One-Man Gridlock: Meet Tom Coburn, Senate's 'Dr. No'
Additional $3 Million for the ALS Registry - Congress Adjourns
ALS Hope Foundation joins March of Faces - Coming Soon
So Much So Fast Collector’s Edition DVD Fundraiser - Coming Soon
Senate Committee Passes ALS Registry Act
ALS Advocate featured on Dr. Phil
Bill to Help in Fight Against Lou Gehrig's Disease
How you can get your Senator to Cosponsor S.1382 (ALS Registry Act)
 

One-Man Gridlock: Meet Tom Coburn, Senate's 'Dr. No'
Oklahoma Conservative Specializes in the 'Hold'; Stopping 90 Bills in 2007
 
By SARAH LUECK
December 21, 2007; Page A1
Wall Street Journal
 

WASHINGTON -- On Tuesday afternoon, when most senators were preparing to leave Washington for the holiday recess, Tom Coburn was declaring his intention to stick around. "The floor's going to be open," said the 59-year-old Oklahoma Republican. "I'm going to have to be here...to try to stop stuff."
 
Stopping stuff is Sen. Coburn's specialty. In a Congress that has had trouble passing even the simplest legislation, Sen. Coburn, who proudly wears the nickname "Dr. No,'' is a one-man gridlock machine. This year, the senator, who indeed is a medical doctor, single-handedly blocked or slowed more than 90 bills, driving lawmakers on both sides of the aisle to distraction.
 
He blocked a ban on genetic discrimination by health insurers. He thwarted a bill to set up a program to track patients with Lou Gehrig's disease. Also nixed: an effort to promote safe Internet use by children and a resolution to honor the late environmentalist Rachel Carson on the 100th anniversary of her birth.
 
A bill that would authorize government mapping of the ocean floor and coastal areas? No way. One that would require more data collection on the availability and quality of broadband service? Uh-uh. If Dr. Coburn had his way, there would be no new funding for a Justice Department office to investigate unsolved Civil Rights-era killings, no promotion of wild-land firefighter safety.
 
Sometimes, Dr. Coburn, an obstetrician who sees patients one morning a week, disagrees with the proposals. As a fiscal conservative, he usually objects to what he sees as excess spending. Sometimes, he just wants to force a debate or improve on items that would otherwise fly through the Senate. In a crowded legislative calendar, not everything gets the scrutiny voters might imagine.
 
Dr. Coburn's weapon of choice is the "hold," a procedural maneuver that allows a single senator to prevent a bill from being passed quickly without a roll-call vote or floor debate. Until a rule change this year, senators could keep their holds secret, and they usually did. Dr. Coburn notifies colleagues about his intentions.
 
To keep track, Dr. Coburn has four manila cards in the pocket of his suit coat. He pulls out the list, printed in tiny type on both sides, whenever colleagues approach to discuss their bills. In his office's intranet, which staffers jokingly call the "Write-Wing Portal," there's a section for aides to look at bills that have incurred their boss's displeasure.
 
John Kerry, the Massachusetts Democrat and 2004 presidential nominee, had several bills blocked by Sen. Coburn this year. One would help military veterans and reservists with small businesses. Dr. Coburn said it duplicated another program. Another would expand government-backed venture-capital investment in small business. "I can't imagine the government can be good at it," Dr. Coburn said.
 
Negotiations between the two men stretched into Tuesday night as the Senate tried to finish tax legislation and a mammoth spending bill. Dr. Coburn's remaining issues were "this point, that point, the other point," complained Sen. Kerry. "You can't have a one-person committee for every single bill that goes through the U. S. Congress. You'd never get anything done."
 
Dr. Coburn first ran for a seat in the House in 1994, prompted by his opposition to the Clinton health-care plan. He was part of a wave of Republican freshmen who promised to shake up the system and cut government waste. He became an irritant to Democrats and Republicans alike. In 1999, he delayed passage of a Republican-backed appropriations bill by proposing 115 amendments.
 
In 2000, Dr. Coburn kept a campaign promise to leave after three terms. He returned to Muskogee to be with his wife, Carolyn -- who was Miss Oklahoma of 1967 -- and to treat patients. But Dr. Coburn made another run in 2004, entering a Senate race relatively late.
 
Sent back to Washington, he started pushing pet topics, one of which is to warn of the dangers of sex. In the past, he has held a slide show for young staffers, depicting the effects of sexually transmitted diseases and the consequences of sex outside marriage.
 
In February, after the Democrats took over, Dr. Coburn wrote to his colleagues, warning of his intention to block fast-track passage unless his "common-sense principles" were met, which included: New programs can't duplicate existing ones, and new spending should be offset with other cuts.
 
