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Across the U.S., People With HIV Join Forces to Build Networks Stronger Than Stigma

August 25, 2015

Since the beginning of the AIDS epidemic, networks of people living with HIV (PLHIV) have played critical roles, supporting their communities while advocating for effective, science-based policies to combat the virus. However, many of the networks that thrived in the early years have diminished or disappeared, along with the nation's sense of urgency about HIV. According to Tami Haught from the Sero Project, this has left many PLHIV feeling stigmatized and alone, and without a community to help them fight for their rights and health.

"We need more networks advocating for the community and combating stigma by speaking out," says Haught. "We need to advocate for better access to care, for accelerated research on HIV and aging, against criminalization of PLHIV and on so many more issues."

In an effort strengthen existing networks, with a particular emphasis on those in the South, the Sero Project is teaming up with the Southern AIDS Coalition (SAC) to hold a Network Empowerment Preconference on September 18, in advance of the 18th annual Positive Living Conference in Fort Walton Beach, Florida, one of the largest gatherings of positive people in the country.

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"We are where we are with the epidemic because of the amazing advocates living with HIV who demanded progress," says Nic Carlisle, executive director of the Southern AIDS Coalition. "And now, thanks to this, so many people are talking about the end of AIDS and an AIDS-free generation, but I have no doubt that we will not get there without making sure PLHIV are part of the process."

In addition to her work with Sero, Haught is also the president of PITCH (Positive Iowans Taking Charge), a network of positive people in her home state. This experience has shown her first-hand the importance of networks in PLHIV's lives -- especially in places like Iowa, or in the South, where PLHIV often reside in isolated rural areas or in urban areas with few HIV resources.

"PITCH holds a weekend retreat for PLHIV in Iowa, which is so valuable to so many people who feel isolated and alone,� says Haught, who has been living with HIV for 23 years. She believes that HIV-related stigma in her area has intensified in recent years, increasing PLHIV's silence and isolation. "People tell us, 'This [retreat] is the only time I can be me,' or 'I can't disclose anywhere else because I am afraid I will lose my job or housing.' We need so much more of this kind of community support."

Wanda Brendle-Moss, a volunteer and client at AIDS Care Service in Winston-Salem, North Carolina, who plans to attend the preconference, reports that networks have played an important role in her life as well. "I credit AIDS Care Service with saving my life after my last relationship led to my homelessness," she says. "After that, I started seeking out ways to give back, and now I'm also part of the North Carolina AIDS Action Network and Positively Speaking, and blog for The Well Project. Do I feel connected to other positive people? Absolutely."

She says that this connection and support has empowered her to fight stigma by living openly as an HIV-positive person in a community where few feel safe doing so. "I wear a button always that says, 'I Am HIV+ and Live in Your Community,' and I find that [other PLHIV] see me and seem to have confidence talking to me and inviting me into their world."

Nearly 100 representatives and clients from HIV service organizations and networks in at least 14 states will attend the free Network Empowerment Preconference. Participants will discuss the importance and history of networks, ideas and examples of how AIDS service providers can support PLHIV through network creation, and long-term state-by-state strategies for successfully establishing and maintaining networks, among other topics. Organizers want to learn what effective networking strategies are already in use that can be replicated elsewhere, what needs remain and how they can be of assistance.

While Sero Project hopes to bolster the declining number of networks nationwide, advocates say that the absence of networks in the South is especially dangerous. The region includes just over one-third of the nation's population, but has 50% of new HIV infections and the highest rate of HIV-related mortality. The South also bears a disproportionate burden of the factors known to fuel HIV, including poverty; lack of health insurance; lack of sex education in schools; high prevalence of other sexually transmitted infections; and stigma against HIV and the populations most affected by it, including LGBT individuals, sex workers, injection drug users and African Americans.

"We have a perfect storm of factors fueling the epidemic in the South," says Carlisle. "At the preconference, I plan mostly just to listen and hope to find out how the Southern AIDS Coalition can help empower people to live openly with HIV where it's safe [to do so], and advocate for better policies, because the best way to attack stigma and create change is to empower the stigmatized."

Lucile Scott is a writer living in Brooklyn, New York, who has written extensively about the global and domestic AIDS epidemics for POZ magazine and organizations including amfAR and Housing Works.


Copyright © 2015 Remedy Health Media, LLC. All rights reserved.


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