Just reporting that we have three new cosponsors bringing the total to 124 as of May 18th.

I am not, and have never been politacally minded. So how about some education?? I know basically what HR678 is, but....

1. What are cosponsers?
2. how many are needed?
3. how many possible cosponsers are there?
4. at what point/date due we need to get the necessary cosponsers?
5. is this by state, district, etc. ?
6. who are the current cosponsers, and where are they from?

I've been reading about this for 8 months and I think it's time I learned more

A cosponsor is a Representative from the House of Representatives who agrees to support our bill.

It's unclear exactly how many we we need.. over half of the 435 would be great...

Roughly 435 are in the House.

it would be ideal if we could get this done by the end of the year. After the next elections some of the representatives will leave.

It;s most effective to talk to your particular representative in your district. Everyone has one.

To see a list of current co-sponsors, go here.
[www.govtrack.us]


for more in depth info.. go here....

[www.hdsa.org]

Hope that helps to start.

I will do it.

two more... 126

they are unclear about how many we need eric?



Edited 1 time(s). Last edit at 05/29/2010 01:53PM by skmf12.

My concern is no matter how many we get we have run out of time at this point. It has to pass or get attached to another bill in the house and then head to the senate and pass there then be signed by the president. I heard that one of the Senator's aids wondered if it might not be a better strategy to put the effort into just working with Social Security directly to get standards updated. An act of congress for that part is not the only route. I think a bill waiving the two year wait for Medicare would still be necessary. That can be done since it was for ALS. I could be wrong on all counts. Been a lot of silence since the Washington Day. I don't really know what has happened lately.

I am guessing that we will not get this through this congressional session. That's fine. Not to panic. We will have to reintroduce this one more time and most who signed on this time will again. With the early start and the trial balloon this time was.. we have techniques down a lot better. We will need to get in the door of new reps right away. And hit new senators right away too to get that side going. I am hoping that my rep, who is is now running for the senate, wins... he has been very helpful. In the mean time getting yeses now means not having to rework them later on. So keep getting reps when ya can. Let them rubber stamp it next session. We won't have to resell them. Or we still do have time and it does get done this time. I really don't know the particular strategy. I haven't been in the know lately about it. I did about as much as I could from this end. If you write Jane Kogan at the HDSA she can tell ya specifically what is shaking for sure and if there is a plan "B" should we run out of time. I don't know of an exact number we need... we just need more for right now. There is power in numbers. We do have the support of over 25% of the reps... a great effort so far.

How do you go about getting a representative to sponsor this? (please be detailed in your response, I can easily follow directions but have a hard time coming up with them!)

Mrs. P,

Send me an e-mail to geezerjock100@yahoo.com and I'll send you a letter with two attachments that I sent to my rep. It hasn't worked yet, but a similar letter I sent to both my Senators got a response from one (Senator Burr R-NC). He hasn't yet agreed to sponsor a Senate counterpart, but he's looking at it, according to a staff member who called me.

Tim O'Neil, who is an expert in this matter, vetted my packages before I sent them.

Will

Not that I mind, but wondering why Will and I are answering these posts. I went to the HDSA advocacy page and it still shows 124 sponsors. I would have taken it personally that the forum went unanswered, except the count meter hasn't changed on that page so has the steam gone out since Washington? The last 49 people are gonna be the hardest to get, plus a senator. It's going to take even more work and not less to get to the intended goal. Just wondering where the steam went? If there is a new strategy and we should all be taking a break til the next congress, could someone fill us in so we too can take a breather?

Hi Everyone,

Thanks so much to Eric and Will for your responses.

I try to check HDAC, but sometimes I don't get to. If you have any questions, please don't hesitate to contact me at jkogan@hdsa.org (I promise to respond in a timely manner)

In terms of numbers, there are 435 Representatives, so the "magic number" is 218, which gives us the majority in the House. The more cosponsors we have, the more pull it gives us to get HR 678 to the House floor for a vote, or attached to other legislation.

Even if we aren't able to get the HD Parity Act passed in this session of Congress, it does not make sense to take a break-- we will have a running headstart, because so many Members have cosponsors, and the more additional Members that commit between now and then, the better.

As far as Eric's feedback about SSA-- we have indeed heard from several high-level congressional staffers that we should be working with SSA directly, rather than taking the legislative path. However, we've been trying the direct approach since 2007, and every time that they tell us that they'll revise the listings, they keep missing their own deadlines. That said, we've done several things to try to influence the SSA, including testifying at the backlogs hearing, submitting several questions to Commissioner Astrue, and having a letter written to SSA from the head of the Government Oversight Committee.

Mrs. P-- the easiest way to contact Congress is by going to our advocacy Center at www.hdsa.org/advocacy and personalizing a pre-written letter. A more direct approach is to send a letter to the staff person responsible for healthcare (I'd be more than happy to provide the information).

I hope I've answered all of your questions. If not, please don't hesitate to email me at jkogan@hdsa.org, or call me at 800-345-4372 x 226, and I'll set up a time to discuss this further.

Sincerely,
Jane Kogan
Program Services & Advocacy Manager
HDSA

Still full steam ahead - I just received a personal letter from my Congressman, confirming he's signed on (that would make 127). Just because you don't see a lot of activity here on the lighthouse, it's merely a lack of time to report. We are still full steam ahead on the advocacy committees. The way to ensure you're "in the know" is to get involved. It's so easy and SO empowering!!!
Don't give up on us!!!!!

