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What Are HIV Community Members Most Proud Of?

December 4, 2012

What Are HIV Community Members Most Proud Of?

The 30-plus years of the HIV epidemic have been marked by devastating loss; tireless work; infuriating inertia; passionate, challenging collaborations; and radical advances. But in the midst of all this, how often do we pause and reflect on the examples that people living with and working in HIV/AIDS have set for the rest of the world, individually and as a collective? We offered more than a dozen advocates the opportunity to do just that; and we hope you will too, as you read their answers to the question: As a member of the HIV community, what are you most proud of?

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Rusti Miller-Hill

Rusti Miller-Hill

Deputy Director of Prison Programs, Albion Correctional Facility for Women; Diagnosed in 1991

What I am most proud of are the women who are participating in the AIDS Education Program here within these prison walls. The program is the same one in which I was a peer educator over 20 years ago as an inmate myself. It is refreshing to know that these women understand the importance of knowing their status in addition to getting up-to-date information in preparation for their return to the community.

Every week we have the responsibility of introducing the option of knowing your status to new women entering into our facility. For many the opportunity to stop and take care of themselves is a somewhat overwhelming thought, as they were busy living life on their terms while in the world, as they say. While the stigma and discrimination are still alive here, they are running neck-and-neck with tolerance and understanding among both inmates and correction officers.

As we move forward to implement new HIV education programs, I can proudly say that women leaving state correctional facilities like Albion are well educated and interested in knowing their status, in addition to participating in all the available treatment options. I came to impart knowledge and empowerment, and that is what I am doing.

Jose Luis Guzman

Jose Luis Guzman

San Francisco; San Francisco AIDS Foundation

I'm proud that we're still here thirty years later, making changes, advocating for people's rights and fighting for the underdog. And making sure that everyone's voice is heard.

Savannah Hornback

Savannah Hornback

NYSDOH Prevention Planning Group and Community Healthcare Network, New York City

I would say I'm most proud of working collectively with the Department of Health to get a transgender category listed into their surveillance data, so that's probably my proudest moment. And also, just being an individual of trans experience and being at the table, so that our voice is heard. Because I'm not just my voice; I'm the voice of a thousand in the trans community that oftentimes are not at the table.

Michelle Lopez

Michelle Lopez

Brooklyn; Diagnosed in 1991

I am most proud of the progress we have made along the lines of treatment. And the second thing, as the treatments have come along, too, we have developed mechanisms to provide individuals access to care and treatment. I'm most proud of that work; there's a lot more that still needs to be done, but I'm very proud of what has been accomplished thus far.

Jason Panda

Jason Panda

b condoms, New York City

Just being one in the fight with everyone else. The community is so dynamic; you have so many different personalities, so many different types of people, so many different types of regions and different lifestyles that HIV affects. Whether you're poor, you're tall, you're short, you're big, you're small. It affects everybody, and everybody has their own unique experience along with it. And I like the diversity of that. In that, everybody brings their own perspective, and they bring their own experience. And I think it all adds to where we should all be, not only as people within the HIV community, but within a broader public health space, as well.

Ed Perlmutter

Ed Perlmutter

HIV Testing Advocate, Boston; Diagnosed in 2006

The (routine HIV screening) chorus just got a whole lot louder. Its collective voice is clear, its message precise - no out-of-tune cacophony here, and how sweet that chorus sounds.

I was pleased as punch to learn in late November that the U.S. Preventive Services Task Force is now calling for routine HIV screening for all Americans aged 15 to 65. The task force, federal government-backed and comprised of doctors and scientists, is also calling for routine HIV screening for all pregnant women. More good news (and why elections are so important): Under the Affordable Care Act of 2010 insurers are required to cover preventive services that are recommended by this task force.

There is a direct cause-effect between early and routine screening and diagnosing new HIV cases and getting these people into treatment when appropriate. Treatment not only helps the HIV-positive individual live in health, but it also helps prevent future virus transmissions. And the current recommendation does not cherry-pick about who should be tested (as is presently the case in many places, including the Commonwealth of Massachusetts, where I live). Rather, the task force recommends screening everyone regardless of their risk. I've been promoting routine HIV testing for some time here at TheBody.com and elsewhere, and we're much closer now to the 2006 U.S. Centers for Disease Control recommendation to make HIV testing as routine as a cholesterol screen.

On Worlds AIDS Day I have so much to be proud of, and thankful for, and I'm extraordinarily grateful to the task force for their recommendation and the positive, stigma-free direction for the future of HIV screening and diagnosis.

Nelson Vergel

Nelson Vergel

Program for Wellness Restoration, Houston; Diagnosed in 1986

I am proud to be an activist that works with other activists to improve treatment access, HIV research and care. I am proud that most of my peers have fought hard for us to have what we take for granted today.

Tyrone Lopez

Tyrone Lopez

STD/HIV Prevention and Outreach for the Tohono O'odham Nation, Tucson, Ariz.; Diagnosed in 2003

I would probably say, I'm most proud of meeting Kory Montoya. He was a Native American living with HIV and hepatitis C, and I heard him speak and how profound he was about it! He was one of those that I had a really good relationship with before he passed on. He was one of the first ones that I actually told my HIV status when I saw him in Phoenix. One day, we were taking a walk and I told him that, with him coming out and saying a lot of things, I told him what my status was. When he passed on, it hit pretty hard.

Sherrie Burch

Sherrie Burch

Community Counseling Center of Southern Nevada, Las Vegas

Being there for my clients. I'm a mental health and a substance abuse counselor. All of my clients are HIV positive. I've had some where I know them from the day they were diagnosed to the day they died. Just being there every step of the way. I have some of my clients I've had for almost the full 11 years that I've been doing this. And, I've become the mother hen from hell, and they all know that. Making sure that they take their medications, and being there, compliant. Working through all kinds of issues. I've seen the whole gamut from first diagnosis to being there when they died.

Walker Tisdale

Walker Tisdale

Fulton County Department of Health and Wellness, Atlanta

This is a community that does not give up. No. We are not complacent, and we work within the political strata, we work within the cultural strata, and there are things that change. There is more and more public support of HIV and people who are living with HIV than ever before.

Bob Munk

Bob Munk

New Mexico AIDS InfoNet; Diagnosed in 1987

I'm proud of the way several community organizations have developed resources and interventions for their particular populations that seem to really engage people. I'm thinking particularly of the Black Treatment Advocates Network and SisterLove, for example, that have been just truly landmark interventions, again, in their populations. There are no one-size-fits-all solutions -- especially if we're talking about getting people motivated to get tested and get into care, it absolutely has to be tailored to the local population -- and probably delivered by people who look like me, sound like me, have lifestyles like me -- and that's a huge challenge.




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