PLEASE TAKE THIS SURVEY for Ryan White

[PaulinNJ]

Hi all;

Sorry I've not been active on here in a while...I'm doing great, but busy as I have a full plate (I call it "My f**** platter"!!!).

As you may know (or recall) I am a member of the local NJ Ryan White Council. Over the past few years, councils have banded together nationally to get what we NEED from D.C. - strength in numbers.

They are asking that anyone living with HIV/AIDS take the survey so they can have an idea as to whom they represent when they go to DC. They have their next trip scheduled for next week.

I urge anyone who wishes to take 5 minutes to take this survey!!! I am copying the text of the email I received as a Council Member to give you answers to questions you may have about the survey. I personally know the two representatives from my area who are a current and former President of the local Ryan White Council. Both of them have fought the 'good fight' for years and their entire lives are dedicated to 'doing the right thing' in getting Washington to not let HIV/AIDS become "a chronic disease' that is completely treatable i.e. "Give them the drugs and that's all they need" attitude.

The website address is in the text below and again, I urge you all to take this survey. It's easy and painless. If you find it the least bit painful, feel free to send me a virtual spank! LOL

Paul
(Scroll down or go directly to www.caear.org/coalition and hit the big red splahy ballon in the center of the site!!!

----- Original Message -----
From  CAEAR Coalition <info@caear.org>
Date  Fri, 23 May 2008 16:56:17 -0400
To  'CAEAR Coalition' <info@caear.org>
Subject  Survey of People Living with HIV: Participate and Spread the Word





Dear Colleagues
 

CAEAR Coalition and the National Association of People with AIDS are sponsoring a survey to gather information about access to medical care and support services for people living with HIV and AIDS.

 

This survey is one part of a coordinated effort (surveys, town hall meetings, etc.) with some of our national partners to ensure that the voices of people living with HIV/AIDS guide advocacy efforts on behalf of the Ryan White Program. 

 

If you are living with HIV/AIDS, we urge you to fill out the survey. We also ask all of you to share this message broadly with individuals, organizations, and listservs that would be interested.

 

Please note, the survey should only be filled out by people living with HIV/AIDS. The survey is anonymous, though users can choose to provide their name and contact information at the end of the survey if they wish to be contacted about how to be involved in HIV/AIDS advocacy efforts.

 

If you have already completed a paper copy of this survey at one of our town hall meetings or other events, please do not fill out the online version as this might skew our results. 

 

The survey can be reached at www.caear.org/coalition 

 

Thank you,

 

Randy Allgaier

Co-chair, People Living with HIV/AIDS Caucus

CAEAR Coalition

 

Kali Lindsey

Vice President for Federal Government Affairs

National Association of People with AIDS

[dusty99]

Did it.

[Miss Philicia]

Thanks Paul -- just took did it.  Just to help out, if you click on the embedded link below it will take you to the first page of the survey and save you a few clicks.  The survey is quite easy to take and only took me 5 minutes.

Ryan White Survey

[Winiroo]

Done

[AlanBama]

I took the survey   

[sacinsc]

I just love taking Surveys!

[Torey]

I just love taking Surveys!

lol  I do, too! 

[ANGEL42]

Took it...
ANGEL

[rondrond]

Done,

[Longislander]

Done, and thanks~

[danpoz]

Done.


dan

[Robert]

"  I just love taking Surveys! "

me too......

robert

[ga1964]

Done.  Hope it can make a difference in getting assistance for those of us in small town USA.

[RobT]

Just took this survey

[PaulinNJ]

THANK YOU TO ALL who have taken this survey so far!!!

Call me greedy, but I really want to spread the word even more on this survey. Any chance that a moderator can get this more prominently displayed on the site so we can really blow them away with responses? The more that respond and complete the survey, the more people are counted. For example, according to law, since I was diagnosed with AIDS in 2001 (not HIV - see my profile for more info if interested), I "fell" off the roles in 2006 and am no longer counted when it comes to funding. The CAEAR Coalition is determined to change the way we are counted and the way funding is distributed along with getting the autocrats in DC to increase funding. The budget cuts in 2005-6-7 literally robbed Peter to pay Paul (as Congressman Palone D-NJ put it).

If anyone has suggestions to get a moderator's attention so we can get more exposure on the forum, please feel free to do it as my comp has been having some prblems and I'm still trying to resolve them.

I really appreciate all of you taking the five minutes to do this. It will give the CAEAR Coalition the FACTS on paper needed to convince the reps of all members in DC that these are true numbers (not just what they think should count or those, like me, who have become without representation and fallen off the roles) from all over the country. The more people that take the survey, the more we have to back up those who represent us in DC with REAL numbers.

Paul

[Roie]

With out my having to read through the whole thread and info about the survey, please tell me if its just for those in the USA or other countries.

If it is for all over then I would gladly take the survey.

[leatherman]

always happy to add my two cents to be counted in a survey

For example, according to law, since I was diagnosed with AIDS in 2001 (not HIV - see my profile for more info if interested), I "fell" off the roles in 2006 and am no longer counted when it comes to funding.

what do you mean by that? Is there a time limit (federal or state) to how long someone is counted? I've been living with hiv since '92 and had an AIDS diagnosis since '96, so I sure hope to hell I'm still being counted!

