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Author Topic: PLEASE TAKE THIS SURVEY for Ryan White  (Read 3962 times)

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Offline PaulinNJ

  • Member
  • Posts: 124
PLEASE TAKE THIS SURVEY for Ryan White
« on: May 28, 2008, 03:47:45 PM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline dusty99

  • Member
  • Posts: 103
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #1 on: May 28, 2008, 03:58:13 PM »
Did it.
17 Mar 08: diagnosed
31 Mar 08 CD4: 565,  30%  VL: 28,900
21 May 08 CD4: 600,  37%  VL: 13,000
25 Oct 08  CD4: 308   34%  VL: 68,000
19 Nov 08 Started Atripla
16 Dec 08  CD4: 580   42% VL: 70
27 Jan 09  CD4: 490   41%  VL: undetectable
24 Mar 09  CD4: 565   42%  VL: undetectable
30 Jun 09  CD4: 615    41% VL: undetectable
25 Sep 09  CD4: 595    47% VL: undetectable

Online Miss Philicia

  • Member
  • Posts: 24,005
  • celebrity poster, faker & poser
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #2 on: May 28, 2008, 03:58:51 PM »
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
"Iíve slept with enough men to know that Iím not gay"

Offline Winiroo

  • Member
  • Posts: 2,082
  • Positive since 1991
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #3 on: May 28, 2008, 06:16:15 PM »
Done

Offline AlanBama

  • Member
  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #4 on: May 28, 2008, 08:29:15 PM »
I took the survey   ;D
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline sacinsc

  • Member
  • Posts: 353
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #5 on: May 28, 2008, 09:37:05 PM »
I just love taking Surveys!
March 07 - Negative
May 07 - Exposed
June 07 - Seroconversion
September 07 - CD4 402 VL 118000 25%
October 07 -     CD4 294 VL 124000 22%
November 07 - Norvir, Triuvada and Reyataz
December 07 -  CD4 355 VL  550 .... guess the meds are working.
January 08 - CD4 446 VL <48 undetectable!
April 08 - CD4 554 VL <48 undetectable!
July 08 - CD4 666 VL <48 undetectable! Hporay...I have devil CD4's

Offline Torey

  • Member
  • Posts: 18
  • Anticipate Miracles
    • MindUnite.Com
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #6 on: May 28, 2008, 10:11:42 PM »
I just love taking Surveys!

lol  I do, too!  :D
Seroconversion 2006 (?)
Jan 08 - CD4 409 (28.5%)  VL-10,000
May 09 - CD4 297 (19.2%) VL-92,000
October 09 - CD4 244 (15.2%) VL-116,000
December 09 - CD4 239 (13.5%) VL-142,000
(No Meds)

Offline ANGEL42

  • Member
  • Posts: 40
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #7 on: May 28, 2008, 10:21:26 PM »
Took it...
ANGEL
" My Body Might Be Broken, but My Spirit and Soul are Alive and Well " my personal mantra

Offline rondrond

  • Member
  • Posts: 1,712
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #8 on: May 28, 2008, 11:11:06 PM »
Done,

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline Longislander

  • Member
  • Posts: 2,486
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #9 on: May 28, 2008, 11:22:35 PM »
Done, and thanks~
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline danpoz

  • Member
  • Posts: 11
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #10 on: May 28, 2008, 11:41:06 PM »
Done.


dan
12/1/07 HIV-
3/17/08 HIV+, CD4 384, VL 39966
4/4/08 Started Atripla
7/14/08  CD4 343, VL Undetectable :-)


Offline Robert

  • Member
  • Posts: 2,644
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #11 on: May 29, 2008, 12:13:19 AM »
"  I just love taking Surveys! "

me too......

robert
..........

Offline ga1964

  • Member
  • Posts: 188
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #12 on: May 29, 2008, 01:00:10 AM »
Done.  Hope it can make a difference in getting assistance for those of us in small town USA.

