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Test Positive Aware Network • Editor's Note
Four Minutes to Save the World

May/June 2008

Jeff BerryWhen is the last time you heard anything about RED, or bought anything RED? Have you ever bought anything RED? Should you buy anything RED?
Recent reports of infection rates among young African American MSM that are spiraling out of control, and increased rates of STIs among young, African American teenage girls, as well as rising HIV infection rates in general, is definitely cause for alarm. It brings into question whether or not we need to rethink and refocus our prevention efforts, as well as the audiences we are targeting.

But where is the sense of urgency? Where are the protests, the call to arms, the sign-ons, and the leadership -- both within the HIV community, and on the local, state, and federal level? Have we saturated the market in HIV? Does anybody out there care? Or are we all just too burnt out to even give a damn?

We have an aging group of advocates who yearn for the days when we had staged sit-ins and "die-ins," who wonder what group of individuals is going to step up to the plate when the time finally comes to pass the torch. But the "activist mentality," which served us all too well in the beginning years of the epidemic, for whatever reason, just doesn't seem to wash with today's youth. They simply cannot relate. It's a segment that they view in a documentary downloaded onto their iPod, or read about in a blog on their laptop, but they can't be bothered, they're too busy changing their MySpace page, or text messaging their vote for the next "American Idol." They don't have time to stage a protest -- at least not the way that we remember it, anyway. Recent online contributions to the political campaign of a certain presidential hopeful, however, as well as the demographics of that group of contributors, give us all reason to hope. We can, and will, come up with new and innovative approaches to end this plague, approaches that will resonate with an entire new generation of advocates -- if we believe we can.

Today's HIV advocacy community is fractured, splintered, and in dire need of some fresh, new blood. There are many big egos at play here, both in the HIV community as well as the scientific establishment. And that's not necessarily a bad thing, considering what's at stake here. We all want someone out there fighting for us, someone who actually stands a chance of winning the fight. It just seems that more and more of us are battling for an ever-shrinking piece of the pie. Most of the advocates and researchers, in fact the vast majority, are truly dedicated to the cause, and are definitely not in it for the fame and fortune (ah, yes, the glamorous life of the HIV advocate, that's a whole other story).
It's a fine line we all walk, those of us in the AIDS "industry" (oh, how I hate that term, but it is an industry, whether we like it or not). Just as in our nation's capitol, in the field of HIV/AIDS there are "special interest group lobbyists" (read: Big Pharma) and their public relations firms who continuously clamor for the attention of HIV advocates, doctors, and researchers. But in all fairness, these "lobbyists" have a job to do, and the companies have a product to sell. They have to turn a profit. And if they weren't in the business they're in, many of us wouldn't be alive today.

And believe it or not, and I will probably be taken to task for this, there are a tremendous number of people who work for the HIV pharmaceutical industry who believe in the same cause, and are in it for many of the same reasons -- because they want to make a real difference in the lives of people living with HIV. But let's face it, we live in a capitalist society, and the way the free market system in this country works, someone ultimately has to answer to the higher-ups, those whose main concern is turning a profit for their shareholders. We are all, indeed, victims of our own success.

Luckily, we have a diverse and multi-talented group of individuals in this country, those who are truly dedicated to the cause of bringing some of the most important issues to the forefront of our collective, national consciousness. These individuals advocate for those who have no voice, and seek to create and deliver effective prevention messages, to educate, to improve access to health care, to effect change and set new public policy, and to give input on the research and development of vaccines, microbicides, and HIV therapies that are less toxic and easier to take.

But where will the next generation of HIV advocates come from? Where is their voice? What will their rallying cry become? What will be their cause? And will we be listening? Are they out there somewhere and we just aren't hearing them, or including them, or inviting them into the process? Are we unwittingly turning them off by our infighting and posturing, our egos? Or are we just not trying hard enough to reach them, looking in the wrong places, or sending the wrong messages? Has HIV become, dare I say it -- passé?

Just like Madonna, we need to reinvent ourselves if we are ever going to win the fight against HIV/AIDS. We need to bring sexy back to AIDS, baby. We have to throw common sense out the window and become the fifty-year old mother of two who wears lacy underwear and rolls around on stage in front of millions, while gesturing provocatively to agile, half-naked dancers young enough to be her own children. We have to be willing to change our tactics as often as she changes her hair color. Willing to do what it takes to get noticed, and not afraid to look foolish. If we don't, what we stand to lose is infinitely more important than any special recognition or individual accomplishments we may achieve along the way. We must learn to adapt, or risk becoming inconsequential and obsolete. And our voice will get lost in the crowd.

Take care of yourself, and each other.

Jeff Berry
Editor
publications@tpan.com


Got a comment on this article? Write to us at publications@tpan.com.


