According to the Centers for Disease Control and Prevention, more than 1.2 million people in the United States have HIV, the human immunodeficiency virus that can be a precursor to AIDS. One in seven HIV-positive people don’t know they have it, the CDC says.
If you don’t know you have HIV, you don’t take steps to prevent giving it to others.
That’s why Rising Against All Odds, a nonprofit organization operating at 338 S. Woodland Blvd. in DeLand, is focused on targeting people who tend to fall through the cracks of the health care system and might be HIV-positive.
Even if clients don’t test positive for HIV, RAAO can connect them with other health services, with the goal of preventing more costly problems down the road.
“My target population is the homeless, the indigent and the underserved,” RAAO founder and CEO Brenda Flowers said. “I don’t try to attract people that routinely go to the doctor. I consider this organization as standing in the gap.”
Flowers, a DeLand native, tested positive for HIV 25 years ago. When she returned to DeLand after serving in the Army, she found there were few resources for people with HIV.
“When I was in different areas of the U.S., there were always support services and things to encourage people living with this disease,” she said. “When I relocated back here, I noticed there weren’t any services around for people like myself. I needed to stay connected, and I wondered, what were the people living with HIV doing? How were they surviving without emotional support? And thus, RAAO was born.”
Flowers said the name came from her own decades-long struggle.
“It got its name, Rising Against All Odds, because I was HIV-positive, I was an addict, I’d gone to prison before, and it was like the odds were stacked against me,” she said.
‘One person at a time’
RAAO offers a number of services, including free HIV testing, counseling, and outreach into homeless communities. And while RAAO employees used to use an RV for mobile outreach, they’re waiting until COVID-19 is under control to resume that.
Their two most frequently offered services are the health-card program through the West Volusia Hospital Authority, and free HIV screening.
RAAO Administrative Services Manager Shannon Sargent said community outreach and screening are especially important when education surrounding HIV is still a touchy subject.
“People still think you can catch it from a toilet seat. People think you can catch it through a handshake,” Sargent said.
Sargent said HIV cases have been increasing in Florida. Miami and Orlando, the top two cities for increases in the U.S., get most of the federal funding, leaving outlying areas to make do with what they can.
That’s where local organizations like RAAO come in.
In 2018, 365 of every 100,000 people were living with HIV, according to AIDSVu, an HIV mapping project put together by Emory University and Gilead Sciences.
Flowers said, in an average year, RAAO tests more than 1,000 people. The RAAO RX program — a partnership with LabCorp and local pharmacies — has been able to help 120 patients keep up with prescriptions and care.
These measures can keep HIV from turning into AIDS. Taking care of HIV, Flowers noted, is much less expensive than treating full-blown AIDS.
While the Florida Department of Health offers free HIV screening, the nearest location is in Orange City.
Flowers stressed that at least two factors are likely to keep her clients from taking advantage of Health Department services: the difficulty of arranging transportation at the time when tests are offered, and the formal environment of the state medical agency.
“At the Health Department, it’s very clinical. It can be very intimidating,” Sargent said. He said RAAO prides itself on offering services in a nonjudgmental and welcoming atmosphere, in an effort to reach those most likely to avoid health services otherwise.
For example, before COVID-19 made gatherings a risk, Flowers said, one service she always offered was allowing people who are homeless to gather on RAAO’s porch to sit in the shade and have a drink of water.
“I know I can’t do everything, but the few things I can do, I choose to do them,” she said. “It takes just as much energy to chase somebody away or be angry, as it does to say ‘Hey, would you like water?’ It’s the same energy level, so why not use it for good? It’s just amazing what we consider basic things, how it can impact a person’s life and give them a little more self-worth.”
‘Nobody expected me to be a survivor’
Through her activism, Flowers has become a well-respected member of the West Volusia community.
Mural artist Gina Hickman included Flowers and her husband, John Dalley, in her Inspirations of Leadership II mural across the street from Starke Elementary School on Beresford Avenue in DeLand.
The mural features 98 people from the DeLand and Spring Hill communities, including DeLand artist Arthur Rayford and educator Edith I. Starke, for whom the elementary school is named.
“She is a grassroots inspiration,” Hickman said of Brenda Flowers. The two women were friends growing up, and Hickman said she saw Flowers become more involved with drugs.
“I lived most of my adult life with addiction,” Flowers said. “Nobody really expected me to be a survivor, but I was.”
Now she’s helping her nonprofit agency rise against the odds to survive the COVID-19 pandemic.
