World AIDS Day 2006 - How am I supposed to feel today?

[tcellsnaction]

Another year and still after 19 1/2 years I still am confused how I am supposed to feel today.....I want to celebrate the fact that I still am alive, but start crying when I think of the almost 200 friends I have lost over the years.  It is not a day of celebration, yet another day for calls to action.  Yet, I still feel the sense of apathy about those of us in the United States living with this disease as the focus has now focused on the global front.  I attended the International Conference on AIDS in Toronto and even President Bill Clinton acknowledged that the United States was falling down on its job with respect to helping its own people.....We can give billions of dollars to impoverished countries, but can't even get our own Ryan White funding passed without political strife.....Every year I see AIDS service organizations hold their breaths about the reauthorization and those of us dependent on their services hold our breaths also not knowing if our medication funding will eventually be eliminated.

Today is yet another day I deal with survivor guilt.  Not in a depressing sense, but in more a reflective sense that there is a sense of comfort now about the disease and the sense of urgency has disappeared.

Sooooo....I need to go shower and get ready for my job at an AIDS service organization....and thank the people around me for their commitment to my survival.....and yours....

I have a blog .....   www.tcellsnaction.blogspot.com and would welcome additional comments there as well....

Be well.......

[Javicho]

I would say to be thankfull that we are still alive and well, think about others that they don't even have the medication or the information that they need to face this.

Think that everybody here loves each other

[DanielMark]

Well, Tcellsnaction, I'd say you are supposed to feel whatever you are feeling.

Maybe this will help cheer you up.

Bush urges US Congress to pass AIDS bill
2 hours, 0 minute ago

WASHINGTON (AFP) - President George W. Bush touted US efforts to battle HIV/AIDS worldwide and urged lawmakers to renew a law aimed at providing treatment and care for patients in the United States.

"The pandemic of HIV/AIDS can be defeated, and the United States is willing to take the lead in that fight," he said after talks with leaders of groups that battle the disease in places like Botswana, Ivory Coast and Namibia.

His comments came on World AIDS Day.

Bush touted his President's Emergency Plan for AIDS Relief (PEPFAR), which the White House said commits 15 billion dollars over five years for treatment for two million people, prevention for seven million and care for 10 million.

"Before it became into being, there was about 50,000 people receiving lifesaving drugs. Today, there are over 800,000 people receiving lifesaving drugs," the US president said.

"We thank those who are on the ground in the countries around the world who are using taxpayers' money to save lives," he said. "The American people need to know we're getting good results with your money, and we'll continue to spend it wisely."

Bush called on the US Senate to follow the House of Representatives in reauthorizing legislation, initially passed in 1990, that provided medical care for HIV/AIDS patients but expired in September 2005.

"I call upon the Congress to reauthorize the Ryan White Act. The bill has passed the United States House of Representatives; the Senate has time to act before it goes on recess," said the president.

"It is an important piece of legislation that will enable us to continue our fight against HIV/AIDS domestically," he said.

[heartforyou]

How I feel or am supposed to feel today?

In the first place I feel overwhelmed by the figures I hear on the radio.
25 million people died of AIDS....... It is 2 1/2 times the population of my country, Belgium.

I feel lucky I survived, but also tired from fighting HIV.
Hopeful for the future, but sad over the past, over my lost dreams, over the future I once thought I would never see.

Making a vow today that, once my business is sold, I will no longer hide my status. 20 years in the closet is enough.
How can we make HIV acceptable when we do not speak ou about it? My friends know, and my close family does, but my uncles and aunts are not aware of the war I fought over the last 20 years.
Cancer is mourned over openly in the family, but I cry in silence when I throw up, my muscles ache, my head bangs, my feet or numb and my veins pop up on my arms and legs like the Alpes  on a map.

I wore my ribbon today. In memory of the 150 colleagues I lost to AIDS. In hope for all of us infected.
May we never see the horror of the eighties again, but also may we never forget the slaughterhouse that HIV once was amongst the gay population.

My heart was going out to every single one of you out here.
United we stand, united we fight, united we struggle, but united we hope.

Love

Hermie
1st of December 2006

[Oh501sguy]

Hermie,

Thank you.  You stated how I'm feeling today.  I've been poz since Feb 93.  I've lost many friends and the pain still dosen't go away.  I don't have survivors guilt, but often I wish I could be with them.  Is that a bad thing?  Today, I'm a pretty lonely guy.  I'm still young, still healthy...enough whining.   Ok...maybe not!

But Im ANGRY...Im pissed... Frustrated!  Why?  Oh for the love of God.... This country as well as many others (but especially this one) is so screwed up.  Bush wants a war.  So he finds Billions upon Billions of dollars to send young guys to war to kill...murder etc. 
He wants to Help all the poor people in other countries who are suffering from HIV/AIDS.  But he refuses to help his own countrymen because in his eyes, we are sinners.  (Judge not, least ye be judged?)  He takes away our money and gives it away to fund his own personal needs and of his buddies. A**hole.

