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Author Topic: CARE Act Passed Today  (Read 3983 times)

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Offline Oceanbeach

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  • Posts: 3,565
CARE Act Passed Today
« on: December 06, 2006, 07:56:14 AM »
Northeast lawmakers dropped their opposition Tuesday to renewal of the biggest federal AIDS funding program, ending a months long standoff that pitted urban against rural areas-

The agreement by Sem Hillary Clinton and fellow New York and New Jersey lawmakers came in the final days of the GOP controlled congress.  They signed off on a pact that will soften cuts to their states but will still free up more money for rural states and the South.

California gets some $260 million annually under the legislation and California lawmakers had urges passage of that compromise.

"Many states, including our own, will pay a significant price if the Senate adjourns without reauthorizing the Ryan White CARE Act," Sens. Dianie Feinstein and Barbara Boxer wrote in a letter to Senate leaders.

The five-year renewal of the $2.1 billion- annual law had sparked a funding fight between cities where the disease first made its mark and the rural communities where it is now spreading fastest.  The agreement was expected to be approved by the Senate Tuesday evening before going back to the House for final passage, and then to President Bush for his signature.

"We stood our ground, and they gave ground as we came up with a compromise that we can live with."  We're very happy, said Hillary Clinton.

Republican Senator Mike Enzi, Chair of the Senate Health Committee, said the deal came after "months at the negotiating table trying to find an agreement that will ensure Americans have access to lifesaving HIV/AIDS treatments regardless of their race, gender, or where they live."

Clinton, D-N.Y. and other northeasterners had heald out, claiming the original five-year version of the programs renewal would cut their state's funding by at least $70 million each.  Enzi, the measures Republican champion, disputed both figures, saying the cuts would be far less.

A deal crafted by Sen Ted Kennedy D-Mass., won their support by shortening tthe renewal to three years so the money disbursements would be revisited sooner, and the large funding cuts expected in the final years be eliminated.

Southern state officials had been frustrated that opposition from the northeast was holding up the bill that would send them more money.  They cheered the compromise.

"We're thrilled that we finally have gotten the bill," said Kathy Hiers, Head of AIDS Alabama.  "I think overall it's going to help the deep south states a great deal." she said, estimating Alabama would get $7 million in new money in the first year of the deal.

Changes in the bill include counting patients with HIV in addition to those who have developed AIDS.  Now just AIDS patients are counted for funding.  That change favors areas where the epidemic is newer.

There you have it straight from Devlin Barrett and Erica Werner of the Associated Press.

Offline gerry

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  • Joined AM Feb 2003
Re: CARE Act Passed Today
« Reply #1 on: December 06, 2006, 09:30:29 AM »
Finally.  Thanks for the update.

Offline Biggums

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Re: CARE Act Passed Today
« Reply #2 on: December 06, 2006, 10:44:03 AM »
Thanks for the update.  Thank God it passed finally.  Bush will sign it won't he?
44 year old gay man .......just broke up with the only man I've ever really loved.

You can love completely without complete understanding.

Offline poet

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  • Poet living and working in Central Maine
Re: CARE Act Passed Today
« Reply #3 on: December 06, 2006, 12:02:06 PM »
Thanks for the update as well. Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Tim Horn

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  • Posts: 800
Re: CARE Act Passed Today
« Reply #4 on: December 06, 2006, 06:30:10 PM »
Not so fast, I'm afraid...

The CARE Act reauthorization was passed by the Senate today; it has NOT yet been passed by the House.  There has even been some concern that the House won't pass the Act before Congress breaks this month. 

Stay tuned... reauthorization of the Ryan White CARE Act has proved to be a political nightmare.

Tim Horn

Offline Oceanbeach

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Re: CARE Act Passed Today
« Reply #5 on: December 06, 2006, 08:54:10 PM »
Just in from Allen Nishikawa, Facilitator of the Sonoma County Commission on AIDS.