Reader Comments:

Comment by: Sylvia Sat., Jul. 5, 2008 at 1:14 pm EDT
Hooray for your commentary on hitting the nail right on the head. I agree 100% with the complacency of the attitudes of HIV/AIDS. Society still does not want to face the fact that it is a communicable disease that makes all humans a target. Regardless of the messages and the ignorance, our lovely teenage daughters, and sons are become infected daily. One biggest problems we face is that no one wants to talk about HIV/AIDS today, the STIGMA's are still homophobic and IV drug users and those who are becomng infected are your every day sexually active humans, who should be protecting themselves regardless of their sexual preference. Relity TV, whether it be MTV, movies, or otherwise does not send out messages prior to each episode to it's viewers that testing of their participants go through to be involved in such programming. The perception is sending out messages that it is okay to have unprotected sex. Therefore, any prevention messages goes undone as they watch their favorite TV show and people in it walk away STI free. Encourages the idea that HIV/AIDS diagnosis, will never happen to them. We live in an instant society of the idea that anything can be fixed. The idea of taking one or two pills a day is livable. But little do those folks realize that is not the whole picture? Another distraction is taking this whole HIV/AIDS to a global level which needs to be taken care of. I am not demeaning that. But domestically the numbers here are rising. Which means our youth is not taking the HIV seriously. We do need to something different now. What is it? And how do we figure it out? Do more folks need to start dying here again in America before people start to listen? I do know this, when people's lives are at risk because they start to fall through the cracks, because of pride or embarassment, it is then already too late. I have been positive for 10 years. I will continue to work in my community to prevent and fight the spread of HIV/AIDS.

Comment by: ryan halpner Thu., Jul. 3, 2008 at 12:21 pm EDT
Hi Mr. Berry, My name is Ryan Halpner and I am a 32 year old gay man living in NYC. On January 3rd of this year, I tested HIV positive. My whole world changed on that day, and not for the worse. Yes -while learning to understand the complexitiy of this illness and how to treat it and keep my body clean and healthy, I also realized that the STIGMA of HIV still exists -and suprisingly more so among HIV negative MEN -go figure. I read your arctile on the Body.COM and I am here to tell you that if you need some new blood to help change the perception of his illness -I AM HERE FOR YOU!. While I'm still educating myself on what to expect as time goes on...I truly believe that half the problem of living through this -is how others perceive US and that infuriates me! I lost a good friend over my diagnosis. He is a 40 year old GAY -NEGATIVE man living in NYC. I'm not really sure what happened -maybe it was his fear of having someone so close to him get the news -maybe it was his fear of even talking about the disease. I feel that open dialogue about this -among people of all status is important. I have been going to a group HIV support meeting 2 weeks into my diagnosis at the Gay and Lesbian Center here in NYC. What i've learned most about being there and hearing/sharing stories -is that some of the older gentleman in my group who have been living with this for years and years -are STUCK...they are stuck in the perception of themselves and how this disease has changed them, but I am also hearing that they are sick and tired of what others say and feel about it. The fact is -HIV has changed dramatically over the years....it is not the same disease as it was back in the late 80s and 90s It has taken me a while to realize that, but I am confident that the treatment methods that are out there today, can continue our longevity well into our old age -and then some...Don't we all just want to live happy, healthy, and productive lives?? For a lon

Comment by: Benjamin Thu., Jul. 3, 2008 at 12:50 am EDT
Well written. I couldn't agree more. It's time for all of us to join the effort. Thanks.

Comment by: Rey Wed., Jul. 2, 2008 at 11:22 pm EDT
I couldn't agree with Jeff more. It is far too easy now, to take your 'one pill - once a day' and not think too much about how it got into the bottle. The problem is multi-facted. There is a major problem with the generational split amongst activists. I have experienced this first-hand. The 'old-timers' are not the most inclusive group, and with a few exceptions, there is a sense of.."this is our movement and you may watch, but keep any dissenting ideas to yourself". This will doom the movement as it has so many other movements. We need new ideas and fresh perspectives to build on the work that so many have fought and died trying to achieve. Mentoring, educational seminars, policy summits, international mentoring of 'third-world' activists, and some old fashioned 'good manners' would be a great start. The stigma of this disease is still very strong and anyone willing to brave it to become an activist instantly gets my respect. The face of this epidemic is changing quickly and it's not going away any time soon. We need women, African-Americans, latinos, gay men, bisexuals, straight men and everyone else... learning, talking, meeting, and fighting this disease and all it's challenges. Our Gay brothers and sisters use a beautiful rainbow as their symbol. It's time to really reflect what that rainbow means...ALL colors, ALL people included and welcome to walk arm-in-arm with us, part of this fight. Rey A. Candelaria Past President AIDS Treatment Activist Coalition

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This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware.