People With ALS Deserve A Happier New Year Than This

The following was posted on the ALS forum at www.patientslikeme.com:



People with ALS deserve a more respectful salutation than, "Dear Consumer," and a better approach to quality homecare.

ALS Has A Way Of Defining The Meaning of Christmas

It's the best of times and the worst of times.

William Wan hits a home run in his feature in the Christmas Eve Washington Post --
http://www.washingtonpost.com/wp-dyn/content/article/2010/12/23/AR2010122305469.html

This is an important story that hundreds of thousands of people have experienced first-hand as the Hermans experience every day. Thanks, Mr. Wan, for telling it so beautifully.

This Is Totally Cool For ALS Awareness

Thank you, Toyota Racing.

http://www.toyotaracing.com/motorsports/video.html#dec-20-2010

Please Take 15 Minutes And Chime In

One of the comments on the posting regarding the ALSA Advocacy Listening Tour for 2011 hit the nail on the head -- "If they do ask for your input- what IS YOUR input? What do you think is of utmost importance?"

Here's your chance to speak up and share your ideas. It will take around 15 minutes to complete the survey. We'll summarize the results and will share them with the advocacy departments at ALSA, ALS TDI, and the MDA... and with all of you here. Please click the link below, chime in, and make a difference!

ALS Advocacy Survey

Urgent Action Item

From ALS TDI http://www.als.net/forum/Default.aspx?g=posts&m=328809#328809

Please! Call your legislators immediately to urge them to support the Omnibus spending bill! The bill contains millions of dollars for ALS, that could evaporate if this bill is not passed. The bill must be voted by Saturday, so this is an immediate need. Please contact me with any questions.Thank you,
Carol HamiltonDirector of Government Affairs and Foundations
ALS TDI
chamilton@als.net

https://writerep.house.gov/writerep/welcome.shtml

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Has your opinion been solicited yet for ALSA's Advocacy Listening Tour that is currently gathering feedback for advocacy priorities for 2011?

We started a poll earlier and had some viewing problems on some machines, so please just chime in with your Yes or No response in the comments area below. Thanks.

As of 8:30 am EST when this posting was started we had
1 Yes vote
3 No votes

Thanks for chiming in below.

Something Really Nice Is Happening Today

While the ALS / MND organizations and scientists meet in Orlando this week, ALS TDI has been kind enough to be the ears and eyes and messengers into those meetings for the thousands of interested people who can't be there.

So follow @ALSTDI on twitter (hashtag #ALSSYMP) or like ALS TDI on Facebook or simply check out the forum at http://www.als.net/ .

This is why iPhones and Android phones and Blackberries were invented. This kind of live interaction is perhaps the highest use of twitter and Facebook.

Thanks for making us all a part of those meetings, ALS TDI. It's pretty exciting when those with ALS and those who care about it know the pulse and information as things unfold... and it's a blessing to be able to be a part of those meetings remotely.

Here's A Question For The Global ALS MND Organizations

As you get your heads together in Orlando this week, please consider this.

We know that there is an increased incidence in ALS in those who have served in the U.S. military.

Have any other countries studied to see if that is the case in their military veterans?

If there have been no such studies, would some not seem like an urgent need? If there have been such studies, the world is all ears to hear about them.

Is it a military phenomenon or an American military phenomenon? It would seem that the answer to that question might yield some important clues.

Stem Cells for $1000, Please, Alex

On Thursday afternoon, there will be a special opportunity to ask the experts at the big ALS organizations' meetings in Orlando. People with ALS and their families are welcome to attend. No reservation is required.

Click here for details.

As you can see on the agenda, there are short discussion periods after each presentation for people to "Ask The Experts."

If you are attending and would like to submit your question in advance, or if you are unable to attend, you may submit questions to the moderator, Sharon Matland, Vice President, Patient Services, ALS Association smatland@alsa-national.org .

We hope that many are able to take advantage of this opportunity to access these prominent scientists with their questions.

Let's Hope That Some Good News Is Coming From Orlando In The Next Few Days

This week there are large, annual, international meetings of motor neuron disease (ALS) organizations in Orlando.

http://www.alsmndalliance.org/meetings.html

This is the first in ALSadvocacy's memory that the meetings have been held in the U.S.

On Tuesday and Wednesday the organization of organizations will hold internal meetings. Let's hope that the topic of sending out some global shock waves via a unified global ALS MND awareness day might cross their minds. Let's hope that those who venture over to the Disney complex will pay attention to the creativity and energy that can make an organization stand above the others. Let's hope that they're ready to try some radically new and different approaches to creating awareness of ALS. Let's hope because the status quo hasn't worked.

On Thursday, a special "Ask The Experts" forum will be held. Let's hope that some insightful questions will spur some new thinking into some new answers. Let's hope.

On Friday, a special forum for health professionals dealing with ALS will be held. Let's hope that some innovative approaches to delivering healthcare for those with ALS will be discussed. Let's hope that the American healthcare delivery system for those with ALS might learn some new concepts. Let's hope.

The culmination of the meetings will be on Saturday the 11th through Monday the 13th when the international innovators in ALS research and in dealing with ALS will give their presentations. Let's hope that something new and newsworthy is going to be revealed as a part of these presentations. Let's hope that some new clinical trial success or drug development investment will be revealed. Let's hope because we have decades of promise without deliverables.

That's a very long set of meetings and we have some hopes. Talk's cheap. Show us what you can do differently, motor neuron disease organizations, to beat this beast of a disease.

The Wall Street Journal Reports On A Man Who Did Something Jawdropping

http://online.wsj.com/article/SB10001424052748704638304575637332280726598.html?KEYWORDS=als

From the Wall Street Journal, November 27, 2010, by Shelly Banjo

"A Long Ride To Aid ALS Sufferers"

Chris Pendergast is a man with ALS who is a hero to the cause with his annual Ride for Life, and now he is the star of an article in the Wall Street Journal.

"I saw the pathetic amount of research and support for patients and immediately became an advocate," Mr. Pendergast says, speaking through a ventilator. "I needed to do something jaw-dropping to capture the attention and imagination of the public because no one was paying attention to this disease that was lingering in the background and painfully killing people."

Let's Really Redefine Christmas This Year

Please take a look at http://www.redefinechristmas.org/ . There are some wonderful messages there along with the tools to make Christmas count this year.

As you evaluate U.S. charities, please consider making donations (plural) to several ALS 501c3s.

Following are some for your consideration:

www.alsa.org and its independently funded local chapters such as www.alsafl.org and www.alsaindiana.org and...

www.als.net

www.als-mda.org and www.augiesquest.org and www.bettysbattle.org and

www.wingsoverwallstreet.org

www.projectals.org

www.alsguardianangels.com

www.prize4life.org

www.pva.org

www.alscenter.org

www.lesturnerals.org

We who are able to donate need to make this more than an either-or choice. It's time that we raise the resource tides for multiple organizations involved in ALS research and patient services.

There would be no finer Christmas gift than to give a hand to several organizations searching for the cure and to several helping families deal with a disease that nobody should have to face at Christmas.

Let's redefine Christmas and let's redefine the way we are fighting ALS -- together!

