Sunday, April 27, 2008

These Aren't Just Any Football Cards

The ALS play clock ticks relentlessly for Hilgenberg, Duranko, Proudfoot, Brigance.

Wednesday, April 23, 2008

Lord, What's An Earmark?

Remember the old Bill Cosby "Noah" routine... "Lord, what's a cubit?" Sleepy isn't terribly bright sometimes and feels as puzzled about earmarks.

The word conjures up images of pigs and pork and all of the bad smells that go with a pig farm. If you want to coin a phrase that reeks of fat and lazy animals, earmark is a perfect word to use.

Sleepy's business experience is that people who receive budget money in corporate America love it when the uses for those funds aren't terribly specific. That gives the manager much leeway in spending the funds and allows for some changes in plans that may come up during the year. When a budget has been justified by a specific purpose, that purpose can often be completely forgotten by the time the funds are spent by the manager.

Google "earmark" and you'll find explanations from the viewpoint of the OMB (part of the Executive Branch of our government):

It looks to Sleepy like an earmark from the OMB perspective is anything from the Legislative Branch that reins in its ability to use discretion in spending the taxpayers' money.

Google "good earmarks" and you get a different perspective. Everyone agrees that the bridge to nowhere is not our Legislative Branch's finest moment, but there are cases where some specificity and accountability in having legislative intentions implemented aren't terrible things.

Perhaps when legislation is designed specifically to help sheep avoid the slaughter of ALS it isn't all that evil. It may handcuff the Executive Branch's discretion a tad, but in the big picture, is it really a smelly barrel of pork?

Friday, April 18, 2008

Medicare Is Newest "Black Hole"

In 2000 Congress met several times with an ALS patient that took on Medicare with the use of only two fingers. From the dark side of Lou Gehrig's disease, David Jayne had been granted "homebound" status by Medicare but broke the rules when he attended a football game. He was branded a Medicare criminal and his benefits recinded immediately. That's all it took for David to take on Medicare and so his solitary fight took shape. He founded, National Coalition to Amend the Homebound Restriction. This two fingered sports fan became the new Georgia Bulldog for ALS rights. David made week-long trips from his Atlanta home to Washington to lobby for legislation lifting restrictions that keep people who receive Medicare home nursing services from leaving their homes. Each trip to D.C. involved a mountain of detailed planning and scheduling by his family and friends. As with most ALS patients David couldn't speak, couldn't breathe on his own, couldn't feed himself and couldn't get on the toilet without help.
With the support of Sen. Bob Dole they pushed Congress just to take a look at the restrictions. Simple enough, you'd think? David felt that this experiment might flop when it was finally signed in 2004. He felt that Medicare simply could not handle the project. "If an adequate population sample is not achieved then Medicare will not be in favor. Congress gave Medicare the task to investigate the program in three states. Congress then authorized Medicare to enroll 15,000 in the study but their non-aggressive enrollment campaign only yielded 58 (stringent demonstration enrollment criteria kept enrollment low). Their conclusion following the two year study was written by Mathematica that stated, "Barriers to a successful experiment were difficult and policy issues remain. How lame can a federal agency get?
In my view stringing this one issue out for seven years is appalling. How much humiliation was a man near total paralysis supposed to endure. Heads should have rolled for the fact that a two year study proved no results, only that it did not work out. David had two working fingers, two eyes and with a friend, a football game could still be a blast.
Medicare has become a Black Hope that is going to suck the very existence away from ALS patients like David Jayne. President Bush has again offered dangerous policy prescriptions in his 2009 federal budget proposal that would further damage our broken health care system. This budget, if enacted, would undermine critical public health insurance programs and state budgets by cutting Medicare by $178 billion over the next five years and cutting Medicaid by $17.4 billion over five years. These heavy-handed program cuts and recycled ideas will cause further damage to our fragile health care system.
Maybe the Medicare Black Hole has a hidden message, if you got problems, "fin for yourself." For people with disabilities, finding quality attendant care can seem like a complicated maze, taking in a movie or a football game is just a few of life's simple options.
We need smarter solutions, and real reform.

To view Mathematica's full 140 page report (Black Hole) dated Oct. 2007

Monday, April 14, 2008

My Lands, This Is Confusing!

Sleepy is confused.

This week according to
Coburn worked hard to add amendments to federal lands legislation, one of which would have required the Office of Manpower and Budget to complete an annual inventory of federal lands along with a tally of the costs of ownership and maintenance of each and every one. His fellow Senators rejected his amendment because of the cost and burden of our government annually registering 1.2 billion property assets and 635 million acres of land.
OK... so in Senator Doctor's mind, it's good to inventory real estate annually because it holds clues to costs of ownership but it's bad to inventory people who hold clues to a fatal (and expensive) disease.
Sleepy doesn't understand the logic.