All of these ribbons of every color have come out to help all the worthy causes, but HIV / AIDS has been virtually swept under the carpet.  I feel we are forgotten.

The are trying to develop a cure, but that wont help the rest of us who are already infected.

It makes me just so angry and I feel so helpless!   

Im angry at myself.  Im not doing enough, I ache to do something, but I dont know how or what to do. 

Thanks for letting me vent.  I hope I didn't offend anyone.  But I know you all can feel my frustrations.  Thank you for listening.

And finally, Bless all of my departed brothers and sisters.  I miss you very much.  I don't just think of you on Dec 1.  I think of you all of the time. 

Chuck

[tcellsnaction]

What President Bush failed to tell everyone was a reiteration that the reauthorization had been rewritten to be 75 percent towards medical and only 25 percent for other services.....also not mentioned was that San Francisco and larger urban areas were the direct targets of these funding cuts with their new reallocation formulary.  The bill is currently being stalled in the Senate by Senators Clinton and Feinstein because New York will also be greatly impacted by the rewritten legislation.  With the new legislation formulary, smaller areas wiith less cases of People Living With HIV/AIDS will receive disproportionate amounts of funding because of changes in the requirements for the funding reporting base....HIV/AIDS cases that are current vs. newly diagnosed.....I already heard of one PWA standing before Congress when this was discussed and said that because he was a long term survivor was no longer being counted.....

What is going to happen to all the other needs of People With HIV/AIDS?  What about the homeless, food, case management and counselling needs?  In some cases the CARE Act doesn't "care" about these needs thinking that the medications alone will bring back a sense of utopia.....ok....so we are healthy but dying on the street, depressed and hungry because so many of us have lived too long. 

Yes, the Bill passed the House and now he is urging the Senate to pass this legislation before the Democrats take office and leave well enough alone......Another bad media attempt by President Bush, using a day like today to act like he supports People With AIDS in his own country......Why couldn't he urge them to do that before they went into recess?  Because it didn't make good politics, TV and media relations in the moment...and he was hoping that the Republicans would maintain control and thie new legislation would eventually passed.  Sorry.....I only hope that if anything does pass it will be a push for level funding at least....I can still dream....

[DanielMark]

What President Bush failed to tell everyone was a reiteration that the reauthorization had been rewritten to be 75 percent towards medical and only 25 percent for other services.....also not mentioned was that San Francisco and larger urban areas were the direct targets of these funding cuts with their new reallocation formulary.  The bill is currently being stalled in the Senate by Senators Clinton and Feinstein because New York will also be greatly impacted by the rewritten legislation.

I had no idea this was the case, but then I'm not from your country. All I saw was that the push is on for your Congress to reauthorise the Ryan White Act. Didn't realise they had adjusted anything about it:

The CARE Act works toward these goals by funding local and State programs that provide primary medical care and support services ....

No offence intended,

Daniel

[tcellsnaction]

Sorry if it appeared that way....I was not trying to kill the messenger...lol ..actually it was refreshing to see that at least people are paying attention to what is happening.....sometimes my passion can overtake my intent....oops...

and I also know that you were trying to be supportive....thank you.... ?-)

[DanielMark]

Sorry if it appeared that way....I was not trying to kill the messenger...lol

Well you can try. My doctors have been trying to for years, but I refuse to lay down and die.

Just another example of cyber confusion combined with one of my trademark brain farts.

Daniel

[Andy Velez]

I'd like to see the new Congress fix the Federally-funded prevention programs which have for years now represented the religious right's agenda.

We need good safer sex education programs and encouragement of the use of condoms right at the top of the list.

Current programs emphasize celibacy and monogamy and way down at the bottom of the list are condoms. More tyranny and death dealing from the right.

[tcellsnaction]

In San Francisco, our Prevention and CARE groups have a joint committee called Ponits of Integration, now called Prevention with Positives, and I am asking to become a community member.  I do not know if other areas have the same type of committee....

I agree that more needs to be done beyond the abstinence and monogamy expectations that are unrealistic and personally think those dollars are wasted when a more universal approach could be taken....They seem to think that the Nancy Reagan soft approach of "Just Say No" is going to be the end all of the disease....

Hopefully, more positive people will be empowered to get involved in this effort and recall the advocacy efforts of days long gone and be a part of the prevention effort change....

With that though, we have to understand the thinking of those who serosort, the strategic positioner and the poz chasers.  Without this understanding, I believe that prevention efforts that include positives will be futile....

We used to be able to give out condoms as part of the prevention programs, but when the religious right took over, that went away with the welcoming of the "if you have sex before marriage you're going to hell" attitude......well, I will be joined by many of those proponents, no doubt and the immediate outcome is the spread of disease and unwanted pregnancies (but that's another deal).....I just care about being a part of the end of the disease...without judgement....