Saturday, September 27, 2008

You Have A Chance To Do More Than Just Signing On The Dotted Line, Mr. President

The ALS Registry Act survived the ticking clock of the 110th Congress. Now it's on to President Bush for his signature.

This bill deserves more than a cursory signature with a commemorative pen. After all, ALS is a disease that steals the ability of people to write. Many can still shake your hand with strength, but they have lost the dexterity in their fingers to button a shirt or write a note or turn a key in a lock. As those manual abilities slip away, they never come back. Lou Gehrig's is a cruel disease.

Mr. President, how about signing that bill with some empathy to the people who will finally be counted by the ALS Registry? How about trying one of the hundreds of writing implements that people with ALS rig up so that they can still write? Some are simply fat pens with grips intended for small children. Some are literally pens strapped to their hands and wrists. Give it a try. It makes ALS very real to try the equipment that ALS requires. A White House photo op with some people with ALS showing you how to use one of their implements to sign the bill would speak volumes to the reasons why this registry is so important.

Wednesday, September 24, 2008


The ALS Registry Act S. 1382 Passes the Senate

This essential legislation was introduced to the House of Representatives of the 109th Congress, Oct. of 2005. Letters, testimonies and dialogue were needed to move this bill along the painful process of becoming law. The task becomes more grueling when questionable numbers of relative incidence keeps this horrid disease off the radar. It took sound relationships of constituents from across the entire fifty states to gain sponsorship and approval of this pending bill. Yet it would go on to the next Congress, another bill, higher huddles, more words with more talk. Hundreds, traveling disabled to Congress for three years to explain their personal heart breaking stories. Testimony to Senate Committees from the critically ill, letters from widowed spouses and still more and more huddles.

Finally, after years of negotiations The ALS Registry Act, S. 1382 came to the Senate floor grouped together with nine other health related bills. These bills all on "Hold" by Sen. Tom Coburn with one more final attempt at passage before this the last 110th congressional session before the election. Sen. Harry Reid asked for unanimous consent without objections on nine bills and was met with nine objections by Sen. Coburn. The ALS Registry Act, S. 1382 was the 10th and last bill read before the Senate President asking for any Objections.

Not a sound was heard. It was three seconds of silence, then the sound of the gavel and S. 1382 was finally going to become law. The birth of this bill would help find a cure for ALS and never again would a patient be buried with valuable clues to this horrible disease. It was the best three seconds of silence this ALS patient ever heard.

Saturday, September 20, 2008

The Plot Thickens

From Politico - The Crypt

September 19, 2008
By Ryan Grim 05:47 PM
Coburn Omnibus stakes increase

The stakes in the showdown between Senate Majority Leader Harry Reid (D-Nev.) and Sen. Tom Coburn (R-Okla.) continue to go higher.

Congress must pass a continuing resolution (CR) to fund the government within two weeks, by October first, or face a shutdown in a precarious time.

Coburn is holding up passage of a bundle of broadly supported bills that Reid wants to see passed before the session adjourns, arguing that new spending isn't offset or that the bills duplicate efforts already underway.
Reid has tried to move the package — known as the Tomnibus or the Coburn Omnibus — in recent months but has been thwarted by Coburn, who was able to persuade enough of his Senate Republican colleagues to oppose the move.

But Reid has a powerful weapon in his arsenal: He can bring up the Coburn Omnibus before getting to the CR. And that’s just what he plans to do. “We have been planning to do Coburn before the CR for a week,” said Reid spokesman Jim Manley in an e-mail. Next week will be taken up mostly by an energy-tax-extenders bill and work on the Wall Street rescue package. October first comes on the Wednesday during the week after. Coburn would then be forced to choose between caving in and tying the Senate in knots — which would shut down the government if the CR couldn’t come up for a vote by the deadline. A government shutdown, however, is unlikely in the extreme given the perilous financial situation. Indeed, world markets rebounded today on faith that the U.S. government was riding over the hills to the rescue — not an ideal time for it to shut down, to say the least. In order to avert it, then, Reid could pull the package if it appeared Coburn wasn’t blinking — or Coburn could acquiesece if it seemed that Reid would take it all the way.

