ALSVet

ALS Association Helps to Fast Track Disability Claims

2008-10-29T21:40:00.004-04:00

The ALS Association secured another victory in Washington, DC this week as the Social Security Administration (SSA) implemented a new initiative designed to speed disability applications for people with ALS and other serious conditions.

Under the new initiative, called Compassionate Allowances, SSA has included ALS on a list of conditions that automatically qualify for expedited reviews. When fully implemented, SSA estimates the initiative will shorten review times to an average of just six to eight days.

The ALS Association has strongly supported this initiative since it was first proposed in July 2007 and The Association testified in support of Compassionate Allowances during a hearing convened by SSA Commissioner Michael Astrue in December, 2007. (Our testimony is available on the Social Security website, here: http://www.socialsecurity.gov/compassionateallowances/TheALSAssociation(Steve%20Gibson)12-4-07.pdf.)

ALS Advocacy Improves Patient Services
The implementation of Compassionate Allowances is the latest example of how The ALS Association’s advocacy efforts have improved patient services, helping people with ALS access disability and Medicare benefits worth millions of dollars each year. Through our previous efforts, SSA established a presumptive disability ruling and included ALS on the Listing of Impairments, both of which have streamlined disability applications and enabled people with ALS to access disability benefits months or even years sooner than before. Our advocacy also led to the elimination of the 24-month Medicare waiting period for ALS, the only time this law has ever been amended.

Join our Fight
Successes like this new initiative, the enactment of the ALS Registry Act, new rules for veterans’ benefits and funding for ALS research could not have been achieved without the support of advocates across the country. So please encourage everyone you know to join our fight by becoming an ALS Advocate here: http://capwiz.com/alsa/mlm/verify/.

If you have any questions about this Update, please contact the Advocacy Department at advocacy@alsa-national.org or toll-free at 1-877-444-ALSA.

New Website for ALS Awareness

2008-10-26T10:50:00.004-04:00

Based on the post below, I started a new website focused on raising awareness of ALS. It is in the early stages and I'm sure things will change as we learn but the premise is to focus the ALS community on common awareness goals is a coordinated fashion.

There are currently 60 members and I would like to see at least 2000 before the end of the year. My intent is to utilize the ideas and creativity we have in the community in order to accomplish goals. Initially I see the goals as being small but growing as our membership and experience grow. Please stop by and give us a look and if you think you can help please register and contribute.

The name is currently Advocate4ALS although we are in the process of picking a new name centered around awareness. Check us out at http://www.advocate4als.org.

Well now what?!

2008-10-08T21:54:00.004-04:00

We won't have to get our power chairs from the lowest bidder, the ALS Registry is passed, veterans with ALS are presumed service connected and the budget cycle is done. I guess there's nothing left to do. Wrong answer.

Its breast cancer awareness month. Guess how I know that. There are pink ribbons everywhere, its has been on TV twenty times a day, its in the news and its the same month every year. You know what?! We should have that for ALS! Oh, we do? That's right in May. How many people other than PALS and CALS do you think know that?

A week into the month and I've seen at least a half dozen survivors on TV. Don't get me wrong I respect the work they've done and what they've endured. If anything I think we should learn from them. I feel the ALS Association has done an excellent job advocating for ALS with the government and have made great strides in PALS rights and funding. However because of that focus which has been required getting the word out to the public has suffered. I believe they are lacking resources as in people to attack both fronts. I do however have what I believe could be a solution.

We as a community have proven again and again that we are a force to be reckoned with. We have individuals whose creativity in spreading knowledge of ALS rivals that of da Vinci. What we tend to lack is focus.

Let's take a look at a hypothetical example. Let's say someone posts and idea on the PatientsLikeMe forum about getting Oprah to do a show about ALS. That's a pretty good idea so lets say a few hundred people email the Oprah show, "Hey Oprah, love the show. Any chance you can do one on ALS?" From past experience that's a no-go.

