Joe's POZ Blog

They started a new HIV prevention campaign in Los Angeles that included posters that said “HIV is a gay disease”. While I understand the need to reawaken the Gay community about HIV, I believe this type of campaign just fosters outdated beliefs about HIV and the connection to the Gay community. And because of this connection I maintain that many programs and even governments are under-serving their HIV populations often using the gay angle as a way to justify their actions.

We need to change the focus of HIV prevention and treatment to address the realities of HIV because if we do not start acting soon, I fear the overwhelming number of HIV infections will all but preclude any serious efforts at stemming infections, let alone reducing the infection rate. Some countries face the real possibility of imploding due to their HIV populations and inability to provide for their needs.

I believe that one of the main reasons why HIV prevention and treatment is under-funded is because of the link between HIV and being gay. For 25 years we have endured the supposed truth that HIV was a gay disease and that link is having devastating impacts on how HIV is perceived in many areas of the world. Too many countries use that connection to undermine their support of the HIV community.

There are still about 12 countries in the world, where being gay is seen as punishable by imprisonment or even death. Surely that must create a real schism between what the state may want to do, as opposed to the real needs of society. Far too many countries do not even provide medical access to much of their HIV population, so how can they ever hope to effectively address their needs? In many cultures being gay is seen as a very bad thing, even evil, but rather than argue about that viewpoint, we need to concentrate on separating the disease from the Gay community.

Even in America I find it hard to believe that the gay connection does not influence the level of funding for HIV prevention and treatment. Prejudice dies hard and we all know how much easier it is to ignore a segment of society when we can somehow “demonize” their actions. It is time for us to separate the reality of HIV from the perceptions that far too many people share.

It is time for us to stop linking HIV with any community or societal segment and redefine it for what it is: a disease of the immune system. We must reformulate how we deal with the challenges of HIV and stop segmenting its effects. We all know the truth about HIV: It is an equal-opportunity infection. It has no conscience, makes no judgments and if infected it will try to kill you. After 25 years of this madness, why would we want to link HIV with anything other than the disease it represents?

There are governments that deny equal rights for gays, let alone tolerance and far too often those perceptions affect the quality or even existence of HIV prevention or treatment services. I believe that in too many cultures, the intolerance of gays, when coupled with the seemingly endless stigma of HIV being viewed as a gay disease, makes it far too easy for governments to promote intolerance against both segments of society.

I don’t care what most of them say, I hear the words, so carefully chosen but I do not just listen to the words, I listen for intent. Few world leaders speak from their heart rather they promote “sound bites” or toe the government line on policy. If the local culture is encouraged by its leaders to view pos folks as some kind of vermin or worse, morally bankrupt, well you know how it goes: once you begin to demonize a segment of society, the easier it becomes to repress that segment.

We have leaders in Africa actually saying that HIV does not cause AIDS and that HIV can be treated through local remedies. Now, place yourself in a country where what you see and hear is filtered and after a while, just about anything will sound reasonable. If they convince their citizens that HIV is just not that important, why does it surprise anyone when those same governments then ignore their positive citizens? Add to the propaganda religious dogma and that gay disease thing and it becomes even easier to ignore an “inconvenient population”.

There are still countries in this world, which will murder their own citizens for the “crime” of being gay. Imagine what they might do, if the world was not looking and for far too long it has not bothered to look. I suspect the true numbers of deaths from HIV are probably understated by tens of millions, easy. It runs so rampant in some parts of the world that nobody could possibly keep count of all the deaths, nor do many people seem to care.

We need to start addressing the true impact of HIV and it has nothing to do with any particular community. HIV represents a plague that could dwarf the combined death tolls of plagues from our past. This year alone somewhere between 40 to 45 million people will die from HIV infection and the number of deaths has been pretty steady for far too many years. At that rate, we have long surpassed the 100 million who died from influenza in the early 1900s. At this rate it will not be too long before we pass the ONE-BILLIONTH death due to HIV mark.

1,000,000,000 (one billion) deaths to a preventable disease should not be an option to the world. Unfortunately it will surely be our legacy unless more is done to acknowledge the true costs of HIV and the world gets serious about prevention and treatment. HIV is a disease and we need to start treating and responding to that fact, unless we wish to face a very ugly world in the next decade.

One billion deaths from HIV: if that does not scare us into making some radical changes, I do not know what will.

The year is 1985, the city is Detroit and I am about to start my “rounds.” I enter the hospital and proceed to the floor that is often referred to as “the morgue”. The walls are a putrid green (think baby food strained peas) with orange doors as the structure is decades old and it reminds you more of a prison than a hospital ward. There is little joy here, few people smile and you hear no laughter. You expect to see Nurse Ratchet round the corner at any moment.

