By Corey Arvin, Staff Writer
Activists say the HIV population is vulnerable and larger than records indicate
When San Bernardino County’s population began to boom about 15 years ago, it was a magnet for young families eager to stake their claim on a piece of more affordable housing than what they were accustomed to elsewhere. Many of the migrants reshaping the county’s demographics were minorities. And although the county was often criticized for a lack of zest or cultural appeal compared to neighboring Los Angeles County, it didn’t stifle the influx of new residents from different backgrounds flooding once-underpopulated cities.
In the midst of this new, millennial migration came a growing HIV population that local HIV/AIDS activists say are underserved – and likely undercounted. According to the San Bernardino Department of Public Health, HIV cases in San Bernardino County increased by 4.9 percent in 2013 to 3,613 cases compared with 3,457 cases in 2012. African-Americans make up a large portion of the county’s HIV population, accounting for 19.8 percent of cases diagnosed even though they represent about 9 percent of the county’s general population.
National statistics have indicated African-Americans are vulnerable to healthcare disparities, as well as managing their HIV conditions. A Centers for Disease Control and Prevention (CDC) report in February showed that only about one in every three blacks are receiving effective HIV treatment to manage their disease. It’s one reason why local activists and HIV organizations are pushing for increased awareness about the HIV population in San Bernardino County, and stop the flow of new HIV infections.
Nosente Uhuti, MSW, is one of the Inland Empire’s earliest HIV activists. Uhuti recalls the days when she would walk streets, spreading information about the disease and urge testing. Although those instances were in the 1980’s when HIV/AIDS invoked fear and hysteria, Uhuti insists the disease remains an issue that isn’t receiving enough attention by officials.
“I think it’s because they took away the resources that agencies need to do the job. One of the first cuts, when money became really tight around HIV/AIDS, the first cut was education. So, I’m not really surprised that the numbers are rising if you’re not educating the community. That’s kind of a result of that, but it’s not because the agencies don’t want to, I think it’s more that they don’t have the resources … and it’s within the framework of how they do outreach,” said Uhuti.
Uhuti, who served as an advisor to the Inland Empire HIV Planning Council (IEHPC), is no stranger to attracting attention to HIV/AIDS in the region. In 2010, Uhuti, along with now-deceased HIV activist Pat Green-Lee and other activists, protested before the San Bernardino County Board of Supervisors over failures in leadership regarding HIV/AIDS. She, along with Kismet Evans, chief executive officer of Inland Empire Veterans Stand Down (IEVSD), formed the One Voice Collaborative, an HIV/AIDS advocacy group.
Uhuti is steadfast that effective HIV/AIDS outreach must be done within minority communities and the message has to be delivered by credible individuals who fit into those environments, otherwise the effort is wasted.
Challenges to Healthy Living
Jonia Williamson knows firsthand why it’s critical for those who are HIV positive to have access to resources and support services, she said. Williamson said she was infected by her partner, who didn’t disclose or possibly know his HIV status. Williamson learned of her condition in 1993 after she was rushed to emergency care with respiratory ailments and chicken pox. Against her doctor’s advice, Williamson rebuked medication out of fear it would kill her sooner and lead to a “miserable death.”
Williamson, who is HIV positive, fled from her life in Miami-Dade County, Fla. during a tumultuous period to start a new life in California and be near her sister. Williamson opted for a “holistic” approach to managing her HIV, surviving about 10 years on vitamins and without medication until her condition began to worsen and her T-cell count dropped. By that time, new medications were available that eased Williamson into a medically-advised regimen, with less pills than she would have taken shortly after her HIV diagnosis.
Williamson eventually settled down in Highland, a city east of San Bernardino, and evolved into a full-fledged HIV/AIDS activist. Williamson said she recognizes there is a significant gap in HIV resources available to HIV-positive people living in San Bernardino County.
Foothill AIDS Project (FAP), was one of the leading organizations to confront the HIV/AIDS crisis in the Inland Empire, mostly San Bernardino County when the non-profit was created in 1987. Back then, the organization was mostly run by white men and provided outreach to men of a similar demographic. The organization is still providing resources to the region’s HIV/AIDS community, and is also now more multi-cultural, providing assistance to more minorities and women, with a staff that reflects the changing face of HIV/AIDS in the Inland Empire.
More than 90 percent of FAP’s clients live in poverty, and more than half of them reside in San Bernardino. About one-third of its clients are women, many with young children. And about 65 percent of the organization’s clients are African-American and Latino.
Art McDermott, development and communication manager for FAP, said the statistics underscore why it’s important for the agencies to maintain funding to reach people who need resources, such as information about access to doctors, medicine, and referrals. The organization helps clients access mental health services, housing, and substance abuse counseling, among other services.
Williamson, who is also a client with FAP, credits the organization’s help by providing her with weekly therapy and leans on them when necessary, but admits there still are not enough resources to help the HIV community in San Bernardino County.
“It’s not enough. They need more people to help the community. There are some people that are still afraid to admit they are HIV positive. There are still people afraid to get the test done. But the sooner they get the test done and as soon as they get the meds, the better off they will be,” said Williamson.
Stigmas and Stereotypes Persist
Kevin Powell has been HIV positive since 1988 and understands the stigmas that surround people who are HIV-positive. Powell says he was fortunate to be supported by a family that is accepting of same-sex relationships.
Williamson’s story, however, models a common reaction that black HIV activists say still persist in the African-American community. Williamson, who was very active in her church, said many people turned their backs on her and spread rumors about her once she began to disclose her HIV status. No longer did her church family hug her, people were afraid to touch her.
