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Leaders? What leaders? Professional conference-goers? Those 'invited' to conversations too heady for the masses? Those who negotiate FOR us and not with us? I'm sorry, but I am sick and tired of the defacto so-called leadership in the PWA movement who have created a professional cohort of PWA's who are somehow more 'ligitimate' with policy makers and those who fancy themselves as important decision makers for those living with HIV. Blaming US for not getting more involved when the velvet ropes prevent us total and complete access and input is hipocritical.
paul, how can one disagree with what you say. it's like saying ice cream tastes good. i have been saying the exact same things since 1981, so you will forgive me if i find your article a little naive at this late date. who are these leaders? i can never find these leaders. if you know their names, then name them and hold them to the fire! otherwise they can continue their invisible leadership. that's how act up got the drugs. holding the feet of all the ass draggers to the fire. writing goody-goody-feel-good-we-can-do-it-if-we-all-pitch-in-together pieces are worth not much i am afraid. no, i am more than afraid. i know. the travesty that was the opening session of the aids conference was heartbreaking. nothing but lies lies lies. and only laurie garrett has had the guts to say so out loud.
Paul, In Viena you told me that I needed to follow your blog. I agree. I'm still waiting to get the address for your blog, twitter. Found this article, in POZ, but no link to you on Twitter or your blog. Please send me the link. Hugs from Brazil.
Mark Peterson
Here’s what I mean about a real lack of leadership: Where were our ‘leaders’ when “High Impact HIV Prevention” was launched. What were we doing before, LOW impact HIV prevention? No. High Impact meant stealing from one state and giving it to another state or city, effectively robbing Peter to pay Paul, with many states losing 1/3 to ½ or more of their HIV prevention services. High Impact meant no NEW domestic HIV funding. What did our leaders say about that fiasco? If they fought against it, how effective were they? How about the fact that still, to this day, the BEST and most effective way of reducing HIV transmission among those who share syringes is providing access to syringe exchange programs? Remember the few days when that was actually allowable with federal funds? How’d our leaders do with that one? We may get increases in PEPFAR, but what about domestic HIV funding? How effective have our leaders been on that? How about the years we were slaves to the DEBI trade? We HAD to use the programs. After all, the CDC funded their best friends in “behavioral” research factories to spit out so many different versions of the same behavior change theories and force us all into the cookie cutter prevention-in-a-box replication process. How many locally ‘grown’ and effective interventions designed some place other than UCSF-CAPS, CAIR etc., ever became one of the holy-of-holiest “DEBI” projects. Where were our ‘leaders’ when we kept saying that what works for rich white Gay men in San Francisco, does NOT work for black men who have male sex partners in Detroit? They told us that we were woefully uneducated and uninformed. Or were we—now that DEBI is no more? All I know is that a simple PWA Activist and Advocate with a touch of common sense can see through much of the evaluation materials provided by most of the DEBI’s and see just how weak the foundation of ‘proven effective’ was and is. What have our ‘leaders said about this? Now we still have to watch a HUGE portion of our federal HIV funds go to CIBAs to show us poor uneducated masses how to provide programing to the same populations we come from and serve. Where would we be without those who get funded to read the curriculum a few times, come out and tell us what it says in the book? How could we possibly understand the complexities of HIV prevention without these learned masters of all HIV prevention programing? I once remember a time when those who CREATED the programs trained others on how to replicate it. But it seems that we need to spend like sailors on leave for CIBAs (who never created a program—who never ran the programs they’re training on) to provide us with their unlimited expertise. What do our leaders say about this? Oh wait, a lot of our ‘leaders’ work for CIBAs! Don’t believe me—check out the new flavor-of-the-month, ARTAS. With a bunch of money, staff and set up time, you too could get newly diagnosed HIV positive people into infectious disease appointments in only 3 months to 6 months! SERIOUSLY-- 3-6 months for an ENHANCED and EXPEDITED program for EARLY entry into infectious disease care? Now that is surely worth the research funding, training development funding, CIBA funding etc. to make sure this SUPER-EFFECTIVE joke is mandated to get support. Hey, how about those of us doing HIV testing just help the person who just tested positive go directly to infectious disease care for follow up? Do not pass go. Do not spend 3-6 months in case management. But wait—that would take common sense integration of prevention and care services—we can’t have that happening just willy-nilly, can we? What have our leaders said about this? What I’ve come to believe is that we HAVE lost a bit of advocacy. I also think we should lose some more. Let’s lose the advocacy that runs from conference to conference telling us how we should all work together. Let’s lose the advocacy that can’t stand up loudly and strongly for syringe exchange; housing; anti-homophobia; anti-stigma; anti-racism. Let’s lose the advocacy by those who are funded to be CIBAs and begin again the hard work of rebuilding our advocacy IN and FROM the communities most impacted. Our best advocates for public health services are those living with HIV who have to rely on Medicaid and Ryan White as their ONLY source of HIV care. Let’s lose the professional PWA advocacy and build capacity among clients of case management services and Ryan White clinics. So with all the funding, all the slick magazines, all the conferences, all the public appearances, all the sponsored junkets, all the invitation-only meetings inside the beltway—where have our “leaders” gotten us? Right HERE. Well, “right here” sucks if you ask me. It is still too far from assured access to effective treatment for all. It is too far from comprehensive and effective HIV prevention for all regardless of their possible mode of transmission. It is too far from allowing us to speak for us. It is too far from a cure. Good thing is…our advocacy is based on cult-of-personality and name recognition. I’m nobody, so please feel free to discount everything I said. I mean—it’s not like it came from a REAL activist.
August 29, 2012