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Embracing the Legacy of Collective Activism

Where do I start?  I’m overwhelmed by all that I’ve seen and heard from the attendees at this forum.   I’ll start with the very last session I attended – a viewing of the documentary film entitled “Sex in an Epidemic” by Jean Carlomusto.  “Sex in the Epidemic” was an incredibly moving depiction of the activist history of the HIV/AIDS movement.  As I am typing HIV/AIDS… I am almost compelled to type – AIDS/HIV movement.  “Sex in an Epidemic” captured the pain, confusion frustration, and death that was associated with an illness that today can be “managed” (for lack of a better word) with a pill.  In some cases having HIV provides access to doctors, housing, specialized welfare, free legal services, syringe exchange - just to mention a few.

When this disease surfaced – people with AIDS got nothing.  What people with AIDS have today, the benefits – the care and access – (in some places) are due largely to the many gay white men and their allies that fought for explanations, accountability, and healthcare. Because of what they fought for, many people are able to manage HIV so that it never becomes AIDS, because of what gay white men and their allies demanded, many now have the luxury, if I may be completely honest, of living with HIV and not dying from AIDS.

I would like to acknowledge and pay tribute to gay white men and their allies.  THANK YOU for fighting, demanding, standing up for what was right.  read more »

“Sex in an Epidemic”… was Orgasmic!

The screening of Jean Carlomusto’s “Sex in an Epidemic” documentary evoked an enthralling array of feelings amongst many in the room last night . An emotional roller coaster transversing a course of pain, anguish, delight, gratification, wonder, amazement, respect, reverence, anger and frustration, was unleashed by the chronological truisms in the documentary that highlighted the, panic, fears and challenges surrounding sex in the early days of the AIDS epidemic, specifically faced by Gay Men.  The frequent gasps breaking the dark silence of the room was evidence that Jean had done an excellent job of preserving a portion of history that need never be forgotten.

The film brilliantly marked the period where women activist would fight their way to the front of the AIDS movement staging a giant “No Glove, No Love” banner waving action during the 7th inning stretch at a baseball game at Shea Stadium, demanding honest accurate information about women’s risks for contracting HIV, in an epidemic that had been unsubstantiated to only affect men who slept with other men.

With lovers, partners, family members, friends and spouses dying from lack of health care and a lack of political will to do anything about it Jean offered live footage of ACT–UP, the AIDS Coalition to Unleash Power taking it to the streets to the mantra of “Health Care is a right, Health Care is a right!!”  read more »

Yesterday I learned to speak epidemiology

Well, at least a little.  David Munar from AIDS Foundation of Chicago provided a great introduction to epidemiology - the scientific study of disease distribution and factors that cause disease to spread in communities - in this morning's Prevention Symposium.  David referenced the astounding and deeply disturbing disparities experienced by some populations, especially Black women and Black men who have sex with men.  He reminded us of the importance of real-time data:  while the CDC projected in 2006 an incidence rate (annual number of people infected by HIV) of 56,000; given a constant 5% transmission rate, that number would be closer to 64,000 this year- 2010- and will approach 75,000 by 2015.  And the Act Against AIDS "9 1/2 minutes" campaign (you know, the one that turns HIV-positive people red) is already old news.  In 2010, the epidemic would be more accurately characterized by an "Every 8 minutes" campaign, according to David.  Good thing we're all red, and so easy to find.
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Engaging African Americans in Research

I must say that I was thrilled to take in all of the knowledge about doing clinical trials and studies. What does that mean for me? Well, I need to start trusting the providers of the studies with getting the right information out there to other participants that are scared and afraid of starting a clinical trial. I know that the Tuskegee Study has detrimentally hurt the trusting relationships researchers have with African Americans.

So I must say that sometimes it takes one to know one and that is to say that if I get the opportunity to get into some form of research I will try my best to enroll in the study. Too many lives were lost in the early 80's and 90's to this horrible disease - and I know I need to carry the torch for myself and for my community at large.

