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Author Topic: He said I was easy  (Read 1383 times)

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Offline Oceanbeach

  • Member
  • Posts: 3,565
He said I was easy
« on: February 05, 2007, 12:45:59 AM »
Who said, He said???  I had my follow-up visit with Dr. after the last set of labs.
CD 4= 365, that is normal for me
% = 27%, that is normal for me
VL= Undectable, pretty constant since 1998

He said I was one of the easiest patients he has.  Nobody gets off the hook that easily so... I said, "Doctor, we both know the Center for HIV Prevention and Care will be losing $1.6 million under the terms and conditions of the Ryan White Modernization Act and this loss of funding can happen as early as March 1, 2007".  I have been called back to the Funding Allocation Working Group for a joint meeting including FAWG members, Commission on AIDS members and local providers.  We have 3 hours to redo 3 months worth of work on the FY 2007 budget and there is not enough funding for services.

The local hospital where he also sees HIV patients and has hospital privledges has announced closing it's doors so where do we go from here?  Being 1 of approximately 700 persons living with HIV in Sonoma County, with an estimated 1300 not yet in care, the concern (mine) is where do 2100-2400 people go for care in Sonoma County go when the Center is underfunded, Sutter is closing and Kaiser is members only.  There is no answer.

I have been invited to attend and listen to a conference call between the 9 California EMA's, the providers, HRSA and the Commission on AIDS on Tuesday afternoon.  Because of time limitations, I will not be allowed to participate but will have a better idea on how these cuts will affect people in Sonoma, Santa Clara, and Sacramento Counties.  Have the best day
Michael

Offline koi1

  • Member
  • Posts: 713
Re: He said I was easy
« Reply #1 on: February 05, 2007, 07:53:29 AM »
I am glad you posted this so people know funding should not be taken for granted. And it takes work to keep these programs in place. Perhaps organizing all of those who are affected and their families for a protest might have an impact. Maybe also those employed by these grants can also be convinced to start mobilizing.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: He said I was easy
« Reply #2 on: February 06, 2007, 03:44:36 PM »
Hey Rob,

Those employed by the government, can not use government resources to lobby the government.  Kathleen Russell drives to Santa Rosa once each month from Sacramento (4 hours each way) to attend the Sonoma County Commission on AIDS meetings.  She introduces herself as an employee of the State Department of Health.  She has been doing this for years.  She is the Chief of ADAP in California.  Marion Deeds says she is "just a county employee", she has been elected as our Chair of the COA, in real life, she runs the county office which handles Medi-Cal (California version of Medicaid).  Allen Nishikawa also works for the County of Sonoma as Program Evaluator (or something), he is the Director of the Sonoma County Commission on AIDS.  Shari Brenner is HIV Section Manager at the Center for HIV Prevention and Care and the only person who sent me a Christmas card this year. 

They have each thanked me for publicly saying the things, they wish they could.  We have their support but they are paid with government funds and their equipment is paid for by government funds.  What Kathleen, Marion, Allen and Shari do on their own time, on their own computers is their business and they do but, they are not public about those tasks.

Last year, my ADAP was cancelled twice and this year Medi-Cal cancelled once.  I called Kathy because I have a little problem and within hours ADAP was restored.  Marion, "can you help", within 24 hours Medi-Cal was restored. 

I am an activist and a volunteer, these people give me the figures, facts and anything I may need to get the job done.  there are 52 Planning Counsils within the U.S. and all of them have people such as Kathleen, Marion, Allen and Shari who serve as Staff to the Commission.  If more people living with HIV/AIDS became involved, our world would be a better place.  Have the best day
Michael
   

 


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