I’ve emailed my elected officials and I usually get a response back…maybe not right away, but I do get a response. I’d suggest only emailing your elected representative right now because currently the bill is in the House of Representatives. Elected officials get so many emails (some of them form ones) that if you’re not a resident of their district, they throw them away unless you’re representing a group or organization. Send an email rather than a letter. There are delays on regular mail because it has to go through a special process to make sure mail doesn’t contain anthrax or anything else that could be dangerous.
I think in this context, HLA = health legislative aide. Every elected official has aides to help with different areas of policy. Like Bill said, if you’re able to call, you can talk with the the health legislative aides who are often young and excited about their jobs. However, if you’re going to email, I’d email your elected official directly.
If you want some tips about contacting legislators, you can visit:
– http://www.kidney.org/news/pubpol/pubpol_tips.cfm
– http://www.rsnhope.org/legislation/advocacy_tools.php
Beth, thanks for this additional information. It really helps alot…am gonna plan another wave of new emails and of course refferals…I do have a fax and will try faxing first.
Gus the HLA – is the Health Legislative Aid – and for an issue like dialysis the HLA is who your Representative will rely on to understand the issue. My brother is deaf and I make calls for him all the time. I’m sure you have someone in your family who could call your Senators and Congressman and ask who in the office is responsible for dialysis issues. Then follow up with an email directly to that person.
In your email just explain your situation and that you plan to advocate for dialysis issues. Ask questions “Are you familiar with Kidney Dialysis and the Federal Governments role?” is a good initial question. Try to determine their level of knowledge and then build on it. You can also suggest that they tour a dialysis unit if they get back to the district or even a unit in DC (there are a couple ways to set up a visit, I think the ANNA is willing to help).
Gus the HLA – is the Health Legislative Aid – and for an issue like dialysis the HLA is who your Representative will rely on to understand the issue. My brother is deaf and I make calls for him all the time. I’m sure you have someone in your family who could call your Senators and Congressman and ask who in the office is responsible for dialysis issues. Then follow up with an email directly to that person.
Thanks again for that, now the challenge to see if I can get someone in the family to call…I hardly see them around…but will try…if not, i may take a visit at the office in person but will need to prepare what I am gonna say, so I will do my home work…
In your email just explain your situation and that you plan to advocate for dialysis issues. Ask questions “Are you familiar with Kidney Dialysis and the Federal Governments role?” is a good initial question. Try to determine their level of knowledge and then build on it. You can also suggest that they tour a dialysis unit if they get back to the district or even a unit in DC (there are a couple ways to set up a visit, I think the ANNA is willing to help).
Will sure do, …btw, which bills do you think are priority right now? There’s several bills that that keep going around in circles but which one is the BIG one?
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Since you’ve personally seen the benefits of daily home dialysis that many other patients do not have access to because Medicare doesn’t reimburse for more than 3 treatments a week, I’d ask your representative to support (co-sponsor) HR 5321. After you’ve established a relationship and credibility with the health aide (or your representative), then you can ask for other bills that you think would help patients with kidney disease. By the way, typically representatives are in their home districts from August 1-Labor Day if you’d like to try to talk with your representative in person. If you do meet with him/her, you will may also meet the health legislative aide at the same time.
Okay, will give it a shot at it…
Good luck…and remember, your representative is just your neighbor. Try not to be intimidated. You’re the expert in kidney disease.
Thanks Beth, I just hope it will workout okay…more on that later.
No matter how you feel personally about the change in control of the House of Representatives it is very good news for this Bill (actually the version that will be introduced in the 110th Congress).
This Bill was dead in this Congress because the lead staffer for Chairman Thomas (the Republican Chair of the powerful House Ways & Means Committee) was insisting that we wait for the results of the NIH study. Now there will be a new Chair of the House Ways & Means Committee, a Democrat.
The new Democratic Chair will be Representative Charley Rangel of New York. I was at a dinner with Representative Rangel several years ago and he related that his brother was on dialysis in the ‘70s (PD I think) and the congressman was his helper. I have to believe that the Congressman will give the new version of 5321 – the Dialysis Solution Bill – a much more fair hearing then the previous Chairman.
[quote=Bill Peckham;11030]No matter how you feel personally about the change in control of the House of Representatives it is very good news for this Bill (actually the version that will be introduced in the 110th Congress).
This Bill was dead in this Congress because the lead staffer for Chairman Thomas (the Republican Chair of the powerful House Ways & Means Committee) was insisting that we wait for the results of the NIH study. Now there will be a new Chair of the House Ways & Means Committee, a Democrat.
The new Democratic Chair will be Representative Charley Rangel of New York. I was at a dinner with Representative Rangel several years ago and he related that his brother was on dialysis in the ‘70s (PD I think) and the congressman was his helper. I have to believe that the Congressman will give the new version of 5321 – the Dialysis Solution Bill – a much more fair hearing then the previous Chairman.[/quote]
Oh my gawd, no way!! 
…I hope all goes well…thanks for the heads up on this!
Cheers!
Hi Folks
The way things work in washington DC, is like every where else. Those have have the $$ have a big voice. The only way the small guy(group) can get anything is being organize. Bill, is on the right track with emailing weekly or daily basis. Bill, is on the right track with getting a new thread on what or how should dialysis be payed for. I stated my thinking ,but will repost when Bill leads the way. If the people who are getting dialysis can form a bill of rights themselves. And some how can we think of the in center consumers. We all started in a center. But we all must be willing to work on it and play the old give and take. Plus Like everything it not going to happen over night. Our country is running in red ink, which means the bills must be payed.
Heather1 washington dc is what it is.
bobeleanor
Ok bobeleanor, I see you want to wait until Bill leads a thread. I hope it will be a productive thread where we all get some answers and come up with some fresh ideas on how to push the envelope further for the sake of better ESRD care. No other website that I am aware of currently has anything going as far as patients, caregivers and medical working together to work for improved care.
I just got a letter from one of my Senators, Am proud to announce that Barbara Boxer of California co-sponsored One of the Bills that is pending in the U.S. Senate right now…