A smell permeates the floor, very complex in composition, however essentially unidentifiable, as individual smells. There is one smell though, that cannot be denied and it is the first smell that hits you every time you enter this floor. The smell is of death because this is the AIDS floor, where most of the patients have come to hopefully find some comfort as they proceed to their demise. For too many people they have nowhere else to go except here.

It is the place where HIV positive people, now ravaged by AIDS come to die.

As I walk the floor the signs of disease and death are virtually everywhere. Because of over-crowding most rooms have two patients, or more and it is rare to see visitors. Every door contains warning signs that range from fluid precautions, food restrictions to medicine interactions or oxygen in use. Perhaps the coldest sign is the one requiring that anyone wishing to enter must wear a gown, shoe covers, cap, mask and gloves.

As if these poor souls did not have enough to deal with they had to endure being treated like lepers. It is almost impossible to console someone when you are unable to touch him or her physically. Fear permeates the floor and one cannot help to notice the dearth of nurses or hospital workers, nor the silence that attends so much hurt and misery.

The fear is reflected by the food trays stacked in front of each door and sometimes even a cup or two of medications. These are the early days of AIDS and we really did not understand this illness that was dropping our friends and family in droves. For some of those friends/family, when they became too ill, they often came here to die. That death was often inevitable and many died in such agony that I no longer could bear to remember.

Death surrounds you and even amongst the great suffering, you can understand the fears of the attending staff. It is very normal to fear what we do not understand, especially when it is an actual illness, which at the time would certainly kill you. You can sympathize with self-preservation on their part, because in the end it came down to their risking their lives for a stranger.

That fear is what drove many of us to come and attend to our fallen comrades. For most of them their family and friends had long deserted them and so many of us from that time, felt a moral duty to try and let no one die alone. It was the time of AIDS buddies, food boxes, clothes closets, meals on wheels, support groups, group dinners and anything else that we could think of to support each other and to ease the doomed ones with their passing. It was a time when possibly the most depraved humor reigned, epitomized in the T-Cell Naming Parties.

Faithfully I would pause in front of each door and don the required garb. How sad to enter a room and see the patients in their horrific state and in need of simple compassion. Upon seeing some of them you could understand why the food remained outside. Many had such severe OIs, that swallowing was all but impossible or they had a raging fever or slowly drowning in fluid that had built up in their lungs due to PCP. Almost all of them had some type of IV, shunt, pick-line, ventilator, catheter or whatever else that may ease their suffering, as prolonging such a life was never really an option.

I would move from room to room and do whatever the patient may want, which often involved just touching them (no gloves) and listening. They were the forgotten souls, cast aside by society and sent here to die. Surely they deserved better than this, but this was often all that we could provide. These were the days before the ASOs existed, when society turned its back on the HIV community. Churches would forbid our having memorial services while funeral homes refused to either embalm pos people or even allow for closed casket viewings.

It was a time that birthed the AIDS Vigil as a way for us to honor the multiple deaths when we found a church that would permit our services. Many times these services were held wherever we could find a space, because all that really mattered was that we honored our dead and just maybe it could provide an opportunity for us to find some type of closure. Believe me when I tell you how hard it is to find closure for hundreds of your friends’ deaths.

For those living with HIV, the prospects were rather dim as the only support systems that existed were essentially volunteer groups with very limited resources. There were no medications to treat HIV disease. There was little government money for HIV services and what little existed, was quickly consumed by the core services that most poz people needed at that time.

Those churches that refused to accept dead poz people were certainly not going to help living ones. So for us, our resources were our members and for those of us who were surviving, we accepted the horrible truth that if we did not watch over each other, there would be no one else to do it for us.

So I would move from room to room, feed some patients, help them with personal hygiene, maybe help them take a walk, fluff a pillow or whatever, just to stay busy. Too many times I remember entering a room and upon seeing the patient, especially when they were sleeping, I would sit and silently cry. Not only did I cry for what I was witnessing, I cried as I faced a reality that could very well become mine someday. I cried because I felt helpless in the onslaught.

I would cry for those who could not or because of a hardened heart, would not. I cried knowing that my actions were no more than the proverbial finger in the dike, as all I could do was try to ease the suffering and watch them fade away, one at a time. It was a time that we must always remember with honor and respect, for those who have gone before us, as they instilled a sense of real honor and support into legions of poz people.

It was a very difficult time to be alive and on some days even harder because I was not dying, at least not literally. I was perplexed on how I survived yet somehow I found the strength to persevere and in doing so I have thousands of wonderful memories of friends who showed real valor up to the bitter end. So many of them had nurtured and supported the early AIDS movement and we all did what we had to do. At that time it would be unthinkable to do any less that you could, so we volunteered for everything from AIDS Buddies and rounds to clinical trials.

