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Author Topic: Treatment Action Group - What would you do for a cure? Initiative Report  (Read 3718 times)

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Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Treatment Action Group (TAG) – “What would you do for a cure?” legislative advocacy initiative

I remember about a month ago when I was browsing through my emails and came across one that I thought was “spam.”  I opened it and was very pleasantly surprised.  I found out that I had was one of 35 people from across the United States selected from 350 applicants to participate in Treatment Action Group’s (TAG) “What would you do for a cure?” legislative advocacy initiative. 

TAG organized a grassroots group of activists from more than 20 states to participate in a two-day initiative to raise awareness among state representatives from Congress and the Senate of the need for increased funding for the National Institutes of Health (NIH), with a focus on HIV cure- and aging-related research.

Prior to my visit this past week (October 11-13th), I participated in two conference calls to prepare us for our visits.  We learned talking points and also latest research information to share with representatives.

I arrived in D.C. to the Omni Shoreham at 4 pm on Tuesday (10/11) and immediately went into an orientation meeting where I got to meet the other activists from across the nation.  An awesome and awe-inspiring group of individuals – some gay, some straight, trans, HIV+, and HIV -.

We started our visits to Capital Hill at 9:00 am on Wednesday (10/12).  I met with representatives from Congressman Deutch’s office, Congressman Bill Young’s office, and got to actually meet with Congressman Marco Diaz-Balart.  In the afternoon, I met with Representative Corrine Brown and her staff, Senator Marco Rubio’s staff, and Senator Bill Nelson’s staff.

Returned to the hotel about 6:00 pm and went to a dinner with the group where we shared our experiences from the day’s meetings.  On Wednesday (10/13), I met at with staff from Congressman Alcee Hasting’s office.  Next, I had an excellent sit down meeting with Congresswoman Kathy Castor.  I then moved on to Representative Frederica Wilson’s office.  In between, I was able to meet with staff from Congressman Ron Paul’s office (and scheduled a meeting for early November with Congressman and Republican Presidential candidate Ron Paul).  I also got to have a brief meeting with staff from Barney Frank’s office and Representative Wasserman-Schultz’s office.

The advocacy event wrapped up around 1:30 on Wednesday.  I made my way to the airport and was on the plane back to Fort Lauderdale at 4:15.

All of the representatives I met with were cordial, receptive to the message, and most seem committed to supporting at least level funding for NIH research.  All had questions, which I will be following up with by sending regular emails and visiting (I will be back in DC the first week of November for a work conference).  They also listened with compassion to my personal story.  All and all, I was impressed with the attentiveness received by legislators and their staff.  I left with an increased sense of empowerment and a desire to become even more vocal and active in supporting issues related to HIV/AIDS prevention, treatment, care, and research.  I am looking forward to an expanded role as an activist and advocate as we move towards better treatment options and a cure.

The staff from TAG are wonderful – connected, knowledgeable, and dedicated to their mission.  I walked away with lifelong friends and partners to assist in moving forward in advancing understanding, support, and awareness among our representatives.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

  • Member
  • Posts: 6,204
  • Google and HIV meds are Your Friends
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #1 on: October 15, 2011, 06:15:21 PM »
Congrats on the fine work!

I've personally seen how talking to legislators in person (which is easy and fun!) can make a difference within my own state, so I sure hope your advocacy does as well on a national level.

Keep tabs on the reps you talked to, and follow up if you don't see them helping out  ;)

Keep up the good work!
leatherman (aka mIkIE)


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

Offline edfu

  • Member
  • Posts: 1,084
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #2 on: October 16, 2011, 05:07:56 AM »
Thank you so very much.  This is essentially important work, and you are to be highly praised. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline skeebo1969

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  • Posts: 5,705
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #3 on: October 24, 2011, 12:18:40 PM »


  I missed this Phil , I only came across it from the link you provided from the other thread I missed.  First off, much belated congratulations!  And secondly, a big warm thank you for representing all of us living with HIV so well. 

  My bad for not noticing this sooner, sorry so late.

  Thomas
I despise the song Love is in the Air, you should too.