He spoke with a member of Congresswonam Woolsey's office today.  Usually when the House and Senate pass slightly different versions of a bill, a conference committee from both houses meets and resolves the differences.  With the CARE Act however, it sounds like the hope is to simplify the process by having the House vote on the Senate version.  Staff to Congresswoman Woolsey believes that it is very unlikely the House will do so, since they plan on adjourning this Friday.  If the House does not pass it this week, then everything gets postponed until thje new Congress convenes in January.  Does look like it isn't over yet.  Have the best day
Michael

Offline Tim Horn

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Re: CARE Act Passed Today
« Reply #6 on: December 06, 2006, 09:47:59 PM »
Well, this has become a really nasty game of quid pro quo orchestrated by House Energy and Commerce Committee Chairman Joe Barton of Texas.  In a nutshell, he is threatening to block House passage of the CARE Act reauthorization unless the Senate acts on a bill that he previously ushered through the House regarding reauthorization of the National Institutes of Health. 

There are problems with the NIH reauthorization bill and its clear that the Senate is not ready to move forward with it.  In turn, Representative Barton is holding the RWCA reauthorization hostage in exchange for passage of his NIH reauthorization bill currently in the Senate. 

Yuck.

Tim Horn

Offline Oceanbeach

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Re: CARE Act Passed Today
« Reply #7 on: December 06, 2006, 09:50:45 PM »
Note: maintaining funding levels of Title I at 95% likely refers to Title I formula funding only

December 5, 2006
FOR IMMEDIATE RELEASE

Washington, DC: Today Senator Kennedy announced that his proposal for the Ryan White Modernization Act has been accepted by the bipartisan negotiators, clearing the way for final passage this year.  Kennedy's proposal--which has ended the stalemate-- would take the current reauthorization bill and limit to a three year reauthorization, in order to leave stablethe care delivery systems while the structure of the program is truely re-vamped to reflect the disease of 2007.  The bipartisan, bicameral bill reflects the balance of protecting our nation's established systems of health care for those living with HIV and AIDS and directing more resources to areas experiencing an increase in the disease.  After two and a half years of negotiations, Kennedy is determined to reauthorize the bill this year.

"After years and years of negotiations, this final proposal clears the way for reauthorization of the Ryan White CARE Act this year so that all people living with HIV/AIDS will get the care and services they need to live long and productive lives," Senator Kennedy said.  "We must pass this bill now, it is about more than just money and health care services, it's about caring and the American tradition of reaching out to people who are facing health challenges and in need of support."

Below are the details of Senator Kennedy's proposal:
1. Maintain funding levels of Title I and Title II at 95% of the previous year, but never allow funding to fall below 95% of what states and cities received in 2006 so it keeps the hold harmless for the length of the reauthorization.

2. Counts all people with HIV for funding no matter where they live or how the data is packaged.

3. Maintains the targeted funding pool for pharmaceuticals and therapeutics instead of running out of money paying for hold harmless provisions which would happen if we continue with the current law.

4. Includes an absolute repeal of the law after the three years so it forces the issue of restructuring to meet the needs of those living with the disease now.

5. Expects HHS to continue to develop a framework to look at severity of need and to report their progress in 2008.

6. Maintains 4 years transition time for code states to switch to names without being penalized.

Offline Tim Horn

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  • Posts: 800
Re: CARE Act Passed Today
« Reply #8 on: December 06, 2006, 09:59:33 PM »
The National Association of People with AIDS (NAPWA), and countless other advocacy groups, have essentially issued a plea to, well, everyone...

They're essentially calling on everyone to get in touch with the White House, their House of Representative member, and the House leadership -- ASAP -- to urge them to support immediate House action regarding the CARE Act reauthorization. 

To reach the White House, call 202-456-1414.  You can also reach the Capitol Switchboard at 202-224-3121 to be connected to your House member and, most importantly, to reach the leadership offices responsible for this quagmire.  These include Reps. Hastert of Illinois, Boehner of Ohio, Pelosi of California, Hoyer of Maryland, Dingell of Michigan, and of course, Barton of Texas.

Tim Horn   

Offline Oceanbeach

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Re: CARE Act Passed Today
« Reply #9 on: December 06, 2006, 10:09:01 PM »
Dear Tim,

Last year when I started www.Commission-on-AIDS.org, I was scared.  This year, I am terrified.  According to the UCSF data, the formula funding levels the five new Title I jurisdistions would likely receive are:
1. Baton Rouge, LA                $3 million
2. Charlotte, NC                     $3.7 million
3. Indianapolis, IN                   $3.4 million
4. Memphis, TN                      $4.9 million
5. Nashville, TN                      $3.8 million
Total- $18.8 million without an increase in funding for FY 2007.  Have the best day
Michael

Offline Tim Horn

  • Member
  • Posts: 800
Re: CARE Act Passed Today
« Reply #10 on: December 09, 2006, 07:39:38 AM »
RWCA Passed the House!!!