Now let's assume we've gotten our ducks in a row and come up with a show idea and some substantial meat and potatoes to go along with it. This isn't rocket science and is something I am certain a few members of the community could put together in nothing flat in a chat room or forum. This would be written up so that all people would have to do is cut and paste. If we're organized getting a tenth of the ALS population shouldn't be to difficult which means 4,000 people. Now if we get 4,000 people and their friends and family to email the same letter with substantial ideas do you think we might get a shot?

That is just one example there are many other applications such as the CVS fundraisers or American Legion involvement. I see this taking shape in a community run web page which will house ideas, events and works in progress. It could give a central location for people to sell their ALS fund raising goods such as bracelets or calendars.

I see a core group of individuals to act as a steering committee. Their responsibility is to focus the community as a whole on a given task. This should be done in cooperation with ALSA but would mean that one person could act as liaison, pass that information to the steering committee which then acts on and shares with the community. The community as a whole decides the best way to proceed which the steering committee then finalizes and gives to the community.

I have a domain available and could have a web page together along with a forum in short order. My question is what do you think? Also are their more than one or two people who read this but mostly what do you think and would you support such an endeavor? Please comment and tell your friends.

2008-09-26T12:43:00.001-04:00

ALS Registry Act on its way to President's Desk!

A few minutes ago, the United States House of Representatives passed the ALS Registry Act!! The legislation now heads to President Bush, who is expected to sign it into law.

Thank you to everyone for your tireless efforts to reach out to Congress. We are just one step away from realizing one of the most significant accomplishments for people with ALS and their families. A national ALS patient registry at the Centers for Disease Control and Prevention will collect information leading to the cause, treatment and cure of ALS. You should be proud of your efforts. We have made a difference!

The building blocks for a national registry are underway and the ALS Registry Act will enable us to take the next steps in building the registry and advancing the fight for a treatment and cure. Again, thank you!!

We will let you know once the President signs the bill into law. In the meantime, please make sure to thank your Senators and U.S. Representative for their support. Let them know that their efforts are appreciated and have not gone unnoticed. Sample letters you can send are available in the Advocacy Action Center of our website, here.

Thank you!

Victory

2008-09-23T11:48:00.001-04:00

Victory!
Senate Passes the ALS Registry Act

A few minutes ago, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference!

The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law.

Congratulations to everyone!

ALS Registry through Senate

2008-09-23T11:40:00.003-04:00

As I watched CSPAN2 this morning at 11:09 AM EST the ALS Registry passed the senate floor by unanimous consent. There has apparently been an amendment which I haven't yet been able to find. If that is the case it will have to be returned to the House for review. This is however a huge step in passing the registry considering it passed the house initially by a 411 - 3 vote.

VA to Grant Benefits to All Veterans with ALS

2008-09-22T22:12:00.004-04:00

It's Official!!!
VA to Grant Benefits to All Veterans with ALS

We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military.

This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed!

ALL Veterans with ALS Eligible for Benefits

This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.

Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.

The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.

Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.

Although this is excellent news for right now we must focus on the ALS Registry. If all goes well we'll have two things to celebrate tomorrow so stay focused.

S. 3297 Being Discussed Now!!

2008-09-22T15:43:00.003-04:00

S. 3297 is being discussed on the senate floor right now. The idiot from Oklahoma doesn't get in until around 7 PM. It can be watched on CSPAN2 or online at: http://www.c-span.org/watch/cspan2_wm.asp?Cat=TV&Code=CS2

Registry Update

2008-09-19T14:17:00.007-04:00

Urgent Registry Update

Thanks to everyone for contacting their Senators in support of S. 3297 and the ALS Registry Act. Our supporters in the Senate who have asked us to activate the ALS community are reporting that your outreach is being heard on Capitol Hill! We want to give you the latest update on what is a very fluid situation.

At this time, the Senate will not be voting on S. 3297 today. However, it's possible that a vote on S. 3297 and the ALS Registry Act could occur at any time over the coming days, including early next week.

Senators are in the process of determining how they will proceed on a wide range of issues, such as the financial crisis, before Congress adjourns for the November elections, which could be as soon as next Friday, September 26. Therefore, the schedule is in flux and can change in just a matter of hours.

