ALS support is partisan??

[BlsdMama]

So, Senate Bill 1813, Act for ALS - the states not fully supporting seem to be mostly conservative? Why is this partisan?
 

https://nonprofit.maps.arcgis.com/apps/instant/sidebar/index.html?appid=54c3711650404474824c7194b4fbaf3b&center=-97.3739%2C38.4355&level=3&fbclid=IwAR2VsYFEPLjI3SIPxu64Xlr-CkvroRrltegL_CS6l2vzGdSB0nCaK6jbvBA

Ag (Midwest) is more heavily affected. Military personnel are more affected. As an Iowan, why are neither of my senators supportive? I was part of a group call with Senator Grassley’s office and there was zero commitment for support? I’m so confused, hurt, and shocked. It was the previous president who pushed the Right to Try through - this gives it teeth! Someone explain?

[BlsdMama]

I’ve gone ahead and contacted the local newspaper and television stations for a human interest. Made a video to persuade family and friends to contact our senators. Any other ideas?

If you’re so inclined -

It’s eight minutes. 

[Ottakee]

2 minutes ago, BlsdMama said:

So, Senate Bill 1813, Act for ALS - the states not fully supporting seem to be mostly conservative? Why is this partisan?
 

https://nonprofit.maps.arcgis.com/apps/instant/sidebar/index.html?appid=54c3711650404474824c7194b4fbaf3b&center=-97.3739%2C38.4355&level=3&fbclid=IwAR2VsYFEPLjI3SIPxu64Xlr-CkvroRrltegL_CS6l2vzGdSB0nCaK6jbvBA

Ag (Midwest) is more heavily affected. Military personnel are more affected. As an Iowan, why are neither of my senators supportive? I was part of a group call with Senator Grassley’s office and there was zero commitment for support? I’m so confused, hurt, and shocked. It was the previous president who pushed the Right to Try through - this gives it teeth! Someone explain?

I don't know anything about this bill but conservatives in general seem to be less supportive of social services matters.

[Katy]

Because they think your health care is your problem. It’s completely ridiculous.

[Ottakee]

Very well done video.  I know 2 who have had ALS.  My senators are both for it according to the chart you linked.

Sadly, Republicans arent as big into big pharmacy (even though it takes money and incredibly smart people to develop new drugs) or more public health stuff.

I hope your video goes viral

[BlsdMama]

I have no issue with private insurance… heck, let me fundraise for it. 🤷🏼‍♀️ But this concept that I can’t get to a trial… 

Expanded access! This is what we need. So, I can’t participate in a trial because I’m too slow. Others can’t get in because they’re too fast - low ALSFRS scores. Then we die like flies. Open up the trials! It’s pretty obvious - if we reverse or plateau? It works. 

[MooCow]

My senators are for it. Can we still contact Grassley and the other one if we aren't residents of Iowa?

[ealp2009]

Wow! Thanks for sharing.   I learned more about ALS than I knew before.  Well done.  

[Grace Hopper]

If you want to garner support, make a version of your video for TikTok (I think 3 minutes at most?). 
 

Add a lot of hashtags. In your comments  and/or bio include a link to this longer version on YouTube, Facebook and/or Instagram. 
 

Well done and best wishes for getting the attention of the right people!

[katilac]

1 hour ago, Katy said:

Because they think your health care is your problem. 

This. 

It's spending money on healthcare. If a certain politician doesn't usually support spending money to improve healthcare, I wouldn't expect them to support this. 

[fraidycat]

I hope you are able to gain support and get the senators inundated with calls and emails.

We lost my uncle to ALS in 1996. It's such a terrible disease. 

[Spryte]

I agree that it’s about spending on healthcare, which is partisan, unfortunately. I’m sorry.

I hope your video absolutely becomes viral, and creates a lot of momentum and support!

[TheReader]

I wasn't even aware of this bill being out there. Watching the video and will be contacting my Senators and Congressmen. Thank you for sharing about it. 

[Eos]

10 hours ago, Grace Hopper said:

If you want to garner support, make a version of your video for TikTok (I think 3 minutes at most?). 
 

