Founded in September 2011, the Los Angeles chapter of the Black Treatment Advocate's Network (BTAN) is committed to empowering the Black community in Los Angeles through training and education. As their first community mobilization project, BTAN-LA is targeting post-incarcerated men, women and transgenders to educate them about HIV risk factors and link them to resources for prevention, treatment and care. Explains BTAN-LA member Richard Hamilton:
Health disparities in the African American community are very high, but one of the highest risk groups within this community are incarcerated and post-incarcerated individuals, with statistics showing that rates of HIV/AIDS are several times higher in the post-incarcerated population than in the general African American population. If we target post-incarcerated individuals and empower them with good information - dispelling myths - and encourage them to engage in healthcare and research, overall it would help to decrease high rates of disparities."
BTAN-LA is founded on the premise that "when we know better, we do better." The organization's primary focus is to improve access to care and treatment through education. Declares BTAN-LA member Precious Jackson; "The more people we have in the community delivering the relevant facts about HIV and treatment education, the better off our community will be."
Since November 2011, the tight-knit group has been meeting twice a month to pull together their shared intellectual and community resources in the creation of a community engagement plan. BTAN-LA's members are well connected to various HIV clinics and community organizations, including the Center for Health Justice, T.H.E. Clinic, and the UCLA Center for Clinical AIDS Research and Education (CARE). Moreover, the SPECTRUM Clinic, which is housed at Charles Drew University and linked to OASIS Clinic, is BTAN-LA's host organization. SPECTRUM is a comprehensive social service program the provides support groups, case management, counseling, and other programming related to the psycho-social dynamics of living with HIV. All of these pooled connections add to BTAN-LA's strength of impact in the Black community.
After six months of creating flyers, distributing newsletters, contacting prisons, visiting parole officers, and attending resource fairs, BTAN-LA is kicking off their project with the post-incarcerated population at the Frontiers of HIV Research community update event, hosted in conjunction with the UCLA AIDS Prevention and Treatment Clinical Trials Unit (APT-CTU) on Wednesday, May 16. The post-incarcerated program members will then attend group meetings for three weeks, followed by clinic tours and educational seminars to facilitate connections in the community and linkages to services.
While BTAN-LA's initial project is targeting the post-incarcerated population, BTAN-LA Co-Chair Dr. Trevor Daniels emphasizes that their work in the community is just beginning:
"This is something that is going to continue. There are so many questions we need to address in Los Angeles around race and ethnicity. We are focusing now on Black people, but we are looking to be even more inclusive in the future with our interventions and activities."
No matter the current project, the members of BTAN-LA are inspired by the opportunity to take an active role in making a difference in communities most impacted by HIV/AIDS.
"I'm here to give back to our community," says member Al Brown. "We see how HIV/AIDS has impacted our communities for past 25 years, especially the Black community. There's been a lack of communication, a lack of commitment. BTAN gives me a chance to participate in helping, not as a person on the sidelines, but actively involved in what needs to be done."
Echoes Jackson; "I'm really excited that I'm part of BTAN. Being of service is what I've been called to do. I think we will help to build their [the post-incarcerated population] self-esteem by giving them the information to be able to go out and articulate the facts."
Ariel Rankin, BTAN-LA Member, T.H.E. Clinic nurse and PhD student at UCLA, chimes in, describing her dedication to and enthusiasm about BTAN's work; "I'm really excited to see where BTAN will go. We have this community mobilization project right now, but what's next? It's going to be a continuous movement to advance and hold up the Black community."
While the road ahead may not be easy, BTAN-LA is prepared to be leaders in the fight against HIV/AIDS in the Black community, through education and empowerment. BTAN Co-Chair Kieta D. Mutepfa sums up the potential for BTAN-LA's work beautifully:
"BTAN represents the basic science of understanding HIV/AIDS, understanding what happens when the virus is in our bodies. Knowledge of this science opens up opportunities for us to be at the table now, through understanding the research processes. I envision a Los Angeles where the research playing field has been leveled to the point that there is equal representation from the communities that are most impacted as we look for a cure for the virus. It's really important that BTAN plays that role."
BTAN-LA is one of six program sites nationwide sponsored by the Black AIDS Institute (BAI) and funded by Merck. BAI is a national think tank founded in 1999 to stop the AIDS pandemic in Black communities through mobilization projects about HIV.
Gene Poppe has been volunteering full time at Being Alive as an unpaid intern for the past year and a half. Having worked previously in New York in the field of international business, he says that volunteering at a grassroots organization is a big shift, but he is inspired by Being Alive's capacity to make such an important impact in the lives of its members.
