Successes and Challenges Facing HIV Service Providers in Sacramento
We talked to Geri DeLaRosa, Ph.D., founding executive director of Sunburst Projects, an HIV services provider focusing on women, families, and children.
Geri DeLaRosa: I’ve been in the HIV field since 1982. I’d been a newborn-intensive-care nurse, and I knew there was a need for serving HIV-positive children, because there was no support available for them, and families were being ostracized from their communities. I wanted to create a sense of community. I had already started a summer camp for kids with cancer, at a time when they were often kept out of school due to lots of stigma and fear. So I decided to open the camp up to HIV-positive children and their families, bringing them from across the U.S. to Camp Sunburst in Northern California.
Tim Murphy: How did the agency evolve?
GDLR: Our main office was in Sonoma County, with the satellite office in Sacramento, so in 1994 we received our first Ryan White funding and became an actual 501c3 nonprofit to support youth and families living with HIV/AIDS, mainly single HIV-positive women and their children, but sometimes HIV-positive fathers as well. From there, we developed into a case management model with a childcare program and support groups for children, youth, and women.
Then we were invited to go to Sacramento and be part of a subcontract with The CARES Foundation, the largest regional AIDS organization. We provided respite childcare services. In the early days, a lot of parents would go into the hospital and have nobody to take care of their children. Since then, we’ve grown into a larger organization that does mental health services and medical case management for a variety of populations. We’re still fairly small, but we do big work.
TM: Can you describe your clients?
GDLR: We’re primarily a people-of-color organization, about 39% African American, 26% Hispanic, 25% white, and the rest Asian or Native American. We have clients from many different countries, including Africa. We probably serve about 300 clients throughout the year, but we have about 150 active clients currently receiving case management—mostly single moms raising two or three children, some of whom have HIV themselves.
Most of our work now is around preventing new infections, so we work a lot with HIV-positive mothers. Roughly, we touch 3,000 people through outreach, education, and our “Lunch and Learn” trainings, where we bring people up to date on the new meds. Sometimes we just host pharma-sponsored lunches for care providers.
We have 10 full-time staff, all women of color. Two are openly HIV positive, and two are openly LGBTQ.
TM: What is your budget and gamut of services?
GDLR: Our budget is a little more than $900,000, primarily Ryan White funding. We have medical case management—in-house and out-of-house. We have mental health services with both individual and group counseling. We have our annual, three-day One Love Conference for HIV-positive people ages 18 to 26. We do prevention and education services in the schools. And we also have our 340B [Medicaid] pharmacy, which fills prescriptions for most of our clients who get their care at Kaiser Permanente or One Community Health.
We have a food pantry every Thursday. We have a big holiday party for all our families. We have an “Adopt a Child” program, where we ask clients their and their kids’ needs, then we work with Sacramento State (college) to get presents for kids—blankets, coats, shoes, toys—and gift cards for the adolescents. It’s a big event with a Santa Claus of color, a DJ that plays holiday songs, a dinner, and a photographer that does annual portraits of the families that we give as a gift.
TM: What about Camp Sunburst?
GDLR: It’s been going since 1982, and now it’s international—there’s a camp in Kenya, and one of my volunteers also started one in Cape Town, South Africa. Back in 2010, we went to Kenya and started a peer leadership program.
The California camp is weeklong and staffed by volunteers. It’s regular camp stuff, but we have an HIV prevention and education section for the older kids with workshops on HIV disclosure, medical adherence. Adolescents don’t want to be identified at all with having the virus, and it’s common for them to not want to go to appointments or take their meds, so we try to help with that.
We’ve had [adolescent] kids infect other kids. About five years ago, this particular kid, he was on meds but apparently intermittently, because he had detectable viral load and got another kid infected. Everyone from both families had to get together and talk about it. Unfortunately, that kid [who wasn’t taking his meds] died a year later.
TM: How would you characterize the current HIV situation in Sacramento?
GDLR: I think we have a real challenge around mental health services—probably almost at crisis level, in terms of being able to provide those services to HIV-positive people. Many of those folks require ongoing support, especially the long-term survivors, newly diagnosed, and young people, and there are not enough centers for people who need intensive services. I see a lot of un- or undertreated depression.
TM: How are undetectable equals untransmittable (U=U) and pre-exposure prophylaxis (PrEP) efforts going in the area?
GDLR: I think we’re doing a big push on both, but I don’t know how well it’s going. There’s a definite need to reach out more to adolescents who are not being tested.
TM: Is that primarily gay and bi young men of color you are talking about?
GDLR: Yes, but also I think young heterosexual women of color who don’t really know where to go if they test positive. They just don’t think there’s anyone out there to help them, and it’s only a fluke if they get in touch with us. I worry about the kids in schools who are positive but haven’t been tested and don’t know it. There are health services at the Sacramento LGBT community center.
TM: What are you most proud of?
GDLR: The quality of care for our clients—being able to empower people to be the best at who they are and see themselves from a perspective of wellness rather than illness. Like with our One Love program and also Camp Sunburst, the young people there become counselors and become part of our outreach, groups that go into schools and talk about prevention.
Also, recently we did a study with UCSF [University of California, San Francisco] on the impact of Camp Sunburst, and it proved that the kids who went there were more likely to remain in care and adherent to their meds, because they felt a sense of community, love, and support.
TM: Where do you feel stuck or frustrated?