Gone midnight this morning -- as a final measure before it breaks for the year -- the House of Representatives passed the Ryan White CARE Act reauthorization. 

This is excellent news.

Tim Horn

Offline Cliff

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Re: CARE Act Passed Today
« Reply #11 on: December 09, 2006, 07:45:45 AM »
How was the funding issue (reallocation of funds) resolved?  Or was that a separate issue/bill?

Offline Nadine

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Re: CARE Act Passed Today
« Reply #12 on: December 09, 2006, 07:54:08 AM »
Thanks for letting us know Tim...this is great news!

Offline J.R.E.

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  • Posts: 6,960
  • Joined Dec-2003 Living positive, since 1985.
Re: CARE Act Passed Today
« Reply #13 on: December 09, 2006, 08:12:05 AM »



GREAT NEWS !!!   Thanks.
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 DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline Tim Horn

  • Member
  • Posts: 800
Re: CARE Act Passed Today
« Reply #14 on: December 09, 2006, 08:32:16 AM »
Clff -- I'm still waiting to hear about the breakdown of funding. 

Here's a news article from CQ:

AIDS Programs, NIH Reorganization and Bioterrorism Bills Set to Become Law

By Alex Wayne, CQ Staff, 6:22am

Congress successfully untied a legislative knot Dec. 9 involving federal AIDS programs, the National Institutes of Health, children's health insurance and an anti-terrorism bill.

The tangle involved the priorities of several powerful lawmakers, including House Energy and Commerce Chairman Joe L. Barton, R-Texas; Senate Health, Education, Labor and Pensions Chairman Michael B. Enzi, R-Wyo;, and Sen. Edward M. Kennedy, D-Mass., who will take over as chairman of Enzi's panel in January.

Earlier in the week, the Senate amended and then passed a House bill (HR 6143) that would renew federal AIDS programs for low-income patients. Separately, the Senate also passed a bill (S 3678) by Sen. Richard M. Burr, R-N.C., that would renew a bioterrorism law enacted after the Sept. 11, 2001, terrorist attacks, and create a new agency to coordinate the research and production of vaccines for potential plagues and biological weapons.

But both bills stalled in the House, as Barton sought to use them as leverage to pressure the Senate to act on one of his top priorities: a bill (HR 6164) to restructure the National Institutes of Health (NIH). That measure aims to limit the growth of the institutes' bureaucracy and finance new kinds of research.

Two days of negotiations across the Capitol ensued, and another issue emerged. Senate Democrats, worried about shortfalls that some states face in their Children's Health Insurance Programs (SCHIP) in fiscal 2007, insisted on legislation that would help states handle the problem.

By the morning of Dec. 8, Democrats described the situation as bleak. “It's basically stalemated,” Kennedy said of Barton's NIH bill.

But by that evening, the lawmakers had worked out a solution.

First, the Senate passed Barton's NIH bill by voice vote, amending it to both increase authorized spending for the research agency and redistribute about $271 million within the State Children's Health Insurance Program to help states with their shortfalls, according to Senate Democratic aides. SCHIP is a joint state-federal program that insures low-income children whose families are not poor enough to qualify for Medicaid.

The amendment forced the bill to go back to the House, where it was cleared about an hour and a half later, on a voice vote.

Barton called the bill “a major, major accomplishment of this Congress.”

Then the House held brief, late-night debates on the two Senate-passed bills: the three-year reauthorization of federal AIDS programs, called the Ryan White CARE Act, and Burr's bioterrorism bill.

The Ryan White bill cleared by voice vote. The law governs about $2 billion a year for drugs and services for AIDS and HIV patients.

The bioterrorism bill also cleared by voice vote. It would create the Biomedical Advanced Research and Development Authority to coordinate the research and development of new vaccines.

