Sunday, March 29, 2009


Yesterday I felt grateful to get my 2009 baseball madness into full swing.  It was a hot day at the minors as the boys of summer sharpened their skills.  The fans were practicing their player chants while hoping those choice tickets would deliver that perfect foul ball.  At the end of the game I imagined everything was in black and white as the two teams shook hands.  Then I visualized the MVP called the "Iron Horse" approaching a lone microphone at home plate while silencing his fans.  Lou Gehrig was saying goodbye to baseball as well as his friends for the last time. His ALS (amyotrophic lateral sclerosis) diagnoses was kept secret from the public until his passing.
This July 4th, at ballparks around the country, ceremonies will be held in honor of the 70th Anniversary of Mr. Gehrig's "Luckiest Man" speech.  His speech will be read during the baseball games that day and funds will be raised to help find a cure of Lou Gehrig's Disease.  ALS  is a horrible, horrible disease that strikes people in the prime of their lives with no warning.  And today it is a death sentence for thousands.  Life expectancy of a person is 3 to 5 years on average after they have a diagnosis.  I received my diagnosis about 4 years ago, another day truly seen in black and white.  So please, if you find yourself in a ballpark, watching a game on America's Birthday, be as generous as you can when asked to contribute.  We can "Strike Out ALS".
Mr. Gehrig received the honor 60 years after his death by receiving more votes than anyone else in Major League Baseball's All-Century Team.  This honor was voted upon by the fans of baseball.  A testament to Mr. Gehrig's greatness.  

Tuesday, March 24, 2009

Yesterday Wasn't The Day To Be Shy About Curt Schilling or ALS

Curt Schilling retired from baseball yesterday.

Curt Schilling is one of those lightning-rod personalities who likes a big stage and knows what to do with it, both in baseball and in life.

Curt Schilling was one of the best advocates and benefactors the ALS cause ever had.

Try the Google exercise this morning.  Google "Curt Schilling retirement" and you'll see lots of news stories.  Google "Curt Schilling ALS" and you see a few news stories with mentions of his goodness to the cause.  You'll notice a nice tribute to the man and his work on the field and off from the Boston Red Sox.

Where are all of the tributes and quotes from the ALS organizations he helped? Yesterday was a day to shine some light back on a man who has done much for the cause, and in the process shine a little light on the cause itself.  No doubt that the tributes will come.

When the shelf life a a news story passes, it's not like you can just go out and buy a fresh gallon of milk, though.

Sunday, March 22, 2009

AIG - ALS -- What A Difference Two Letters Make

Paid $220 million in bonuses to executives after the taxpayers of Americal bailed it out to the tune of $182.5 billion per Connecticut Attorney General Richard Blumenthal. AIG paid bonuses of more than $1 million each to 73 employees, with five of them getting bonuses of more than $4 million.

Advocates go to Washington in May to ask our legislators to pony up $5 million from the taxpayers for ALS research. Suppose 500 advocates go to Washington. Let's suppose a modest personal travel/lodging investment of $1000 each. That makes a half million dollar personal investment to put forth a request for $5 million.

Maybe the ALS cause needs to buy a vowel and a different ending consonant.

Wednesday, March 18, 2009

One Size Never Fits All

As poor as the American high school education system can be, it does have a grip on one concept that we could apply to the ALS cause.

Think of the four years and the differences in students between that first year and the fourth year. Think of the differences between student interests and their parents' interests. It's not rocket science that schools find activities and niches and educational approaches for first-year students that are vastly different from those supplied for seniors. Educators present different programs for parents than for the students themselves. Alumni are engaged very differently than sophomores. Neighbors of the school are included differently from seniors.

No school is foolish enough to toss up one educational program and then to expect all of the stakeholders to achieve at their highest levels.

Since the typical course of ALS takes around four years, perhaps we can learn from an analogy with the high school education experience. One size of advocacy engagement does not fit all.

Friday, March 6, 2009

Still "Indestructible"

The late Chicago filmmaker Ben Byer, who chronicled his fight against Amyotrophic Lateral Sclerosis, commonly known as Lou Gehrig's Disease, in the award-winning film "Indestructible," will be posthumously honored by the Chicago Muscular Dystrophy Association (MDA). The Ben Byer ALS Awareness Award will be presented at the Annual Benefit for ALS Research, A Toast to Life at 6 p.m Saturday at Enclave, 220 W. Chicago Ave.
For ticket information, visit  Toast To Life  or  Indestructible

ALS Gives One An Interesting Perspective On Healthcare Delivery

People with ALS and their caregivers have special insights into healthcare delivery and could add a valuable voice to the heathcare conversation that started at the White House yesterday.