Is It Not Time To "Go" To Washington In New Ways?

May will be here before we know it. Anyone who has participated in ALS Advocacy Day will tell you that those face-to-face encounters with legislative staff members make an impression. Anyone with ALS who has participated has gone through incredible hoops to get there, to navigate through the city, to use the rest rooms, to search for accessible entrances, and to make it through an exhausting day. Caregivers run themselves ragged. All spend a small fortune on transportation and hotels. Sometimes that investment of precious energy and money culminates in a five-minute meeting in a hallway with a staff member.

Envision this in 2011. One patient and one legislator in every state are selected to pilot something efficient and economical (two magic adjectives in the new Congress). A webcam is set up in the patient's home. The patient is ready to use whatever communication means works best for his or her situation. The patient has the talking points for the 2011 ALSA advocacy requests. The legislator has a staffer set up a webcam in the Senator or Congressperson's office. At the appointment time, the patient and caregiver can communicate with the legislator in an extremely efficient and cost-effective manner. The talking points are made. The approach is novel and will be remembered by the legislator and staff. The concept might even be nationally newsworthy!

This could complement the in-person participants beautifully. This could get the messages into offices that might otherwise have been hard to reach. This is not rocket science, but it sure would look that way in the halls of Congress.

It's time for some people to go to Washington in new and different ways. The first organization to pull this off will make the splash. Anybody ready for a big splash?

If She Can Work The Miracle Of A Successful Write-in Campaign...

...then perhaps she'll help us work the miracle of finding a cure for ALS.

http://blogs.wsj.com/washwire/2010/11/16/murkowski-i-dont-think-palin-enjoyed-governing/#

I love it when there is a picture of a United States Senator wearing a red Strike Out ALS wristband in the Wall Street Journal!

We hope to see the best friend the cause has on Capitol Hill in May for Advocacy Day.

Ut-Oh!

http://www.telegram.com/article/20101110/NEWS/11100338/1237

NIH Fears Cuts In Research Funds
by Alex Wayne, Bloomberg News
WASHINGTON — Spending cuts proposed by the incoming House majority leader would reduce scientists’ chances of winning U.S. grants by almost half, demoralizing researchers and slowing drug development, the National Institutes of Health’s director said. Republicans taking control of the House next year would roll back funding to agencies including NIH to fiscal 2008 levels, according to a proposal by Rep. Eric Cantor, R-Va., who is likely to become the chamber’s majority leader. That would equate to a 4.3 percent, or $1.3 billion, cut to the agency’s $30.8 billion annual budget.

Here Is A Stunning Ad

From the Alzheimer's Association in this morning's Wall Street Journal, page D2 --

"We'd show an Alzheimer's survivor here, if there were one."

0% survival.

6% the funding of cancer.

100% insane.

It's a stunning ad with a stunning message.

Where are the stunning messages regarding the other "A" disease -- ALS?

It's time to stun some people into stopping another insanity.

What If They Held A Census And Nobody Came?

Statisticians can do amazing things. We saw that last week when elections were called fairly accurately within minutes of polls closing. For some things though, no amount of statistical magic can substitute for an old-fashioned count of noses. This is the case with ALS.

ALS advocates finally obtained the permission of the United States along with the funding to make such a census happen. This census has been named the U.S. ALS National Registry. It started counting noses a few weeks ago.

If you have ALS, please go to the CDC (an agency of the United States Government) website and have your nose counted by "joining the ALS registry." https://wwwn.cdc.gov/als/Default.aspx

Until all people with ALS join the registry, you will be cursed with both low estimates of how many people have ALS and a lack of data to prove what environmental factors might play a part in ALS.

If you have ALS, please enroll. If you know anyone with ALS, please urge him or her to enroll.

I buried a loved one to ALS and the clues that her medical and life history contained were buried with her. That need not happen ever again.

This Should Shock And Awe Us All To Action!

When The ALS Clock Is Ticking, Five Months Can Be The Better Part Of A Lifetime

The following was posted on an ALS patient message board a few days ago:

I've been spearheading a push to see if we can get the 5 months waiting period change when you apply for social security disability. The law reads you must wait 5 full calendar months before you receive your first disability check. I've been working hard with Senator Cathy Young and US Senator Charles Schumer. This has been 6 months worth of meetings, phone calls, etc. Please help all PALS by writing a letter to help support this change. ANYONE, can write a letter. We are asking all letters be done by November 12th.

I'm sure I'm not the only one who has been financially ruined because of this wait time experience? Any others with the same issues? Because we are a working middle class family, we are not eligible for any other type of support or asistance with anything. My husband has a job, I was the bigger paycheck, but his paycheck doesn't make up for the loss of my income, not even close. One place we went to for help told us to have my husband quit his job, then they could help us!!! How insane is that?
Here is the e-mail address to support this change:
Laura_Monte@Schumer.Senate.gov or mail to Laura Monte, 130 South Elmwood Ave. Buffalo, NY 14202. Please put in the subject line of the e-mail: Wait time for SSD.

A sample letter is on my facebook page, Deb McQueen Quinn, just print it out and sign it and drop it in the mail or copy and paste and send by e-mail. Letters, the more the better, must go to the healthcare advisor and they will do the research on SSD and then make a determination if they find just cause to move ahead to introduce a new law. If not, we will get a letter back explaining why not. I did the sample letter, provided my issues over the last 6 months during the wait time and also included my Familial ALS history. If you don't feel you want to send it to Senator Schumer, please send it to your local Senator, but, the power is in numbers and he is on our side and all ready understands where I'm coming from on this issue. IF we make it far enough, Schumer will ask for some of us to come to DC for congressional hearings on this matter. Hope.....mine is still with me!

Letter Campaign - Take III

ALSA is again promoting a letter-to-the-editor campaign for Veterans' Day.

Here are two old postings from ALSadvocacy with some thoughts for your consideration in hopes of making your letters more likely to be published.

http://als-advocacy.blogspot.com/2009/11/gonna-sit-right-down-and-write-myself.html

http://als-advocacy.blogspot.com/2008/10/alsa-letter-campaign-for-veterans-day.html

Before you take the plunge and use the tools at http://alsa.capwiz.com/alsa/home/, I urge to to consider the thoughts at those links above and to google "guidelines letter to editor" and look at the guidelines at major publications.

The Best Predictor Of Future Behavior Is Past Behavior

That's one of those wise parenting expressions that may also be helpful as you consider who will earn your vote on Tuesday.

Here is a link to the members of the House of Representatives who were supportive of the ALS Registry Act as cosponsors several years ago.
http://capwiz.com/alsa/issues/bills/?bill=9776086&cs_party=all&cs_status=C&cs_state=ALL

Perhaps this information will be helpful as you make your decisions and exercise your right to vote.

If you know people who have participated in ALS advocacy day in Washington, you may be able to get some interesting insights from them on how they were received in their elected officials' offices and whether their modest requests for registry funding or ALS research received support. Advocacy day visits are where the rubber hits the road for ALS. Those expensive political ads with the Congressperson's family and dog and hugs mean nothing if you've ever been brushed off by a staffer who didn't want to listen. Those ugly ads (always with the most unflattering pictures) about gotcha voting histories mean nothing if you've ever had a good meeting with an elected official who listened and supported your modest requests for ALS research.