I encourage anyone reading this to think about the lives that were lost and the memories that were gained and reflect on that today. Tonight, I saw a very nice and painful documentary on the History of Act-UP!!! (visit the Resources page for more information about the documentaries shown tonight at the Catalyst Forum). My heart goes out to those who gave their time and effort to save me - by advocating for new meds and treatment.  read more »

Forum Day 3: Started Slow And Ended With A Bang

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8 minutes!!!!

Hello Blog land I must say that I was hit hard by a statistic that I found out on Day 2 of the HIV forum was every 8 minutes in America someone is infected with HIV/AIDS!!!!! I need to make a sign in my community and do street walking outreach and let folks know that it may be in the next 8 minutes that you are infected!!!! so take heed to that fact does anyone know this fact????

Open Space Technology As A Tool To Engage People Around The Multiple Social Drivers of HIV Transmission

Today, I had a fantastic time in the session entitled Engaging Prevention Research Advocacy to Address Social Drivers of the Epidemic in the United States. Of course I went to this affinity group because all too often people focus exclusively on behavioral interventions without examining the other issues that fuel the epidemic in this country particularly for communities of color.

My group was introduced to an activity called Open Space Technology. Open Space Technology was fashioned after the exchanges witnessed at African market places. The concept of bartering provides valuable examples of the power that individuals have over seemingly fixed pricing with pricing only being one example. One can also consider the exchanges with patients and health institutions as another example--with the idea behind bartering empowering people to engage with institutions to receive a good based on what they deem appropriate.

Some core principles governing Open Space Technology are:

1. People have power, value, and agency and therefore have the right to set their own agendas, topics, standards, etc.  
2. That people should only stay in a group only as long as they are feeling like they are contributing/gaining knowledge. Once you are done, move on. 
3. It is okay for people not to contribute or be "butterflies" on the wall.

In short, we were polled and asked to think about the various issues that we wanted to talk about related to HIV. We than assembled the topic and once all topics were placed on the board, people had the option to choose which discussion they wanted to participate in. In our case, conversations ranged from talking about oppression at large to more specific issues like advocating for the decriminalization of behaviors of HIV positive persons.  read more »

Interesting town hall....but did it accomplish anything?

Having just left the town hall portion of the day, I was quite moved by many of the stories and experiences people shared.  I would like to say thank you to all that had the courage to stand up and share their stories, thoughts, and concerns.  I am also grateful that we had a panel of individuals from the various agencies willing to share what they could, but I felt as though many of their responses were canned or scripted and not much I could take away and really put to work in my community.  I will say I think the panel handled the overall meeting well, as many that took the microphone were seemingly in attack mode and not really posing questions that would prompt meaningful discussion.  I can certainly understand the passionate and emotional drivers behind the thoughts, but I would like to see more restraint and composure, as I think that it would better facilitate a legitimate dialogue.  Those thoughts aside, I do believe that channeling those emotions and elevated passions can help us all to maintain the momentum when heading back to our local communities as advocates and activists alike.

Great affinity group to start the day!

Day two is going great!  I attended the Save ADAP's affinity group today and feel like I have some actionable items I can take home to work within the community to advocate for continued treatment, particularly for those who can't afford the cost of treatment on their own.  I did find it alarming that there seems to be such huge disparities in services on a state-by-state basis.  I’m not sure how to best support and advocate for those who live in areas not as fortunate, but I plan to do whatever I can to provide support and be a resource for all I can.  I am most excited about the opportunities that will come from being part of a larger network of individuals with a shared goal.  Definitely looking forward to signing up for as many networks as possible Friday before we all head back home.