Coburn, for his part, looks forward to the fight. "Dr. Coburn would be happy to debate why we need to shut down the government to protect chimps and botanical gardens," said Coburn aide John Hart, referring to some of the bills in the package.

How about a few hundred people with ALS lining the entrances to the United States Capitol with signs that they aren't exactly chimps or potted plants? All of Coburn's talk about the sanctity of life seems a little hypocritical at the moment. I hope that his fellow Senators find his current tatics as offensive.

Thursday, September 18, 2008

How Offensive Can One Senator Be?

Click here to see Coburn's new commentary on the S.3297 omnibus bill that includes the ALS Registry Act.

ALS isn't funny, Senator.

ALS isn't a barrel of laughs, Senator.

ALS is important, Senator.

ALS kills people, Senator.

ALS steals loved ones from families, Senator.

ALS is a cruel disease, Senator.

You're not cute when you try to make silly jokes about the bills you have held, Senator.

Your respect for the sancity of life is less than impressive to those with ALS who might view your website, Senator.

Were you not paying attention the day they covered ALS in medical school, Senator?

Wednesday, September 17, 2008

Putting "Earmarks" Into Perspective

People who have seen ALS in action do not understand how one Senator's personal war against things he calls "earmarks" has been allowed to block any progress at gathering and retaining the clues that may finally help solve the mysteries of Lou Gehrig's Disease.

Last Friday on Washington Week, journalist Jackie Calmes of the Wall Street Journal made an interesting observation. From the PBS transcript:

MS. CALMES: Job training and trade adjustment programs, all of these things - when they talk about, on the Republican side in particular, about being - freezing spending. And I guess it's here, I should mention. All this attention to earmarks, if you wiped out every earmark on the books and that would of course include things that almost everybody from Right to Left would agree are worthwhile projects, it would amount to a rounding error, a footnote in the size of the deficit. It would not get you anywhere.


So this week if Coburn starts his pontificating abour responsible spending and pork and earmarks and once again tries to stop S. 3297 (which contains the ALS Registry Act among other bipartisan legislation that he has blocked), perhaps he would supply us with a bar chart to scale to show us exactly how much the ALS Registry Act will really add to that deficit bar that he has enabled. It will take a really tall chart to get that deficit bar to fit, and he'll need a very fine pen to put the drop of ink on the bar that will represent the cost of an ALS registry.

He doesn't object to every kind of spending, just the kinds that give him easy air time to sound like a heroic fiscal hawk. He's reminiscent of an eccentric who spends a fortune on a lavish dinner in an expensive restaurant and then decides to save some money by not tipping the valet parking attendant. All show and no meaningful action.

Senators, please pass S. 3297 NOW!

Tuesday, September 16, 2008

The Coburn Sucker Punch May Not Work Too Well With Oprah

Oprah has millions of viewers emailing their Senators to ask for passage of S. 1738, the Combating Child Exploitation Act... one of the bills that Coburn has held hostage (along with the ALS Registry Act) with his hold tactic.

From The Hill

Senator No is facing his toughest foe, Senator O
By Alexander Bolton
Posted: 09/15/08 08:07 PM [ET]

...Coburn initially blocked it because it would have authorized nearly a billion dollars over eight years to fund a law enforcement crackdown on child exploitation. Coburn has insisted that new government programs be offset with spending cuts, a budget-saving device Biden’s bill lacked. Coburn now wants Biden’s revised proposal paired with Republican legislation that would give law enforcement greater access to the online records of suspected sexual predators.

He questioned Winfrey’s political objectivity.“I’m concerned that Oprah’s program only highlighted one half of the solution – the half supported by the presidential ticket she has endorsed. While I support the right of celebrities to use their platforms to advance partisan goals, Oprah’s viewers deserve to know all of the facts,” Coburn said in a statement.

