found dead after a fall 6 days later. That's reality - these business clowns and mad scientists have lost touch with what is real...and they call US obsessive compulsive......

We are the sane ones!

paula

how could a bill long enough to circle the globe leave out neurology?

Originally Posted by Stitcher

Neurology left out of health care reform!

Contact your Senators and urge them to support vital health care amendment!

Take Action!

The health care debate is moving fast in the U.S. Senate, and members of the Parkinson's community can effect change for millions of Americans. Currently, neurology is not listed as a specialty eligible for primary care incentives in section 5501 of the Senate Health Reform Bill, even though family practice, internal medicine, pediatrics, and geriatrics are included. This will mean that neurologists are the only physicians who regularly manage and coordinate care who are not eligible for the bonus.

Earlier this week, Sen. Amy Klobuchar (D-MN) introduced an amendment to the health care bill that would add neurologists to this list, enabling millions of Americans living with Parkinson's, Alzheimer's, Multiple Sclerosis, and ALS to get the proper care they need.

Neurologists, many of whom are providing the principal care for people living with Parkinson's disease, need to be included in the incentive. Excluding neurologists could have long-lasting ramifications for all people living with neurological conditions, including Parkinson's.

Sen. Klobuchar's amendment, which has strong bipartisan support from Sens. Susan Collins (R-ME) and Sharrod Brown (D-OH), will correct this problem. Call or e-mail both of your senators today and ask them to support Sen. Klobuchar's amendment (H.R. 3590), and ask the senators to let the Senate Finance Committee know of their support.

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[Bob Dawson]

Well, I have to sit this one out. I'm not American, plus I am on shore leave. Good luck with this, PWP in the U.S.A. This is a test. You have been put in your place. Again. Somewhere between old age and alcoholism. Every PD org. must go public to change this law, and pay close attention to the reaction, or lack thereof.

Amgen proved it first in the GDNF fiasco - they told members of Congress and their own P.R. machine that they were unplugging the volunteers, before they told the volunteers. And they not only got away with it, they prospered. They refused to even have PWP involved; cut off communication with Nick Nelson, who was writing a book about it. They demonstrated that PWP can be bulldozed, despite many on this site and elsewhere who fought it tooth and nail for years.

Politically ignore cancer or AIDS at your peril; ignoring Parkies is a piece of cake.

Perhaps no one agrees with Anuket's approach, but on a number of occasions she has raised interesting questions about the fluffing of evidence in Parkinson's research, and each time she invites the researchers to show where she is wrong. They delete her comments, or simply go silent, or send her a condescending letter.
The group in Amsterdam who are paying Amgen for the privilege of pushing GDNF research further finally replied to my letters - and they seem quite open now - but one group in the U.S.A. working on GDNF did not reply at all, as usual.

These are just examples: your superiors do not fear any consequences if they ignore you. The government can, by deliberate intention or by ignorance and neglect, exclude you from the new provisions that apply to others, and they do not think that you have any strength left to reply. Or maybe they just don't think about you at all. And that is not a criticism of the U.S.A.; here in Canada the Parkie associations would not even dream of saying anything about anything to anyone for any reason at any time, and my own group is hard to deal with now, because they are in full-scale revolt, countered by an instinct that leads them to stay "underground", meaning simply, keep a low profile and avoid any mention of Parkinson's; take a defensive position, take care of each other as best we can, and close the door on the Parkinson's circus.

You've got to win this one. And then find out how and why it happened, and who discovered it, and who had the courage to inform the Parkies. With luck, it will turn out to be a typographical error in a 2,000 page contract, and it gets corrected right away. But if excluding neurology is deliberate, then the whole issue is only about who they think we are, compared to who they think they are.
Once again, time and energy and resources are required to fend off the assaults. Time and energy and resources that should go into winning a war against the disease. Like we won the war against polio. Like we blew smallpox off the face of the planet. Nobody in Congress said, "well, you know. let's exclude the people with polio"; or "smallpox - that's just really old people who will be dead before the next election, right?" If there actually was a war against Parkinson's, Congress would not so easily put you way, way, way down below the Cash for Clunkers program.

[Thelma]

here in Canada the Parkie associations would not even dream of saying anything about anything to anyone for any reason at any time, and my own group is hard to deal with now, because they are in full-scale revolt, countered by an instinct that leads them to stay "underground", meaning simply, keep a low profile and avoid any mention of Parkinson's; take a defensive position, take care of each other as best we can, and close the door on the Parkinson's circus.

Well said and now we have MJF coming to Canada. Do you know why? I don't. Where is the research to support here and the association to push it or will it go stateside.