Add a lot of hashtags. In your comments  and/or bio include a link to this longer version on YouTube, Facebook and/or Instagram. 
 

Well done and best wishes for getting the attention of the right people!

Seconding this.

[Granny_Weatherwax]

My heart breaks for you and I will contact everyone I know in Iowa. 

I hope these two senators change their minds.

[Granny_Weatherwax]

I've linked your video on my facebook page and am asking all Iowans I know to contact them.

Is there anything we can do as non-Iowans?

[Eos]

15 minutes ago, Granny_Weatherwax said:

My heart breaks for you and I will contact everyone I know in Iowa. 

I hope these two senators change their minds.

Something I learned doing political advocacy is that politicians really only listen to their in-state constituents, but especially to their own voters.  Finding people to write, call, and speak out on social media who voted for your Senators and support this legislation is your best hope, @BlsdMama, though I agree with the TikTok suggestion above to bring outside pressure and get it picked up at the national level.

Edited December 16, 2021 by Eos

[OH_Homeschooler]

I live a mile from Iowa and my job is located there. I shared on Twitter and tagged the wonderful senators. Hopefully some of my Iowa Twitter friends will see and share as well. 

[chiguirre]

13 hours ago, MooCow said:

My senators are for it. Can we still contact Grassley and the other one if we aren't residents of Iowa?

You can, but they won't pay any attention to you. That's not them being evil, it's just that the only people who really matter when they decide what position to take are their constituents (unless you want to write a 5 figure check to their PAC).

[QueenCat]

Sadly, it's that way for most health-related issues. 

[Fritz]

I am so sorry. I don't live in Iowa but will contact your Senators.

Does the Right to Try not apply for your situation?

https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/right-try

[Pawz4me]

It seems to me there's a big, glaring difference in Right to Try and in the proposed Senate Bill 1813.

As I understand it (which I admit may not be entirely correct) the Right to Try means patients can try experimental/not yet approved by the FDA treatments IF they can get the manufacturer to provide them (which AFAIK they often will). So zero cost to the government.

OTOH it appears that Senate Bill 1813 requires investment  by the government --

Quote

This bill establishes grant programs to address neurodegenerative diseases, such as amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig's disease), and contains other related provisions.

The Department of Health and Human Services (HHS) shall award grants to eligible entities to facilitate patients' access to investigational drugs that diagnose or treat ALS. The Food and Drug Administration (FDA) shall award grants to public and private entities to cover the costs of research and development of drugs that diagnose or treat ALS and other severely debilitating neurodegenerative diseases.

HHS shall also establish the Public-Private Partnership for Neurodegenerative Diseases between the National Institutes of Health, the FDA, and at least one eligible entity (generally, an institution of higher education or a nonprofit organization). The partnership shall support the development and regulatory review of drugs that address ALS and other rare neurodegenerative diseases.

The FDA shall publish on its website a five-year action plan for fostering the development of drugs that improve or extend the lives of people living with rare neurodegenerative diseases.

Not wanting to spend money on anything beyond the common defense/the military is and always has been the staunch belief of one political party. I don't think it has anything at all to do with ALS directly. It's just the same partisan divide that's there for any/all health care spending.

When it comes to the health of our citizens a certain political party seems to endorse a kind of prosperity gospel point of view. It seems to be their opinion that if you're sick it's because you did something wrong. If you can't afford your own health care -- well, again, obviously you must have done something wrong.

I'm sorry, @BlsdMama. 

[WildflowerMom]

K, I just wrote to the senator in my state (Georgia) who is not yet a 'yes' vote.   I sent him your video.    Hopefully he'll declare as 'yes' shortly.   
 

 

[KungFuPanda]

God forbid we have to buy one or two less drones to help sick countrymen. The thing about these neuro degenerative diseases is if we can just make progress and come up with a treatment for ONE of them, it could possibly unlock the secret to treat ALL of them. It’s HARD living with a terminal, degenerative disease. It’s HARD trying not to be jealous of moms whose kids only have diabetes or people who only have cancer because SOME of them make it out alive. It’s disgusting how many politicians believe that their job is to keep their job and not to improve the lives of their constituents. 
 

