June 2006 Archives

My initial thought was to write an entry, that would honor our fallen and serve as a gentle reminder of acknowledging all of those we have lost to this disease. I considered recollecting some of the beautiful people I have known, their challenges with HIV and the inevitable outcome, and then I thought: Why?

I don’t need to travel through a quagmire of painful memories to remind anyone of how crushing those memories can be. For too many of us, who started this journey in the 80s, we stood by, helpless and watched as a generation of gay men was taken from us. You don’t need to be reminded of that loss.

How much beauty, love and joy we have lost will never be tallied. There will always remain those holes in your heart, where you have lost the soul that occupied that space. There is no going back, only memories.

To anyone who has ever lost anyone to HIV, you don’t need to relive the horror.

I can’t imagine that there are any of us, who when reminded of the 25th Anniversary of HIV, do not float back, to a very different time and remember...

I don’t need to remind you of that.

A recent thread, concerning a woman who was prosecuted for infecting her lover with HIV, stimulated many ideas, with everything from people being responsible for protecting themselves to the draconian laws that target positive people for infecting others, often with little regard to the fairness of any of these laws.

But these laws and policies do not enact themselves; rather they are a result of our elective form of government, in which we elect representatives to formulate such things in our stead. Unfortunately it seems that too many people have forgotten that: whom you vote for matters and in more ways that most people could imagine.

No matter what you may think, you can’t just vote, without doing any research on the candidates and then claim ignorance about what your representatives have done. Its 2006, with midterm elections just around the corner and so, for some of us it’s a time when you need to start fixing what you did in 2004.

If you voted for Bush in 2000, well all I can say is “Who knew?” what would happen to this country. Six years ago, George claimed to be a “compassionate conservative” and even if he made it to the White House, nobody really expected that he’d be in charge. The GOP orchestrated his election campaign perfectly, employing incredibly divisive issues, to smoke screen the real concerns. Enough voters swallowed the bait and put the Republicans in power.

But if you are an American, who could see the damage George did in his first term and if you still voted for him and other Republicans in 2004, you knew what you were doing. You can’t wish it away, nor explain it away. By extension of your vote, you are personally responsible for all of the president’s misdeeds. Whether the lies leading to up to war, the mismanagement of Iraq, our crushing national debt, failing to respond to Hurricane Katrina or pandering to the Radical Right

You are responsible for an energy plan written by Big Oil, forbidding Medicare Part D from negotiating drug prices with manufacturers, unauthorized wiretaps and domestic spying, trampling on our constitutional rights and flouting Congress and the courts. Unfortunately, the one that hurts the most is you are responsible for FLAT FUNDING HIV TREATMENT AND SERVICES FOR THE PAST SIX YEARS.

(For those of you who don’t see a correlation between flat funding services, you must remember that there are more patients requiring services than there are funds to provide them. So with flat funding they can’t meet the current need. Now add to that the estimated 40,000 new infections each year and you can see how dangerous this trend can be. Each year our most important programs are forced to serve fewer clients, because the money is just not there.)

Unfortunately, too many of you elected representatives who decided that some people’s lives do cost too much and so the ADAP waiting lists continue. Instead of adding a couple of hundred million of dollars (a pittance in D.C.) to HIV programs like ADAP and Ryan White, which would have wiped out waiting lists and expanded services, they decided that a half a trillion dollar of defense spending was much more important.

That decision to flat fund programs, especially ADAP, has resulted in deaths, because patients were unable to get the necessary medication they needed to survive.

Republicans want you to forget that we could have saved BILLIONS OF DOLLARS in the new Medicare D prescription drug program by simply allowing the government to negotiate bulk drug prices with manufacturers, but that’s not what they did. Instead they structured the program to benefit the drug manufacturers, not the insured. Waiting lists for HIV services could have been abolished and/or services expanded, but Republicans had better use for our tax dollars.

Oil companies are posting record profits and we are squandering $82 billion dollars each month, for the war in Iraq, yet they can’t find a few hundred million dollars to make a real difference.

Americans who voted Republican also fostered the culture of corruption in Congress that emboldened Tom DeLay, “Duke” Cunningham, Jack Abramoff and a long list of others. Voting for the Empire of George in 2004 means you were a knowing accomplice in implementing everything from misplaced, mean-spirited priorities to under-funding of HIV prevention, treatment and services.

This president has done more damage to this country in the past six years than almost any other president. He’s removed the science from prevention messages, required foreign countries to promote “abstinence only” prevention messages (or forgo our help), to promoting divisive issues to divert attention from the real travesties in this country. Most disappointing is that he has consistently allowed the under-funding of many programs that help the neediest of Americans.