The big White House powwow included key members of the Senate and Congress, representatives of associations of insurance companies, pharmaceutical companies, physicians, other healthcare professionals, independent citizens, etc. Many organizations representing consumers were there as were small business organizations and labor unions.

The focus was on healthcare reform, including cost reduction and increasing access to quality care. All of the stakeholders had a chance to be heard.

Once you've had the ALS experience, the inefficiencies in American healthcare delivery scream at you. The waste is sickening. The system doesn't deliver at the same pace that this very aggressive disease races through one's remaining years, and the system isn't exactly nimble enough to adapt to the need. It likes to do what it does.

Perhaps President Obama and our Senators and Congresspeople would benefit from some first-hand testimony on how healthcare delivery does not deliver. It's hard to build a truly better mousetrap if you don't confront the problems and their causes in the old mousetrap.

From the perspective of a caregiver to one with ALS, healthcare delivery today is much like package shipping was fifty years ago. You mailed the Easter package to be sent to your grandmother a few hundred miles away at the beginning of Lent, or it wouldn't make it by Easter. You had to wrap it with special paper and twine or it would be rejected. You had to buy insurance because there were pretty good odds that it would not show up in Cleveland or it would be damaged if it did get there. Today with improved logistics, better information systems, and effective competition, we have a choice of economical and effective ways to send a package to Cleveland. That is true progress.

PALS and CALS voices would be valuable for this discussion. We're not asking for the cure this time. We're simply willing to add some insight into out some areas where the system is failing expensively.

Wednesday, March 4, 2009

Call for ALS Demonstration in D.C. in May

Those involved with ALS research repeatedly make the point that the goal of getting effective treatments for ALS is directly a function of the amount of funding for ALS research. I've followed, off-and-on, both ALS research and ALS advocacy, since around 1981 and have seen far too many false starts and false promises, while during the same period, a disease like Aids has gone from being unknown to having very good treatments. So given this, I’d like to throw out the following suggestion for what I think would be effective advocacy:

Every year in May the ALS Association has Advocacy day in D.C. and lobbies Congressional offices (Congress is usually out of session during this time in my experience). While over the years they have advocated for some good and needed legislation, when it comes to any significant funding SPECIFICALLY for ALS, they have been very timid - nothing approaching what is needed or commensurate with a horrible disease like this with no real treatments whatsoever. So I propose that during ALS advocacy day in May, when many PALS and CALS will be in D.C. for this, that a protest demonstration be organized to DEMAND (not ask) MUCH greater federal funding dedicated to ALS research (which has always been disproportionately underfunded).

The Obama administration is pouring a lot of new money into the NIH for research, including through the just-passed stimulus package. I see no reason why ALS shouldn’t demand and get its fair share. But without a real advocacy push, I guarantee that ALS will, at best, just get some small increase, probably proportionate to the overall increase in funding (which likely wouldn’t even offset the decrease in inflation-adjusted funding that has occurred over the past few years).

Having observed and participated in protests, marches and other advocacy in the Nation’s Capitol for some decades now, I have seen the effectiveness of even small groups of protestors on the Capitol steps and other actions. The early disability advocates - most in wheelchairs - did this with great effect decades ago; to get laws and policies changed, leading up to the Americans with Disabilities Act. And the militant tactics of the early AIDS activists (groups like ACT UP) garnered attention and ultimately catalyzed public and private support for AIDS, at levels far beyond any justified on the basis of any medical, scientific or rational criteria. Following their lead, more militant Breast Cancer Activists blocked entrances on the Capitol, chanting that it was UNACCEPTABLE for breast cancer to be killing women; leading to funding increases that jumped many times in a short period of time. With somewhat less success, Prostate cancer advocates followed suit.

Not that this is the most rational or equitable way to make funding decisions, but this is how the game is played - more politics than science or medicine. Also, do not forget that in the early 80's, militant AIDS activists who disrupted board meetings were not exactly a sympathetic group, unlike PALS, who would certainly be seen this way by the media and the public. And yet those early AIDS militants were damn effective in forcing both policy changes in drug studies, etc. and, of course, in convincing the government to pour massive amounts of funding into AIDS research.

