Joe's POZ Blog

There are few things so powerful in life, as when someone is able to conceive of a story, that they word smith into a book worthy of publishing. I cannot imagine the drive and determination required, as well as the developing and refining of so many skills that you never realized you possessed. As I enjoy writing, I find the whole adventure of a book as something that I will probably never attempt, because I just do not have any story in me (I do not count my own) that I wish to develop into an actual book.

So I remain in awe of anyone who can accomplish such a feat and I have been privileged to witness my “Mother-in-Law”, Dahris Clair, develop what originally started as a short story, and she took that idea and through her ambition, skill and determination, she has published her first book: “The House on Slocum Road.” Granted I witnessed the process from the outside, but Dahris and I are very alike in some ways, so I understand how proud she is that she finished her book and published it. While what I do is nowhere on the same scale, I understand the pride from sharing your views in a way that becomes worthy of other people reading it, because it elicits a reaction in them. To be able to take your readers by the hand and lead them through “your story” is very powerful indeed.

There is little that compares to the rush that comes when you share parts of your life, with others, through your own words. Dahris developed her book over the past seven years or so and a couple of forum members even have copies. I am biased, so I will not tell you how great of a book that it is and you can read about it all at Amazom.com (how cool is that for your first book???). Yet as great as this feat has been, I want Dahris to know that her book, to me, is just another step in an incredible life, because sometimes our dreams can obscure the reality that surrounds us daily and sometimes we need to see ourselves through the eyes of another.

Dahris has a very tender heart; some might even call her a “doormat” as she seems unable to utter the word “no” and gives far more than her share of help. But I understand her, because I am a “care-giver” just like she is and I know how difficult it can be at times to act in our own best interest. Dahris evolved from the “Greatest Generation” that formed much of the woman she remains today. If I had to reduce her to words it would be something like she exudes refined elegance, very genteel and proper, but also very worldly, open-minded and incredibly curious. She has so many interests and commitments and she is by far the most headstrong woman that I have ever encountered and sometimes she simply cares too much for her own good.

We can learn much from Dahris, because like us, she lives with very real challenges in her life, yet she has never let her health deter from attaining her dreams. Her life is a testament to the power we each possess to face our own challenges and still be able to dictate how we generally live our lives. I also believe that she serves as a valuable reminder, to all generations, that you are never too old to follow your dreams, as dreams are what propel our future.

She is presently considering writing her autobiography and with that comes introspection and knowing you Dahris, I am sure that you are once again measuring your life, against the same impossibly attainable goals that all parents use. To that end, allow me to leave you with some food for thought.

Dahris, you never need question the legacy of your life, because you have already left your mark upon my life, one for which I will always be grateful, by giving me Stephen. Whatever doubts you hold about your life, never loose sight of the fact that you were instrumental in giving me Stephen: a love beyond measure. You were the foundation that anchored your family together and it was your influence that helped to make Stephen the exceptional man that he is today. You instilled in him a true sense of curiosity, commitment and respect and demanded from him, a very high caliber of character. Feats much easier described than attained by most.

I have spoken before on how I believe that each of our lives represents a tapestry, with different threads that carry our traits and weave the life that we live. Each person in our life weaves their own thread through our living tapestry and in doing so they form additional bonds, some briefly, others forever. Dahris, you are the thread that weaves through our “family”, intersecting, influencing and continually weaving your “thread”, through the tapestry that we have become.

Publishing your book is certainly a milestone and it represents another great accomplishment for you, one of many more to follow I suspect. Even so, as you ponder your life’s history, never forget that it is you, Dahris, who will always be the thread anchoring our family, and as such, you will always remain the thread that binds. I can think of no greater legacy.

All my love… your “other” son.

As a Long-Term Survivor living with HIV, I often get asked what the secret is to living with HIV. Of course there is no one answer, but there are options and which ones you use, can have a marked effect on how you live with HIV. No matter how we look at HIV there is no denying the catastrophic upheaval that becoming infected entails. Let us just accept that as a given and as long as you realize that it is not a race through HIV, the sooner you can slow down and target the areas that have the most potential for affecting positive change in your life.