GDLR: Some of the long-term survivors among our clients have become distant and removed, isolated. I’ve sent out announcements of things that are coming up, but they don’t respond.
TM: Do you have folks who reach out to them individually?
GDLR: Sometimes we call, but not very often. Our gay men’s long-term survivor group recently disbanded, and now some of them are feeling isolated, so we’re trying to think of what to do about that.
TM: What would you put more money towards?
GDLR: I would hire another social worker to expand our mental health services so we could do more individual counseling. We do that now, but it’s very limited. I’d also create a clinic where young people with HIV could come for all their services in one place and feel safe.
TM: What do you take away from the nearly four decades you have worked in this field?
GDLR: HIV/AIDS is just a small piece of it—it’s more about humanity and being open to the challenges. It’s about how to treat people. HIV care has been a model for a lot of other health services, that coordinated level of care and dealing with the underlying social and economic structures. It makes you look at your values and overcome your prejudices. When I first started working in the field, with women in the [poor and drug-heavy] Tenderloin in San Francisco, I remember that in my own mind I thought that doing drugs was destructive, but I had to get through that and be there for them.
It’s hard when you see what happens when a mom goes back on drugs. The kids are hiding under the table. But you have to learn how to be compassionate and let go of your biases and prejudices. You don’t know what people have gone through. And it’s given me the opportunity to grow that part of who I am, the divine part, which we all have.
Positive POV: Trenice Murphy
We talked to Trenice Murphy, 29, of Sacramento, who is Sunburst Projects’ administrative manager. She was born with HIV.
Trenice Murphy: My mom got HIV from a blood transfusion and I was infected at birth, but my parents didn’t know until I was two or three and wasn’t eating right. So that’s when I was tested and they found out. I had to take “vitamins” growing up without really knowing what they were for, and I was very resentful about that.
I didn’t find out that I had HIV until I was at Camp Sunburst at the age of 11 and saw other kids around me taking meds, some of whom were in foster care because they’d lost their parents to AIDS. We had the AIDS Quilt come to us, and I saw kids on there who had died and didn’t understand why I wasn’t on it, too. So I went and talked to my dad, who raised me a lot because my mother, who died seven years ago from cancer, struggled with alcohol and drugs and wasn’t available a lot. He let me know I had HIV. Then my doctors started explaining more about it to me.
Knowing I had HIV made me start feeling very private. I didn’t want people to know, and I suppressed the thought of living with it. My mom and I really never talked about it—only once, when she apologized for passing it to me.
In high school, I was very reserved when it came to dating, because I didn’t want to disclose my status. I’d take my meds at friends’ houses and they’d ask, “What are those?” and I’d say, “Oh, they’re vitamins,” but it was challenging. I was also born hard of hearing and had to wear hearing aids.
After high school, I got into a serious relationship with someone but didn’t tell him my status. We weren’t using protection, and I ended up getting pregnant, so I had to tell him about my HIV. He wasn’t very accepting. He was angry that I had not told him sooner. So we broke up, but I went through with my pregnancy, because I’m against abortion, and now we coparent our seven-year-old son—who is HIV negative because I was on HIV meds while pregnant—to the best of our ability.
After having my son, I took some time to find ways to accept who I am. I knew that when it came to dating, I had to be more open and honest, so I took two years off from dating. Then when I finally met someone, we had sex with a condom, then I disclosed. And he said, “Oh, OK, when can we have sex again?” He was really open-minded and told me he knew already of a friend who was HIV positive. He’s always encouraged me to be involved in HIV work, to take my meds. He asks if I’m OK and is always giving me stuff he reads about HIV. We got HIV and STD tested together once I disclosed to him, which was a big step for us. He’s on PrEP now.
Tim Murphy: Tell us about your work at Sunburst.
Trenice Murphy: It’s actually my first time working in HIV—before, I worked for a mental-health nonprofit. I’ve been here nearly five years. I’m the person who pretty much keeps the organization going with administrative stuff, office management, billing, making sure files and databases are kept [up], a little bit of outreach.
I feel like being HIV positive all my life and now working here has made me more connected to and accepting of who I am. I’m able to be in a line of work to give back to my peers living with HIV and show that you can still be healthy, work, have babies, and do it all. There aren’t a lot of open examples of people of color my age living with HIV, so when I see my peers walk in here, it’s a great feeling to be an inspiration to them.
Tim Murphy: What’s your take on the bigger picture with HIV in the Sacramento area?
Trenice Murphy: There’s a lot of promotion of PrEP—they’re being proactive getting the word out that even if you don’t believe in condoms, you can still practice safe sex [in terms of HIV]. As far as being educated about HIV, there are a lot of community activities, but I don’t see it too much in the urban communities. I would like to be more of a spokesperson in those communities—it’s just a matter of knowing where to reach out.
Tim Murphy: How would you sum up your life at this point in your journey?
Trenice Murphy: I’m very resilient, and I’ve built the strength to not allow my HIV status to hold me back from reaching my goals. I plan to go back to school to get into social work. I really want to put more time into learning more about the HIV field. I don’t feel like I know enough yet to get out there and teach someone else. I’d like to have my own nonprofit doing HIV education in the black community.
And for anyone my age with HIV that wants to get out and date, start a family, have a kid—that’s all possible. Your insecurities can get the best of you, but don’t let them.