There are many important problems that our country faces. ALS is one that we don't face enough. Please consider ALS as you make your decisions and exercise your right to vote.

Voting Is A Right

Next week we get to exercise that precious right.

People with ALS have special challenges in getting to the polls and in marking ballots. ALS steals much from people, but it cannot steal that right to vote.

Last week I inquired of the PVA about voting rights for people with physical challenges. They were kind enough to send this very helpful response --

There are plenty of resources to help people to register and vote even if they have troubles with disability or a chronic condition.

First of all a person has the right to have a person of their choice in the voting booth with them. They are also allowed to take assistive technology into the booth if it helps them communicate and or cast the ballot. Poll workers in general are aware of disability issues and have been trained over the years, but you can still find a few "bad apples" who are not sensitive to the issue. Assertive self advocacy in a non confrontational way is always best at expressing your rights.

Please look at the below links to find out more info about accessible voting:

http://www.eac.gov/

http://www.aapd.com/

http://www.ada.gov/

http://www.ada.gov/votingchecklist.htm

Thanks to the Paralyzed Veterans of America for the help. Veterans have given much so that we might have the right to vote, and we all should remember that next Tuesday.

Watch The Video - This Is ALS

It races on and you can't stop it!

http://www.wthr.com/story/13373864/racing-team-member-fights-als-battle

Listen to the message carefully. He was fine in December. Fine. On top of the world and healthy.

This is ALS.

That Was The Week That Was

http://alsspreadtheword.blogspot.com/2010/10/this-should-have-been-huge-news-week.html

That's One Small Step For Man, A Giant Leap For Mankind

The U.S. National ALS Registry is open for business.

All people in the U.S. with ALS are encouraged to register themselves at https://wwwn.cdc.gov/als/AboutRegistry.aspx

It has been a long time coming. Perhaps some smart person will now be able to connect the dots. At least we are collecting them now!

Thanks to all who worked so hard to make this happen. It has been disrespectful of those who have died from ALS that we did not retain their clues. That changes today.

This Is Big News From the NFL and the NFLPA Regarding Players With ALS

From the Washington Post this afternoon --

http://views.washingtonpost.com/theleague/nflnewsfeed/2010/10/nfl-union-to-provide-coverage-to-retired-players-with-als.html

NFL, union to provide coverage to retired players with ALS

The NFL has expanded its coverage for former players under its dementia plan to provide benefits to retired players who suffer from amyotrophic lateral sclerosis, or ALS.

The league and the NFL Players Association agreed to the change and announced it Monday in a joint written statement."We are pleased to jointly expand this financial resource that will improve the quality of life for suffering former players and alleviate the financial drain imposed on their families by this terrible disease," the league and union said in their written statement.

According to the announcement, players will qualify for benefits without regard to causation, as with dementia benefits. Eligible players will receive as much as $88,000 annually for institutional care, as much as $50,000 per year for home care plus costs for certain medical services, equipment and medication, according to the announcement.

The NFL's plan for dementia benefits is called the "88 Plan" after former tight end John Mackey, a member of the Pro Football Hall of Fame. Mackey's wife Sylvia expressed her approval of the new benefits."I think it is absolutely wonderful and very deserved," Sylvia Mackey said by telephone. "I have had wives call me in the past and tell me their husbands were suffering from ALS and they could not understand why they were not covered. It is needed."

According to the announcement by the league and union, the plan has awarded $9.7 million toward the care of 132 former players since its inception in 2006.

Finally they are paying attention!

Here is our list of NFL players stricken with ALS. Please let us know if you are aware of others.

Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner

Perhaps It's Time To Fire Up Some Attitude!

How would it be to see 30,000 American wheelchairs sporting bumper stickers that remind everyone (and people will stare at bumper stickers on wheelchairs) that these folks have their marbles and will exercise their right to vote and are a force to be heard. Perhaps a big public display of attitude might be just what this country needs to start paying attention. Besides, those candidates pay a lot more attention the 51 weeks before an election than the week after.

...and if any legislator fluffs a constituent off at Advocacy Day, this would be a good sign for him or her to see as the wheelchair leaves.

It is time for some major attitude.

This Is Huge News From Canada

http://www.ctv.ca/CTVNews/Health/20101015/veterans-als-101015/

The Canadian Press
Date: Friday Oct. 15, 2010 8:36 AM ET
OTTAWA — The federal government is boosting support for veterans suffering from Lou Gehrig's disease.

Veterans Affairs Minister Jean-Pierre Blackburn is slated to announce later today that veterans suffering from amyotrophic lateral sclerosis, or ALS, can now receive disability benefits, treatments and home care support they may not have been eligible for before.

Sources tell The Canadian Press all known cases will be covered and families will be eligible for some support.

Prime Minister Stephen Harper told an interviewer last month that officials have been made aware of concerns over how veterans with ALS may be handled.

He said the issue would be addressed "in the not-too-distant future."

This is not only important to the veterans, but it also raises the problem on the worldwide radar. Now if someone would only do more studies on more nations' military veterans to see if increased ALS incidence is an American or North American phenomenon... or something else...

Check Out The ALS Association Logo On The Beautiful Dollar General Car

Thanks, Sarah Fisher Racing!

http://www.flickr.com/photos/sfrracing/5079317377/?ref=nf

As We Approach The Mid-term Elections, Please Ask Questions

Hundreds of Americans have made the ALS advocacy trip to Washington. Many have met huge accessibility and caregiving challenges to go there to ask for relatively modest federal funding for ALS research and for a registry.

Sometimes a Congressperson or Senator will sit down with the advocates in person and will really listen. Sometimes the appointment is delegated to a health assistant who listens and passes the message along. Sometimes the appointment is fluffed off by a health assistant who is watching the clock for lunch.

ALS is just one issue among many that voters need to consider, but it's an important one. It's a matter of life and death for the tens of thousands of Americans dealing with the quickly ticking ALS clock. It's a matter of respect for our veterans who risked their lives for us only to have a delayed, terminal disease as a fringe benefit for all they gave. It's a medical concern for every American. It's a respect-life issue. It's important.

As candidates spend more money on political advertising that we could ever wish for ALS research, please take a moment and ask some questions of candidates before you vote.

• Will you support medical research funding for ALS via the ALSRP program at the DOD?
• Will you support funding for the ASTDR ALS Registry at the CDC?
• Will you support the federal government working with us to get to the bottom of ALS in veterans?
• Will you support veterans' benefits for those with ALS?
• Will you meet with us when we come to Washington?
• Are you willing to listen and learn?

There is a big difference in attitudes about ALS and the role of the federal government, even within parties. There is a big difference in attitudes about meeting with average citizens and listening and learning.

This is a good time to ask candidates and evaluate before you cast that vote in November.

This is also a great time to ask people who have been to ALS Advocacy Day to share their experiences with individual legislators who might be running for reelection. That could be an important eye-opener.

How Many People Die From A Mysterious Disease

...never knowing that it was really ALS?