Similar to the majority of Being Alive's interns and staff, Poppe is living with HIV. He makes it a point to emphasize the LIVING.
"When I was first diagnosed in 1986," says Poppe, "I pretty much went through all the steps to prepare myself for death and dying. But then I realized, with access to treatment and integrative care, that I wasn't going to die, so I had to retrace those steps back to life and living. That's what we do for people here. At Being Alive, we bring people back to a place of life and truly living."
Being Alive offers complimentary care and wellness programs free of charge to anyone with an HIV diagnosis, with services including acupuncture, chiropractic, mental health, plastic surgery, yoga, ceramics and reiki. More than its services, Being Alive is a 1,200+ member-strong community of people living and thriving with HIV.
"There's a real healing that happens as a result of our members' connection to a community of people that are experiencing, living with, and thriving with HIV," says Monica Foster, Being Alive's Development Director. "It's something that's not even tangible sometimes. We keep hearing story after story of the people who are getting healthy as a result of the community that is Being Alive."
Being Alive was founded in the 1980's by a group of three men living with HIV, who, frustrated by the excessive procedures and formality that existed in many HIV organizations at the time, formed a grassroots non-profit that was of, by and for people living with HIV/AIDS. The three began by connecting members through support groups and peer-led potluck dinners in members' homes. Quickly recognizing their members' desire for accessible information, the founders organized the first medical update on HIV in Los Angeles, during the height of the epidemic. Dr. Mark Katz, who now serves as a chief provider in Kaiser West LA's HIV unit, spoke at the event. So many people attended that the West Hollywood auditorium overflowed.
A Culture of Volunteerism
In continuation of the mission of its founders, Being Alive's programs and objectives are driven entirely by the needs of the members themselves.
"It's a basic model," says Foster, "where people are getting healthy and in turn are giving back to their communities. Our members are not just looking for a hand out, but a hand up. They come here and get healthy, and then they turn around and help the next person who comes through the door to do the same."
This spirit of giving is tangible as soon as you walk through Being Alive's doors, where you will be greeted with a friendly hello and a genuine offer to help. Even the organization's directors started as volunteers, driven by their passion for helping people with HIV to live better.
Being Alive's Executive Director, Kevin Kurth, began working as a volunteer at various AIDS service organization back in the 1980's when a lot of people were dying from HIV, including many of his friends. He facilitated support groups with AIDS Project Los Angeles, and eventually ended up working part time at Being Alive as the Mental Health Supervisor. Fourteen years later, Kurth remains modest about the importance of his role in ensuring that integrative wellness programs are accessible to anyone who walks through Being Alive's door. He does beam with pride, however, when he mentions how all their volunteers and staff are empowered to lend a hand in whatever capacity is needed, including prevention education and peer support.
Like Kurth, Foster's entry into the field of HIV was driven by a personal connection to the communities most impacted by the epidemic. Inspired by the specific needs of women, she began volunteering in 1998 at Women At Risk to help raise funds for the organization, and after 8 years of development work there, came to Being Alive to support Kurth in raising monies to fund their growing service portfolio.
The generosity so tangible at Being Alive paves the way for renewed hope among the organization's members. Hope to get well, to thrive, to empower others to do the same. In honor of this spirit of giving back, Being Alive hosts each year the Spirit of Hope Awards. This celebration is an opportunity for the organization to honor individuals who are dedicated to advancing the fight against HIV/AIDS. This year's celebration, to be held at the Mondrian Hotel on the night of April 24, will honor the UCLA gene therapy research team for their efforts in advancing novel approaches to eradicating HIV, as well as Project Runway's HIV positive star Mondo Guerra, documentary director David Weissman, and Emmy Award-winning actor Leslie Jordan.
Poppe, who attended the celebration last year, describes the night with enthusiasm:
"I loved it. Ryan White's mother was honored. She has such an amazing spirit. You can really see that spirit of hope in the honorees. It was great to be in such a positive atmosphere."
"It's really a night about honoring the unsung heroes who are humbly, modestly and tirelessly doing the work they are doing," adds Foster. "It shines a light on the work people are doing to support the services we provide, an occasion to celebrate with the community in support of Being Alive."
The Spirit of Hope Awards is Being Alive's biggest fundraiser of the year, with the monies used to develop new programs and enhance member services, including providing for some of the organization's cutting-edge initiatives that address the unique needs of their members:
For more information about the Spirit of Hope Awards on April 24, and to purchase tickets or to make a donation in support of Being Alive, visit www.beingalivela.org or call 323-874-4322.
In an effort to provide our patients and supporters with a comprehensive knowledge of local organizations and services available, the UCLA CARE Center is dedicated to highlighting the work of our community partners.