Hi All,

Yesterday's meeting went really well. Tim O'Neil, Susan Paley (Lobbyist for the HDSA), and my husband Bryan and I met at the University Club in Washington, D.C. around 8:30. We talked briefly about our strategy for the upcoming meeting with Congressman Cantor and left for the Capitol a little before 9:00.

We started the meeting off with the three of us and Lindsay Shore, Rep. Cantor's Legislative Assistant on health issues. Tim and I met with Lindsay three months ago when the first delegation went to Capitol Hill.

We once again raised our concerns regarding the out-of-date medical criteria for disability approval for pHD's. We talked about the issues with the two-year wait for Medicare benefits and how pHD's could not afford the two year wait, both for financial reasons and for medical reasons.

We specifically asked what had been done since our last visit and were not satisfied with the answers. It was made clear that the HD community could not afford for our Representatives to be reactionary when it came to H.R. 678. We needed them to be proactive in supporting the bill and helping in any other way they could.

Lindsay Shore was candid with us and told us that Rep. Cantor would not co-sponsor the bill due to his position as the Republican Whip. We already knew that and had discussed among us beforehand what we might be able to get his help with. We wanted to focus on the medical criteria for Social Security disability and how we could get it changed.

Congressman Cantor joined the meeting about 20 minutes into it. He listened to my concerns about HD and the SSA's disability and Medicare benefits from a pHD's perspective. Susan's summary of the meeting explains Tim's input to the Congressman much better than I can so let me copy it into here

"Tim O'Neil spoke not only from the perspective of someone with HD in his family, but as a doctor -- specifically explaining the nature of the disease (cognitive, psychological and motor symptoms) and citing the out-of-date guidelines the SSA uses for a disease which they even refer to with the incorrect, outdated name (Huntington's Chorea.) "

Again, I'd like to use Susan's words to describe the next part of the meeting as she did an excellent job of capturing it.

"The tenor of the conversation took a turn when the Congressman walked in. He listened to Patty who eloquently delivered her story, the hundreds of signatures, and her request for his support. He listened to Tim describe the medical angle. I can't tell you what a great job Patty and Tim both did in speaking to Mr. Cantor- hitting just the right notes. Mr. Cantor asked pointedly "tell me what you want." When Patty spoke of the bill he interrupted her and said "you want me to support a bill that does what, exactly." We collectively clarified the "ask" to Mr. Cantor, acknowledging that we didn't expect him to co-sponsor it, but that we'd like his support another way. When he grasped (quickly) that the SSA is using outdated guidelines he said clearly, and mostly to Lindsay across the table as a directive "I can't imagine this is unreasonable" when referring to changing / updating the guidelines. I expressed that we'd appreciate his writing a letter to the Social Security administrator. He did not agree to do so, BUT the good news is that he was by this point clearly on board with the theory of our request and the need to change the guidelines. He again, pointedly directed toward Lindsay that they would "zero in on this" and see what can be done... and get back to us. He mentioned something akin to the fact that there was 'no excuse" for this continuing."

Rep. Cantor spent about 20 minutes with us, twice as long as we expected since meetings with Constituents usually last no longer than 10 minutes. When we were done, he kindly posed for a photo with me and my husband, Bryan.

Afterwards, we met with documentary producer and director Mike Ratel. Mike has posted here several times. He is producing a documentary on HD and H.R. 678 and how the odd sport of lawn mower racing is helping to raise awareness and raise research money for HD. Mike, please step in if I'm off on my description.

Mike interviewed me for the documentary. I had to laugh because Bryan told me afterwards that people were walking by looking to see who I was since I was standing in front of the Capitol with Mike and his professional camera gear interviewing me.

Mike interviewed Susan as well and has plans to interview Tim in his professional office in the near future.

Over all we had a very productive and inspiring day. We have high hopes that something concrete will come out of this meeting and if it doesn't, I'm sure I'll see Tim and Susan back on Capitol Hill in another three months!

Thanks for everybody's support and prayers. I will have more pictures up on my website later tonight or tomorrow.



Patty



Edited 2 time(s). Last edit at 07/22/2009 04:05PM by Patricia.

Patty that is GREAT!!! I hope it worked!!!

great going!

Patty this is excellent! Would it be ok with you If I forward this post in an email to other advocates her in California?

Misty Oto

Absolutely Misty. The more we can inspire people to do the same, the better!

I have to say that I've lived in the Washington, D.C. metropolitan area most of my life and all of my adult life. I've visited D.C. to see the monuments and Smithsonians but never took any tours in the political buildings. I thoroughly enjoyed both this visit and the visit in March. It made me realize that as a regular citizen, I DO have a say in our Government! I might have to repeat myself a few times, LOL, but I can certainly do that!