This is a must-read -- http://familialals.blogspot.com/2010/10/how-can-familial-als-be-secret-part-1.html?spref=tw

How many thousands of people die before a correct diagnosis? It's outrageous. Perhaps a perception of a disease being "rare" is one of those things that propagates itself.

ALS - A Fringe Benefit of U.S. Military Service or A Fringe Benefit of Any Military Service

... or of something in between?

The Canadian Prime Minister is on the case for his veterans with ALS http://www.globalnews.ca/money/Harper+vows+action+vets+with/3542115/story.html

The big question that is just begging for an answer -- Have there been any studies looking at the incidence of ALS in military veterans other than U.S. military?

Is the increased incidence an American phenomenon? It would seem that the answer to that question would yield huge clues as to possible causes of ALS.

Does anybody know? Anyone?

Have You Ever Wanted To Say Something To The FDA About Priorities and ALS?

Here you go! Public comment period --

http://www.fda.gov/AboutFDA/ReportsManualsForms/Reports/ucm227527.htm

Webex Session on ALS Registry Gives Some A for Q and Spawns More Q

https://alsa.webex.com/alsa/ldr.php?AT=pb&SP=MC&rID=60697332&rKey=7f48b8861c3e0651

Below are my questions and the answers to some that I think I heard on the transcript... plus some new questions that the transcript spawned --

· ALSA has published that your algorithms for mining the large administrative databases will identify 80-85 percent of ALS cases. Who are the people in the 15-20 percent who are not found via this process? I assume that there must be whole lot of people diagnosed with ALS who are somehow outside of Medicare, Medicaid, VA, etc. databases.

· One of the Achilles' heels of the many attempts at self-reporting over the years has been the inability to capture the death event in a timely and accurate manner. How does your process capture the death event? Registry data will be matched against the National Death Index periodically. People who fail to update their Quality of Life surveys on the web portal will be suspect, but the moderators did not indicate whether or how such lack of activity would be used to verify a death.

· Suppose a scientific study suggests a new environmental trigger possibility. Please describe the process you will use to expand the Registry to capture data on that possible trigger. Will it be nimble enough to do this quickly? Will additional requests for appropriations be needed to adapt?

· How much has been invested so far on the Registry project? About what proportion of that has been CDC employees’ time? … private-sector contractors?

· As I understand the process, it seems that you will be mining data in a number of administrative databases that are unique to the United States. Should we infer that the infrastructure built for this Registry will not be useful to be leveraged by other countries that might want to emulate the U.S. Registry? Is there any data standard or protocol that will enable scientists to pool data from the U.S. and other countries easily?

· If citizens of other countries are legal residents of the United States and are treated while living here, will their data be included? I could not understand the whether this question or the next question was the one that was asked on the call. The response indicated that the registry is for U.S. citizens only. Then a respondent mentioned that there were some technicalities regarding legal residents and that there would be followup on the question.

· If citizens of other countries are illegal residents of the United States and are treated while living here, will their data be included?

· If the people dealing with coordinating information in the various administrative databases and the online portal have a "is this the same person" question, will they be able to make phone calls to the individuals or sources of the administrative records to resolve the uncertainty, or are they stuck solely with the data in front of them. They don't anticipate a problem given the number of attributes that each database has on a patient.

· Many people with ALS aren't diagnosed until long after onset. Will the Registry data capture anything regarding patients' onset dates?

· Is it correct that the physician does not report anything directly to the Registry? My understanding is that the physician has nothing new to do and that cases will be identified passively from the codes on the normal medical records, Medicare billings, etc. Is that correct? ALS is not a reportable disease and therefore physicians are not required to report it as they are with other diseases such as cancers.

· What is the process for a scientist to get access to Registry data? Are the expenses of dealing with a lot of requests for data already built into the Registry budget?

· Will there be any routine publications of information from the Registry for the general public? Absolutely.

· Does the informal advisory group for the Registry still meet? If so, is it possible to coordinate meeting dates so that the ALS advocacy national meeting receives current information? It seems that in the past the advocates meeting in May has been almost a year behind on status information because of the advisory group meeting in June. Also, is there a reason why both ALS and MS surveillance were included in that advisory group?

And the transcript raised more questions in this enquiring mind --

• There were assurances that deceased people with ALS would be captured via the national databases but not via the web portal. How far back will the registry reach to find dead people in those national databases. If somebody was on Medicare in 1990 and died from ALS, will he or she be included in the registry?
• What would it take to make ALS reportable so that a physician diagnosing a case would simply be required to report it to the CDC?
• The call emphasized that information would be provided to patients. This causes some concerns that general information on ALS will be maintained on yet another website. Will the CDC and ALSA and MDA coordinate so that all three organizations might share content rather than having your taxpayer/donors create and maintain redundant or competing content?
• Are the educational materials on the patient page of the portal related to ALS in general or specifically to the ALS registry? Again, it seems appropriate that this be the go-to site for information on the ALS registry.
• On a similar conference call sponsored by the MDA a few months ago, we heard that the registry was ready to go as soon as OMB approval came through. On this call we heard that there are two more hurdles, the CDC security hurdle and the CDC deployment process. Are there any other hurdles we should know about?
• The state-based surveillance process described an abstract form for state health departments to supply to neurologists. Are neurologists required to respond to such requests?
• Could you please explain exactly what was launched with the soft launch of October, 2009?
• www.cdc.gov/als supplies a link to the NIH information on ALS. NIH materials have asserted for well over ten years that "As many as 20,000 Americans have ALS." When the CDC's ALS registry proves that many more than 20,000 Americans have ALS, will you be able to get the NIH to update their claim, please?
• A feedback feature on the web portal was mentioned. Will the feedback go directly to those responsible for the ALS registry or will it be routed through the general CDC "contact us" process?

Today's The Day To Ask And Learn

From the ALS Association --

ALS Registry Webinar
Tuesday, September 28, 2010
2:30-3:30 pm Eastern

We look forward to you joining The ALS Association for Tuesday’s ALS Registry webinar, which takes place, September 28, from 2:30 to 3:30 pm Eastern.

The webinar is designed specifically for people with ALS and their families and will provide the latest news on the Registry, including the launch of the Registry’s online web portal. The web portal will permit people with ALS to self-enroll in the Registry.

Limited Space
Information on how to access the webinar is below. However, space is limited to the first 200 participants so please plan to login early to secure your spot. The webinar will be recorded and made available to people following the presentation.

Submit Questions in Advance
The webinar will provide you with an opportunity to ask any questions you may have about the Registry and the web portal. Because of the large number of potential participants, we request that you submit your questions to us in advance of the webinar. This will help ensure that we and the CDC/ATSDR will be able to respond to as many questions as possible during the hour-long program. You may submit your questions to advocacy@alsa-national.org, under the subject line ALS Registry Webinar Question. You also will be able to submit questions during the presentation using the webinar’s “chat” function.

WHEN: Tuesday, September 28 at 2:30pm Eastern
WHAT: National ALS Registry Webinar

HOW to Access the Webinar Presentation:
To join the webinar and view the presentation on your computer, go to: https://alsa.webex.com/alsa/j.php?ED=140870002&UID=1134170547&PW=NMjMyMzU3YzU3&RT=MiM0.