We all have to stop hiding and realize that there is a war going on and positive people are losing, big time. We seem unable to speak as a community, which I believe is a result of the diverse nature of our community and not intentional. We can’t even seem to agree on which messages are most important or what we should be doing regarding so many issues. We don’t have any real national organizations that advocate for pos folks. So it’s critical that you get involved at the local level, to help start formulating responsible policies.

It’s time to return to the streets and begin to re-exert our rights to proper treatment and services. We need to get up and start doing something, ANYTHING, to help us attain the resources and support that we deserve.

Learn how our government works, how policy is made and how to influence that policy.

Too many of us have this attitude of “I don’t have to get involved, because other people are” and that’s a crock. ASOs can’t staff boards with PWAs and HIV Planning Councils are begging as well. In some locals, it is as if PWAs have all fallen off the planet. I live in an area with thousands of pos men and we can’t staff our boards. How sad is that?

Horrible things are said and done to our community and rarely do we stand up and demand the respect that we deserve. So if they won’t give us the respect, then we’ll just have to claim it ourselves. Learn how your government works and get involved so that you become part of the solution.

Change is incredibly hard and we have a very tough road ahead of us, but if we each do our bit, then that’s just a little lighter burden that we each have to bear.

Two many Americans think that all we have to do to fulfill our civic duty is show up at the polls. Not enough of us are paying attention, nor understand that voting in a representative government can have many pitfalls. Through your ballot, you are sanctioning what elected officials do in your name, once in office.

So for those who voted for George, you’ve sanctioned some of the most egregious errors, whether it is substituting religious dogma for science at the CDC and in our HIV and disease prevention messages, or ignoring the pleas for adequate funding of HIV programs and services. With all that we could be doing, people are still dying from HIV, right here at home, because the programs that keep them alive, simply cost too much.

Hopefully we can all be honest, at least with ourselves, and agree that both political parties deserve part of the blame for our current state of affairs. Our government is structured to be adversarial in nature and that’s not happening. We have a renegade White House, supported by a rubber-stamp Congress and it’s just not working. There is no balance in Washington.

This isn’t about which party is better, it’s about doing what is right for this country. Please reduce the power of the Republicans, because if you think things are bad now, how do you expect they will be in another 2 years?

Think about this: the war in Iraq is just 6 months shy of equaling how long we were involved in WWII. Enough said.

What America needs in government is some balance. Do your homework and work to elect those representatives that you believe will support the issues of importance to you. Please help to restore some balance in our government.

Elections are coming and you hold the power.

As voters, we are responsible for whom we elect and what they do when in office.

A recent thread, concerning a woman who was prosecuted for infecting her lover with HIV, stimulated many ideas, with everything from people being responsible for protecting themselves to the draconian laws that target positive people for infecting others, often with little regard to the fairness of any of these laws.

But these laws and policies do not enact themselves; rather they are a result of our elective form of government, in which we elect representatives to formulate such things in our stead. Unfortunately it seems that too many people have forgotten that: whom you vote for matters and in more ways that most people could imagine.

No matter what you may think, you can’t just vote, without doing any research on the candidates and then claim ignorance about what your representatives have done. Its 2006, with midterm elections just around the corner and so, for some of us it’s a time when you need to start fixing what you did in 2004.

If you voted for Bush in 2000, well all I can say is “Who knew?” what would happen to this country. Six years ago, George claimed to be a “compassionate conservative” and even if he made it to the White House, nobody really expected that he’d be in charge. The GOP orchestrated his election campaign perfectly, employing incredibly divisive issues, to smoke screen the real concerns. Enough voters swallowed the bait and put the Republicans in power.

But if you are an American, who could see the damage George did in his first term and if you still voted for him and other Republicans in 2004, you knew what you were doing. You can’t wish it away, nor explain it away. By extension of your vote, you are personally responsible for all of the president’s misdeeds. Whether the lies leading to up to way, the mismanagement of Iraq, our crushing national debt, failing to respond to Hurricane Katrina or pandering to the Radical Right

You are responsible for an energy plan written by Big Oil, forbidding Medicare Part D from negotiating drug prices with manufacturers, unauthorized wiretaps and domestic spying, trampling on our constitutional rights and flouting Congress and the courts. Unfortunately, the one that hurts the most is you are responsible for FLAT FUNDING HIV TREATMENT AND SERVICES FOR THE PAST SIX YEARS.

(For those of you who don’t see a correlation between flat funding services, you must remember that there are more patients requiring services than there are funds to provide them. So even with flat funding they can’t meet the current need. Now add to that the estimated 40,000 new infections each year and you can see how dangerous this trend can be. Each year our most important programs are forced to serve fewer clients, because the money is just not there.)

