Thank you Jane for the information, and thank you Patty for feeling my pain. I'm sorry that you received a denial letter. Many of us are in the same boat!

Brett, don't be embarrassed to ask the doctor if there are other resources to seeing him. I was "shy" this way also. Barb has gotten her memantine from doctor samples for instance because Canada doesn't pay for HD usage of it. This is one time I do play the fatal disease card. Lots and lots of people have to look for bandaid solutions to get healthcare in this country and no need for you to feel embarrassed about it. The system is embarrassing, what doctors insist on having from a patient is embarrassing. Healthcare is set up so the individual can't pay for anything more than the flu. That's not your fault. There is no such thing as an underpaid doctor. The average nuero makes 200k in this country. No offense to any doctor as they do deserve to be paid, but if you are needing a service they provide, and are short of your cash, and they are out your 10 mins of their time, they will be fine. The drug companies all have ways of providing medication low cost or free as well. They do this to help keep the system just as it is, as they don't want to change it. So call and ask if you qualify. To them it's an investment in profit. Trust me Brett, no doctor is shy when it comes to money. Don't pay a bill and see how fast a collection agent is on your butt. If there is any choice of seeing a doctor or not, or getting medication or not, take what you can get.. that's what the industry does in every possible way.

I am not happy about this Patricia.

Thanks Brett and Laura.

Brett, Eric has a good point. I forgot that when my son was little, a few times we got samples from the doctor for his endless infections. I've also had my doctor give me samples as an adult. It's definitely worth asking about.

Thanks Eric, it certainly makes the fight for HR-678 more personal, although it was already personal enough!

Patty

About being "in the loop". Not to blow my own horn, or maybe to blow it in this case, whatever, I have participated about as fully as a person can. I and Maria, followed Patricia's lead and we got our rep as a co-sponsor back when there were only twenty something on board. After that I stayed in contact with his office and he agreed to write a letter to each of the IN reps as well as all the Bluedog democrats to co-sponsor as well. That reached about 60-70 reps. I called each of the reps in my state. I also called and wrote repeatedly both senators of my state. I never got a meeting with either of them but both did meet with the HD delegation in Washington, and I would like to think I softened them up for that. The HD issues were certainly not new to either of them. I even wrote the president and vice president as a lark. Twice... With Maria, the chapter board members got two other reps here in the state.

To me this is a social movement, and this being the only functional social outlet solely dedicated to HD, regardless of face book or twitter pages, by HD families and for HD families, I expect outreach to this place. I don't need or want to be in the inner circle in terms of being in the know about this issue. I have done what I can here to encourage people to participate. I am thankful Jane visits. I could write Jane personally, and get questions answered, but my questions weren't of a personal nature exactly. I wanted to know some stuff that any given other person might want to know. It's how people will be emotionally invested in this issue who may never have been and do some good work. If it remains as social as possible then everyone is "in the loop". It's not a top secret project after all. I was just checking to see if what was going on was what I was feeling or not.

Also I am little edgy as my chapter has hit a rough patch, and not available at the moment and compounded by that questionnaire we all answered for the strategic planning committee and the board over our "needs". If people in a place of decision making would read the forum as if it were a trade journal on a daily basis, I don't think there would be any reason to yet again send out a questionnaire about needs. The questions are the same.. the needs the same. It really shouldn't be to tough to figure out how to be more valuable. As of this moment, I have no local entity. Natl. is not in place as anything but as management and not as a support. This is the place I have to be socially active and interactive. So I am going to use it that way.

That's the way it is for a lot of people. HDSA is not local to them and nationally it's not interactive. So to participate interactively over a national concern that also also involves the HDSA takes a place like this.

Thanks guys for thinking and writing to me. I really am fine. I will get my meds and will see the doc, it just will not always be the day I want to or should. I do have quite good insurance, but my ability to earn consistent pay is not there. This has everything to do with my health and nothing else.

-Brett T

Hi Everyone,
Just wanted to share some good news; we're up to 129 cosponsors, as of today!
As I said before, please don't hesitate to contact me at jkogan@hdsa.org with your questions,comments, and concerns.
Best,
Jane

I am wondering why we are not simultaneously, at this point, not petitioning the SSA en-mass directly to update the language of HD and to streamline the path they follow to find what they need with the applications they receive. We have the ears of a lot of lawmakers now who support us. That's what the top aids have said to do. I assume they would support us, this being their idea of a path to choose. We can then just work on a law that strips the medicare waiting period. I have always wondered why, for that part of the bill we weren't doing that anyway. I know the SSA is a huge bureaucracy, but we only need to contact and work with a small part of it. We should also have the ear of the head of the NIH, who has worked in HD, to back us up. It's too bad that this has been on the radar since 2007 and three or four years later we find out publicly that we could have been trying to help by contacting the SSA also. But spilled milk and new people in the office, so maybe a two pronged approach is better?