Follow the online instructions, which will allow you to join the audio portion of the webinar through the receipt of a return phone call.

You also may join the audio conference by calling 1-866-699-3239 and entering:
Access code: 827 385 412
Meeting Password: Registry3


We look forward to your participation!

That's great that they've offered a chance to submit questions in advance and are recording the webinar for those of us who shouldn't be using up the 200 seats or are unable to make the call (yet are very interested in seeing a successful Registry). My submitted list of questions is below. I'll post responses as I learn them.

____________________________________________________
Thanks very much for asking for questions in advance of the call. Some of these you’ve seen before. I hope to learn the responses on the transcript or shortly after. Thanks very much.

· ALSA has published that your algorithms for mining the large administrative databases will identify 80-85 percent of ALS cases. Who are the people in the 15-20 percent who are not found via this process? I assume that there must be whole lot of people diagnosed with ALS who are somehow outside of Medicare, Medicaid, VA, etc. databases.

· One of the Achilles' heels of the many attempts at self-reporting over the years has been the inability to capture the death event in a timely and accurate manner. How does your process capture the death event?

· Suppose a scientific study suggests a new environmental trigger possibility. Please describe the process you will use to expand the Registry to capture data on that possible trigger. Will it be nimble enough to do this quickly? Will additional requests for appropriations be needed to adapt?

· How much has been invested so far on the Registry project? About what proportion of that has been CDC employees’ time? … private-sector contractors?

· As I understand the process, it seems that you will be mining data in a number of administrative databases that are unique to the United States. Should we infer that the infrastructure built for this Registry will not be useful to be leveraged by other countries that might want to emulate the U.S. Registry? Is there any data standard or protocol that will enable scientists to pool data from the U.S. and other countries easily?

· If citizens of other countries are legal residents of the United States and are treated while living here, will their data be included?

· If citizens of other countries are illegal residents of the United States and are treated while living here, will their data be included?

· If the people dealing with coordinating information in the various administrative databases and the online portal have a "is this the same person" question, will they be able to make phone calls to the individuals or sources of the administrative records to resolve the uncertainty, or are they stuck solely with the data in front of them.

· Many people with ALS aren't diagnosed until long after onset. Will the Registry data capture anything regarding patients' onset dates?

· Is it correct that the physician does not report anything directly to the Registry? My understanding is that the physician has nothing new to do and that cases will be identified passively from the codes on the normal medical records, Medicare billings, etc. Is that correct?

· What is the process for a scientist to get access to Registry data? Are the expenses of dealing with a lot of requests for data already built into the Registry budget?

· Will there be any routine publications of information from the Registry for the general public?

· Does the informal advisory group for the Registry still meet? If so, is it possible to coordinate meeting dates so that the ALS advocacy national meeting receives current information? It seems that in the past the advocates meeting in May has been almost a year behind on status information because of the advisory group meeting in June. Also, is there a reason why both ALS and MS surveillance were included in that advisory group?

Thank you.

Walks Aren't Just About Fundraising

They are a reason to talk about ALS in the media. They are a reason to talk about ALS with people who can help find the cure. They are about pulling together a vast community with this beast of a disease in common. They are about awareness.

Now That's A Car Sponsor!

Now That's A Hood!

Start Your Engines, Raise ALS Awareness!

On Saturday, September 25, the Nationwide Series at Dover will feature a car driven by ALS awareness. Actually Willie Allen is driving the car, but he is making his recent loss of his father to ALS drive him to raising ALS awareness.

http://www.alsa.org/news/article.cfm?id=1683

Fire up the television at 3 pm EDT and turn to ESPN2. Their coverage is always great, and we're hoping that the 05 Chevy is in front and on-camera at the finish! Thanks, Willie Allen.

Here Are Lights, Camera

Cover Story - Fox 45, Baltimore

We need action!

Quicken Loans Works To Quicken The Cure

Q4 2010 Is Just Around The Corner... Is The ALS Registry Finally Here?

Following is information from the ALS Association Washington, DC Advocacy Office:

ALS Registry Webinar
Tuesday, September 28, 2010
2:30-3:30 pm Eastern

We are pleased to invite you to participate in an interactive webinar on the National ALS Registry on Tuesday, September 28, 2010 from 2:30 to 3:30 pm (Eastern). Leaders from the Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention (ATSDR/CDC) will present the latest news on the Registry as the Agency prepares to launch the Registry’s online web portal, which will permit people with ALS to self-enroll in the Registry.

The webinar is designed specifically for people with ALS and their families to help you prepare for the launch of the web portal. Specifically, the webinar will include:
Background information and an update on the implementation of the Registry and web portal;
A preview of the online web-portal that PALS will access to enroll in the Registry; and
Information about The ALS Association resources that will be available to people with ALS and families, including online resources.
In addition, the webinar will provide you with an opportunity to ask any questions you may have about the Registry and the web portal.

WHEN: Tuesday, September 28 at 2:30pm Eastern
WHAT: National ALS Registry Webinar
HOW to Access the Webinar Presentation:
To join the webinar and view the presentation on your computer, go to:
https://alsa.webex.com/alsa/j.php?ED=140870002&UID=1134170547&PW=NMjMyMzU3YzU3&RT=MiM0

Space is limited to the first 200 participants so please plan to login early to secure your spot.

To join the audio conference: Call-in toll-free number (US/Canada): 866-699-3239 Access code: 827 385 412 Meeting Password: Registry3

If you have any questions, please contact the Advocacy Department at advocacy@alsa-national.org. Thank you!

Whoa... It's Not Over Til It's Over!

If you're from Alaska and have any interest in ALS, we encourage you to consider writing L-i-s-a M-u-r-k-o-w-s-k-i on your left hand and then writing her name in carefully on your ballot in the upcoming Senatorial election. Senator Lisa Murkowski has been a genuine mover and shaker for the ALS cause.

Note the red Strike Out ALS wristband in this pic from her announcement of her write-in campaign. She gets it. She has seen Lou Gehrig's Disease and she is willing to do something meaningful about it.

The Work Of ALS Advocacy Just Got A Whole Lot Harder

How often have we seen a person of influence taking the initiative to wear a Strike Out ALS wristband on national television? Once.

Senator Murkowski, thank you for all that you did behind the scenes to help us get a national ALS Registry and to help us get precious research funds for ALS.

Thank you. You're the best.

Ahh... The Sarah Fisher - Carey's Hope - Dollar General Story Is Hitting National Press!

http://www.usatoday.com/sports/motor/irl/2010-08-26-sarah-fisher-chicago-preview_N.htm?csp=usat.me

http://www.indycar.com/news/show/55-izod-indycar-series/39365-fisher-supports-ailing-team-member-notes/

Thanks, Sarah Fisher and Dollar General!

From a press release hot off the presses...

FISHER TO CARRY THE COLORS OF "CAREY’S HOPE" AT CHICAGO AND KENTUCKY
by Sarah Fisher on Tuesday, August 24, 2010 at 10:07am
Indianapolis, IN (Aug. 24, 2010)-Sarah Fisher, driver/owner of Sarah Fisher Racing (SFR), announced today that she will be sporting a new look on the rear wing of her No. 67 Dollar General Honda powered Dallara for the next two races of the IZOD IndyCar ® Series season, but for a very special reason.