[paula_w]

this is to help neurologists, who are like primary care doctors for many conditions and are not included in the benefits that others are,

but the health care bill is just one of the many reasons i think we need to revolt or boycott...and the other reasons are global. here they are in my revolting opinion:

sinemet shortage - already has begun having an effect in the uK - they are exporting it for sale at a higher cost after purchasing it in the Uk and provide a good example [i'm sure they think they fooled us ] of an empty statement about why. can someone who knows how to do that develop a course online ? surely there is a list of key empty meaningless words that, used in combination, would get me started. .......How to speak and say nothing for Dummies. Could make a fortune....anyone?

oh - so pwp in the uk have to use whatever alternatives are available, like generic or stalevo. or dbs. Merck is sorry, they say ahead of time, and continue saying it's going to take two years to complete.

But bob, this is a global redistribution of brand name sinemet and the letter to british neurologist states this. it will be given to countries with greater need, Sounds like an eleemosynary act doesn't it? [cough]

Too bad for the UK and it goes on to say that many countries will be affected. see sinemet shortage thread for links. This could affect you and the gang up there . Merck, is also developing a nondopaminergic treatment that could replace sinemet someday. i hope they do.

i don't know how anuket does it without sinemet but more power to her and i respect what she does as much as you do.. i believe she has had it for 11 years? or is it more? i had it many years before i took sinemet too. but had to give in eventually - too dysfunctional and miserable.

finally, your toronto scientists along with the others in their 'gang' have made a few statements that are intriguing. namely that advanced patients are freezing and falling for reasons other than dopamine loss. this puzzles me because wouldn't it be because dopmaine no longer works? too much cell loss ? why would it be for other reasons? people age and fall and may look like a pwp at age 90 and i think it would be a natural loss of dopamine causing that wouldn't it? why call it non dopaminergic? it wasn't explained.

then there is the opinion, again from their 'gang' that cell transplants are not working - cell based therapy - including spheramine. But they didn't mention adult cells or ISP in their opinion -which is supposedly proceeding like gangbusters [no connection in words.]

i can see the problem with patient centered medicine....having to actually sit with the people and see their suffering and even more problematic - realize how much patients have been watching and learning. they laugh and speak derisively at our misinformation......well.....we haven't learned the language of deception or emptyness yet....like i said......blah blah

finally, someone has declared that gdnf gene therapy is for early stage patients.

so we have alll these things together that are troubling and confusing the subjects of pdland....resulting in very frustrated and extremely knowledgeable advanced patients who could know more about the overall picture than they do..

i am no longer expecting a cure, but this " ,multi cultural "[but mostly American - which used to work and be a land of opportunity]gang" is not going to control that through royal pronouncements. I am hoping this rage abates but our book may become a necessary exposee.

i think we should make a youtube video of everyone dancing tho ......just film yourself, i got the "Just dance "dvd for wii and it is a workout...i hope i don't have a heart attack. we could dance to mc hammer " you can't touch this." I still can be a f un person......lol. ..and what a work out hip hop is. Nobody ever wants to have fun around here.
oki've been at it all day..

cheers,
paula

.....

[Jaye]

Carolyn, it's a good gosh darn thing we have you around to wake us up once in a while. Thank you.

I'm with you, Paula. I'm so mad I'm spitting nails, and just barely articulate.

WHAT neurologists manage total care for PD patients?? I'd rather have a psychiatrist as my primary, since they are right there with us where the rubber meets the road, and notice how things affect us. Our disorder falls squarely into the chasm between neurology and psychiatry, IMHO, so why deprive us of a GP or internist to referee the proceedings?

Who would you like managing YOUR care, PAN? A neurologist who won't even give you a referral for severe hip pain, or one who tells you on the phone to stop taking your PD meds because you don't look sick enough, or one who tells you not to talk about your other symptoms because only motor symptoms are wanted, who treats you like a case of psychogenic parkinsonism because he can't get into the psychiatrist's files to find out what you're doing with those crazy doctors?

Did that cover it? No? Well, what about the generalist neuro who says you can pick your own meds because he doesn't know anything about them? Or feast your eyes on the one who slips a piece of paper out of their pocket for prescription doses--the piece of paper apparently giving better information about what you need than the painstaking notes you brought with you outlining usual dosage times, meds taken, and any reactions or shortfalls?

Now, the rare good ones--it does happen, for short periods of time--what about their time? It takes 20 years to learn to ge a neurologist, and you want him managing care??? Toenail fungus? Flu? Emotional overreaction? And what, find specialists for you?? Hoo ha.

It seems to me, in fact, that few neurological visits are of any use or benefit to the patient, anyway, except as a source of medications, else why do people PM and email ME to ask what they should take? (I don't attempt to tell them, of course.)

Hel-LO, PAN, with all due respect, "Currently, neurology is not listed as a specialty eligible for primary care incentives in section 5501 of the Senate Health Reform Bill, even though family practice, internal medicine, pediatrics, and geriatrics are included"--this iis how you justify your alarm? Those "specialties" comprise what we used to call "General Practice." Where is the outcry for otorhinolaryngologists or nuclear medcine specialists, or OB-GYNs to be rewarded for managing care? Study the organization of any large hospital!

Yikes, let's not just jump at everything related to neurology and push it forward. We have too much real stuff to fight for, and burdening highly educated and trained individuals with the minutiae of our messy lives is not my idea of something that promises success. And I don't know a neurolgist who would disagree with me on this point.

