1.1. Re: Senator Coburn ????????????????????????????????????????
Posted by: "Leon" hightide9103@yahoo.com hightide9103
Date: Fri Jan 11, 2008 9:16 am ((PST))



Thank you Senator Coburn for being our watchdog! If there was a cure
for ALS you could save us 1000 times this amount. Doctor, what are you
thinking?

CONGRESSIONAL BUDGET OFFICE COST ESTIMATE January 9, 2008

S. 1382
ALS Registry Act
As reported by the Senate Committee on Health, Education, Labor, and
Pensions
on December 4, 2007

source; http://www.cbo.gov/ftpdocs/89xx/doc8919/s1382.pdf
<http://www.cbo.gov/ftpdocs/89xx/doc8919/s1382.pdf>




Messages in this topic (43)
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1.2. Re: Senator Coburn ????????????????????????????????????????
Posted by: "rknt50c" rknt50c@yahoo.com rknt50c
Date: Fri Jan 11, 2008 9:23 am ((PST))


...and ALS advocates have spent a lot out of their own pockets to make
difficult trips to Washington and to visit public figures to get the
word out about the need for a registry. That investment of money and
precious time (especially precious for those dealing with the ticking
ALS clock) goes poof if Coburn's watchdog tactics prevail at the expense
of the ALS Registry Act.




Messages in this topic (43)
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Senator Coburn ?

Posted by: "Chuck Hummer" gamboachuck@yahoo.com gamboachuck
Date: Mon Jan 14, 2008 8:32 am ((PST))

I spent a good deal of time with the ALSA advocacy department
representative at a local conference yesterday and specifically asked
about the status of the registry legislation and, in particular, our
friend, Senator Coburn. Their experience with Coburn goes all the way
back to when he was in the House. He has been a maverick with more or
less the same objectives from his earliest days, in spite of being very
unpopular in wide circles, but popular amongst his constituency base.

ALSA met with him and his staff over the past two years specifically on
the registry and provided numerous briefings. The latest was prior the
HELP committee hearing where the bill was reported out by unanimous
consent with no amendment or objection by Senator Coburn. Then he gave
notice to the entire Senate that he would put a hold on at least 80
pieces of legislation that were intended to pass at the last hour by
unanimous consent, a procedure that that unless someone objects (C0burn)
the legislation passes without further action.

It does not appear that the Senator will deviate from his long policy
where he feels the government should not pass legislation on specific
diseases, or even health care at all and his strong objection to
anything that has the appearance of an earmark. (Which the registry
bill does not) and his long standing unhappiness with the CDC
management.

What happens next? The Senators can easily pass the legislation by the
normal process should it wish to, in spite of Coburn's solo objection,
but it will take longer. Even with a bill like ours with 70
co-sponsors, it is prudent to keep communicating with your Senators on
the importance of this legislation. ALSA intends to put out some
guidance on a campaign to pass the registry when Congress reconvenes.

I pointed out that one of my concerns was the complete lack of any word
on what was happening or going to happen since the hold was placed at
Christmas time, and especially since there had been such an overwhelming
support and participation by grass roots advocates. So my report above
may serve to catch everyone on this list up and just as important, the
need for timely communication to the advocates by the advocacy
department.

gamboachuck aka Chuck Hummer


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With friends like Senator Coburn...who needs enemies!

Alffe ,
I absolutely agree.
The even sadder thing is this man is a physician. ( although an OB/ Gyn who has probably no clue about ALS )
It is kind of hard to keep political discussions out of medicine sometimes , because some politicians keep hindering medical progress.
It not a partisan problem though , and certainly not with this bill.
--Lisa

2.1. Re: Senators with Aspirations...
Posted by: "Chuck Hummer" gamboachuck@yahoo.com gamboachuck
Date: Sun Jan 20, 2008 6:21 pm ((PST))

rknt,

I am not only surprised but very disappointed to see two of the main
senators seeking their party's nomination are turning their backs on
the national ALS registry. But when I look at those who are still not
co-sponsoring it really pains me. Perhaps some of the voters from
their states will take the time to let them know how important this
bill is to all of us in the ALS community. This is the latest list of
non co-sponsors from the ALSA site tonight.

S 1382, National ALS Registry Act- Senators not yet co-sponsoring.

Alabama Richard Shelby (R) --- Arizona John McCain (R) --- Jon
Kyl (R) --- Colorado Ken Salazar (D) --- Wayne Allard (R) ---
Idaho Mike Crapo (R) --- Illinois Barack Obama (D) --- Indiana
Richard Lugar (R) --- Kansas Pat Roberts (R) --- Kentucky Mitch
McConnell (R) --- Massachusetts Edward Kennedy (D) --- Mississippi
Roger Wicker (R) --- Missouri Christopher Bond (R) --- Nebraska
Ben Nelson (D) --- Nevada John Ensign (R) --- New Hampshire
Judd Gregg (R) --- New Mexico Pete Domenici (R) --- Ohio George
Voinovich (R) --- Oklahoma James Inhofe (R) --- Tom Coburn (R)
--- Pennsylvania Arlen Specter (R) --- Tennessee Lamar Alexander
(R) --- Bob Corker (R) --- Texas Kay Bailey Hutchison (R) ---
John Cornyn (R) --- Utah Orrin Hatch (R) --- West Virginia
Robert Byrd (D) --- John Rockefeller (D) --- Wisconsin Herbert
Kohl (D) --- Russ Feingold (D) --- Wyoming Michael Enzi (R) ---
John Barrasso (R) ---

By jingles, do I see a fairly large number of R's in this list? Does
this have some meaning as we approach major elections next November?





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