The irony of the “Happy Meal”: Sex for the woman 60+ and HIV

Women and HIV Prevention Research: Cocktails for Success workshop needed far more time but was excellently facilitated by Hadiyah Charles and Naina Kanna.  The information they delivered opened the dialogue to highlight the apparent research questions that are simply unanswered as it relates to the attention of women’s needs in prevention research in the United States. How can HIV Prevention Research and Treatment make women a priority?  Clearly we need to uncover the many layers of women’s lives in the United States, and how HIV affects women specifically.  The first item in our “Make-Up Kit” in the “Toolkit” of HIV prevention research and treatment… the “Happy Meal”.

A lovely African American woman over the age of 60 shared a story with the group.  It follows, in the senior community the men get their checks at the beginning of the month and the younger woman (25-45) years old come in, provide the men with company and many times sex.  Those younger women, the at-risk, "non-identified risk" woman sees these visits as a means to her survival considering, "single black women have a median wealth of $100 and Hispanic women $120 respectively, while their same-race male conterparts have $7,900 and $9,730.  The median wealth of single white women is $41,500. Source:http://www.insightcced.org/communities/Closing-RWG.html  read more »

Is there a line in the Health Care Reform that promises a cure for AIDS?

“Do not go gentle into that good night,” wrote Dylan Thomas.  That seems to be the prevailing subtext of the 2010 HIV Research Catalyst Forum.  From April 20th until April 23rd,  a large collection of HIV Activists gathered in Baltimore, Maryland at the Renaissance Harborplace Hotel to discuss the latest in treatment issues, new strategies to energize their activist base and bring new individuals into the fold, creative ways to deal with pharmaceutical companies, and discussing exactly how the health care reform will affect people living with HIV/AIDS.

The original fervor of the movement that existed in the 80s when everyone was dying from and not living with AIDS, no longer exists. Even for those in the movement, being able to take a few pills and keep the wolf at bay calms them down as well.  However, do not let that fool you.  The activitists present here are not willing to go anything near gentle into that dark finality of night.  People like Linda Dee and Tracy Swan realize what the future could hold for people living with HIV, and it is not a picture perfect Hollywood ending.  Nelson Vergel, long time survivor and activist knows only all too well what physical costs long term survivors pay with the side effects that wreak havoc on their bodies.  Sure, you are alive, but at what cost?

Matt Sharp remembers a time when doing anything was the norm because there was nothing to be had.  He shared his experiences about a thyroid graft, an attempt at treating him that went unfinished because the drugs started to work their magic.  read more »

Interview with Ann Lefert of NASTAD about the ADAP Crisis

BJ Cavnor Inteviews Ann Lefert of NASTAD.

Day one reflection on the Treatment Symposium....a little delayed

Well, it seems the technical issues are resolved and the blog is able to be accessed again…yay!  I thought for sure it was user error on my part, but thankfully I can say it wasn’t me.  That being said, day one was great.  I felt like there was a lot of information covered in a short amount of time.  We received a lot of the ‘what’ and ‘why’, now I’m looking forward to the ‘how’ today.  It is apparent this could easily be a two week forum with all of the information that is available, but I’m grateful to have the couple of days that we do have.

I’m still processing a lot of the information received yesterday, but I think the standout moment for my personal self was when Nelson Vergel spoke during the first session of the treatment symposium.  Having suffered some of the metabolic issues related to treatment and fully feeling the physcological impacts in my own life, it really hit home.  I hope I get the opportunity to thank Nelson in person while here; the work he has done advocating has directly affected my daily life.  I recently underwent Sculptra treatments and have had an immediate lift to my self esteem and emotional well being.  Without the efforts of Nelson and others like him it’s likely the gap in treatment for such issues would not have been filled.  I look forward to learning more today in hopes that I can work to further fill in the gaps and keep the fight alive to ensure others get the treatments they so rightly deserve.

Moises Agosto - Opening Plenary Speech at the Catalyst

Moises Agosto gives a rousing speech at the opening plenary of the Catalyst Forum - April 20, 2010

Day 2 at the Catalyst Forum!

Here is day two of the HIV Research Catalyst Forum. It was a busy day, but I came out of it with multiple contacts, a lot of information, and some new awesome friends. I hope you all enjoy.

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