In January 2010, Carey Hall, owner of Hall's Motorsports Refinishing (HMR), painter for Fisher's team in Indianapolis and fueler for SFR since its inception in 2008, was diagnosed with ALS. According tothe ALS Association, "Amyotrophic Lateral Sclerosis (ALS) is aneurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord. A common first symptom is a painless weakness in a hand, foot, arm or leg, which occurs in more than half of all cases. Other early symptoms include speech swallowingor walking difficulty."

Fisher hopes that by proudly displaying the Carey's Hope logo this weekend, she will raise awareness of the horrible disease and raise funds to help Carey and his family in their battle.

"Dollar General and SFR are one big team that works together and supports each other during times of need," said Rick Dreiling, Dollar General's chairman and CEO. "We stand behind Carey and his family during this challenging time and are committed to helping him win his battle with this disease."

"Carey and his family are a big part of the family here at SFR," said Fisher. "We are very proud of his encouragement and dedication towards getting through this disease and the inspiration he lends to all of us every day. Not only has he been a part of our team and our family, but the family he has will always be a part of our lives. I hope we can help him in a bigger way by getting the word out there and sharing with our sport the intensity and passion the people who support it, have."

In the SFR race shop, located on the Westside of Indianapolis, ALS wristbands are seen on almost every employee. "We're behind him all the way," said Fisher's crew chief, Anton Julian. "Carey has been a vital part of this organization and we're like a big family here. We'll do anything we can to help him through this battle."

Hall resides in Greenwood, Ind. with his wife, Carla, and three sons, Christopher (20), Colin (11) and Cruz (6). Please visit www.careyshope.com to make a donation or to purchase a Carey's Hope decal, t-shirt or an ALS wristband.

The NFL Speaks

From The Boston Globe by Kay Lazar --
http://www.boston.com/news/health/articles/2010/08/21/ex_patriot_hit_with_als_diagnosis/?page=full

The 41-year-old Alabama native is the 14th former National Football League player known to be diagnosed with the often-fatal and incurable nerve disorder since 1960. That’s a rate eight times higher than the rest of the adult male population.

So many former players have been diagnosed with ALS that the NFL is considering whether to provide benefits to help with their care, league spokesman Greg Aiello told the Globe yesterday.

...

Aiello declined to comment on whether the NFL believes Turner and the other players may have the ALS-like illness linked to repetitive head injuries. ALS “is obviously a very difficult disease and we want to help people,’’ Aiello said, “without respect to whatever the cause may be.’’

The NFL ALS List Grows Once Again

Kevin Turner has been diagnosed with ALS.
http://www.rollbamaroll.com/2010/8/20/1633213/former-alabama-running-back-kevin

The list --
Eric Scroggins
O.J. Brigance
Glenn Montgomery
Pete Duranko
Peter Demmerle
Steve Smith
Tony Proudfoot (CFL)
Bob Waters
Matt Hazeltine
Gary Lewis
Orlando Thomas
Wally Hilgenberg
Kevin Turner

ALS Communicators, Carpe Diem! Carpe Microphone!

http://alsspreadtheword.blogspot.com/2010/08/now-were-talking.html

BU and VA Work Together - It's About More Than Football

http://www.eurekalert.org/pub_releases/2010-08/bumc-buv081710.php

(BOSTON) – The Center for the Study of Traumatic Encephalopathy (CSTE) at Boston University School of Medicine (BUSM) and Department of Veterans Affairs (VA) announced today that they have provided the first pathological evidence that repetitive head trauma experienced in collision sports is associated with motor neuron disease, a neurological condition that affects voluntary muscle movements. The most common form of motor neuron disease is amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. The findings will be published in the September issue of the Journal of Neuropathology and Experimental Neurology (http://journals.lww.com/jneuropath).
...
"When we read reports about cases of the disease being linked to specific activities or experiences, such as the increased risk associated with military service, or this one regarding professional athletes, we are reminded of just how complex of a disorder ALS is. We're hopeful that this new work may shed light on potentially exciting new possibilities for biomarker and therapy development," said Steve Perrin, PhD, CEO and Chief Scientific Officer of the ALS Therapy Development Institute.
...

May I Have Your Husband's Brain?

HBO Real Sports --

Head Injuries

While Our Minds Are On Football And ALS Today

Here are some trips down memory lane...

http://als-advocacy.blogspot.com/2010/06/heres-horrible-football-fact.html

http://als-advocacy.blogspot.com/2010/01/orlando-thomas-much-younger-than.html

http://als-advocacy.blogspot.com/2009/10/tick-tick-tick.html

http://als-advocacy.blogspot.com/2008/09/since-our-minds-have-moved-to-football.html

Coincidence or occupational hazard?

Lou Gehrig's Disease Made The Times-Cast

and the story is moving up the most-emailed list.

This is an excellent opportunity to raise the noise level on the need for more ALS research and retention of patient data!

We Have A Conversation-Starter In The New York Times Today!

The New York Times has a very provocative article on head trauma and Lou Gehrig's Disease. I'm sure that thousands of readers are learning how little we really know about ALS and possible head trauma connections. Thank you, New York Times. Let the conversations begin. Let the research increase.

http://www.nytimes.com/2010/08/18/sports/18gehrig.html?hp

If You Can't Cure It, Then This Man Can Outsmart It!

This speaks volumes about the courage and ingenuity of a man with ALS --

ALSA Advocacy Call To Action

From an email from the ALSA Advocacy Department --

Advocate for a Treatment this August!

As Congress heads home for their summer recess (mid-August to mid-September), we need your help to double funding for the ALS Research Program (ALSRP) at the Department of Defense. This vital program is specifically designed to find a reatment for ALS.

The House Defense Appropriations Subcommittee recently voted to increase funding for the ALSRP to $10 million, a more than 30% increase over last year! While this is great news, much more must be done. Last year's funding of $7.5 million is expected to only fund four projects. And that’s why we need your help. We want the Senate to double funding to $15 million for the program when they return to Washington in September.

In order to accomplish this goal, ALS Association Chapters and advocates across the country are meeting with Senators throughout the recess to build support for the ALSRP. But your Senators need to hear from you! In fact, your outreach will send a loud and clear message to Senators that people with ALS all over the state need a treatment today. That we don’t have time to wait. That more funding is needed!

Please visit the Advocacy Action Center of our website (http://capwiz.com/alsa/home/) and urge your Senators to provide $15 million for the ALSRP in 2011. And contact them today. While the recess begins this week and will continue until mid-September, don’t wait to email your Senators. Contact them today and help find a treatment and cure for ALS!

Thank you!

Editorial comments:
Since we asked for $15 million for this DOD research from both Congresspeople and Senators on Advocacy Day on Capitol Hill in May, it appears that the House decided to give our DOD ALS Research Program request a $5 million haircut. They pick the strangest times to get frugal! When you write your Senators, please keep in mind that you can edit the template message however you think best to convey your expectations of your Senators ;-)

http://alsspreadtheword.blogspot.com/2010/08/what-is-wrong-with-this-picture.html

Tony Judt RIP - A Very Brave Man

http://www.time.com/time/nation/article/0,8599,2009254,00.html

Tony Judt, whose death was reported today, was a historian of the very first order, a public intellectual of an old-fashioned kind and — in more ways than one — a very brave man.