Now ask me how I really feel about the issue LOL. Oh, and all the incidents mentioned above have really happened, somewhere, to someone.

Jaye

[Bob Dawson]

Dear readers,
Go back and read Paula's post and Jaye's post again, and this time, read them out loud, putting passion into your voice. It's all true. The big picture of Parkinson's is a million little pictures all rolled into a circle; and those million pictures seem to be all on this site. None of you are against each other; it is all part of the extraordinary thing that happened to all of us in different ways. Paula, that book is going to be like Shakespeare to future generations; your post and Jaye's post could be read word for word on stage as part of a play. I may be easy to dazzle, but I am dazzled.
I'm with Paula at the end: let's just dance.

[paula_w]

i bow to your words of encouragement ....or i could make it..'omg" i've been understood. either one/both.

thank you bob

back to a movie about julia child

[Stitcher]

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See above for directions!!

But is it 30-something outside. I just finished 8 hours with three grands, one of which is autistic...we love him and could not see life without him, but so much work!!

This is wear I would like to spend all day tomorrow...

[pegleg]

Should I be mad? Well, I'm stark-raving mad already. But how about angry? I don't think so. THINK ABOUT THIS! I have never known of any insurance company who let "Specialists" (like neurologistis) have total care for a patient or be their PCP (primary care provider). And why? Two reasons - Money and too specialized. A short visit with my neuro is $149.00 - and that's far less than an hour he spends with me, unless he wants to talk. They usually reserve an MD with Internal Medicine or Family Practice licensing to take over that duty (PCP). It makes sense, although I feel like I live with my neurologist (we do NOT have THAT close a relationship! lol)

Actually I have a wonderful neurologist - we share a great relationship and he has been through a LOT with me. But neurology is all he does - that narrows it down about a humongous number of subspecialities, such as: epilepsy, stroke, MS, muscular dystrophy, migraine, carpal tunnel, dementia, Alzheimer's, Huntington's disease, Wilson's disease, ADHD, aneurysm, dyslexia, brain tumor, ALS, Asperger's, Austism, diabetic neuropathy, coma, dystonia, pain management, ataxia, Myasthenia gravis, Meningitis, encephalitis, essential tremor, hydrocephalus, head or brain injury, sleep disorders (including insomnia, narcolepsy, etc.), Lyme disease, MSA, and PARKINSON'S. . . should I continue? Actually, here's a list of "conditions" covered by the title "Neurology." (from the NINDS website i.e. the National Institiute of Neurological Disorders and Stroke)
http://www.ninds.nih.gov/disorders/disorder_index.htm

I don't know if I am missing anything here, but if we start yelling for Neurology - then let's yell for Neurosurgeons, Rheumatologists, Otolaryngologists, Gynecologists, Urologists, Gastroenterologists, and others ad nauseum. PAN may know something I do not, so I hope they share with us.

And about the L-dopa (aka Sinemet) shortage, well . . . I have a theory on that one. My theory is not all that complex either. I plan to write something up on it and see if anybody will buy it (not literally).

My theory is just difficult to explain, and I will try, but t here are too many variables being considered here.The professionals say that there is a 2-week washout time after taking Sinemet. Do you know of any studies that make a patient do without their carbidopa/levodopa for 2 weeks? I think NOT! And why?? Because it could kill you (see Neuroleptic Malignant Syndrome defined below).

There is also a rebound effect when you stop taking your PD meds (agonists and L-dopa). That's what happens when we go "off" and become like an invalid because we failed to take our medication on time (for some, even 15 minutes makes a difference). Any study I've ever read about only ask for 12 hours without Sinemet. So what are the results? A rebound effect, and its severity is different for different people because your symptoms can be affected by a few things; like stress, sleep (or lack of), metabolism, what you ate the night before testing, any other pain or illness you may have (a sinus infection or a mild cold would fit here), and a number of other things. This rebound effect can be with dyskinesias (ofof dyskinesia) or without dyskiinesia - or akanesia - lack of movement). Herein lies t he placebo effect.

What I am saying is this - there is some kind of turn research is taking, and it had better turn, because they've been popping unknown substances, drilling holes in people's heads, and transplanting stuff foreignn to our bodies and have a measurment system that lacks any merit whatsoever.

I haven't even gotten to the meat of my theory yet, so here goes. Have researchers been measuring the stage of advancement of our Parkinson's disease, or the "off" rebound effect of 12 hours without medication, or are they just measuring how we think we feel (placebo effect). Are our "symtoms" actually symptoms or advancement of the disease itself?

I think we should be saving our energy and efforts toward getting an answer to these questions before we ask for our neurologists to get an incentive for primary care! That's just my ever so humble opinion. Oh, by the way - we won't get an answer anytime soon. Can you imagine what COULD happen as a result of admitting that the measurements we have used for the last 40 years for PD research aren't worth the paper they are written on??

I rest my case.

Peggy




From the NINDS website:
Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly.