World AIDS Day: Leading with Our Community Partners

World AIDS Day celebrates the vital role communities play in shaping the response to HIV and in global health overall. It serves as a positive reminder for HIV/AIDS organizations to persist in their crucial efforts to support health care reform, advance community care, advocate for patient rights, and more, recognizing that there is still much work to be done.

The term “community” refers to a group of people who live in the same area or share common characteristics, as defined by the Oxford English Dictionary. It also embodies a sense of fellowship among people who share similar attitudes, interests, and goals. In the context of HIV/AIDS, the concept of community takes on an even greater significance.

Communities play a crucial role in enhancing and sometimes saving the lives of individuals living with and aging with HIV/AIDS. They provide a platform for individuals to be acknowledged, heard, and loved, offering a supportive family of individuals with shared experiences and commitments. This solidarity often manifests as grassroots community activism, which has been instrumental in advocating for significant legal reforms and creating more inclusive health care systems for those living with HIV/AIDS.

In recognition of World AIDS Day and the impact of HIV/AIDS both nationally and globally, Ribbon is spotlighting three partner organizations that are exemplary in placing community at the heart of their mission.

Christie’s Place

“We’re not afraid to lead with love,” says Rhea Van Brocklin, executive director at Christie’s Place. Christie’s Place is a 27-year-old, grassroots, non-profit, social-service organization located in San Diego, Calif. It provides HIV/AIDS education, support and advocacy that centers on serving women, children and families living with HIV/AIDS. It’s named after a courageous HIV/AIDS activist, wife, mother and daughter who died from the virus that causes AIDS. Christie Milton-Torres’ stepmother founded Christie’s Place in her loving memory.

Christie’s Place is unique because it provides one-of-a-kind, personalized human services that medical facilities don’t often provide due to their bottom lines.

“Communities need places like Christie’s Place because we’re the ones who the clients trust,” says Van Brocklin. “We’re the ones when they walk in the door, we’re not afraid to hug our folks. We’re not afraid to just sit and have a cup of coffee and ask them about their day. Listen to what’s going on in their lives, their relationships, and it’s kind of a luxury to be able to get to know your clients in that way.”

Promoting Longevity & Well-Being Christie’s Place is a haven for women to connect with other women going through similar health issues. “When we talk about aging with HIV, the sense of connection and the sense of belonging is so incredibly important,” says Van Brocklin. Research shows that belonging to a community and being active in your health care promotes longevity and well-being, according to the National Institutes of Health.

Unfortunately, many community-based, grassroots organizations like Christie’s Place are no longer getting the funding needed to provide this type of personalized service that women and children affected with HIV need. In fact, Christie’s Place is the only organization in Southern California offering coordinated HIV services that are wraparound so they help people reach viral suppression and stay engaged in care by really addressing some of those needs that they can’t get through health care, according to Van Brocklin. At Christie’s Place, clients can access a substantial range of services provided by expert staff and a network of collaborative partners that empower women and families to help themselves and each other.

“Women have childcare needs, they have employment needs, transportation, mental health, isolation and stigma, all of those things are addressed through our services,” says Van Brocklin. “We also hold up the community and elevate the voices of the people who we serve.”

SAGE

SAGE, a national advocacy and services organization, has been leading the fight on behalf of LGBTQ+ elders for more than 40 years. With a tagline that says we “We refuse to be invisible,” it makes sense that they also bring light to important issues related to HIV/AIDS policy.

“We build welcoming communities and keep our issues in the national conversation to serve a fulfilling future for all LGBTQ plus people,” says Terri L. Wilder, a HIV/AIDS policy advocate for SAGE.

It’s safe to say that SAGE is a movement within an organization that provides advocacy, services, and support to older members of the LGBTQ+ community, including those living with HIV. With numerous programs like SAGEVets (for gay veterans) and SAGEPositive (for long-time survivors of HIV), this organization is always finding new ways to positively impact the lives of those living with HIV/AIDS.

Policy Advocacy for Aging Populations with HIV A key policy issue for SAGE right now is to remove the upper age limit on the Centers for Disease Control & Prevention (CDC) testing guidelines. Currently, the CDC recommends that people aged 13 – 60 be tested, annually.

“It’s way beyond time for the CDC to remove that upper age limit so that their guidelines say offer HIV testing to people 13 and older,” says Wilder. “We know that older people, particularly over the age of 65, acquire HIV. And, we also know that the older you are, when you do get your HIV diagnosis, the more likely you are to have advanced disease, meaning that you are more likely to be concurrently diagnosed with HIV and an AIDS diagnosis.”

SAGE is working the political process on the federal policy level, as well as on the state level. A major issue on the state level is to ensure that there’s an HIV Long-Term Care Bill of Rights for those aging with HIV/AIDS in nursing homes, rehab facilities, etc.

“We want to make sure that folks from the community are treated with respect and dignity, and that the health care providers are trained in cultural competency,” says Wilder.

It’s advocacy done state-by-state (and sometimes county-by-county) to ensure that this bill gets passed. New York, Oregon, New Jersey, California and Montgomery County in Maryland has passed the bill. SAGE will not stop until all 50 states are onboard regardless of how long it takes.

SAGE is a wise fiend and a community of LGBTQ+ elders who “fought— and still fight—for your rights. And they will never stop fighting for theirs.”

APLA Health 

APLA Health, a 40+ year old California-based organization, aims to restore dignity and trust within underserved communities. It provides world-class LGBTQ+ empowering healthcare, HIV specialty care, food, housing and other essential support services. This organization continues to evolve to meet the changing needs of its community members in all areas of their lives.

Reducing Stigma & Isolation Tevin Henley, a clinical case manager at APLA Health, is working hard to help reduce stigma and isolation from community members in his care. A big part of his role is creating community and safe spaces for the LGBTQ+ living with HIV via APLA Health programs like HIVE and Women Together.

HIVE (HIV-Elders) is tailored to men who have sex with men (MSM) of all ethnicities who are 50 years of age and older and living with HIV. Women Together was created just for women living with HIV, and it provides a safe space for conversations, peer support and new friendships.

“[These programs] are a twist on the standard kind of support group that sits in a circle sharing,” says Henley. “We’re getting people up and active in the community. We have twice a month movie nights, take walks on the beach, go bowling and do various events to get people up and active.”

Isolation is a leading indicator for many health issues both physical and mental, according to the National Institutes of Health. Research has shown that persistent social isolation is a predictor for cardiovascular problems, mental health disorders and increased mortality rates. So, it’s key for those living and aging with HIV to socialize and foster meaning as a protective factor for their overall health.

“Communication is big, allowing people to feel heard and the act of listening, is very therapeutic,” says Henley. Both go along away in helping to reduce stigma and isolation among those living and aging with HIV.

A Special Community Event: Honoring Our Experiences: The Healing Power of Community

Are you looking for a unique community experience that honors your journey with HIV? Consider attending a three-day retreat (April 12-14, 2024) titled “Honoring Our Experience: The Healing Power of Community.” This retreat is for all people impacted by HIV regardless of their status. Community members will come together to share, laugh, cry, have fun and to celebrate life with hands-on, experiential workshops at the beautiful Saratoga Springs Retreat Center in Upper Lake, Calif.

The retreat will be facilitated by Gregg Cassin (and friends), a long-term survivor of HIV. Cassin is the founder of the Healing Circle, and the San Francisco Center for Living. He’s led conferences nationally with AIDS, Medicine and Miracles. Cassin has also led retreats and workshops for the LGBTQ+/HIV, and at-risk youth communities for over 25 years.

To learn more, visit the retreats and events section on the Saratoga Springs Resort website.