@BlsdMamayou are my hero and I hope you get your Christmas wish. 

[Idalou]

I think there's plenty blame to spread to Democrats, too. Chuck Schumer, another dem from Maryland, and both dems from Virginia are still undecided. This is a no brainer.

And a dem from Colorado and also Oregon are somehow still undecided

Edited December 16, 2021 by Idalou

[Scarlett]

16 hours ago, Katy said:

Because they think your health care is your problem. It’s completely ridiculous.

I think that sums it up.

[WildflowerMom]

26 minutes ago, Idalou said:

I think there's plenty blame to spread to Democrats, too. Chuck Schumer, another dem from Maryland, and both dems from Virginia are still undecided. This is a no brainer.

And a dem from Colorado and also Oregon are somehow still undecided

Yes, the senator I wrote is definitely a Dem.    
 

Frankly, nearly all national level politicians are complicit in the healthcare debacle in this country.   R and D, both.  🤮   They do not care one iota about the people, only about their career as career politicians.   

[Sneezyone]

1 hour ago, Idalou said:

I think there's plenty blame to spread to Democrats, too. Chuck Schumer, another dem from Maryland, and both dems from Virginia are still undecided. This is a no brainer.

And a dem from Colorado and also Oregon are somehow still undecided

Undecided often means they have no idea what the bill is about, not that they are opposed to the bill or even, philosophically, to increased healthcare/research spending. I'd never even heard of this bill until it was mentioned here. That's often the case with niche legislation. It usually fares better when included with or tagged onto other must-pass legislation but that's what lobbyists facilitate. I am certainly not opposed to this tho and I hope it passes. I wrote to both of my (undecided) senators to ask about their position on the bill. As Pawz said, this isn't about general funding for treatment or research but specific assistance/grants for those struggling right now. Kinda like disaster funding only less direct. Military vets have access to VA assistance including home health/assistance, transportation, etc. so this is VERY targeted and niche spending.

Edited December 16, 2021 by Sneezyone

[DreamerGirl]

@BlsdMama You are so eloquent, brave and amazing.

I wish you go viral.

I do not pay attention to a lot of news right now, but I shall send an email/call my senator.

[MercyA]

Kelly, I haven't involved myself in the political process in probably over a decade, but I just emailed my one undecided Senator and urged him to support the bill. 

I can think of few things more important or urgent than helping fellow Americans who are ill or disabled.

You are amazing and I admire you so much. ❤️

[Paige]

Thanks for sharing. I've lost two family members to ALS and since they had the genetic variant, we're always worried someone else will pop up with it. I've saved the page you linked so I can call my senators tomorrow. I'll also share with my extended family who I know will be supportive. I hope it passes and I hope you stay as well as possible for as long as possible!

 

[Loowit]

You video is very powerful and brave.

I sent messages to my senators.

[historically accurate]

19 hours ago, BlsdMama said:

 

I am in a state where both senators have stated their support for it - I sent them thank yous. I shared your video on FB and urged my friends and family, many of whom live in states where 0 or only 1 of the senators have supported it, to contact their senators. 

I hope all 100 senators get their act together and pass it quickly!

[Idalou]

2 hours ago, Sneezyone said:

Undecided often means they have no idea what the bill is about, not that they are opposed to the bill or even, philosophically, to increased healthcare/research spending. I'd never even heard of this bill until it was mentioned here. That's often the case with niche legislation. It usually fares better when included with or tagged onto other must-pass legislation but that's what lobbyists facilitate. I am certainly not opposed to this tho and I hope it passes. I wrote to both of my (undecided) senators to ask about their position on the bill. As Pawz said, this isn't about general funding for treatment or research but specific assistance/grants for those struggling right now. Kinda like disaster funding only less direct. Military vets have access to VA assistance including home health/assistance, transportation, etc. so this is VERY targeted and niche spending.