Please take a moment and Google "Tony Judt" and look at the News links.

ALS stinks.

A Tale Of Two Baseball Games

A Strike Out
http://alsboy.com/2010/08/02/eight-men-out/

A Home Run
http://www.youtube.com/watch?v=DM0C1Zz29LY
http://ko-kr.connect.facebook.com/ALSFlorida?v=app_2347471856
http://www.facebook.com/album.php?aid=227792&id=37228663022

Meet ALS, A Truly Evil Disease

Meet Father Patrick Rager...

http://www.catholicreview.org/subpages/storyworldnew-new.aspx?action=8516

Spur On Those Neurons

http://www.courier-gazette.com/articles/2010/07/30/news_by_readers/doc4c52e6b4e0ff9540257976.txt

We need encourage more smart young scientists to take up the challenge of a medical mystery -- ALS.

We Need Another Giant Leap For Mankind

41 years ago today...



41 years before that, in 1928, Lou Gehrig was an emerging baseball superstar. The letters "ALS" had never even crossed his mind.

Today those letters don't cross enough minds. Our nation needs a sense of urgency and innovation that will put an end to Lou Gehrig's Disease.

In the last 41 years since we sat glued to our televisions watching Neil Armstrong, over a quarter million Americans have died difficult deaths from ALS. Where is our national sense of urgency? Where is our innovation?

People Need To Know...

"People need to know that the disease is still out there, and maybe more common than previously realized."

http://www.northjersey.com/sports/golf/98807264_Hot_topic__Afflicted_reporter_is_a_voice_for_ALS.html

Amen.

Trust Me, Tom Watson Has Said More Difficult Farewells

Tom Watson's words, "Damn this disease, damn it," ring in every heart that has ever lost a loved one to ALS.

We loved watching you at Saint Andrew's, Tom, and we'll welcome you back home to continue our unfinished business against ALS.

Watch The Video

"ALS is not an incurable disease. It's an underfunded disease."

http://www.tristatetrek.com/html/ride_overview.php

With ALS, It's So Much DME, So Little Time

Letter from American Association for Homecare regarding competitive bidding --

http://www.aahomecare.org/associations/3208/files/AAHomecare%20Letter%20Supporting%20HR%203790_071510_FINAL.pdf

Hoosiers, Mark Your Calendars

We are very pleased that ALS TDI is bring its ALS Research 101 to Indianapolis on Tuesday, August 24. Especially encouraging is that the new leadership at the ALS Association Indiana Chapter is helping to get the word out to their patients and friends of this excellent opportunity to learn more about some of the current science going on at ALS TDI and to interact with a scientist. This is a model of two good organizations shaking hands and keeping the focus on their patients, and it's a refreshing approach.

If you are nearby, we hope to see you there. If you have friends and relatives in Indiana or know of any Hoosiers who might have an interest in science or ALS, please help spread the word.

The presentation will take place at the new Indianapolis Marion County Central Library (and it will also be a good opportunity to check out the digs. Now if we could only raise as much for ALS causes as that library cost!).



Here is the ALS TDI blurb --

The ALS Therapy Development Institute (ALS TDI) will be bringing its free ALS Research 101 seminar to Indianapolis on Tuesday, August 24th,. Dr. Steve Perrin, ALS TDI’s Chief Executive Officer and Chief Scientific Officer, will lead the presentation and discussion. Come learn more about this world-class non-profit biotech’s plan, approach and progress in discovering treatments for today’s patients.

Following a short presentation, Dr. Perrin will lead a discussion on the following topics of interest to people living with ALS today: ALS genetics, drug research, clinical trials, biologics, biomarkers, stem cells and caregiver support.

To register to attend, please visit www.als.net/als101 or contact Jessica Sullivan at jsullivan@als.net or 617-441-7238.

Women's College Hoops - ALS - Coincidence or Clue?

Mary Currie

http://www.thenewsstar.com/article/20100715/UPDATES02/7150311/1006/SPORTS

Melissa Erickson

http://seattletimes.nwsource.com/html/sports/2003545747_kelley29.html

Are there others?

Thanks, CVS

Just had a tweet come through from www.alstherapyalliance.org that CVS and customers raised over $4 million for ALS research in their recent point-of-sale campaign. They also raised a lot of awareness among their many customers. That is priceless.

Scientific Americans With ALS Take Science Into Their Own Hands

Here's an interesting new piece in Scientific American about ALS patients pursuing off-label use of readily available products --

http://www.scientificamerican.com/article.cfm?id=control-group-patients-ta

4 ALS Lives On With The Devil Rays

Period For Comments Re VA Disability for Vets With ALS

This just came through on twitter from @disabilitygov --

VA seeks comments on proposal to change schedule for rating disability for ALS or Lou Gehrig's disease http://bit.ly/dtTTjn

[Federal Register: June 23, 2010 (Volume 75, Number 120)]
[Proposed Rules]
[Page 35711-35712]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr23jn10-35]
=======================================================================
-----------------------------------------------------------------------
DEPARTMENT OF VETERANS AFFAIRS
38 CFR Part 4
RIN 2900-AN60