To some of you this may all seem to be surreal, nevertheless these were some of the early days of HIV. It was a time when we each found our calling and if your health allowed it, you just had to give back to your friends and community. It was a time of immeasurable horror punctuated by remarkable hope.

A time that removed almost an entire generation of gay men, who would have served as true role models for both the Gay and HIV communities and as friends, family and lovers. Thousands upon thousands of souls taken from us, leaving immense voids and we had no idea of what we had done to invite such a plague. I do not imagine we will ever understand.

A time that challenged so many of us, a time when rounds were really just a part of a day in the life of far too many people who sought to do anything rather than dwell on the death and dying that surrounded us. A time that remains forever seared into the conscience of anyone who lived through it. A time that I still hold dear, because even through the pain, it involved the people that I loved the most and these memories are all that I have left. Sometimes even painful memories are better than none.

I share this so that both readers and forum posters can begin to understand why some of us seniors insist on sharing this history, because we have witnessed where many of you may be going. Over the last few decades we have continued to bury people who were compliant with EVERY FACET of their HIV management, except they died anyway. We have seen people who stop all treatment and somehow dodge the Grim Reaper for years. We have watched as people who seemed perfectly healthy, would experience rapidly declining health and die unexpectedly. We have supported friends, who have decided to stop all meds to attain a reasonable quality of life, even when they knew that such a decision would result in their death.

We have allowed, supported and celebrated the passing of scores to HIV. It never becomes any easier as the hundredth death hurts just as badly as the first one. It is impossible to have witnessed so much of the horrors of HIV and not have been moved to do all that is within your power to help those who came after you.

So when I share something or give some advice, my only goal is to somehow ease the suffering of others. I was informed of my HIV infection by a nurse with the Red Cross who then handed me a card for the infectious disease clinic at a local hospital and that is what constituted HIV test counseling at the time. The Internet and sites like this have changed all of this, mostly for the good, except there remains a true lack of historical perspective concerning HIV and our present reality.

Without history as a guide, people think that the current public HIV programs will always be there. I would not count on it. We fought long and hard for everything that we have concerning HIV services however it can all be removed by a simple vote of Congress. When I complain about administrative and political situations it is because I know what our government and many of our citizens are capable of allowing, as I have witnessed it. It took Ronald Reagan almost eight years into his presidency before he even uttered the word “AIDS” and his lack of concern has been devastating to the HIV community ever since. Try and imagine where we might be today, if we had the seven years of true research that was lost by an uncaring president and disinterested public.

It is short-sighted to assume anything and like it or not, we pozzies are a different breed and 25 years has confirmed that if we do not take care of our own, few others will care. Our ASOs have been horribly compromised, either through corruption or being forced to chase federal dollars, which often skew services to what DC expects you to provide, rather than the real need of your particular area. It is like whoring yourself just to remain fed and there was a local ASO that simply closed the doors, dumping 3,000 pozzies onto the streets to fend for them selves.

I could go on, but you surely get my drift. I am involved with AIDSMEDS and POZ because I believe in their mission and I know how important it is, for the newly infected, to meet seniors like me. How different might many of our lives have been, if we had some seniors of our own back in the 80s? If we had someone who could have warned so many of us about the dangerous drugs or whatever, however those people do exist today.

Please realize that when I share my experience, health and even when I might be slappin’ you upside the head, it comes from my heart. If I come across as a little brusque at times, remember that the written word does not contain all the nuances of speech. I respond to you because I think I can help and I gain immense pleasure from this site.

I share my history because it does repeat concerning HIV; we still have the same arguments even though our understanding and treatment options have exploded. Sadly some things never change and there are times when I will react as my history indicates I should; or even lash out in defense of the forums, yet none of it comes with any malice. If I can share something that helps another that to me is reward in itself, even if you do not like the way I say it.

It reminds me of classic scene in M.A.S.H. when Hawkeye caught an underage soldier (Ron Howard) and sent him home for being too young. Upon shipping out, the soldier kept telling Hawkeye how much he hated him, to which Hawkeye replied, “Let’s hope it is a long and healthy hate.” I do not need for you to like me so much as I hope you value my contributions. After all what matters more, the message or the delivery?

I truly believe in all of us sharing what we remember, because we do not want the pozzies of today to ignore the lessons from our history. You are not the first, nor sadly the last, to become HIV positive, try a new drug, have no side effects, or horribly failed by your meds as it has been happening for decades. History is important because knowledge is power and advocating for oneself is the pinnacle of the HIV community.

I will never try to tell you how to live I simply wish to share my history, as do many other seniors because for some of us, we contain an awful amount of history.

As to rounds, I would do them again in a heartbeat.