 This bill has been talked about a lot with big name democrats on Twitter, from activists to politicians to journalist types to people with ALS. These legislators are aware, I have no doubt.  They may be undecided, but they know.

[Sneezyone]

1 minute ago, Idalou said:

 This bill has been talked about a lot with big name democrats on Twitter, from activists to politicians to journalist types to people with ALS. These legislators are aware, I have no doubt.  They may be undecided, but they know.

Yeah, that doesn’t mean they all know. Some staffers take issues under their wing and shepherd them through. This is not a high profile, national issue that’s common knowledge on the hill or one that has broad support b/c it’s a very niche issue (like naming a local library or park, only this has a fiscal impact, albeit negligible). I get the impact on some people is real and I think folks need help and whatnot. I’m sure it’s very well known in related interest groups/circles but also think it’s reasonable for legislators of all stripes to have questions and be unsure. I feel the same way about the Death tax on military widows.

[Idalou]

3 minutes ago, Sneezyone said:

Yeah, that doesn’t mean they all know. Some staffers take issues under their wing and shepherd them through. This is not a high profile, national issue that’s common knowledge on the hill or one that has broad support b/c it’s a very niche issue (like naming a local library or park, only this has a fiscal impact, albeit negligible). I get the impact on some people is real and I think folks need help and whatnot. I’m sure it’s very well known in related interest groups/circles but also think it’s reasonable for legislators of all stripes to have questions and be unsure. I feel the same way about the Death tax on military widows.

It passed the House overwhelmingly the first week of Dec. I think it's bigger than you are aware of. #actforALS is all over the internet, it feels like.

Edited December 16, 2021 by Idalou

[Sneezyone]

1 minute ago, Idalou said:

It passed the House overwhelmingly the first week of Dec. I think it's bigger than you are aware of. #actforALS is all over the internet, it feels like.

Again. We probably move in very different circles. My feed is full of folks concerned about national voting rights and democracy. Sorry.

Edited December 16, 2021 by Sneezyone

[Idalou]

25 minutes ago, Sneezyone said:

Again. We probably move in very different circles. My feed is full of folks concerned about national voting rights and democracy. Sorry.

No need to say sorry, I think we probably have much in common. My feed is full of these concerns, too, as I am a lifelong progressive. I do have relatives with ALS, so perhaps that is something.

https://www.murkowski.senate.gov/press/release/act-for-als-act-passes-house-cosponsored-by-majority-of-the-senate

Edited December 16, 2021 by Idalou

[Sneezyone]

25 minutes ago, Idalou said:

No need to say sorry, I think we probably have much in common. My feed is full of these concerns, too, as I am a lifelong progressive. I do have relatives with ALS, so perhaps that is something.

https://www.murkowski.senate.gov/press/release/act-for-als-act-passes-house-cosponsored-by-majority-of-the-senate

No, I feel like this is a distraction, that’s the reason for the apology. Ultimately there are tons of worthy issues and causes that don’t get a lot of attention or senatorial support for both political and fiscal reasons., not necessarily partisan ones. I’m happy to lend a voice tho. That’s all.

Edited December 16, 2021 by Sneezyone

[Catwoman]

Your video is excellent, Kelly! 

[Pawz4me]

I assume this is correct?

 

[MercyA]

Praise the Lord! 

[BlsdMama]

On 12/16/2021 at 3:38 PM, Loowit said:

You video is very powerful and brave.

I sent messages to my senators.

I spent a long while trying to edit out the crying before I gave up and said it’s going as it is. 

[BlsdMama]

20 hours ago, Pawz4me said:

I assume this is correct?

 

I came to pay exactly this!!!!

 

 I’m so sorry for not being on here today. 
 

I am SO being thankful for everyone’s support. We had word yesterday that it looked likely to be blocked by 3-4 specific senators and then all of a sudden got news of the vote!!!!!

 

 It was absolutely unchanged, including the dollar amount, and passed unanimously. It was unbelievable. 
 