"I think it's good for our leadership to know there's a very vocal and effective right flank in our party, and that can be used in negotiations with Democrats," says Republican Sen. Jim DeMint of South Carolina, a conservative who often works closely with Dr. Coburn.
 
The alliance with Mr. DeMint didn't keep Dr. Coburn from slapping a hold on a bill Mr. DeMint supports -- the one that would set up a government registry to track people with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis. Mr. DeMint is one of 69 senators sponsoring the bill. "He's a physician and he's going to have his opinion on that," says Sen. DeMint, who says he thinks he can win over his colleague.
 
This month, Dr. Coburn sent out a letter encouraging senators to talk to him about legislation they wanted to complete. That had some Democrats muttering about a "tyranny of one." Last week, Senate Democrats took to the floor complaining about Republican tactics, which Senate Majority Leader Harry Reid called "obstruction on steroids." They pointed to the lack of action in several areas stymied by Dr. Coburn, including the Lou Gehrig bill.
 
"Just give us a chance to bring that up on the Senate floor," pleaded Sen. Dick Durbin of Illinois, who is the majority whip. "How much time would it take? Thirty minutes?"
 
Mr. Reid, calling Dr. Coburn's tactics "unreasonable," said when the Senate returns next year, he plans to combine a number of blocked bills and bring the package to a vote.
 
Dr. Coburn says he isn't to blame for slow progress. Democrats used too much floor time debating the Iraq war, he says, and tried to move too many bills on the fast track. He notes he didn't try to stop the spending bill, the only legislation Congress technically must pass in order to keep the government running.
 
As Congress wound down, Dr. No started to act a bit like Dr. Maybe. After winning some changes, he agreed to let one of the Kerry bills pass. Dr. Coburn dropped objections to giving the Federal Housing Administration leeway to insure more troubled mortgages, a key part of the administration's response to the housing crisis.
 
"I lost," Dr. Coburn says. "I decided because of the severity of the problem we face, I can't win that point...but I can at least debate it."
 

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December 21, 2007
Additional $3 Million for the ALS Registry - Congress Adjourns

Congress passed legislation late yesterday to provide an additional $3 million in funding for the ALS registry at the Centers for Disease Control and Prevention. The funding builds upon and expands the pilot projects already underway at the CDC and represents a $2 million increase over last year. This is a great accomplishment considering that it comes during a year when most other health programs were cut or received little or no additional funding. The registry funding was included in the omnibus appropriations bill, which is expected to be signed into law by the President. To date, Congress has provided nearly $5 million to support ALS registry projects that are evaluating the science to guide the creation of a national ALS patient registry
 

The ALS March of Faces Banner has become a highly recognized and widely used tool for raising public awareness of ALS. Its visual effect brings home the human element that all families living with ALS must bear. The impact of giving a face to this devastating disease has helped to highlight the dire need for funding in hundreds of fundraising and awareness events. The MDA/ALS Center of Hope will have a "community" ALS March of Faces Banner which will be displayed at benefits, fundraisers, and other ALS-related programs. This special ALS March of Faces Banner will be of our PALS and their loved ones. We plan to take photos for the banner at the annual Recognition Luncheon and Research Update scheduled for February 2008.
 

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So Much So Fast Collector’s Edition DVD Fundraiser - Coming Soon

So Much So Fast is about the remarkable events set in motion when Stephen Heywood discovers he has ALS and his brother Jamie becomes obsessed with finding a cure. It provides an unparalleled look at a family’s experience in coping with ALS, and the challenges of conducting scientific research. The film has received raves beginning with its premiere at the Sundance Film Festival, through its theatrical release and then broadcast on the prestigious PBS series Frontline, where millions of Americans saw it. With four stars, The Boston Globe called it “Triumphant! A story that keeps expanding until it seems to fill the universe.” The New York Times called it “A perceptive portrait of an entire family in revolt against fate.” Even more important, the feedback from patients and families coping with disabling diseases tell us that the film is tremendously helpful in understanding and talking about what they’re going through, and showing others what ALS is like.
 

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NEWS Senate Committee Passes ALS Registry Act

On November 14, the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously passed the ALS Registry Act! The bill, which would establish a world-wide registry for ALS patients, is now cleared for consideration by the full Senate, which is nearly the final stage of the legislative process. Link to government information thomas.loc.gov/cgi-bin/bdquery/z?d110:s1382
 

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ALS Advocate featured on Dr. Phil

Denise Glass, a 50-year-old ALS patient and advocate from Los Angeles, will appeared on Dr. Phil, Tuesday, Oct. 23. This special episode marked the 10th anniversary of author Mitch Albom's groundbreaking book, Tuesdays with Morrie, detailing the lessons drawn from conversations with Albom's former college professor, Morrie Schwartz, who had ALS.
 