As HIV infection rates continue to rise in many countries and we search for ways to reduce that rate, I am amazed that nobody is pressing harder for changes, but not changes in prevention messages, but real change on a societal scale. HIV infection rates have the potential to seriously damage many countries with a high number of cases and the only way to effectively address these issues is to provide support for the most important ingredients for HIV prevention.

For 25 years we have debated on what prevention messages to send, the treatments and services to provide and the creation of needle-exchange programs and numerous other ideas to try and stem the increasing HIV infection rates. Yet through this all, far too many seem to miss the most obvious area and the potential for changing the discussion on HIV prevention and infections. It is an area that encompasses one half of our society and for far too many it condemns them to lives of untold horrors.

If you want to get serious about true HIV prevention, you need to support women’s rights, because until all women have the right of true self-protection, all the talking and programs will not change reality for hundreds of millions of women. The women to which I refer are those who live in predominately third world countries, where many women are treated not much better than the chattel they represent to their male masters. Places where women are bought sold or traded with their having little or no recourse to such atrocities.

Far too many countries limit the lives of their women and use this to label them as being incapable of running their own lives and therefore relegate them to subservient status. In these countries women are unable to actually “just say no” to sex, regardless of the promiscuity of their mates. Men are free to rut as they please and their women are expected to almost “service” them upon demand, without any ability to insist on protection from infection for either party.

So many governments and societies actively promote violence against their women and restrict their access to education that could help them make a real life for themselves and access to truth-based STD prevention information is all but nonexistent. Yet even if they had the education, there is little access, if any to the resources needed to protect their lives. Even more disgusting is that women with an education and access to prevention methods have no right to insist that their partners use such protection or insist on providing protection for the women.

It seems that many parts of the world place little value on the lives of their women, which is reflected in absence of laws protecting women, or where they might exist, they are rarely enforced or the requirement of their enforcement all but precludes any women from taking protection under the law. Of what value are laws against rape, when the victim must produce at least four male witnesses to such a brutal act? Since most, if not all men are complicit in this subrogation of their females, very few would be willing to bear witness against each other. If that were not dehumanizing enough, there are many cultures when once a women is “stained” by intercourse, forced or not, she becomes nothing more than an embarrassment to her family and friends.

There are other cultures that support the mutilation of women’s genitals and even a few societies that will actually kill their own women, based solely on the fact that she is now “damaged goods.” Someone please explain to me how such huge portions of society could not only develop but promote such horror? They appear so short sighted that they fail to see how high HIV infection rates amongst their female populations is transmitted to their children and unprotected partners and the resulting orphan rate, from those still dying from HIV is in the tens of millions.

Why bother having laws or programs that seem to exist to protect women, when they are little more than farce or window-dressing for the world? I cannot imagine that many countries do it to curry favor as these atrocities have been occurring for centuries, but now they are extracting a price that is too dear for most to bear.

HIV is cutting a wide path through every segment of society in almost every part of the world, with women and children bearing the brunt of this devastation. Imagine if some type of microbicide were developed that could kill HIV on contact? Imagine if this could be cheaply produced and distributed to the far reaches of the globe? And most promising is to imagine if such a product could be used without the knowledge of the other partner?

The term “women’s rights” encompasses so much more than just their ability to protect themselves from sexual diseases including HIV. But if we do not start providing the basic tools for women to keep themselves safe, the other goals of such rights becomes moot. So much of the world seems ready to help stem the tide of HIV infections yet far too many seem afraid to insist on the societal changes necessary to support such programs.

It always seem to fall back on the idea of equal rights for all citizens, because you can be assured that if it were the men who were experiencing such brutality the laws and administration of such would reach new levels. Except that none of that seems to happen and I am unable to understand how it can be allowed to continue.

I am perplexed at any religion that requires that one sex of its members to be subjected to such brutality by the other sex. I cannot accept that there is any religious truth in exposing unprotected women to certain death through HIV infection. Granted I am no expert in any of these foreign cultures and maybe I am naïve when I assume that basic human dignity should be a right of all of us who occupy this planet.

As with other areas of HIV there is a real need for change and not merely window-dressing. Millions upon millions of women need our help so they may dictate their own futures and protect themselves. They must have equal rights, because without them, what right would they have to any vaccine or prevention methods that might become available? Far too many women remain marginalized because of archaic laws and ideas or at the insistence of religious dogma.

Millions of women worldwide need our help, for they are prevented from displacing centuries of ill-conceived ideas regarding their rights and role in society. Too many are left defenseless to even protect their own lives and the losses that result will have real consequences in the near future. You cannot sustain any society by oppressing half of it, while orphaning an entire generation of children all due to a preventable disease.

Millions of women need our help to keep them safe and the lack of their screams is deafening.