Hi Eric,

The top aides would want us to split the SSA aspect from the Medicare aspect because of the resistance on the Hill regarding cosponsoring disease-specific legislation. They also don't necessarily know HDSA's history with SSA.

We did consider splitting up the Medicare and SSA aspects of the HD Parity Act, as Eric suggested. I understand that there was much discussion about separating the SSA criteria and the waiting period and fighting for each separately The reason that this wasn't done is because both aspects of the HD Parity Act are equally important, so we didn't want to achieve a partial victory by legislating a change in the guidelines (the easier part of the legislation) and then not being able to do anything about the Medicare waiting period.

Best,
Jane

I also wanted to add that we've had several members of Congress, including the head of the Government Oversight Committee and members of the Ways & Means Committee, contact SSA directly regarding the Disability guidelines.

And what has happened there? Are we following up with the people who they wrote to? Otherwise it goes onto the pile, because I know how it works. These things always take an obstinate effort or they go away. It's something I get criticized for, bull dogging though an issue, but otherwise you get pushed to the side. One may only get 10% of what they wish to have, but that's better than zero. I seldom got anything with one request and no follow up. I don't expect those letters to do much on their own. Just like the letters from my rep didn't get 60 new co-sponsors. If they went to people where there was no follow up and persistence, the letter fell on deaf ears. They were sent as an aid to our effort but it still falls on us to get it done. I have no problem asking my rep to do the same and write the SSA on our behalf, and he will. Maybe my senators too. I know one of my senator's aids was more in line with this route than the passing the bill. So if that's the case, then I expect her help in that regard if that is going to be an effort we are going to undertake. As far as know we have one real message and goal right now nationally. Other than general awareness and fund raising. To me the co-sponsors represent 130 advocates for us. If they can get part of what we want through either effort, we should use them while we have have them. IMHO.

Hi Eric,

We do note who we speak with, follow up (though, sometimes, it is not appropriate for HDSA to follow up on a Congressional request; that said, a question from a Congressman that goes directly to Commissioner Astrue is much harder to ignore).

You make a good point about cosponsors being potential advocates. That said, some members of Congress are far more influential than others, and these are the ones that we need to cultivate as leaders. This is why, in the last few months, we've had several Chapter and region-based calls where we've identified the key advocacy targets, and discussed how best to cultivate them.

In fact, I'd love to have more help in Indiana, if you're interested...
I also want to let you know that I really appreciate your persistence;

Thanks! Would love to continue the discussion in-person if you'll be at Convention.

No I won't be there this year... speak to Patti Day (my chapter president) about it for me. She is attending and can touch base over the plan you want here in IN. If she is properly motivated, things get done. I am not on the board, and trying to be more of a worker bee if needed than anything else right now. I am sure if there is some plan in place she will find a lot for me to do.

Eric,
I hope you didn't misinterpret my comment, I didn't mean to suggest that you weren't involved. I have to admit, I am feeling a little "proud" lately as I just got my 2nd Congressman to co-sponsor. (I moved, so I had a new rep). I've been in a whirl-wind of advocating with great results, so forgive me if I seemed a bit boastful...I guess I am, LOL.

I'm sorry that you won't be at conference, I was looking forward to meeting you.

Denise

You have every right to be proud of yourself... very good work. Our paths may cross sometime. Have great time!

5 new cosponsors. New total is 134.

That is great news Eric, thanks for posting it!

Patty

Who are the new 5? I usually get notification from the tracking website but haven't received one yet.

Rep. Tierney [D-MA6]: New cosponsor.
Rep. Chaffetz [R-UT3]: New cosponsor.
Rep. Gonzalez [D-TX20]: New cosponsor.
Rep. Tonko [D-NY21]: New cosponsor.
Rep. Langevin [D-RI2]: New cosponsor.

Hi Everyone.
You can keep track of new cosponsors on Thomas, the library of Congress website, at thomas.loc.gov