Offline Iggy

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  • Posts: 2,435
Re: CARE Act Passed Today
« Reply #15 on: December 09, 2006, 09:06:14 AM »
.
« Last Edit: January 10, 2007, 08:49:58 PM by Iggy »

Offline Cliff

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Re: CARE Act Passed Today
« Reply #16 on: December 09, 2006, 09:39:32 AM »
If the SF Chronicle is correct, then indeed the funding allocation has remained the same.  It sounds like Congress has given a 3 year reprieve to any major structural changes, but after that time the structure of Ryan White will have to be revised.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/12/07/MNGTMMQN3V1.DTL&type=health

Offline Dachshund

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Re: CARE Act Passed Today
« Reply #17 on: December 09, 2006, 10:58:09 AM »
From what I understand this is just a stop gap spending bill the 109th (do nothing) congress passed...basically punting, and putting the budget on auto pilot until the new congress reconvenes in January.

With Democratic control of congress next year, hopefully their will be an reevaluation of the budget. Until then the budget will exist at the preexisting levels.

Offline Tim Horn

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  • Posts: 800
Re: CARE Act Passed Today
« Reply #18 on: December 09, 2006, 11:34:22 AM »
Dach -

I don't believe this is the case.  If the House failed to reauthorize RWCA, there were mechanisms in place to simply maintain funding at its current level until the 110th Congress reconvenes in January.  The passage of the bill in both the House and the Senate, like Cliff points out, officially reauthorizes RWCA for the next three years.  In other words, RWCA funding is guaranteed through to December 31, 2009. 

The good news is that RWCA funds weren't decreased or significantly reappropriated.  The bad news is that funds weren't increased for the next three years.  With so much focus now being placed on standardized testing to get more HIV-positive people who are unaware of their infection status into care, we're essentially looking at a massive upswing in the number of HIV-positive people who are going to require services and treatment provided through RWCA funding. 

The fact is, most of the HIV-positive people in the U.S. who are currently unaware of their infection status are disenfranchised and will require RWCA-provided services.  Without additional funding, yes, we'll be able to move forward with standardized testing... but without the necessary resources to provide adequate care to the sharply increased number of documented HIV-positive people.     

This is going to be a very interesting three years.  I think we can definitely expect longer ADAP waiting lists and even more limited access to services. 

Tim Horn

Offline Dachshund

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Re: CARE Act Passed Today
« Reply #19 on: December 09, 2006, 12:24:44 PM »
You would know more than I do about that Tim. It sounds bleak at best...those of us who rely on Ryan White are in a constant state of flux.

However, on a brighter note. Majority leader Pelosi (God I like the sound of that) will be looking at the tax cuts for the wealthy, interest on student loans, oil company incentives, minimum wage, etc. She has also promised to examine health care-or the lack there of. With Democrats controlling the agenda, hopefully HIV/aids funding will get a thourough reexamination. Fingers crossed!

Offline gerry

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  • Joined AM Feb 2003
Re: CARE Act Passed Today
« Reply #20 on: December 09, 2006, 12:57:35 PM »
How was the funding issue (reallocation of funds) resolved?  Or was that a separate issue/bill?

I believe at least for 2007, the "hold harmless" provision would still be in place, so funding is still guaranteed at a minimum of 95% of 2006 levels.  Some reallocation is still going to happen (since it's basically flat-funded with only a $70M increase budgeted for 2007 for ADAP).  But the extent of funding decrease in some metropolitan areas would not be as great as in the original plan of phasing out hold harmless.  I read an article, for instance, which quotes that New York would have an $8 million funding decrease, while Alabama will get $7 million additional for the year.
« Last Edit: December 10, 2006, 12:21:28 AM by gerry »

Offline Tim Horn

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Re: CARE Act Passed Today
« Reply #21 on: December 09, 2006, 02:19:48 PM »
I read an article, for instance, which quotes that New York would have an $8 million funding decrease, while Alabama will get $7 million additional for the year.

This particular issue is what delayed reauthorization of RWCA in the Senate.  The original bill was a five-year program in which funds would have been diverted from historically hard-hit areas like New York and San Francisco to emerging areas, including rural and urban areas in the South.  Here's where Senators like New York's Hillary Clinton found themselves between rocks and hard places -- potentially voting against the bill as it unfairly penalized New York, or voting for the bill to secure RWCA funding for the entire country.  Fortunately, some last-minute bargaining allowed areas like New York to keep their funding and allow for passage of the bill.  The deal?  In three years -- instead of the usual five-year RWCA funding package -- reappropriation of funding will likely be mandatory.