Nevertheless, it's important that our message already is being heard on the Hill. Given the rapidly changing schedule, we want to make sure that we do not miss any opportunity to pass S. 3297 and the ALS Registry Act this year. So your outreach today and over the next week is still critical. Keep up the great work! Letters you can send to your Senators will continue to be available on the Advocacy Action Center of our website here, http://capwiz.com/alsa/home/.

We will keep you updated on the latest news. Since the Senate may act at any time next week, it may not be possible to provide significant advance notice. So again please keep an eye out for our Action Alerts.

Your outreach is making a difference!

It's Now or Never

2008-09-18T22:03:00.005-04:00

ALS Registry Vote Possible Friday!

As early as Friday, September 19, the Senate may hold a critical vote on S. 3297, the Advancing America's Priorities Act, which includes the ALS Registry Act. This may be the first of potentially several votes on S. 3297. However, Friday's vote likely will determine whether the Senate passes the ALS Registry Act this year!

Therefore, please contact your Senators immediately and tell your friends, family, colleagues - and everyone you know - to do so as well. Urge your Senators to vote YES on S. 3297. Even if you already have contacted your Senators this week, your outreach is still needed. We want to fill Senator's inboxes and make it clear that they must pass the ALS Registry Act this year. People with ALS don't have time to wait.

Letters you can personalize and send to your Senators are available in the Advocacy Action Center of our website, here: http://capwiz.com/alsa/home/. If you don't know the names of your Senators, don't worry. The Advocacy Action Center automatically will identify them for you and enable you to contact them directly from the site.

ALS Association, Key Senators Meet with Senator Coburn

Over the past few days Senator Harry Reid (D-NV) and our supporters in Congress once again have reached out to Senator Tom Coburn (R-OK) in a last ditch effort to convince him to release his hold on the ALS Registry Act and S. 3297. In fact, just a few hours ago, The ALS Association joined Senator Lisa Murkowski (R-AK) for a face to face meeting with Senator Coburn. Senator Murkowski shared the story of her cousin whose husband is living with ALS and once again urged Senator Coburn to join us in providing hope and help to thousands of Americans fighting this horrific disease. Unfortunately, Senator Coburn continues oppose this bill. And that's why it's so important that you contact your Senators TODAY!

Don't Be Fooled

As the Senate prepares to vote on S. 3297, we anticipate that some may try to muddy the waters by raising issues such as energy, the cost of the legislation, and the financial crisis - some of the same issues that were raised when the Senate voted on S. 3297 in July. Tell your Senators not to be fooled by these tactics. They are just excuses for voting against people with ALS. Tell your Senators that their vote will demonstrate whether they support their constituents with ALS or whether they support Senator Coburn. And make sure you let them know that you'll be watching how they vote!

So again, please contact your Senators NOW! Together, we can pass the ALS Registry Act this year!

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

Let's Pass the ALS Registry Act

2008-09-17T08:54:00.007-04:00

Let's Pass the ALS Registry Act

With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.

Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!

In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!

Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.

Contact your Senators TODAY!

If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at advocacy@alsa-national.org.

The Importance of Voting and ALS Advocacy

2008-09-15T13:55:00.003-04:00

Our friends over at ALSAdvocacy blog have a great post about voting. Head over and take a look and make sure to watch the video.

http://als-advocacy.blogspot.com/2008/09/on-importance-of-voting-and-als.html

Patience or the Lack Thereof

2008-09-15T13:43:00.004-04:00

With the announcement made, perhaps prematurely, that the VA intended to make ALS a disease which grants presumptive service connection veterans with ALS rejoiced. Now with two months gone by and no news the rumor mills are churning full blast. I've heard things that haven't been done in the history of the VA. I've heard political underpinnings. I've heard heard comments concerning Ouiji boards.