[David_CA]

Done!

[Miss Philicia]

Paul, is that AIDS diagnosis counting something particular to New Jersey?  I have a friend who is co-chair of the Philadelphia Ryan White Planning council, and we've discussed stuff about ADAP a bit and never once has he mentioned anything like that.  I'll have to ask him when I see him next week.

[PaulinNJ]

Philly-
Definitely ask him, but I have been told on good authority via council members who know their sh** that beyond five years, we drop off the roles. Maybe this is a leftover from when "we" were considered as good as dead in that time (I don't know) but I believe it's a HRSA reporting thing - not sure. Let me know if you find out anything different. Also, if we do not utiluze services via a caseworker in six months, plop off the roles we do....

[PaulinNJ]

OK....questions are coming up about "being counted". I will get a direct quote from the horses mouth, so to speak, and get answers. This may take a day or so but I promise I will follow through so please be patient. In the meantime, the survey is important as CAEAR is meeting this week in DC and the more numbers they have to work with from diverse parts of the country, the more "real" data they have to support the argument that we need more funding. So, for now, please put aside the questions of being counted, take the survey, and I WILL get answers.

THANKS!
Paul

[Miss Philicia]

Also, if we do not utiluze services via a caseworker in six months, plop off the roles we do....

I assume that's just in regards as to funding for the case worker part of Ryan White funding, not ALL RW funding?  I've not heard of this either, and I certainly do not see a case worker every 6 months, much less every year.

[dixieman]

I filled out the survey... but, I'm very fortunate... I'm employed... I've been hiv+ for 17 years... I've worked when I should have went on disability... and I've had side effects... from the meds... and I was a guinea pig when there were no meds... crixivan was a drug from merc that basically saved my life... I guess I've survived bacause of my own determination to not give up... I've witnessed too many people who did... and here I am still working, living, and just GLAD I'm alive.

[Assurbanipal]

Done

[PaulinNJ]

Hi all;

I hope to a have a short statement by The (former because of budget cuts) Director of the local Ryan White Council as to some of your questions so that we can all be clear as to the mission here. PLEASE keep in taking the survey as it really gives The CAEAR Coalition real time numbers, not numbers we're fed by the government or numbers created by estimations etc.

The Coaltion is a group of GOOD people (poz and not) who have banded together from across the US and spend their time devoted to presenting a solid case for more funding to our politicians in DC. TO do that, they periodically ask for information from "us" as consumers (meaning those of us that use or do not use services. As long as you are a US citizen (or territory that is funded by Ryan White funds), please complete the survey.

I hope to have a statement posted tomorrow with more about CAEAR.

Thanks all!
Paul

[Ric Wilke]

Paul - I did it.  Regards, Ric

[PaulinNJ]

Thanks Ric and to all who have taken the survey. I just wrote a note to the (former) Director of our Ryan White Council and am waiting for a response which will be a short mission statement for CAEAR and why this is so important.

I notice a lot of views, (250+ as of last night), but about 10% taking the survey. That's great, but it would be nice if anyone within the US who is living with HIV/AIDS took the survey as the more responses we get, the more accurate information we get. Even if you don't use services or use them often, or have private health insurance, it's all information CAEAR needs to know.

Thanks,
Paul

[pozniceguy]

done  probably not much help since I dont use any of the services offered...

Nick

[aliveinla]

Done. Question 11. I make $50,00. 

[BlueMoon]

I notice a lot of views, (250+ as of last night), but about 10% taking the survey.

When I checked my email this morning I saw that the local AIDS Task Force had sent it to me a couple of days ago.  So it's getting around, and maybe some members here have filled it out elsewhere. 

[Assurbanipal]

I notice a lot of views, (250+ as of last night), but about 10% taking the survey.

Perhaps when people pop in to read the new replies it adds to the view count, so that each person might be 1 -10 views?

[J.R.E.]

Hi,

Even though I don't use any of the services, I took the survey, the other day.  Also passed the link on, through email to a few friends of mine that do use some of the services.


Take care----Ray

[PaulinNJ]

Thanks to all of you who are taking the survey, passing it along, validating it (i.e. those who have been asked by their case managers) etc. The more numbers we get, the better, even if you don't utilize services or don't utilize them often, these numbers give The CAEAR Coalition REAL numbers.
THANK YOU and keep passing it along!
Paul

[pozguy75]

Done! And I love Survey Monkey...I use it at work!

[thunter34]

Done.  And boy howdy, did I have some additional comments for the end.  Also provided information for them to contact me regarding advocacy. 

Thank you for the thread.  Much appreciated.

[minismom]

Just took the survey - thanks for the quick link, Philly.  I answered for Mini, of course, and wish there were more age choices than "below 19".  I'm with ga on this one.  There are NO ASOs within 150 miles of our home and when i called DHHR about Ryan White, they didn't even know what i was talking about.  

Mini was diagnosed in 2000, so I guess she's not "counted" either.  I gave information to contact me about advocacy, too, and gave them more than my 2-cents at the end, too.

Mum

[PaulinNJ]

COOL you guys! Don't forget, don't kill the messenger, but this is what they need to hear - from "real" people.
THANKS again and keep them coming!
Paul
PS Thunter and Minismom - good to see you both!