Unfortunately, too many of you elected representatives who decided that some people’s lives do cost too much and so the ADAP waiting lists continue. Instead of adding a couple of hundred million of dollars (a pittance in D.C.) to HIV programs like ADAP and Ryan White, which would have wiped out waiting lists and expanded services, they decided that a half a trillion dollar of defense spending was much more important.

That decision to flat fund programs, especially ADAP, has resulted in deaths, because patients were unable to get the necessary medication they needed to survive.

Republicans want you to forget that we could have saved BILLIONS OF DOLLARS in the new Medicare D prescription drug program by simply allowing the government to negotiate bulk drug prices with manufacturers, but that’s not what they did. Instead they structured the program to benefit the drug manufacturers, not the insured. Waiting lists for HIV services could have been abolished and/or services expanded, but Republicans had better use for our tax dollars.

Oil companies are posting record profits and we are squandering $82 billion dollars each year, for the war in Iraq, yet they can’t find a few hundred million dollars to make a real difference.

Americans who voted Republican also fostered the culture of corruption in Congress that emboldened Tom DeLay, “Duke” Cunningham, Jack Abramoff and a long list of others. Voting for the Empire of George in 2004 means you were a knowing accomplice in implementing everything from misplaced, mean-spirited priorities to under-funding of HIV prevention, treatment and services.

This president has done more damage to this country in the past six years than almost any other president. He’s removed the science from prevention messages, required foreign countries to promote “abstinence only” prevention messages (or forgo our help), to promoting divisive issues to divert attention from the real travesties in this country. Most disappointing is that he has consistently allowed the under-funding of many programs that help the neediest of Americans.

We all have to stop hiding and realize that there is a war going on and positive people are losing, big time. We seem unable to speak as a community, which I believe is a result of the diverse nature of our community and not intentional. We can’t even seem to agree on which messages are most important or what we should be doing regarding so many issues. We don’t have any real national organizations that advocate for pos folks. So it’s critical that you get involved at the local level, to help start formulating responsible policies.

It’s time to return to the streets and begin to re-exert our rights to proper treatment and services. We need to get up and start doing something, ANYTHING, to help us attain the resources and support that we deserve.

Learn how our government works, how policy is made and how to influence that policy.

Too many of us have this attitude of “I don’t have to get involved, because other people are” and that’s a crock. ASOs can’t staff boards with PWAs and HIV Planning Councils are begging as well. In some locals, it is as if PWAs have all fallen off the planet. I live in an area with thousands of pos men and we can’t staff our boards. How sad is that?

Horrible things are said and done to our community and rarely do we stand up and demand the respect that we deserve. So if they won’t give us the respect, then we’ll just have to claim it ourselves. Learn how your government works and get involved so that you become part of the solution.

Change is incredibly hard and we have a very tough road ahead of us, but if we each do our bit, then that’s just a little lighter burden that we each have to bear.

Two many Americans think that all we have to do to fulfill our civic duty is show up at the polls. Not enough of us are paying attention, nor understand that voting in a representative government can have many pitfalls. Through your ballot, you are sanctioning what elected officials do in your name, once in office.

So for those who voted for George, you’ve sanctioned some of the most egregious errors, whether it is substituting religious dogma for science at the CDC and in our HIV and disease prevention messages, or ignoring the pleas for adequate funding of HIV programs and services. With all that we could be doing, people are still dying from HIV, right here at home, because the programs that keep them alive, simply cost too much.

Hopefully we can all be honest, at least with ourselves, and agree that both political parties deserve part of the blame for our current state of affairs. Our government is structured to be adversarial in nature and that’s not happening. We have a renegade White House, supported by a rubber-stamp Congress and it’s just not working. There is no balance in Washington.

This isn’t about which party is better, it’s about doing what is right for this country. Please reduce the power of the Republicans, because if you think things are bad now, how do you expect they will be in another 2 years?

Think about this: the war in Iraq is just 6 months shy of how long we were involved in WWII. Enough said.

What America needs in government is some balance. Do your homework and work to elect those representatives that you believe will support the issues of importance to you. Please help to restore some balance in our government.

Elections are coming and you hold the power.

As voters, we are responsible for whom we elect and what they do when in office.

The 25th Anniversary of the HIV pandemic has brought back a lot of memories. While almost all of them are somehow painful, they still represent a historic chronology of people who demonstrated the power of the human spirit, in dealing with a disease that was essentially unknown, had no treatment and generally resulted in the demise of almost all who contracted it. As I reflect on the past, I feel it important to share some of my recollections, so that newcomers can learn our history and to insure that we will never forget.

In the early 1980’s, or the beginning, there was nothing more than death and carnage as HIV infection cut a wide swath through the gay communities. Something was killing our friends and we were powerless to stop it. However, there are people, who displayed incredible courage then, in those early worst years of the AIDS crisis. People who lived and died by their promises and shared the intimacy of death, and then the world moved forward and grief subsided and lives moved on.