And yet, over the 28 years I’ve followed ALS advocacy, except for the March of Faces (do they even still exist?) demonstrations outside of the FDA office to maintain access to Myotrophin in the 90s, I’ve not seen any comparable militant or effective ALS advocacy - at least in terms of affecting federal funding. The MDA even shunned asking for federal funding for decades, until just a few years ago, even though the federal government is by far the biggest funder and potential funder of medical research, especially at a time like this, when private funding sources are generally not in much shape to be shelling out dollars for anything.

So what do people say? Mid May is coming up fast, but with organizing over the internet it should be possible to put together an effective protest/demonstration; one which might draw on many of the PALS and CALS who will already be in town for ALS Advocacy day. By now, it should be clear that doing the same things the same old way has simply produced the same old results, which in this case has meant the same basic, anemic level of funding for ALS, even as the cost of research has usually gone up faster than inflation, meaning that the same level of funding is really a decrease in real dollars.

I’ve heard the arguments against such actions, but don’t buy them for the most part. If most PALS are too sick or otherwise unable to attend such an event, there are CALS, family member and friends of CALS and all of the above for PALS no longer with us. All told, there must be hundreds of thousands of persons in the U.S. who know, knew or have been affected by ALS, directly or indirectly. And for such advocacy, large numbers, while always nice, are not as necessary. If half those who come every year for ALS advocacy day participated, that probably would be sufficient to gain the crucial media attention and force Congresspersons to go on the record, making some statement. Plus, there are a fair number of people who worry they may have ALS, not to mention some number who have related motor neuron disorders or similar one’s, like Multifocal Motor Neuropathy - all of whom could be invited to join in.

BTW, I recently heard the Governor of South Carolina, Mark Sanford, mention that his father had ALS, so maybe he could be a champion.

Thanks for reading


Tuesday, March 3, 2009


Which of these three letters scares you the most?

The FDA has done it again! Last December the FDA cleared the way for Neuralstem, Inc. to conduct clinical trials on ALS (amyotrophic lateral sclerosis) patients by injecting stem cells into their spinal cord. The company had filed an Investigational New Drug (IND) application with the FDA to begin a clinical trial to treat ALS. The plan is to treat ALS patients through spinal injections of stem cells via its patented Human Neural Stem Cell Technology at Emory University.

Last week the FDA put a hold on this clinical trial and said it needed more information about the manufacturing capabilities, and all studies and injection methods for treatment. Once again, as with other therapies, the FDA has asked for a modified protocol including a patient's eligibility to participate. How much more qualified can ALS patients be? If the IND describes the clinical trial that is directed solely at ALS what then is their alternative. Could it be that the FDA does not understand that having ALS is already a death sentence. The legal waivers to participate in any clinical trial could never match the horrors of ALS.

For the past 21 years, The Life Extension Foundation has compiled evidence indicating that the FDA is the number one cause of death in the United States. The FDA causes Americans to die by:

• Delaying the introduction of life-saving therapies
• Suppressing safe methods of preventing disease
• Causing the price of drugs to be so high that some Americans do without
• Denying Americans access to effective drugs approved in other countries
• Intimidating those who develop innovative methods to treat disease
• Censoring medical information that would let consumers protect their health
• Censoring medical information that would better educate doctors
• Failing to protect the safety of our food
• Misleading the public about scientific methods to increase longevity

A startling number of reports reveal the FDA is in far worse shape than originally thought. Few people comprehend that they are likely to suffer and die prematurely as a result of FDA’s failures. The greatest threat the FDA poses to our health is the fact that the agency functions as a roadblock to the development of breakthrough medical therapies. Innovation in medicine is stifled by FDA red tape, which is why Americans continue to die from diseases that long ago might have been cured.

Tell Congress we need an HHS Secretary now.
The clock is ticking on comprehensive health care and FDA reform - and for millions of Americans, time has already run out. Leaving us without a strong advocate in Washington is simply unacceptable.

Americans cannot afford to wait any longer. Tell Congress to work together for swift confirmation of Kathleen Sebelius as Secretary of Health and Human Services.

Sign the petition to be delivered to the Senate.