I have a feeling that a visit to my Congressman's local offices would be just as enriching. I hope everyone gets a chance to experience it at one time or another.

Patty

Hello,

Patty,

Thanks for posting. I would like to reiterate that both of our visits to Capitol Hill left us exhilarated. I echo Patty's statement encouraging everyone to visit/meet with their Congressman. I believe that one of our Virginia delegation, Marie has managed to get her Congressman to attend a picnic tomorrow in the Virginia Beach area. Good luck, Marie and members of her support group.

I will post the lastest advocacy email from the HDSA which was sent last weekend. I have not seen it posted yet.

Have a great weekend,

Tim

Patty, you and Susan were great on camera. Last Monday I got back from Sparta, MI where I filmed the lawn mower race for Huntington's disease. While on my trip I interviewed David Stickles (thanks David!..) who is the president of the MI chapter of HDSA. I also filmed the behind the scenes activities of the segment that WZZM TV 13 shot pitting local media personalities against each other in an exhibition lawn mower race. The segment was to make the Grand Rapids TV audience aware of the weekend race. The early count on the money raised during the weekend is about $15K. I also did radio interviews with WOOD in Grand Rapids and WZUU in Kalamazoo. I am hoping to get some medical professionals to offer a clinical definition of HD on camera. Thanks to all for your cooperation and support.

Awesome effort! Thanks to everyone for the time, energy and $$$ going into raising awareness for HD! Much appreciated!
Carla

I have a silly question--
Did you meet with someone you voted with? Our congressman is a democrat and I am repbulican. He won't ever get my vote so would he meet with me? or even listen to me as you have experience?

Hi Carla, Not a silly question at all. There was never a time in the whole process of scheduling a meeting or during the meeting that we were asked who we voted for or if we were Republican or Democrat. I hope you're considering meeting, it's a great experience! I'm glad I got to do it.

Patty

Great Job, Patty!!

Thank you (and others) for your dedication and perserverance.

Keep up the great work and I'll see what I can do on my end.


Deborah

Great job! Thank you.

I have been asked to call and talk to a staffer of my Rep. I will polish up on this and see if I can't wiggle in there in person. I never have had luck getting into the door yet. But not tried the house side. I have been able to talk to a senate staffer before. In fairness my persistence wasn't tested as the legislation was dead pretty quickly after I started being concerned with it. I just didn't get the urgency when a door cracks open. I will be a little more insistent for some face time..

Good luck, I found being stubborn was key. Who is your Rep.?

Patty

He's Brad Ellsworth. If nothing else I do appreciate even staffer time. I think I can get in the door though. I will make sure I drag in a couple more people I know from the district.. I have hopes at least. Will know a bit more next week. Funny how that e-mail got here at 9pm Friday night. Sort of a forced cool down period..

Well of course you can count my family in!
We can ask our social worker to send an email out and maybe fill the office.

I just realized that I usually email Brad Ellsworth but this time I decided to send a real letter thinking I would get better results. Eric emailed the same letter and he got the response.

Just goes to show that form letters that are emailed work too.

I also had four NJ family members send letters. Two hand written and two emailed. Maybe we will all start hearing soon.

Hi Eric and MRO,

Thanks for getting an appointment with Rep. Ellsworth's office. Of course, it is always better to get an appointment with the Congressman, but meeting with a health legislative aid can be very productive.

Email is as effective as snail mail, if not better since it arrives immediately and Congressional mail takes a very long time to be delivered since the anthrax situation in 2001. I have always received replies from Senators and Congressmen in under a month.

For those folks who have not scheduled a meeting, I recommmend calling the congressional office number listed on the congressman's website and asking how the office prefers to schedule meetings. Most offices will give the caller the email of the congressional office scheduler or the health legislative aid.

I would ask how many folks the office can accommodate priot to the meeting, but in general, my philosophy is the more the merrier.

A couple of days prior to the meeting, I suggest emailing the health legislative aid a copy of the bill, a copy of letters already sent to the Congressman, and a list of current co-sponsors. Here is link for current cosponsors: [ecip.loc.gov]|/bss/111search.html|. Glenn Nye (D-VA-02) is the latest cosponsor and is not listed on the Thomas website.

Good luck,

Tim

I think Patty had a good thought through the lobbyist.. keep it intimate enough that it's not like a public appearance. There is probably a nice comfortable number of people where it is both personal but shows more than just individual intent. I think three or four constituents are better than an army from outside the district.. just guessing. I will find a chapter talker to help out too. Patty armed me to the teeth... very thankful Patty.. Hope it all goes to good use..

Thank you for all of your caring and hard work-
lisa