For me, one of those areas involves deciding on just how much you are willing to give to your HIV infection, because until you really take a hard look, you will not know just how much you are already sacrificing. Once you slow down, you will be amazed at how much energy you expend in dealing with day-to-day living, add to that dealing with your infection and you can be on verge of mental meltdown. If you think you can ignore major issues and not pay a price for that, you are sadly mistaken. Stress can and does kill and its effect on pozzies health is well known.

Same thing with physical ailments or mental health issues, as you cannot ignore major issues, without paying a price and often that price is much too dear. Life with HIV is not for the timid and the sooner you accept that, the more you can affect change. I encourage you to look at the little stuff first and find ways to just lower that stress level.

If your numbers are good and you feel fine, then accept that as your reality and stop worrying about the sky falling on you. Worrying about your labs will do nothing, except for lowing your next set, because of your stress level. Thinking that every ache or pain is the precursor to your demise will just drive you insane, even though I see so many people doing just that, daily. Not every thought that goes through your brain reflects reality, so become adept at evaluating what you think and feel and above all, pay attention.

To put this all into some perspective, let me share a brief history of my health, I was infected in 85 and lasted about 10 years until I bottomed out with 4 CD4s (yes I named them) and a Viral Load off the charts in 95. I realized that if I wanted to survive, then I had to change how I was dealing with both my health and dealing with my HIV infection. Acceptance played a very big part in my changing my perspective and that change has left me healthier now than at any other time in my life. At 23 years poz, I am undetectable, 725 CD4s with a 28% ratio.

My hope in sharing this is very simple because I don’t want you to wait for ten years to change your life for the better, nor can you afford to wait. At some point you will become angry enough at how much you have paid for your HIV infection and at that point, you are ready for dramatic change. Slow down, take it slow and pay attention. You know yourself best, so become your own best friend.

Forgive yourself for whatever role you played in becoming poz and accept that HIV infection, with all the implications, will always be a part of you life. Accept that you have limits and expend your energy doing things that will help you or others. Believe that you can and will regain your “old” life because you remain the same person; you contracted a virus, not a split personality.

I often wonder why these adjustments are so difficult for many people, but all I need do is to remember our diversity. We must be here for each other, as we remain a minority that it is still OK to discriminate against and often each other are all that we really have. My simple desire is that by sharing my experiences, even if it helps only one person, is time very well spent.

All you need to do is look at the facts. This is your life and barring great adversity, you are not going to die from HIV anytime soon, so drop the memorial and come back to the land of the living. What works for me is to ask myself two basic questions about my thoughts and feelings, which forces me to slow down and really “think” about what I am feeling.

The first is: “Is it true?” If you slow down and really examine many of your thoughts, you will discover that they are not true. If you work at this, you can become very perceptive and you will notice patterns in how you think about certain issues. The second question is: “What is the worst that can happen?” Generally the answer is anything but catastrophic and there is something very cathartic about dispelling unfounded fears by replacing the unknown with reality.

I told you there were many ways to approach dealing with HIV and my suggestions are here for you to do with, as you will. In the end, no matter what anyone tells you, only you can determine your own fate and only you can decide on just how much you are willing to pay to your HIV infection..

Uncounted deaths from HIV, unknown millions infected, limited global treatment access and no known cure.

I submit that we have already paid a price that is far too dear.

I am unsure of how this entry is going to unfold because I feel that my “Rounds” entry has laid some foundation and so I would like to build upon it. It is my hope that you will start to understand not only why the history of HIV matters, but more importantly, what will happen to HIV services in America, if we do not start repeating some of that history. The history to which I refer involves us once again standing up and demanding what we need to get this pandemic under control, because after 25 years of this plague, our government still flat funds HIV services, even as infection rates climb. But to really understand our future you need some perspective of our past.