Saturday, April 12, 2008

The One Willing To Speak Up In This Conversation... the one whose disease is stealing her ability to talk.

ALS patient fighting back by: JIM MYERS World Washington Bureau4/12/2008 12:00 AM
She wants to know why Sen. Tom Coburn is blocking a bill to create a national patient registry. WASHINGTON -- Sherry Owens clearly is frustrated. The Sulphur businesswoman, wife and mother of two grown sons is suffering from Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease. With her muscles collapsing, Owens, 53, must use a wheelchair, but that's not what she wants to focus on these days. Owens' frustration is caused by some of the responses she has been receiving from U.S. Sen. Tom Coburn's office to her questions about why the Oklahoma Republican is blocking a bill to create a national ALS patient registry. "It is like talking to a brick wall when you call up there," she said. Owens also took issue with what she saw as sarcasm from one of the senator's aides as he explained how Coburn came up with the scores of holds he has put on various bills. "That really set me off," she said, adding that the response played a part in her decision to take her concerns public. "I am so sick and tired of hearing those answers." Coburn would not comment. Senate Majority Leader Harry Reid, D-Nev., who introduced the bill to create an ALS patient registry, says it will improve understanding of the debilitating disease and possibly boost chances for a cure. Reid's version of the bill authorized $25 million for the first year with additional funds to be added later; an amended version changed the funding to authorize $43 million over the next several years. Co-sponsors range from liberal Democrats to conservative Republicans. Reid spokesman Jim Manley said Coburn "is blocking a bipartisan, broadly supported bill that has 72 co-sponsors and would easily pass the Senate. It is a particular shame that Coburn is dragging his feet on this by creating a tyranny of one, considering ALS patients have so little time." Patrick Wildman, an official with the Washington, D.C., office of the ALS Association, said no one with that group could comment on the bill or its status. Owens said she has nothing to lose by going public with her frustrations. She points out that ALS has been well-known for decades because of Lou Gehrig; she considers a registry only as a starting point. "They are not doing enough for a disease like ALS," she said, conceding that the number of ALS sufferers is small compared with people with AIDS or cancer. But Owens said such comparisons become meaningless when ALS hits home. She questioned why Coburn, who often cites his experiences as a physician, would take the position he has taken on a bill dealing with a disease. Owens' problems had begun several years earlier, but she was diagnosed with ALS two years ago. ALS is a progressive neu rodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS patients in the later stages of the disease may become totally paralyzed, and the disease eventually leads to their deaths. A registry "is not going to save my life," Owens said, but she added that at this point, any improvements in how people with ALS now live would be welcome. "I don't want to have this conversation with somebody else 10 years from now because nothing was done," she said. "My God, it has been years. Most of us don't have a lot of time to waste."

Sunday, April 6, 2008

This Could Be More Fun Than Starbuck's

If you require a feeding tube, I'm sure the good physician/Senator will be glad to assist. Notice that RSVP is required. Sooners, I hope you will enjoy some java and interesting conversation when you're in DC.

Friday, April 4, 2008

Curts Pitch 4 ALS Goes Global!

Curt Schilling is on the DL but that does'nt stop his ALS Advocacy.

The Boston Red Sox's travel to Japan for exhibition games and Curt took time to visit ALS patients and their families at the Tokyo Dome. There are approximately 8,000 known ALS patients living in Japan. It is thought however that there are 75% of that number living in Japan that are coping with ALS undiagnosed. The ALS chapter was started in 1986 and works in relative obscurity, which is unfortunate. Curt's plan is to change that in the 2008 baseball season.
Curts Pitch 4 ALS is a program started 17 years ago. Basically Shonda and Curt donate $100 dollars per strikeout, and $1000 per win to the local ALS Chapter(s). What started as a program to benefit the Philadelphia ALS chapter run by their friend and tireless advocate Ellyn Phyllips has now grown to encompass the Arizona and Boston Chapters of ALS.
Curt has recruited pitcher Daisuke Matsuzakas and is hopeful that he can generate a massive amount of awareness for ALS in Japan. So far the Japanese players are not involved with ALS, and the ties are just too strong between the game and the disease to not try and make that happen.

Me thinks that nominating Curt Schilling to run for public office would be a good thing but this Ambassador is very simply over qualified.