I worked 8 months to get an appointment with my Congressman's office only to hear that this late in the session it was unlikely that he would jump on. They wanted to know how ALS was able to accomplish what they did with the Social Security Administration and when. I couldn't answer the question. Anybody know?

Hi Laura,
ALS was able to get a waiver of the 2 year waiting period legislatively, just like we are trying to do. Advocates wrote, called, and met with Congress until legislation was passed. Can you please let me know which member of Congress you are talking about so that we can follow up in Washington?
Best,
Jane

Hi Laura,
ALS was able to get a waiver of the 2 year waiting period legislatively, just like we are trying to do. Advocates wrote, called, and met with Congress until legislation was passed. Can you please let me know which member of Congress you are talking about so that we can follow up in Washington?
Best,
Jane

Thanks Jane. How long did that process take for the ALS folks from beginning to end, and did it include an update in the defininition of ALS in the qualification criteria?

Doug Lamborn, CO(R) is my Congressman. I met with a local field rep (literally took 8 months to get the appt) and am waiting to hear back from him a final decision from the Congressman.



Edited 1 time(s). Last edit at 06/15/2010 08:47AM by Laura.

Laura, Your post angered me. *You* didn't make me angry, the fact that you had to wait eight months for a meeting and then you were told it was probably too late in the season. I'm sorry but that is B.S. In fact, it angered me so much that I sent Rep. Cantor's Health Legislative Assistant an email right after I read your post.

We (me, my husband, and Tim O'Neil) met with Rep. Cantor last year and we found out he was unlikely to co-sponsor because of his position as the Republican Whip. But he said he would investigate with the SSA why the regs weren't updated. His Health L.A. (a different one at the time) was told by the SSA that the regs would be updated in January 2010. They were not.

This Spring we met with Rep. Cantor's new Health L.A. who promised to look into it. Since then I have sent several emails, got one lackluster response, and no answers to subsequent questions.

This reminded me of the runaround I got when trying to set up a meeting with Rep. Cantor. It wasn't until I stated in no uncertain terms that I was a voting constituent and I was extremely unhappy with the situation. Right after that, I got a meeting with Rep. Cantor, which is really hard to do because he is the Whip.

So after reading your post today, I decided enough of being nice and patient this time around. This is the email I sent to the Health L.A. I also sent one to Rep. Cantor through the Congressional Website saying the exact same thing except personalizing it to him. I had an immediate response from Mr. Talbott saying he would check into getting a meeting.

My point of this long post is that I feel we need to stand up to our Congressmen and their staff. Being nice and polite is fine, and patient because they are busy is fine. But there comes a point when it's not fine because they are pushing us to the side. If I were you, I'd reply to both the field rep and Rep. Lamborn with an email and phone call that you are dissatisfied and that you feel you are not being represented adequately. Tell them you had to wait *eight months!* for an appointment in the first place. There is no reason they can't sign on now, and again in the new term, if he is re-elected.

Below is the email I sent to Rep. Cantor's Health L.A.:

Frank,

I am extremely dissatisfied, discouraged and upset. We have been working the HR-678 issue since January of 2009 and have not seen any results.

I never heard back from you regarding having Rep. Cantor read a document on the House floor in support of May being Huntington's Disease Awareness Month.

I never heard back from you regarding meeting with Rep. Cantor during the out of session time he would be in his Virginia offices. I even asked if I should ask someone else for the appointment and you did not let me know one way or another. I sent the requesting email on 14 May. I also asked for an update regarding the SSA, which I did not get.

The only response I've had regarding an update was on 15 April and it said "The bill is still under consideration. With regards to SSA, I am still working on it.", which means absolutely nothing.

Rep. Cantor met with me, my husband Bryan, and Dr. Tim O'Neil and said the issue with the SSA would be addressed. Lindsay Shore contacted them and they said the regulations would be updated January 2010. They were not. It has been pushed back yet another year, just like they've been doing for the last six years.

I told you this when we met. At the time I felt assured the issue would be looked into and we would have results. At this point I even doubt Rep. Cantor knows his office was strung along by the SSA.

I feel as if I have just been given face time and have no representation in Congress.

Regards,

Patty Hillman


----------

I hope you can get some better support, as I do with all the others out there trying so hard to be heard!

Patty

Dear Laura,

The ALS waiver happened in 2000, before my time at HDSA, so I can't give you the answer to that question. My understanding is that people with ALS don't experience the same types of issue that people with HD do when applying for disabity. I did some research, and found an article that deals with the subject: [www.seniormag.com].

Doug Lamborn's staff person in Washington, DC is Rachel Lee, and her email is rachel.lee@mail.house.gov. I would suggest sharing your frustration about how long it took to get a meeting, because I agree with Patty that it really should not take so long.

Patty-- I've shared your email to Frank with the Washington, DC- based folks, in the hopes that we can put some pressure on that end.

Best,
Jane

Thank you Jane. I got a letter from the SSA today denying my application for disability. This is exactly what we've been fighting for!

Patty

Patty,

I am so sorry to hear you were turned down today, and I hope you have lots of support around you now. I do not receive SSI myself, and my life if very difficult day to day as a result. What this means is I can relate to how you may feel. Yesterday I cancelled a doctors appointment for later this week due to not having any cash for the co-pay. ( I am too embarrassed to go in there without it). I am also out of my anti D's and have not picked up new ones for this same reason.

I write this not to gain sympathy for myself ( I am fine ) but just to comment on how not having this in place affects ones life everyday.

-Brett T