From the first discovery of HIV (called GRID) there has been a battle being waged that pits the needs of the HIV community against the forces of a free market. Federal funding for prevention began in 1985 and has continued to evolve into the Ryan White Care Act that today encompasses the majority of money for treatment, housing and services for pozzies in America. Most of the money for HIV research comes through the National Institutes of Health (NIH), which includes the CDC and believe it or not, the lions share of research dollars come from the pharmaceutical companies.

For 25 years the HIV community has been forced to “chase the dollar” if you will and right now we are losing that race. Rather than having federal programs that truly reflect the needs of the local HIV community, we have a patchwork system where Washington guesses at who needs what, where and when. All of these systems have been designed during some very cold presidential terms. Reagan took five years to utter the word “AIDS” while letting us twist in the wind and actually groveling for the miserly federal funds that were available.

George the first was no better with funding levels staying rather stagnant. Things got a little better in the Clinton years, but nothing to even begin to meet the needs of our community. I believe the lack of “unfettered” federal funding is the single most dangerous threat that we still face and I do not have a clue on how to change it. It is a cold hard fact that HIV funding is at the mercy of Congress and Republicans have proven to be very cold masters.

When the first ASOs started we got money from whatever source we could and our clothes closets, food pantries and drug services existed on the donations of those who had passed on. What little we had we funneled into the areas or neighborhoods where we felt they would do the most good. Information sharing was started by organizations like Positively Aware, GMHC and even our own POZ magazine and their monthly missives were devoured and disseminated throughout the community, because we were so hunger for information. Remember, there was no Internet back in the early days.

ASOs expanded as more money became available and by the early 90s there was major money to be made in treating the HIV community, whether through services, treatment and of course, drugs. Government funding would continue to increase, but was outstripped by both our existing needs and the skyrocketing infection rates. By the mid-90s, or the era of the Protease Inhibitors, it appeared that salvation was at hand (or at least a reprieve) but that salvation came with a horrible cost. The advent of PIs would save the lives of countless pozzies and in doing so, we almost broke the bank because the cost to develop those drugs included the cost of developing those that did not succeed and at some point, we needed to start paying our tab.

So more money was added to pay for anti-HIV drugs, but more of those funds were being used to purchase drugs as drug prices were increasing in double-digit percentages. Unfortunately it seems that our free market system creates a paradox in regards to our drug industry. The cost of drug development is mainly borne by the drug industry and the cost of bringing a drug to market can exceed $500 million easy. However, the drugs that reach the market are only part of the equation, because you still have to pay the development costs for the drugs that die in the pipeline.

Let us assume a company funds 10 new drugs over three years at a combined cost of $5 billion but only 3 of them come to market. Even if those three drugs made, say $750 million each over three years that is only $2.25 billion, so where do you think the other $2.75 billion will come from? We cannot deny the companies their development costs, because without them there would be no new drugs in the pipeline. All of this becomes even more skewed when you factor in the role that drug companies have played over the years.

It is a fact that most drug manufacturers spend more on MARKETING AND ADVERTISING THAN DRUG RESEARCH. Yes you read that right, they spend billions each year plying doctors to prescribe their drugs and deluging the public with advertising that does nothing to promote responsible use of the medical system. Somehow we need to take the profit out of drug development, so that all the billions wasted on marketing and advertising can be used instead to lower the price of drugs. The drug industry maintains a monopoly on pharmaceuticals and the horror of that power was unleashed a few years ago when the price of Norvir was increased by 400%. The increase in that one drug alone caused serious complications in ADAPs across the nation, as Norvir is very popular (as a drug booster) and since so many people on ADAP us the drug, the ADAPs costs skyrocketed. The system is broken and we need to work at fixing it.

As the scramble for HIV dollars increases, drug manufacturers are falling all over themselves bringing new classes and drugs to market, and who can blame them when the federal government and private insurance pay the lions share of drug costs. We still need to step back and ask again: At what cost? Sure we need options and I am not suggesting that new drugs are bad, my fear is on how we cover the cost. New drugs will force ADAPs to expand formularies that are already beyond the breaking point, because the funding for the ADAP program has actually decreased in the past six years.

Still, the money must come from somewhere and so it does; it is shifted from other HIV treatments and services. Our ASOs have to decide on whether to medicate someone, assuming they can assure them transportation to manage their health. But we just cut the services portion of our Ryan White so while we can get you the medical and drug coverage you might need, you are on your own in obtaining the actual services. What do you propose that we tell those who need these services? Sorry, your life just costs too much, now be a good fellow and crawl off to die??? Well that is exactly what we are doing when we can only address a portion of the needs of our clients. You cannot stay alive with partial medical, physical and emotional care. Society’s indifference sends a very powerful message to many pozzies and the message is clear: we do not value you enough as human beings to insure you receive the basic services that you need to survive.

I believe that to some extent, the HIV Community is responsible for the situation that we find ourselves in, because far too many poz people just do not care about the HIV Community. I read the comments in the press, on the forums and even hear it from other pozzies who have no desire to ensure that we keep these programs and services that we fought so hard to obtain. I cannot emphasis enough that a hard reality about government entitlement programs is that ONCE YOU LOOSE THEM IT IS ALMOST IMPOSSIBLE TO GET THEM BACK. You may have health insurance today, but what about next year or ten years from now? Be careful or your indifference could come back to haunt you. The agency or program that you do not care about today, may well be the one thing you need in the future and what will you do if it no longer exists?

Level government funding of HIV services over the past six years, has remained flat and when compared with the increase in infection rates, we actually have less money to treat more people. We cannot continue and how many more deaths must we tolerate as people die from HIV infection because the money to treat them, is just not there.

This is where all of you come in and I urge you to get involved in your local areas, because HIV treatment should be determined locally, but they will not know what we want and need if we do not tell them. HIV Planning Councils are begging for poz representatives as most of us long-termers are aging and we took our turn and now it is time for someone else to take theirs. You cannot fault a system for failing to serve its clients, if those clients will not provide input on their own needs. Planning Councils are there to solicit ideas from the HIV community and then tailor their services, where possible, to provide those treatments or services.

So many of us, myself included, have benefited greatly from the work of the earliest activists, even when they initially achieved very little, because they had defined how to fight the war. They tried and if they failed, they re-evaluated their strategy and would try again realizing that only the HIV community could fight to ensure our access to the resources of the government. You would think that things have changed, but they have not.

The new Medicare Part D (prescription drugs) was implemented with little regard for those with catastrophic drug costs and Stephens’ drug co-pays (with government insurance no less) went from $1,200 in 2005 to $5,500 in 2006. Based on his income, just his drug co-pays consumed 18% of his income last year and for people on a fixed income these co-pays are killing them. And unless you are in the AIDS Insurance Continuation Program (AICP) you are on your own covering your co-pays, because Ryan White has no money to pay them and federal law prohibits the ADAP program from paying any drug co-pays.

For many of the newly infected, these issues seem unimportant when given the impact of just dealing with your HIV infection. Many of you are healthy and have private health insurance, unfortunately you cannot take any of that for granted and you need look no further than the forums to see dozens of people that have been both physically and financially devastated by their HIV infection. So many of these people live at the whim of government programs and when the money runs out… treatment stops… and people die.

We are entering a new age of HIV in terms of what we know and how we treat the illness, all of which costs billions of dollars each year. As we advance, our costs are exploding and the time to plan for paying for that is now, not after some programs have been allowed to expire, because nobody spoke up in support of those programs. Whether you like it or not you are part of a community that has been forced to claw and scrape our way for every dollar we get and the sooner that you accept that fact, the sooner you can get up and do something about it.

I am not asking you to do this for me, because I can take care of myself, but many of our community cannot and therefore we have a duty to advocate on their behalf. As we enter the 21st Century, we need to rethink HIV treatment and services before the beast decimates the world economy. There are tens of millions of people with HIV and that is not going to change for a very long time, so you have a choice to make.