Tim Horn 


Offline Oceanbeach

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  • Posts: 3,565
Re: CARE Act Passed Today
« Reply #22 on: December 09, 2006, 07:52:59 PM »
Here is a possible scenario.  San Francisco will lose some of their Title I funding.  Sonoma County is roughly a 1 hour drive to the North and Santa Clara County (San Jose) is roughly an hours drive to the South. 

There are currently 9 Title 1 EMA's in California.  Sonoma County, Santa Clara County and Sacramento County will each be losing their Title I funding.  Marin County is part of the San Francisco jurisdiction and it is right across the county line.

It seems likely that thousands of people living with HIV/AIDS in Sonoma, Santa Clara and Sacramento Counties will be moving to the nearest available Title I jurisdiction when benefits are lost.  San Francisco is already budget crunching (just like the other Title I EMA's).  What will happen to the established system of care in San Francisco and Oakland when we start moving to their cities?

I have been to Hell, it looks just like Flat Funding and Title II.  I arrived in a remote and small county because the rent was cheaper than in Los Angeles.  That was Lake County and 6 years ago.  I could run 2 miles each day.  When I left Lake County 2 years ago, I could barely walk.  When I arrived in Lake County, I went to the local ASO and saw their "Food Bank."  That "Food Bank" was 1 shelf in a closet with a jar of Peanut Butter and some rice.  I once applied for a HOPWA move in grant to find that program does not exist in a Title II jurisdiction.  That was a $2000.00 loss of assistance.  There was a "lottery" for Section 8 Housing Assistance.  My disability income of NOTHING was $10.00 over the limit of minimum income for that program and all assistance was denied.

I have spent the last year on the Planning Counsil.  The Planning Counsil budget of $160,000.00 per year is 10% of the Title I funding.  I spent the last 18 months on a bunch of committees which were all perported to be to assist people living with HIV/AIDS in Sonoma County.  I have also been to the annual HIV Planning Retreat for the past two years.  This Retreat sets the tone for Planning Counsil activities in the next fiscal year.  Sonoma County will be starting some new committees and combining existing committees.  How does this help people living with HIV/AIDS?  This relates to job security for existing staff and little for people like us.

Last year, I took the time to design and market a tool to help maintain services in California.  I hit the publish button on December 1, 2005.  Since that day over 60,000 unique visitors/people have logged on to my site  www.Commission-on-AIDS.org .  Over 10% of thiose unique visitiors have been referrals from these forums.  I thank each and every one of you for that support.  You are truely the best!

Every page of that site was sent to the Director of the Planning Counsil, Prevention and Planning and the Admin Assistant from the Planning Counsil.  I have hundreds of email from the previously mentioned and employed saying "Good job!, You are a Powerhouse!, and on and on.  Each of these persons have an email address @sonoma-county.org.  Every request for support in circulating the site was denied and in this past year.  How many times has a person from @sonoma-county.org actually logged on the site?  So glad you asked, the answer for an entire year is 9 times.

I spent the Summer on the Funding Allocation Working Group.  This was a weekly meeting with a separate study group.  That was 40 miles each week at $3.00 +, per gallon of fuel.

Sonoma County will lose their $1.6 million each year and they are talking about forming another subcommittee.  This subcommittee was is called Community Advisory Board (CAB) and has the same function as Persons Living With HIV/AIDS Committee (PAC).  I was elected Chair for the first year of CAB in Lake County  and remained active on that committee for the years I lived there.  I have also been active in PAC for the past 18 months.  The difference between the two committees?  CAB, "How do we provide a voice for people living with HIV in Lake County?"  PAC, "How do we provide a voice for persons living with HIV/AIDS in Sonoma County?"  This is the same committee and if it works well enough why not have two?

When I left Los Angeles in July 2000, I thought I lost my edge.  There would be nothing to look forward to other than getting a comprehensive array of available services for HIV.  As one of the founding members of Re-connect, I began to believe that I too could once again join the working and the self-sufficient.  I feel used and abused by the Sonoma County Commission on AIDS, paid staff and all of the sub-committees.

It was not MY million dollars, I was trying to save, it was my health care and support services.  During this past year, every flyer I put up at the AIDS Food Bank was removed or hidden from general view by being under boxes.  Every flyer I put up at our ASO, in the Santa Rosa and the Guerneville offices were removed.  I left a series of letters to legislators in the waiting room at the clinic, which were also destroyed by staff.  My conclusion is  the staff lives HIV/AIDS vicariously through other people, and clocks out at 5:00 PM every Friday.