The bigger story behind this is that there are two major drugs and one stem cell therapy that are either in third Trial or appealing FDA (that one is complicated) but did you know nearly 90% of ALS patients are excluded from trials??? Expanded access means actually making headway in ALS. Promising news coming from Columbia U, Israel, etc. ALS could become, dare I say it? Treatable!

[Corbster98]

Your video is beautiful, powerful and raw.

My father (a 22year retired AF pilot) lost his battle to ALS several years back. We were fortunate enough to move back closer to my parents after his diagnosis to help my Mom ( who was terminal with metastatic breast cancer) with Dad's care. 

Thank you for posting about this issue and advocating not only for yourself but others afflicted. 

[Ottakee]

2 hours ago, BlsdMama said:

 

The bigger story behind this is that there are two major drugs and one stem cell therapy that are either in third Trial or appealing FDA (that one is complicated) but did you know nearly 90% of ALS patients are excluded from trials??? Expanded access means actually making headway in ALS. Promising news coming from Columbia U, Israel, etc. ALS could become, dare I say it? Treatable!

This is so exciting.  I have kids that have mitochondrial myopathies and we are watching closely to see if the CRISPR technique will work for them in the future.  It is helping SMA and MD.

[BusyMom5]

So happy for you!  I pray that you get into the trials and find healing!

[BlsdMama]

On 12/16/2021 at 5:00 PM, Sneezyone said:

Yeah, that doesn’t mean they all know. Some staffers take issues under their wing and shepherd them through. This is not a high profile, national issue that’s common knowledge on the hill or one that has broad support b/c it’s a very niche issue (like naming a local library or park, only this has a fiscal impact, albeit negligible). I get the impact on some people is real and I think folks need help and whatnot. I’m sure it’s very well known in related interest groups/circles but also think it’s reasonable for legislators of all stripes to have questions and be unsure. I feel the same way about the Death tax on military widows.

This one was pretty high profile.  There have been recent congressional hearings re FDA and ALS.  Then there was the Right to Try which also brought ALS front and center.  The House bill was approved and then moved to the Senate but word had it that Cruz was going to actively block it - he'd had his own bill not that long ago that was different but moved around ALS.  Lately there have been several higher profile people diagnosed and/or die from ALS and it is finally and truly garnering national attention.

At any one time there are few ALS people because our time after diagnosis moves so quick that we/they are still mind blown from the diagnosis that the mental shift to advocacy doesn't happen.  Even when it does, the person most affected loses their voice and their ability to speak on their own behalf.  And, I'll say it, it is a *very* unsexy disease.  In a society that revolves around attractiveness, it's somehow difficult for them to become passionate about something so ugly - unable to breathe, unable to bathe or toilet oneself, trach'd, bedridden... then death.  And it's very behind the scenes.  You don't generally run into folks at the library and grocery store with ALS.  Diagnosis, shock/horror, multitudes of appointments, the slide downhill.  We need a full body (including head support) wheelchair which then requires a special vehicle and lift.  We essentially slide out of the view of society and leaves people thinking it can never happen to them because it's so extraordinarily rare ... While actually your lifetime risk of receiving the diagnosis is 1 in 300.

[BlsdMama]

18 hours ago, corbster98 said:

Your video is beautiful, powerful and raw.

My father (a 22year retired AF pilot) lost his battle to ALS several years back. We were fortunate enough to move back closer to my parents after his diagnosis to help my Mom ( who was terminal with metastatic breast cancer) with Dad's care. 

Thank you for posting about this issue and advocating not only for yourself but others afflicted. 

(((Hug)))
I am so sorry for your loss.  It is my hope they will finally figure out the connection between our military and ALS.  When we finally know, we can reduce the # of vets that end up affected.

[Corbster98]

3 minutes ago, BlsdMama said:

(((Hug)))
I am so sorry for your loss.  It is my hope they will finally figure out the connection between our military and ALS.  When we finally know, we can reduce the # of vets that end up affected.

Thank you.  I am sorry you and your family are facing this. Dad was only 65 when he lost his battle and was super healthy before ALS struck.

They "say" it was Agent Orange connected from his time in the Vietnam War but who really knows.