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Bill to Help in Fight Against Lou Gehrig's Disease

May 14, 2007 -- Washington, D.C. - Working to increase understanding of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease, U.S. Senator Harry Reid of Nevada reintroduced legislation today to establish a single, national ALS patient registry at the Centers for Disease Control (CDC) to collect data and study ALS.
 
"Creating a national registry is crucial to understand patterns and examine causes of this debilitating disease," said Reid. "It means so much to me to sponsor such an important piece of legislation, which offers hope to ultimately find treatments and a cure for ALS." The Amyotrophic Lateral Sclerosis (ALS) Registry Act authorizes $25 million for fiscal year 2008 and such sums as necessary for fiscal years 2009 through 2012. In the two years since Reid first introduced this bill, Reid and Senator Harkin have secured funding ($900,000 in FY 2006 and $900,000 in FY 2007) so that the CDC may begin pilot programs that will aid in the development of a national ALS registry. These pilots will help expedite the creation of the registry should the legislation become law.
 
Reid delivered the following speech on the ALS Registry Act.
 

Mr. REID. Mr. President, I rise to introduce the ALS Registry Act.   Lou Gehrig brought Amyotrophic Lateral Sclerosis (ALS) to the public's attention more than 65 years ago and his courage put a human face on this terrible disease. Each of us has a Lou Gehrig back in our home state—someone who shows great tremendous courage and grace as they wrestle with ALS.   Over the years, I have worked closely with the Nevada ALS Association and have met with many Nevadans who have been touched by this devastating illness. One of these Nevadans was a man by the name of Steve Rigazio who was invited to testify before the Labor/HHS/Education Appropriations Subcommittee in May of 2000. Steve was at the height of his career when he was diagnosed with ALS. He worked through the ranks of the Nevada Power Company, the largest utility company in the state, for 16 years until he became President. He played semi-professional baseball. He also played and coached recreational hockey.   After his diagnosis, Steve continued to show up for work at 6 a.m. for as long as he could. Sadly just 20 months after he testified so movingly before Congress, Steve Rigazio died of ALS on December 27th, 2001 at the age of 47. He left behind a family that included a wife, two children and hundreds of friends. The ALS Steve Rigazio Voice of Courage Award was named in his honor as a living testimony to the life of this special man.   Every year approximately 5,600 Americans will learn they have ALS. There is no cure for ALS and there is only one FDA approved drug to specifically treat ALS. That drug only works for 20 percent of patients, and even for them, it merely extends life for a few months.   ALS has proven particularly hard for scientists and doctors to tackle for a number of reasons. One of those reasons is there is not a centralized place where data on the disease is collected. Currently, there is only a patchwork of data about ALS that does not include the entire US population and only includes limited data for specific purposes, such as to determine the relationship between military service and the disease. Perhaps the most obvious example of the limitations of current surveillance systems and registries is that we do not know with certainty how many people are living with ALS in the United States today. Over 136 years after the discovery of ALS, estimates on its prevalence still vary by as much as 100 percent - from a low of about fifteen thousand patients to as many as thirty thousand.   The legislation I am introducing today would create an ALS registry at the Centers for Disease Control and Prevention (CDC) and will aid in the search for a cure to this devastating disease. The registry will collect data concerning: the incidence and prevalence of ALS in the US; the environmental and occupational factors that may contribute to the disease; the age, race or ethnicity, gender and family history of individuals diagnosed; and other information essential to the study of ALS.   A national registry will help arm our nation's researchers and clinicians with the tools and information they need to make progress in the fight against ALS. The data made available by a registry will potentially allow scientists to identify causes of the disease, and maybe even lead to the discovery of new treatment, a cure for ALS, or even a way to prevent the disease in the first place.   Mr. President, I first introduced this legislation in 2005. Since that time, we have appropriated funding to begin work on the development of a National ALS Registry at the CDC. As a result, the CDC has begun pilot programs that will: (1) develop and test strategies to efficiently identify ALS patients, and (2) determine how to obtain data from existing registries and databases. These pilot programs will help to expedite the development of the registry established by this legislation. This is especially important considering the life expectancy for a person with ALS is two to five years from the time of diagnosis.   The establishment of a registry will bring new hope to tens of thousands of patients and their families that ALS will no longer be a death sentence. No one wants to wait another 136 years before a cure is found. I urge my colleagues to support the swift passage of the ALS Registry Act.   Source: Senator Harry Reid

 

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Senator to Cosponsor S.1382 (ALS Registry Act)

"Ask your Senator to Cosponsor S.1382, the ALS Registry Act, which would establish a nationwide ALS Registry of people with ALS and can provide important data to further research and patient care."
 
The following link goes to the ALSA website where you can input your zip code to create an automatic letter to your Senator. capwiz.com/alsa/issues/

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