What I've learned about myself these past few years is that I never lost my edge, I had to reinvent myself.  Several members in these Forums have mentioned how much energy I have.  I have read "more than a "healthy" person."  The Ryan White Modernization Act (as written) is better for a greater majority of people living with this disease than what we had, but it symbolizes a significant loss for me.  I can not live in a Title II EMA again.   I can either move back to L.A., San Francisco or another Title I jurisdiction OR, reinvent myself again.

I have been looking at the stats on the COA website, which had only 20 key words and phrases to attract search engine visability.  I am presently working on a new site reduceworkerscompcosts.com.  It has 400 key words and phrases to attract search engine visability, a publish date in the Spring.  This site will feature a retail outlet with safety programs (of my design) in 9 industry types.  I started working on the design of SAFETY TRIVIA, while in the hospital with PCP in 1996.  That was the day I lost my job and my previous employer has offered nothing new in the past 10 years.  They are still hawking my old work. 

Since I worked on the local budget at the Funding Allocation Working Group, I know I have health care through the next fiscal year (which I can live with).  I see this as a 1 year window to get off the benefits cycle.  This life just isn't good enough and I want my old life (pre AIDS) back.  Have the best day
Michael 

     

Offline Jody

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Re: CARE Act Passed Today
« Reply #23 on: December 10, 2006, 11:39:47 AM »
Dear Michael...All the best to you for your hard work and here's hoping you "get your life back"...All the best to you as well Tim for all that you do and all our other full-time advocates here and those who took time to post...And to all those of us who called and wrote letters over the years, keep it up, worldwide........our work never stops.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Oceanbeach

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Re: CARE Act Passed Today
« Reply #24 on: December 11, 2006, 04:06:46 PM »
I sent an email to the HIV Section Manager at our clinic last night.  My initial question was whwther the FY 2007 budget we approved will remain valid and whether or not there will be sufficient funding to cover the health care needs of people like my self in 2007, 2008, and/or 2009?

The response was:  Sonoma County could lose their million per year as early as March 1, 2007.  We may get 500 or 700 thousand but there will be considerable discussion on this topic at the Commission on AIDS meeting this Wednesday.  I will be at that meeting. 

I also received a long-winded email from the director of our planning counsil.  As most of the newspaper reporters and publishers in Sonoma County have said over the past year, "anything coming from that office is prepared and predictable."   The short of it is... The President signed the bill.  Have the best day
Michael
(who has clearly had too much coffee this morning)

Offline Eldon

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Re: CARE Act Passed Today
« Reply #25 on: December 11, 2006, 09:49:24 PM »
Hey Michael...

I just wanted to chime in and commend you for all of your past, current, and future efforts that you are facilitating over in your neck of the woods. You will have your old life back and then some through all of this. My hat if off to you. Keep your eye on the prize and take care of YOU!



Don't Give Up, Don't Give In... cause it is all within you to WIN!

Offline Oceanbeach

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Re: CARE Act Passed Today
« Reply #26 on: December 11, 2006, 10:36:12 PM »
Thank you Eldon,

A related topic to this thread, which has been in my mind over the past year is living in a Title II jurisdiction.  Here is where I am coming from.  I left L.A. about 6 years ago and could run two miles every day.  I used to run with my dog from Golden Shores Ave to Huntington Beach Pier.  I had the best medical care available.

I left L.A. because my family had a vacant property in Lake County and offered it for free.  That was a free house on a 20 acre property in the country, but a 500 mile move.  I developed PN while there and when I moved to Sonoma County two yeras ago, I could barely walk.  Every step was in agony, the HIV clinic ran over $12,000.00 in tests and ordered Physical Therapy and did nothing else.

Dr. Kubota and his staff at the Center for HIV Prevention and Care have worked very hard in correcting the problems and I can walk without being in pain.  I still can't run a city block but the healing process is slow.  When you take a million dollars from an organization, services will be lost no matter who the payer of the last resort or the first resort is for that matter.  This is one of the reasons I have been working so diligently on this issue for the past year.