Schedule for Rating Disabilities; Evaluation of Amyotrophic
Lateral Sclerosis
AGENCY: Department of Veterans Affairs.
ACTION: Proposed rule.
-----------------------------------------------------------------------
SUMMARY: The Department of Veterans Affairs (VA) proposes to amend its
Schedule for Rating Disabilities by revising the evaluation criterion
for amyotrophic lateral sclerosis (ALS) to provide a 100-percent
evaluation for any veteran with service-connected ALS. This change is
necessary to adequately compensate veterans who suffer from this
progressive, untreatable, and fatal disease. This change is intended to
provide a total disability rating for any veteran with service-
connected ALS.
DATES: Comments must be received on or before July 23, 2010.
ADDRESSES: Written comments may be submitted through http://
www.Regulations.gov; by mail or hand-delivery to the Director,
Regulations Management (02REG), Department of Veterans Affairs, 810
Vermont Ave., NW., Room 1068, Washington, DC 20420; or by fax to (202)
273-9026. Comments should indicate that they are submitted in response
to ``RIN 2900-AN60-Schedule for Rating Disabilities; Evaluation of
Amyotrophic Lateral Sclerosis.'' Copies of comments received will be
available for public inspection in the Office of Regulation Policy and
Management, Room 1063B, between the hours of 8:00 a.m. and 4:30 p.m.,
Monday through Friday (except holidays). Please call (202) 461-4902
(this is not a toll-free number) for an appointment. In addition,
during the comment period, comments may be viewed online through the
Federal Docket Management System (FDMS) at http://www.Regulations.gov.
FOR FURTHER INFORMATION CONTACT: Thomas J. Kniffen, Chief, Regulations
Staff (211D), Compensation and Pension Service, Veterans Benefits
Administration, Department of Veterans Affairs, 810 Vermont Avenue,
NW., Washington, DC 20420, (202) 461-9725. (This is not a toll-free
number.)
SUPPLEMENTARY INFORMATION: VA proposes to amend its Schedule for Rating
Disabilities (38 CFR part 4) by revising the evaluation criterion for
ALS under diagnostic code 8017 in Sec. 4.124a, the schedule of ratings
for neurological conditions and convulsive disorders. Currently, the
schedule provides only a single criterion for ALS, a minimum disability
evaluation of 30 percent. We propose to remove this criterion and
replace it with a minimum disability evaluation of 100 percent. The
Secretary has authority to make this amendment pursuant to 38 U.S.C.
1155.
ALS, also known as Lou Gehrig's disease, is a motor neuron disease
that results in muscle weakness leading to a wide range of serious
disabilities, including problems with mobility. It often affects the
muscles that control swallowing, leading to the possibility of
aspiration (the inspiratory sucking of fluid into the airways) and
pneumonia. It eventually paralyzes the respiratory muscles, and the
most common cause of death in ALS is respiratory failure. ALS is a
terminal illness; the life expectancy of a person with ALS ordinarily
ranges from about 3 to 5 years after diagnosis. Fifty percent of
patients die within 3 years of diagnosis, about 20 percent live 5
years, and 10 percent survive for 10 or more years. See http://
www.neurologychannel.com/als/treatment.shtml; http://
www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359/
DSECTION=complications; and http://www.ninds.nih.gov/disorders/
amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm.
ALS is rated under 38 CFR 4.124a, diagnostic code 8017, which
currently provides a minimum disability evaluation of 30 percent.
However, the guidelines in 38 CFR 4.120 (Evaluations by comparison)
direct that disability from neurologic conditions be rated in
proportion to the impairment of motor, sensory, or mental function.
Therefore, any level of evaluation, including 100 percent, can
currently be assigned for ALS under diagnostic code 8017. However,
individuals with ALS have a rapidly deteriorating course of illness and
quickly reach a level of total disability. Providing a 100-percent
evaluation in all cases would obviate the need to reassess and
reevaluate veterans with ALS repeatedly over a short period of time, as
the condition worsens and inevitably and relentlessly progresses to
total disability. Therefore, we propose to change the minimum
evaluation for ALS from 30 to 100 percent. Although ALS may not be
totally disabling at the time of diagnosis or when VA compensation is
claimed for the condition, ALS is a seriously disabling, rapidly
progressive, untreatable, and fatal condition.
VA's schedule of ratings for neurological conditions and convulsive
disorders provides a 100-percent disability evaluation for certain
other motor neuron diseases that progressively lead to disability or
death. See 38 CFR 4.124a, Diagnostic Codes 8005 (Bulbar palsy), 8105
(Sydenham's chorea of the ``progressive grave type''), and 8106
(Huntington's chorea). Given that ALS is a rapidly progressing
neurodegenerative disease and that many of its disabling effects are
similar to other neurological disorders that VA rates at 100 percent,
we propose to compensate veterans with ALS similarly. The 100-percent
rating would ensure that veterans with ALS are evaluated adequately and
would eliminate any delay in reaching an appropriate level of
compensation as their disease rapidly progresses.
In addition, we propose to add a note to consider the need for
special monthly compensation, which will be quite a common need in
these veterans.
Paperwork Reduction Act
This document contains no provisions constituting a collection of
information under the Paperwork Reduction Act of 1995 (44 U.S.C. 3501-
3521).
Regulatory Flexibility Act
The Secretary hereby certifies that this proposed rule would not
have a significant economic impact on a substantial number of small
entities as they are defined in the Regulatory Flexibility Act (RFA), 5
U.S.C. 601-612. This amendment would not significantly impact any small
entities. Therefore, pursuant to 5 U.S.C. 605(b), this amendment is
exempt from the initial and final regulatory flexibility analysis
requirements of sections 603 and 604.
[[Page 35712]]
Executive Order 12866--Regulatory Planning and Review
Executive Order 12866 directs agencies to assess all costs and
benefits of available regulatory alternatives and, when regulation is
necessary, to select regulatory approaches that maximize net benefits
(including potential economic, environmental, public health and safety,
and other advantages; distributive impacts; and equity). The Executive
Order classifies a ``significant regulatory action,'' requiring review
by the Office of Management and Budget (OMB) unless OMB waives such
review, as any regulatory action that is likely to result in a rule
that may: (1) Have an annual effect on the economy of $100 million or
more or adversely affect in a material way the economy, a sector of the
economy, productivity, competition, jobs, the environment, public
health or safety, or State, local, or tribal governments or
communities; (2) create a serious inconsistency or otherwise interfere
with an action taken or planned by another agency; (3) materially alter
the budgetary impact of entitlements, grants, user fees, or loan
programs or the rights and obligations of recipients thereof; or (4)
raise novel legal or policy issues arising out of legal mandates, the
President's priorities, or the principles set forth in the Executive
Order.
The economic, interagency, budgetary, legal, and policy
implications of this proposed rule have been examined, and it has been
determined not to be a significant regulatory action under Executive
Order 12866 because it is unlikely to result in a rule that may raise
novel legal or policy issues arising out of legal mandates, the
President's priorities, or principles set forth in the Executive Order.
Unfunded Mandates
The Unfunded Mandates Reform Act of 1995 requires, at 2 U.S.C.
1532, that agencies prepare an assessment of anticipated costs and
benefits before issuing any rule that may result in the expenditure by
State, local, and tribal governments, in the aggregate, or by the
private sector, of $100 million or more (adjusted annually for
inflation) in any 1 year. This proposed rule would have no such effect
on State, local, and tribal governments, or on the private sector.
Catalog of Federal Domestic Assistance Numbers and Titles
The Catalog of Federal Domestic Assistance program numbers and
titles for this proposal are 64.104, Pension for Non-Service-Connected
Disability for Veterans, and 64.109, Veterans Compensation for Service-
Connected Disability.
Signing Authority
The Secretary of Veterans Affairs, or designee, approved this
document and authorized the undersigned to sign and submit the document
to the Office of the Federal Register for publication electronically as
an official document of the Department of Veterans Affairs. John R.
Gingrich, Chief of Staff, Department of Veterans Affairs approved this
document on June 17, 2010 for publication.
List of Subjects in 38 CFR Part 4
Disability benefits, Pensions, Veterans.
Dated: June 18, 2010.
William F. Russo,
Director of Regulations Management, Office of the General Counsel.
For the reasons set out in the preamble, 38 CFR part 4, subpart B,
is proposed to be amended as set forth below:
PART 4--SCHEDULE FOR RATING DISABILITIES
1. The authority citation for part 4 continues to read as follows:
Authority: 38 U.S.C. 1155, unless otherwise noted.
Subpart B--Disability Ratings
2. In Sec. 4.124a, revise diagnostic code 8017 to read as follows:
Sec. 4.124a Schedule of ratings--neurological conditions and
convulsive disorders.
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Rating
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* * * * *
8017 Amyotrophic lateral sclerosis............................ 100
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Note: Consider the need for special monthly compensation.
* * * * *
[FR Doc. 2010-15169 Filed 6-22-10; 8:45 am]
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