I've gotten confirmation from a second source that the move to make ALS a disease which grants presumptive service connection is still alive and well. At last report it is in the hands of the Office of Management and Budget and they are required by law to submit an answer by mid November. Now I will admit that the answer may be to make changes and those changes will further delay the process but that is where we stand. Until the decision is made one way or the other there is no use making suppositions.

S. 1382 ALS Registry Act

2008-09-04T10:35:00.006-04:00

I read an article online yesterday that simply boggles my mind. The article was from The Washington Post and had this headline U.S. to Grant $1 Billion Aid Package to Georgia. Foreign policy is not my strong suit so I won't even stipulate on the pros and cons of this whole situation. I do believe that we should help those less fortunate and will leave it at that. As I read through the article there were a few things that simply don't make sense to me.

The aid will be divided into two phases, Rice told reporters at the State Department: $570 million from fiscal 2008 and 2009 funds, and $430 million she said she hopes the next administration will approve.

Looking at the text of S. 1382 on the Library of Congress you can find the following:

There are authorized to be appropriated to carry out this section, $2,000,000 for fiscal year 2008, $25,000,000 for fiscal year 2009, and $16,000,000 for each of fiscal years 2010 through 2012.'.

Now doing some quick math shows us that the entire ALS Registry over a 5 year period costs a total of $75 million. The complaints I've heard from that idiot in Oklahoma are about the money. It seems to me that $570 million in a single year would fully fund the ALS Registry for a five year period several times over.

Further on in that same article I found this:

The assistance plan, assuming it is fully funded by this administration and the next, would exponentially increase U.S. aid to Georgia, which totaled about $64 million in fiscal 2008. Before last month's hostilities, Georgia's economic growth rate was among the highest in the region, with a gross domestic product of $10 billion last year, compared with $4 billion in 2003.

About a third of the U.S. assistance in 2008 was spent on training and equipping the Georgian military to meet NATO standards and to allow Georgia to continue contributing troops to the U.S.-led coalition in Iraq.

We spent $20 million to train and equip Georgian troops but we can't fund the ALS Registry? That got me wondering. I found this website called U.S. Overseas Loans and Grant [Greenbook]. Using this site you can see the amount spent in foreign aid by country and program through 2006. Considering we spent $20 million to train and equip soldiers in Georgia I thought I'd take a look at some of the other countries. Below is a list of the countries and the amount of money we provided (for military assistance only) in millions of dollars as of 2006 which could fully fund the ALS Registry over a five year period.

Remember this was as of 2006 so there may be some changes here but isn't it astonishing that we can spend a total of $11.5 billion in 2006 on military aid to 8 countries which live in the news yet we can't afford $0.13 per taxpayer per year for 5 years. Isn't it astonishing that we can spend $11.5 billion to equip and train foreign soldiers yet we can't spare $75 million to aid our own in their fight for their lives.

Please contact your Senators and urge them to get S. 1382 ALS Registry Act to the floor for a vote. Contact your Representatives and urge them to cosponsor H.R. 5454.

ALS Service Connection

2008-09-03T11:56:00.003-04:00

On June 12th this year I had the honor of testifying before the House Subcommittee on Disability Assistance and Memorial Affairs concerning H.R. 5454. My testimony is available here. The purpose of H.R. 5454 is to make ALS a presumptive service connected disease for all veterans. This means that any veteran diagnosed with ALS would be granted service connection and all benefits.

Shortly after that hearing there were rumblings that Dr. James Peake the Secretary of Veterans Affairs was going to add ALS to the presumptive conditions. Then on July 14th it was released by Representative Henry Brown and Senator Lindsey Graham that his was in fact true. That release also stated that the changes would take effect August 1st. Well August 1st came and went and there was no news concerning service connection and the rumor mill took off.

Although I can't claim first hand information I can say that my sources are reliable. As such I would like to help in dispelling some of the rumors. The movement to make ALS a condition warranting presumptive service connection are still ongoing. The intention is to make this a regulatory statement meaning that it will be included in United States Code and as such it will be binding. It is due to that in part that the August 1st date passed us by with no word. Making regulatory changes requires approvals and time. Although no dates have been given the process is still moving along.