Now the funding is going to another state or another city or wherever, that is not the issue here.  We should all get equal treatment no matter what Zip code we live in.  An additional 200 million dollars distributed evenly nationwide would have gone a long way. 

I think it is now in my best interest to move away from Sonoma County.  I can move across the county line into Marin and be in the same Title I EMA that is funded with San Francisco, I can move to San Francisco and never have to worry about funding for care and services again.

I had a conversation with Mr. Nishikawa, Director of the Sonoma County Commission on AIDS about a year ago.  I have never had a real clear understanding why Los Angeles and San Frasncisco did not have the same RWCA issues as we do here.  Mr. Nishikawa told me a story, he said... " Imaging a dysfunctional family gatering at a holiday.  It is hosted by Uncle Los Angeles because he has all of the money and the other 9 EMA family members attend.  Aunt San Francisco is very welcome because she is beautiful and has inherited the house.  Her son, Sonoma County is a party boy and the family does not give a shit if he is there or not.

Something I have never brought up in any of these forums is, in the two years I have lived in Sonoma County (Russian River) I only have two real friends.  Don, a straight guy is my closest friend and he moved away to Paradise last year.  I spent Thanksgiving with his family in Magalia and almost everyone was from San Francisco.  Tim, has AIDS and still works at Kaiser in the billing dept., we spoke on the phone tonight and he is requesting a transfer to Kaiser Atlanta and will be leaving in a few months.   Then there is the crazy lady I take care of and damage control at the bank and with her landlady has gone over the top.  I need to get her moved back into town so she will be out of harms way.  Four years ago she was a Psychotherapist, with a degree from U.C. Berkeley, and almost 20 years working in support for people living with HIV incarcerated in the prison system.

It does not seem likely the County of Sonoma will be able to maintain the system of care they established with significantly reduced funding.  I should be looking at moving to Marin, San Francisco or back to L.A..  I have to keep an open mind to any and all possibilities right now.  Have the best day
Michael




Offline Eldon

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Re: CARE Act Passed Today
« Reply #27 on: December 11, 2006, 11:04:02 PM »
You are Welcome Michael,

Truly, you are a walking miracle right now. In time, you will be able to run that (2) two mile stretch once again. It is all about rebuilding and as you would say reinventing yourself. As a man in your position and your stature, these goals that you have in mind shall carry you a long way. In fact, the goals are clearly defined, when they defined in such a manner, you WILL achieve them.

It was a blessing that your folks had the vacant property that was available for you to move into so that you could regroup and redirect your life. I am quite sure that this was one hell of a relief to you as far as the fair market rent values that exist in the LA market.

I DO agree 1000% that there should be equal distribution of these funds no matter what Zipcode we live in. Indeed an extra $200 million dollars would go a long way.

As far as your vision to relocate, follow your inner intuition. You are aware of the situation and your surroundings and it is what you feel that is BEST for you at this time. Time does bring about a change. In most cases, the changes are for the better. Either way you will end up in a EMA.

These Friends that are in your life are there for a reason. In fact, they have been there with you through all that you have gone through. In one way or the other we are all in our lives for each other. It is even more empowering when the realization of this takes effect with our inner awareness. It is good that you had a great Thanksgiving with them and share those special moments with the family.

With Tim moving to Atlanta, that will be a good thing for him as well. There are a number of ASO's in Atlanta for persons living with HIV/AIDS. in fact, Atlanta is one of my choices when I also relocate myself. As for the crazy old lady, you are in her life for a reason as well. Continue to do what you can do for her and keep her out of harms way.

Most definitely you will want to keep an open mind to all of your possibilities that exist. Out of these possibilities, there will be a wise choice that shall be made to benefit your future and your Goals.

I wish you the BEST in all of your endeavors. I am sending some positive thoughts and prayers your way today my friend. Take care of YOU!

Keep in touch!


Don't Give Up, Don't Give In... cause it is all within you to WIN!

« Last Edit: December 11, 2006, 11:07:42 PM by Eldon »

Offline Lis

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  • Posts: 593
Re: CARE Act Passed Today
« Reply #28 on: December 12, 2006, 12:15:20 AM »
No matter how it plays out.. I'm still on the waiting list in Lincoln Ne....
poz 1986....