Reid bundled the Biden bill with nearly 35 other bills that Coburn has used Senate rules to block into a package known as the Coburn omnibus. Reid fell eight votes short of moving the package through the Senate in July. In a surprise, Reid’s aides have told fellow Democrats he will try again this week — a mere six weeks after Coburn successfully blocked it previously.

Coburn has threatened procedural tactics to block dozens of relatively non-controversial bills during the 110th Congress.The strategy has proven effective because Democratic leaders are not willing to waste days of floor time filing motions to proceed and holding votes to cut off debate to pass bills that have little national name recognition but are nevertheless very important to smaller constituencies. ...

Now is the time for us to follow Oprah's lead and let our Senators know that there is another important issue that needs action now ... S. 1382 The ALS Registry Act... or pass it as part of the package S. 3297 The Advancing America's Priorities Act. Here is Oprah's Call to Action.

Oprah is getting the Senate's attention about one of the important items that Coburn has single-handedly stymied. Your two Senators need to be reminded that there is another important item -- The ALS Registry Act -- that needs our national attention, too. Coburn doesn't always know best, and this is America, not Coburn's personal fiefdom. Please write your Senators today!

Senators, please pass S. 3297 NOW!

Thursday, September 11, 2008

In between listening to salvos fired by those running for president, I happened across a reference to an interesting case related to ALS. A rather lengthy pleading has been written by a fellow PALS (person with ALS) which seeks pro bono help from the dean of the DePaul University Law School in Chicago.

Central to his pleading is a therapy that is showing good results in motor neuron diseases, including ALS, in Italy. Unfortunately for those of us not living in Italy, a patent infringement suit is keeping the drug from being available in the United States. It is available in Italy because a law suit ruled in favor of the PALS which the Italian government now makes the drug Iplex manufactured by Ismed available to all who are prescribed.

In the US, on the other hand, Genentech/Tercia sells Increlex, a drug similar to Iplex but shown not to have the benefits. As a result of the Genetech/Tercia suit, Insmed is prohibited from selling Iplex in the US.

Caught in this dilemma are the over 30,000 ALS patients now fighting this incurable disease here in the United States.

I have trouble keeping all the I-sounding drugs and companies straight. I really recommend that a read of the full document prepared by Edward Esparza. Then think of ways that we can free up one of the very few therapies that have shown some benefit in slowing the progress of this deadly disease. Maybe some other lawyers out there would find this an excellent pro bono case.

When The Rubber Hit The Road

ALScounts has an item this morning about a new government registry that tracks automobile safety issues. Safety dots must be reported by industry. Information may enable consumers to make safer decisions and aid in the prevention of some accidents.

Evidently this all started with an act of Congress in 2000. The Senator formerly know as Congressman Coburn was a member of the House when the legislation was passed there. Here's the scoop --

So a government registry of data on prevention of tire problems got an easy pass through the House (with Coburn's consent) while a registry of data on a mysterious fatal disease is not appropriate for for legislation in this man's mind. Why is that?
Senators, please pass S. 3297 NOW!

Friday, September 5, 2008

There's No Haagen And There's No Daz, But There's A Ben and There's A Jerry

In yesterday's WSJ, we learned that Ben and Jerry's is promoting a governmental national registry to help them guarantee that there will be no ingredients in their products sourced from cloned livestock.

A few have made such a pledge. The center said eight companies it surveyed said they wouldn't knowingly use food from the offspring of clones. These include Seattle-area organic retail cooperative PCC Natural Markets and Unilever's Vermont-based ice-cream maker Ben & Jerry's, which is pushing the government to create a national registry for clones and their offspring.

If Ben and Jerry can pull this off to protect our Cherry Garcia and Chunky Monkey, perhaps we can enlist their help to get a registry for human beings with ALS.

Senators, please pass S. 3297 NOW!