But make no mistake; there are heroes among us right now.

There are remarkable people among us, who showed astonishing courage and leadership, who summoned those forces and survived. They refused to be ignored and went so far as to stage "die-ins" to shame our government into action. They lobbied for treatment and services, got accelerated approval for anti-HIV drugs and formed the first AIDS Service Organizations. A time when countless people stepped forward, who were able to incorporate our needs, into direct actions to provide what our community needed most.

There are those who would don the required gown, mask and gloves to feed AIDS patients, housed in negative-pressure rooms. The food tray was left outside the door, because even the staff avoided entering the room unless absolutely necessary. There were those who held dozens of hands, as their friends shed their earthly bonds. Some of them buried their lovers, often helping to hasten their demise, by hoarding pills for overdosing or through whatever means were available.

There were AIDS buddies to help those in their final days. Food banks, clothes closets, delivered-meals and support groups. There were the problems of keeping an ASO board of directors full, when members kept dying each month. We cared for each other, attempting in our own feeble way, to somehow stem the deaths and loss of our friends. It was a time when often the only world that felt safe, was when you were surrounded by other poz people, and for many, they were also your only friends and family.

A time when old friends called to say goodbye, and by “goodbye” they meant forever. When all of us had a file folder marked “Memorial” that outlined how we wanted our service to be conducted. Or the instructions on what should be included in your panel for the AIDS Quilt. A time when each ring of your phone, sent chills up your spine. When attending support groups were always a challenge, because you would see who did not survive from the previous week.

A time when people shot themselves, overdosed and jumped off bridges when they got their test results. When memorial services, honoring multiple friends would be required, because there were not enough churches in which to honor the dead. Many churches flatly refused to allow memorials for AIDS patients. A time when, most funeral homes would not even consider accepting an AIDS patient for a memorial and burial; they didn’t want to risk becoming “contaminated.” A horrible time, not only in terms of human costs, but when we were reduced to begging to get help to bury our fallen comrades.

There was profound, shocking sadness here, amongst us all, but the years went by and HIV medicine got better, people stopped dying in droves and we found other lives to lead. Our sadness somehow seems a distant, dark dream.

Some of us who have “dodged the bullet” are beginning to reshape our lives. For once many of us we can finally make plans for the future. But there was a time when I knew all the intensive care nurses by name. When a phone call late at night always meant someone had died. A time when our hospital buddy list, would change twice daily and we ran out of room, on our newly acquired plague honoring our dead, because the spaces for 300 names were filled in a matter of months.

Brian tested positive in the early 1980s, shortly before I did. Yet only a few months after the devastating news, he agreed to facilitate an HIV support group. We regularly saw men join the group, get sick and die, often within months. All we could do is try to calm their fears, meet their needs and insure that they would not die alone.

Watching them disintegrate felt like previews of coming attractions. But Brian was remarkable, a reassuring presence to everyone, and worked with the group for a couple of years, despite the emotional toll and the high body count. We found courage and fortitude that we did not know we possessed and compassion to ease our suffering.

It was a time that no one could prepare you for, because you can’t train to combat a pandemic. Nobody warned us of the emotional toll the carnage would demand or how to bury your friends, for years on end. Or how to deal with a world and country that refused to see and respond to this horrific plague: yet somehow we did, we persevered, we survived and are left to share the history.

Through this journey I have learned a couple of things about myself. The first being: My most courageous self, the best man that I’ll ever be, lived two decades ago during the first years of a horrific plague. He worked like a man possessed, alongside a million others who had no choice but to act. He secretly prayed to survive, even above the lives of others, and his horrible prayer was answered with the death of nearly everyone around him.

The second truth is that my experience has given me a glimpse into the full potential that we all possess to become more than we are. I have a better understanding of the horror of the Holocaust and plagues of the past, where you were forced to just stand there, powerless to act, as something took from you all that you loved, while secretly praying that your number would never be called. Somehow, even through the heartache, your instincts engaged, you survived and you moved on.

I suppose saying that I miss that brutal first decade would seem strange, but it would be partially true. I miss my friends terribly. I miss the man I was forced to become, when an entire community abandoned tea dances for town hall meetings, and when I learned to offer help to those facing what terrified me the most. When I learned to reach beyond myself to help others and when I determined just how powerful my reach could be.

Today, the lives of those of us who witnessed the horror have become relatively normal again, perhaps even mundane. We’re tired and just wanting to return to a quieter time. We have new lives in a world that is still choking on HIV, but fortunately we are no longer powerless to counter this pandemic. We’ve adapted, survived and prepared to meet the next 25 years.

But there was a time... when we were heroes.