Do you want to be part of the problem or part of the solution? I can tell you why I do it, but what matters is finding that fire in yourself and believe me when I tell you that if you choose to get involved, you will never regret it. To me there is nothing sadder than just not caring about our community, as we occupy a very different niche with our HIV. Knowledge is power and unless the new AIDS Advocates step forward to resume the march, at some point our forward momentum will be lost.

So please, AIDS Advocates: Come out, come out, wherever you are and join our ranks. Find a passion and pour yourself into it. None of us can do this alone and for millions, they need someone to advocate on their behalf, because if we do not do this for our own, then who will?

One dear cost of indifference: is that too many people stood by as crack devastated parts of the black community and again we simply look askance at the devastation of Tina on the middle-class gay community. While it is ultimately your sole right to self-destruct, when you insist on taking others with you, is that not that the time for the rest of us to act? How fine is the line between enabling and condemning? How many more must we lose, before we ever learn?

One absolute about HIV prevention, is that it will never work until people care enough about their own health to protect themselves. We will never be able to scare or shame you enough, not by criminalizing or even plain logic to get you to protect your health, if you do not think you are worth protecting. The sooner we address this issue and help to change how people view themselves, the sooner we will begin to see an impact on the HIV infection rates.

One of the reasons that there are not enough positive gay role models is that so many of them died of AIDS. Thousands upon thousands of men, from every walk of life, who would now be reaching from there 50s to the 80s, are simply gone. Many have been gone for decades and the void they left will continue to be felt for a few decades more. How different might the gay community and even society as a whole be, if not for their loss? How many contributions would they have made as family, friends, lovers, artists, professionals, and mentors and as role models? We will never truly understand the magnitude of loss because of HIV.

One of the real conundrums about gift-givers and bug-seekers is how do you get the seekers to feel welcome in some community other than the HIV community? Too many gay men have no sense of a community, gay or otherwise and then see the cohesive nature of the HIV community. Where I live, if you want a good active social life, you are much better off going with the positive crowd. Same with having a sense of community because if there is anything that positive people excel at, it is providing support. So how can we be surprised at some gay men, who are so marginalized by society and even their own family, to seek the one community which not only will welcome them with open arms, but one where they can afford the membership fee.

One of the most frustrating aspects of political correctness is that somehow too many people have been convinced that they have a right to never be offended again. Rather than experiencing the world and choosing their own way, they insist we camouflage all the perceived ugliness in life, behind convoluted words that are really nothing more than semantic gymnastics. Instead of simply speaking and acknowledging our challenges or differences, we must rename the elephant in the room. I am waiting to be reclassified, from disabled, to employment-challenged. Now how exactly does that change my lot in life, or my perception of myself? Not one bit and supposedly I am one of the ones, they are trying to protect. If I do not mind the use of the term disabled, in relation to myself, so why should you? How dare you decide to trample my perceptions, just to make yourself feel better? Maybe if you were not so intolerant, you would find most of the world to be rather enjoyable, along with her citizens. How do you ever see the beauty around you, when you are so busy looking for the ugliness? And who made you the arbitrator of what is acceptable in polite society?

One of my greatest fears is the alarming increase in the use of religion to mask utter intolerance for non-believers. Granted, it is a centuries old problem, but today, when it is connected with being politically correct, we seem to loose the ability to be objective. Many religious leaders are trying to deflect criticism, against their hateful teachings, by claiming intolerance for their beliefs. While I am far from a religious scholar, I have enough basic understanding of many of the major religions, and few hold the tenets that are being espoused by some of the religious leaders of today. There are too many societies that bastardize religious doctrine to teach their citizens, utter intolerance and in some cases, absolute hatred, for others who do no share their beliefs. This trend continues at an alarming rate and is beginning to be felt in many, previously religious-neutral countries. Over the last few years, I have gained a great appreciation for our separation of church and state, regarding our federal government, because religious government rarely includes representative government and most become oppressive governments. I also fear that this separation will continue to diminish, because our current administration thinks their god knows better than any of the others and if you do not agree, then you are lacking in morals; their predetermined morals. That scares me even more than HIV.

Just some food for thought.