Offline RobT

  • Member
  • Posts: 319
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #13 on: May 29, 2008, 01:27:09 AM »
Just took this survey


Current meds: Atripla
VL: undetectable
CD4: 630

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #14 on: May 29, 2008, 09:32:21 AM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline Roie

  • Member
  • Posts: 263
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #15 on: May 29, 2008, 09:39:44 AM »
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.
Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."
MtD

Offline leatherman

  • Member
  • Posts: 6,143
  • Google and HIV meds are Your Friends
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #16 on: May 29, 2008, 09:58:56 AM »
always happy to add my two cents to be counted in a survey ;D

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!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #17 on: May 29, 2008, 10:56:23 AM »
Done!
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Online Miss Philicia

  • Member
  • Posts: 24,005
  • celebrity poster, faker & poser
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #18 on: May 29, 2008, 11:02:52 AM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #19 on: May 29, 2008, 11:15:31 AM »
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....
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #20 on: May 29, 2008, 11:21:39 AM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Online Miss Philicia

  • Member
  • Posts: 24,005
  • celebrity poster, faker & poser
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #21 on: May 29, 2008, 11:23:59 AM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline dixieman

  • Member
  • Posts: 889
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #22 on: May 29, 2008, 11:42:47 AM »
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.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #23 on: May 29, 2008, 03:45:38 PM »
Done
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #24 on: May 29, 2008, 07:10:10 PM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline Ric Wilke

  • Member
  • Posts: 573
  • I joined AIDSmed.com 10/2002.
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #25 on: May 29, 2008, 10:53:12 PM »
Paul - I did it.  Regards, Ric

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #26 on: May 30, 2008, 12:07:40 PM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline pozniceguy

  • Member
  • Posts: 1,176
  • Niceguy Dallas
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #27 on: May 30, 2008, 01:35:36 PM »
done  probably not much help since I dont use any of the services offered...

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline aliveinla

  • Member
  • Posts: 247
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #28 on: May 30, 2008, 08:58:00 PM »
Done. Question 11. I make $50,00.  ;)
4/24/07: Last tested Neg
1/22/08: First tested Poz
1/30/08: CD4 393; 28%; VL: 44k
3/18/08: CD4 218; 26%; VL: 222K
4/24/08: CD4 402; 26%; VL: lab forgot
7/22/08: CD4 405; 25%; VL: 6,780
10/15/08: CD4 340, 26%; VL: N/A
2/4/09: CD4 394, 26%; VL: N/A
Jun 09: CD4 300, 25%; VL: 4000
Oct 09: CD4 324, 23%, VL: 10K
11/22/09: started Atripla
11/20/11: CD4 405; VL: UD

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #29 on: May 30, 2008, 09:39:30 PM »
Quote
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. 
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #30 on: May 31, 2008, 08:34:50 AM »
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?
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline J.R.E.

  • Member
  • Posts: 7,120
  • Joined Dec-2003 Living positive, since 1985.
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #31 on: June 01, 2008, 05:59:54 AM »
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
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #32 on: June 01, 2008, 06:47:12 AM »
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
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

Offline pozguy75

  • Member
  • Posts: 1,239
    • POZitively Speaking
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #33 on: June 01, 2008, 01:26:19 PM »
Done! And I love Survey Monkey...I use it at work!
Dx 2005
ATRIPLA

Offline thunter34

  • Member
  • Posts: 7,310
  • His name is Carl.
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #34 on: June 01, 2008, 01:45:01 PM »
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.
AIDS isn't for sissies.

Offline minismom

  • Member
  • Posts: 2,605
  • Quocumque jeceris stabit
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #35 on: June 01, 2008, 04:25:40 PM »
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. ;D

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline PaulinNJ

  • Member
  • Posts: 124
Re: PLEASE TAKE THIS SURVEY for Ryan White
« Reply #36 on: June 02, 2008, 06:51:19 AM »
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!
Laugh often - the alternative ain't worth it!
"Ain't I a stinker?" -- Bugs Bunny
From 120 t's, shingles and high VL in 2001
To 1200+ t's and undetectable in 2007.
2010 remain undedect. and 1000 CD4.

 


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