Funding has been tight, and reaching out to clients has been challenging, but through contactless HIV screenings and tests for COVID-19, RAAO is still supporting the community.
In 2019, RAAO received $219,000 for HIV screening, education, and management of the agency. The nonprofit also received $50,000 in funding from the West Volusia Hospital Authority for its part in the WVHA health-card program, which allows low-income individuals to get assistance paying for health care.
With more funding, Flowers thinks RAAO could expand services statewide, or at least to more than just the DeLand and West Volusia area. But for now, they’re making do with what they have.
“We’re making it work,” she said. “I just made sure the bills were paid and the team members were paid.”
And Flowers has also had to be very careful about her own health.
“I’m separated from the world. I have very little contact with people,” she said. She lives in RAAO’s second office, next door to the main building where people go for testing and other services.
But while COVID-19 has made things more difficult, Dalley, Flowers’ husband and the organization’s HIV program director, said knowing your HIV status is still just as important as ever to prevent community spread of the disease.
“Everyone should get tested,” he said. “People are having sex in poor communities, people are having sex in middle-class communities, and people are having sex in upper-class communities. It’s one of those things that everyone has in common.”
Flowers said it hasn’t been easy to maintain funding for RAAO, and that it is always an uphill battle. But at the end of the day, she said that the goal is to continue to change lives, one person at a time.
“The clients have all kinds of challenges, and you’re running around trying to see how you can best serve them. I’m not just going to have them come in to be lab rats. I want them to really get some valuable services,” she said. “To me, HIV could be just a symptom of a greater root cause, and that’s the socioeconomic system, the living in poverty, the no jobs, the low pay, low wages, no housing. I can’t address all of those, but I can support somebody and let them know their status while I have them in today.”
RAAO is also looking for people to serve on its board of directors. People who are, according to Dalley, “Community-minded and open-minded. We want someone that wants to make things better.”
For more information about RAAO, HIV screening, or to get involved, visit their website at www.risingagainstallodds.org.
Voters will decide fate of board, which funds multiple nonprofits, in November.
Over the past few years, the work done by Rising Against All Odds has been a flashpoint in the debate over whether the West Volusia Hospital Authority should continue to exist.
RAAO is one of four nonprofit community organizations funded by property taxes collected by the WVHA. For the 2019-20 fiscal year, the WVHA supplied RAAO with $219,000 for its HIV program, about 89 percent of RAAO’s annual budget for the program. The WVHA provided another $50,000, about 72 percent of the budget for RAAO’s part in the WVHA health-card program.
But funding nonprofit health services is a relatively new use for WVHA dollars. When the agency was created in 1957, its sole mission was to help the local public hospital provide services to those who couldn’t pay.
Over time, DeLand’s public hospital became a private hospital. West Volusia attracted more privately owned hospitals, and the Hospital Authority’s original mission changed.
The WVHA, run by an elected board of five commissioners, turned to other means of helping the poor with health care, focusing largely on prevention rather than treatment.
Fast-forward to 2020. Again this year, RAAO and the other nonprofits are in the crosshairs as Hospital Authority commissioners debate how to spend approximately $19 million in tax dollars.
Whatever the budget decisions at the WVHA’s 5:05 p.m. Thursday, Sept. 10, teleconference meeting, the debate will continue at the polls.
Every seat on the five-member board is up for election.
Three of the seats were filled in June, when only one person qualified to run for each seat. The other two will be decided in the Tuesday, Nov. 3, election.
Brian Soukup was elected automatically after he was the only candidate to file to run for Group A, Seat 1, which had been held by Dr. John Hill.
Hill, a vocal advocate for dissolving or shrinking the Hospital Authority considerably, left his seat to Soukup, who shares Hill’s views. Hill then filed to run against Group A, Seat 3 Commissioner Judy Craig, a strong supporter of the WVHA’s current mission and its funding of health care nonprofits.
Group A, Seat 2 was filled by Dr. Roger Accardi, who also ran unopposed. Group B Seat 2 was also filled in an unopposed race by Voloria Manning, who had earlier been appointed to the seat after the death of Commissioner Kathie Shepard. Manning has been a supporter of the current mission.
In the final race, for Group B, Seat 1, Michael Ray is running against Jennifer Coen, who has positioned herself solidly in Craig’s camp. Though Ray has not been as vocal as Hill and Soukup, he, too, has raised questions about the Hospital Authority’s spending.
With a majority of seats in play, voters in the Nov. 3 election will likely decide the future of the West Volusia Hospital Authority.