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #4 on: October 24, 2011, 12:31:08 PM »

  I missed this Phil , I only came across it from the link you provided from the other thread I missed.  First off, much belated congratulations!  And secondly, a big warm thank you for representing all of us living with HIV so well. 

  My bad for not noticing this sooner, sorry so late.

  Thomas
Thanks Thomas -
I had a great time and I am still getting emails from some of the representatives staff members.

I will be back up in DC again the first week of November for a work-related conference, but have managed to free up some time to be able to do a few follow-up visits.  Unfortunately, most of the actual legislators are on break the week I am there, but their staff will still be available.  And, considering that most get their guidance from their staff, there is nothing wrong with meeting with them - they are also pretty motivated,  energetic, and knowledgeable people who do take time to listen and respond.

Believe it or not, I have actually submitted a couple of resumes up to the DC area - while I don't know if anything will come of them just yet, being there made me realize just how much I love the DC area - so, who knows, this Miami guy just may be making his way up to the beltway in the near future.  But, if not, I will continue to be active from here in Florida.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline leatherman

  • Member
  • Posts: 6,204
  • Google and HIV meds are Your Friends
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #5 on: October 24, 2011, 02:42:00 PM »
Unfortunately, most of the actual legislators are on break the week I am there, but their staff will still be available.
Everyone at home should check to see if their legislators are back in their local offices. ;) You don't always have to go to DC to meet up with your state's legislators.

And, considering that most get their guidance from their staff, there is nothing wrong with meeting with them - they are also pretty motivated,  energetic, and knowledgeable people who do take time to listen and respond.
excellent suggestion. I often speak with the staff when my state and/or federal legislators are busy or unavailable. Sometimes I think that's better because they have more time than the Senator or Representative to listen to you, take your literature and ask questions.

Although it may not be as good as corporation money, I often "bribe" the staff with my lemon bars and/or cookies - just like I use to get volunteers/advocates to go along with me. I always have my baked goodies packaged up in disposable containers that I can just leave, along with a short note (stating who we are, what we want, a URL for more info, and of course a hearty thank you) taped to the container. I won't say that my baking has changed any minds; but they sure remember me and the adovcacy group from my ASO that I lead whenever we put in an appearance.  ;)

Last time we were down at the state capital, one of our Reps did come out of his office long enough to thank us for the previous batch of cookies. He also instructed his staff to make sure to save him one from the batch we had just brought, and to bring it to his office along with any information/papers we were leaving that day.  ;D I would like to think our cookies and information did help sway this Republican, who voted FOR increased ADAP funding during the budget debate rather than voting along with his fellow party members who asked to totally defund the program.

Sometimes all you need to do is stand out just a bit to get the attention of your legislators to have some time to explain and educate about the problems surrounding HIV treatment and prevention and the funding of those programs. ;)
leatherman (aka mIkIE)


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

Offline AlexMerida

  • Member
  • Posts: 28
Re: Treatment Action Group - What would you do for a cure? Initiative Report
« Reply #6 on: October 24, 2011, 05:50:09 PM »
Hi
can we  do something... in order to move cure-related research  forward as quickly as possible
Can we use social networks in orde to make pressure as it has happen
in other issues in other part of the world
we have to organize and give money to the researchers in order to catalyze the new promising therapies.. watch the work of abzyme form Professor Sudhir and the work of prof Loyter with the mix. They are the only one who have succeded in controling and erradicatins HIV but they need dollars and the big pharma...we are the only interested..we do not have much time
As as community we need to stay involved ……
The benefits we have in our  life today  with ARV are because people took risks
I am totally new in thes matter i jus habe been diagnosted and about to start ARV,
Does any one know the work of zacha Bennet for Abzyme
I contat Yissum the company who will comercializa the invetor of Dr. Loyter adn they told me that they are working on that..in fact de do not have any pharma interested.
so is is been 30 years and is time to belive.
the  govetment has done is part but what about us?
Many people are in the confort area...but would ask them iwaht can you give if you have the chance to be one day free of HIV..is is possible but we have to cataliza it

 


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