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: CARE Act Passed Today
« Reply #29 on: December 12, 2006, 06:28:29 AM »
Dear Lisbeth,

I was just checking state health facts which was sent to me by Jena.  There are 6 states listed with ADAP waiting lists and Nebraska is not one of them.  The most recent update on this Kaiser site was Sept 20, 2006.  I think you have been dropped through the cracks.  If public discosure is not uncomfortable for you, send some letters to Congress  and to the editors of your newspapers.  Have ther best day
Michael

Offline J.R.E.

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  • Posts: 6,960
  • Joined Dec-2003 Living positive, since 1985.
Re: CARE Act Passed Today
« Reply #30 on: December 12, 2006, 07:51:14 AM »

Not sure how much of this has been previously stated.... Just read this today :

New AIDS funds may help bring transportation to rural patients
The Associated Press

By DESIREE HUNTER

December 11, 2006

Without this, these people would have no other way to get medical care. Patients living with HIV/AIDS in rural parts of the country often find themselves struggling not only with their health problems, but also with finding ways to travel for medical help located miles away in urban areas.

Advocates said Monday that long-awaited transportation programs in parts of the South can become a reality under a compromise national funding measure. Along with $70 million in new money, it adjusted the funding formula to help Southern points where the disease is spreading fastest.

'If you look at our urban areas, primary care may be available, but if you go out beyond the reaches of cities like Birmingham or Charlotte, N.C., or Raleigh-Durham, it is not unusual for people living with HIV/AIDS to travel really far distances to get to a primary care provider,' said Evelyn Foust, who heads North Carolina's HIV prevention branch.

'They can have a real difficult time getting primary care, and that access makes all the difference in the world,' she said.

The House renewed the $2.1 billion Ryan White Care Act on Saturday, ending a long-running tug-of-war between Southern states and those with larger urban areas, which previously had the highest rates of HIV/AIDS and receive more funding.

Advocates say the new act, which runs for three years instead of five as originally proposed, would make services in the South more comparable to those in other regions.

AIDS Alabama CEO Kathie Hiers said the extra $7 million Alabama has been authorized to receive would be used to expand transportation programs and the number of medications that are available through the Alabama Drug Assistance Program.

Alabama has 35 medicines on the list now. New York has 500 medications on its list and patients in Massachusetts can have 'just about any drug they need,' Hiers said.

She said officials from states with bigger urban areas kept turning down the compromise 'out of fear of losing money, which I could understand. But I keep telling them 'I wish you could work in Alabama for about a month and see how it is to try and serve people when you don't have the funds for even basic services.''

In addition to increasing available medications and transportation programs, advocates say Southern states will work to add case workers, give more funding to clinics, raise income caps so more people will be eligible for assistance through the Ryan White act and increase funding to help patients with utility bills.

Some parts of Alabama have transportation programs that are funded privately or through federal grants, West Alabama AIDS outreach executive director Mona Ochoa-Horshok said.

Her organization's two vans traveled 24,915 miles from January through September, taking 51 patients to their doctor visits, she said. The agency serves about 200 patients, but has just two case workers.

'Our numbers illustrate the fact that there's a need for these services. Even though we only have about three percent of the state's cases in our public health area, about a quarter of our clients need transportation services,' she said. 'Without this, these people would have no other way to get medical care.'

David Little, head of South Alabama Cares in Mobile, said nearly all the 900 people his organization serves must travel to Mobile for treatment. A roundtrip from the furthest of the 12-county service area is almost 400 miles, he said.

According to estimates from the U.S. Senate Committee on Health, Education, Labor and Pensions, North Carolina would get an additional $10.2 million annually while Georgia would get $4.1 million, Louisiana would receive $1.1 million, South Carolina would get $2.3 million and Mississippi would gain $1.7 million.

Janet Johnson, who was diagnosed with HIV in 1985 and now has AIDS, said she and her friends were encouraged by news of bill's passage and looked forward to its benefits.

She said they've heard of some states paying for patients to receive massages and other luxuries but said she'd be happy with more assistance with necessities like food and housing.

'If we could go somewhere and get an hour massage for free, shoot, we'd think we died and went to heaven already,' she said from her Birmingham home. 'But that's just an add-on, extra pleasure.

'The services we're looking at are making sure people in the state of Alabama and in the rural South can get to the doctor, can get their medication, can get some food, can get some personal hygiene supplies _ all the things that make you exist.'

.


 Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



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 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 DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

 


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