A funny thing happened to the ALS registry on its way to becoming a law. It ran into politics. If it weren’t so pathetically sad, it would be laughable, but I am slowly learning that anything connected to ALS is hard. Well, that’s not true; the people I have met through my various ALS associations are probably the easiest people to deal with. I’m sure it’s because everyone with ALS or caregivers of people with ALS have their priorities suddenly aimed in the right direction…whatever it takes to make this disease easier, that’s what needs to be done.
The ALS registry would do that. Everyone who deals with ALS on a daily basis knows that. It would help to direct research; it would help to point to trends that might lead to treatment and cures. It wouldn’t fund research, but just give scientist a clue as to where to look and where to begin searching. Senator Coburn stopped all that…in so many ways. He voted out of the Senate H.E.L.P. committee only to place a hold on S. 1382 on the Senate floor. He got more press that way. Bills are held every day in committee, but no press. When you hold a bill on the Senate floor, and pork barrel spending, it gets press. But it wasn’t just the ALS registry he held; many other good and decent bills suffered the fate of the “Coburn hold”. His brand of politics is unlike anything the Senate has seen before.
After 7 months of hold limbo land, suddenly ALS patients, caregivers and advocates had hope again. The registry was being bundled into S. 3297….a compilation of bills that had strong bipartisan support and that was a shoe in to pass…or so everyone connected with ALS thought. But then, politics reared its ugly head.
On Monday, July 28th, S.3297 was brought up to a cloture vote. 60 yes were needed for cloture. An yes vote for cloture would bring the bill to the Senate floor for debate, and then a vote to pass it, and then …on it’s way to the President. Wooo-hooo!
However, politics. The Senate was in the middle of a bitter, bipartisan debate about energy…gas prices, energy market speculation, and to drill or not to drill for oil and gas.
That bitter debate got in the way of doing what was right for many many Americans. S.3297 did not get its 60 votes that were needed and the bill was not brought to the Senate floor for a vote. It wasn’t because S. 3297 didn’t have full bipartisan support…it was because of politics. The politics of the Republicans wanting certain provisions in the energy bill. The politics of the Democrats not wanting those provisions in the energy bill. The politics of the Senate steeped in age old tradition of debate, and time enforced rules.
What was lost on that hopeful Monday was the fine art of negotiation and compromise, which has also been an age old tradition of the Senate. Furthermore, it was lost for the rest of the week, and the Senate adjourned without an energy bill and without passing S. 3297.
At this point in my life, I don’t care where we get our energy from; oil, gas, wind, soybean, corn or sage grass. That may sound glib, but it is the truth. You see for me it is simple, the thing that matters most to me right now is not energy or even politics, it is ALS. ALS is first and foremost in my life. And for now, energy and politics are standing in the way of potentially bringing the ALS registry to fruition, and potentially bringing a cure to those with ALS.
So, just as living with ALS, I jump into another world where everything seems hard. Politics. When the Senate returns in September, I want the fine art of negotiations to replace the art of politics. I will spend my “August Recess” contacting my Senators and urging them to “negotiate” instead of “politic”. Maybe then, once compromise is reached, S. 3297 will make it to the Senate floor, be voted on and passed. Then the only thing funny we might hear about the ALS registry act will be the glorious sound of PALS and CALS laughing and rejoicing. With passage of the registry act, after 67 years of “ALS status quo” things could change. PALS and their CALS negotiate and compromise with this disease every day. In September, it’s time for the Senate to do the same...negotiate and compromise. Negotiate and Compromise.
3 comments:
Dear Happy-
You must have first hand knowledge of the political game as you have described the fine art of "politicking" and all it's messy details to the "T". I have over 20 years doing battle in the trenches and you win some and you loose some. Not necessarily on the merits of the issue either...Time for everyone to step back and regroup. With extensive bi-partisan support, this bill will pass. My fear is it might not be till next year however, as when Congress comes back in the fall, the budget bills will be up for votes. Same sort of political "issues" may rear their ugly head...At some point, your efforts will not be in vain...
ALS needs Coburn's press secretary.
Coburn gets enormous amounts of national press, the conversation is all about him, and he basks in the glory that gridlock enables for him.
Coburn overwhelmingly wins the strategic media battle and John Hart deserves a raise.
It appears that August is going to be another month of silence regarding Dr. No and S.1382. First, one brave Oklahoma ALS patient was headed to a town hall showdown with Dr. No, then that didn't happen. Now that constituent is involved all alone with an aid to Dr. No. Has the time not come for this battle to be a bit more than a constituents personal battle. Where is the ALS Surge that will take on Mr. John Hart? Somehow we need new ammo for about forty senators that turned their backs on ALS. We need some sergeants and a general with fresh ideas that will win this battle.
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