Uhuti and Evans both agreed that the stigma facing African-Americans who are HIV-positive remains prevalent. Those stigmas, often fueled by stereotypes about a person’s lifestyle, can be detrimental because people living with HIV need a supportive environment because no one knows their issues behind closed doors.
African-American activists suggest that church and religion is still influential on black culture and has the ability to shape the attitudes and perceptions people have about HIV/AIDS – if more church leaders would confront the issue.
Pastor Harry Bratton, pastor of Greater Faith Grace Bible Church in Rialto, said it would be helpful to the HIV-positive community if more pastors were open to discussing HIV in their congregations since it isn’t only HIV-positive people who may be affected by the disease.
“I really think they should be very open because you never know how many people in your own church have family, friends that may be affected by HIV but because being a social stigma they may be afraid come forth and church needs to be a safe place they can come and say ‘my son or my daughter or cousin’ is affected by HIV, what can the church do.”
There are moments when an assignment becomes more than just a body of interviews and research. For me, these moments are quite rare. As a journalist, depending on where you sit, when a feature story stirs emotions and elicits a newfound outlook on your personal life, it can be either a blessing or a curse. I choose to view my recent HIV/AIDS project as a blessing in disguise.
This week’s HIV/AIDS story fell in my lap. Our publisher Paulette Brown-Hinds, PhD, received information about Foothill AIDS Project (FAP) and asked if there was a story to cover. It wasn’t long before I was on the phone with FAP, requesting clients I could contact. One of those clients was Jonia Williamson, who has exemplified the type of unwitting bravery that astounds me. Over the Summer, Jonia shared with me her story of finding out she was HIV positive, how her friends and church family shunned her, and the thoughtless rumors made about her, resulting from the stigma of HIV. All of the strife she endured that pushed her to California, where she turned her life around.
Perhaps that should have been “a wrap,” as they say. It’s an original story with a beginning, a middle, and an end, but Jonia’s story – and the experiences shared by other HIV/AIDS activists – was already hitting home … and I had no idea. In fact, until last week, Jonia’s story was still helping me contextualize the loss of my uncle. My uncle was more than just an uncle, he helped raise my younger brother and I when I was 13, after our father suddenly died. My uncle stepped in and did what he could to watch out for us. My grandmother probably played a role in this, but every Summer, from 13 to 18, I was with family, not just learning about our history and creating new memories, but understanding the purpose of family … something I previously never understood.
My uncle was unmarried all of his life. He was a handsome, physically-fit, well-spoken man with southern sensibilities – not the type of man who stays on the market unless there’s a distinct reason, I suppose now that I am older. I never really questioned why he was single. I didn’t assume that made me naïve, I thought it made me as ignorant and unassuming as most people should be about why people make personal choices about their love lives. But apparently, people were assuming a lot about him.
I got word in late August my uncle was terminally ill. It seemed out of nowhere. Just the year before, he was diagnosed with prostate cancer, but he was in good spirits. He had a reason to be. Prostate cancer is usually one of the less-aggressive forms of cancer. But in an instant, it seemed he was losing his battle. There was a moment when I thought he would bounce back, just as my uncle convinced me he would a year ago. I made plans to see him in the morning, but the moment I opened my eyes, my cellphone rang and I knew it wasn’t good. He was gone. I lamented not seeing him, wondering if he asked where I was, curious if he was upset I wasn’t there, but my aunt assured me “it’s best I remember him the way he was.” My uncle had whittled down to about 100 pounds, had skin lesions, and couldn’t speak. He suffered until the very end.
Nothing added up for me: his swift death, his symptoms, and bed-ridden condition. Later that morning, it was revealed to me that my uncle was living with AIDS and it compounded the symptoms with his prostate cancer. My uncle, for years, had been buried underneath the type of shame that drives men to kill themselves. He didn’t want anyone to know – and I certainly was not to know his condition at the time.
My uncle needed virtually every service organizations like FAP can help provide. He needed a support group, he needed therapy, he needed a referral to a specialist – he epitomized why organizations like FAP exist. Unfortunately, he didn’t know they existed, and maybe didn’t want to know. His fears of judgment were sadly warranted. As with most family secrets, word spread. Petty fodder ensued, like “Well, you know he lived in San Francisco before…”
To call those suggestions silly and destructive would be an understatement. Unfortunately, it happens all the time. Does living in San Francisco give you AIDS? Does being gay imply you should have AIDS? As I strung together a mental timeline, I realized that the period he contracted HIV was likely when he lived in San Bernardino. There goes that “San Francisco” theory! However, no one will ever know for certain where and when it happened.
Jonia’s advice was very sound: the stigmas have to stop. Too often they have no basis, and more importantly, they are never justified. They don’t help the black community cultivate a better understanding of HIV/AIDS, they hurt us because we assume what HIV/AIDS looks like and assume what makes us “safe” from the disease. And we pass these stigmas down to our children, creating a new generation of cultural ignorance. Everyone should get tested and everyone deserves access to treatment.
Last week, I tweeted that #WorldAIDSDay is every day. It couldn’t be more true. Every day someone is suffering from HIV or AIDS. Someone is choosing not to seek treatment, afraid to share their status and feels hopeless. There is a deep, profound sadness over the loss of my uncle that I don’t believe I will ever be able to shake, knowing that the ignorance of others influenced him to not seek help.
No one should die senselessly. Unfortunately, my uncle did. While I will hold loving memories of my uncle close, I will always remember his death, like countless people before him, as an unnecessary loss.
Corey Arvin is a Contributing Editor for BlackVoiceNews.com. He can be reached at Corey@BlackVoiceNews.com and followed on Twitter @coreyarvin.