AIDS’ racism problem

Every day, Pedro (not his real name) takes a dose of Atripla, an anti-viral drug that suppresses the human immunodeficiency virus that’s coursed through his bloodstream for more than a decade. He rarely experiences the side effects he says all HIV medications have, like fatigue and aches, sweating and nausea, and disorientation. Overall, he says he feels good, healthy, lucky.

A 62-year-old Latino man who asked not to be identified, Pedro has lived with HIV since a 2001 diagnosis. And, in both Sacramento and across the nation, he’s a sign of how much has changed—and how much remains the same.

As HIV infection rates continue to decline for white men who have sex with other men, the number of gay and bisexual men of color with or at risk for HIV is now epidemic in scope, according to the Centers for Disease Control and Prevention. A CDC report issued earlier this year estimates that one quarter of all Hispanic men and half of all African-American men having sex with men in the United States will be diagnosed with HIV during their lifetimes.

In Sacramento County, bleak disparities also persist. According to local data, new HIV cases more than doubled between 2006 and the end of 2013 for Hispanics. Similarly, newly diagnosed AIDS cases doubled for blacks over that same period.

Even as the health prognosis improves for those who have contracted the virus, it continues to overwhelm gay and bisexual men of color. There are numerous reasons for this, but the chasmic disparity haunts a compassionate battle that’s well into its fourth decade.

“The social determinants of health such as poverty, discrimination and stigma are fueling the epidemic of HIV and other STDs among gay men of color,” AIDS Healthcare Foundation President Michael Weinstein said in a statement. “Until a ’for us, by us’ approach that empowers these men themselves is adopted these terrible numbers will persist.”

Before he was diagnosed, Pedro experienced the worst of the AIDS panic, during the late 1980s and early ’90s, when he says he provided local home care to 37 people infected with HIV. “Some of them were friends,” he said. “They were all taking AZT [an antiretroviral medication] and they all died.”

The effectiveness of new anti-viral drugs, including the one he takes, reminds him what it was like to be HIV positive when the disease was not well understood and medications were difficult to obtain and less effective.

He thought those dark days were over.

Unlike the vast majority of gay and bisexual Latino men with HIV, he has received consistent treatment since his 2001 diagnosis. Back then, Pedro’s T-cell count was only 262. Today, the subtype of white blood cell that helps power his immune system stands at 970, a number he says is well within the healthy range for people living with HIV.

But in his community, Pedro’s story is the exception, not the rule.

In 2013, the last year for which data was available, Sacramento County recorded 132 new HIV diagnoses, of which black and Latino residents accounted for 71, more than half. (The state’s public health open data portal says that Sacramento County actually recorded 168 new HIV cases that year.)

African-Americans are especially overrepresented in AIDS cases locally—accounting for nearly a third of the 69 diagnoses in 2013—and at greater risk of dying from the virus. While death rates declined overall between 2006 and 2012 (the last year for which mortality rates were available), African-American deaths from HIV/AIDS reached a six-year high rate of 34 percent.

“As with many other health issues, the disparities we see with HIV infection continue to persist because the complex mix of environmental and economic factors that are at the root of these disparities continue to persist,” noted Staci Syas, Sacramento County’s HIV/STD prevention manager.

The CDC links disproportionately high infection rates for gay and bisexual men of color to poverty, race, stigma and trouble accessing health care, as well as a population of sexually active, HIV-positive men unaware of their status. The state estimates about 91 percent of Californians with HIV have been diagnosed, but that still leaves an estimated 12,638 who don’t know they’ve been infected.

Some researchers, including the National Institutes of Health and CDC, consider race, in combination with income and education levels, to be the best predictors of HIV infection risk.

“We know people of color have an unstable history of trust with providers, access to insurance, as well as cultural and religious barriers when seeking health care services,” said Christopher Packey, a health peer advocate with the Sacramento LGBT Community Center.

Packey, who has experience working with at-risk populations impacted by HIV, suggested the rise in AIDS cases for people living with HIV between 2006 and 2013 could be fallout from the 2009 market crash, when people lost their jobs and health insurance.

What isn’t a good predictor is promiscuity.

The CDC and the Office of National AIDS Policy have previously reported that gay and bisexual African-American and Latino men are not having more unprotected sexual encounters than their white counterparts. And yet, infection rates are going in opposite directions for two groups.

Previous CDC reports indicated that HIV rates declined for gay and bisexual white men by 18 percent between 2005 and 2014. During roughly the same period, HIV diagnoses climbed 24 percent for gay and bisexual Latino men, and 22 percent for African-American men who have sex with other men.

People of color make up more than 66 percent of new HIV infections in Sacramento County, according to the latest figures.

According to local data, Hispanics accounted for 27 percent of the county’s new HIV cases in 2013, while blacks accounted for 26.5 percent.

The county’s HIV/STD surveillance program currently operates an annual budget of $618,000, an amount that can fluctuate based on the number of prior-year cases. Syas explained that the county is unable to single-handedly reduce HIV infection rates for high-risk groups, and relies on its partnerships with community-based organizations that target high-risk populations.

Yet those groups are few and far between.

Clarmundo Sullivan is the executive director of Golden Rule Services, the only local HIV/AIDs outreach and education organization that primarily serves people of color.

Golden Rule conducts outreach and education activities at its Florin Road office and at local venues where people of color are likely to congregate socially. According to Sullivan, providing HIV testing and information at places like concerts, churches and bars permits at-risk populations to be tested in low-stress environments.

Social settings can also appeal to populations that may be more distrustful of medical providers, according to multiple studies, including a 2013 one on medical mistrust among HIV-infected African-Americans, published in the Journal of Psychology and Behavioral Science.

But Golden Rule is just one outfit, and Sullivan says he’s witnessed firsthand the persistence of racial disparities in local HIV outreach.

According to Sullivan, many gay and bisexual men of color navigate multiple stigmas in their daily lives, including race and class discrimination, internalized homophobia, poverty, lack of education, disproportionate contact with the criminal justice system and limited employment opportunities.

He says poverty can translate to a lack of transportation, for instance, which makes it more difficult to obtain prevention or treatment services.

And that makes a difference, Pedro says. “Even getting off your medication for a few days you can become re-exposed to different HIV strains,” he explained.

Sometimes it means getting no care at all.

According to an Office of Aids review of HIV medical care in the state, African-Americans who were diagnosed with HIV and alive at the end of 2014 were only 67 percent likely to obtain treatment and only 49 percent likely to suppress the virus, 13 percentage points lower than whites. The only ethnic group with lower treatment and suppression rates than African-Americans was American Indian/Alaska Native.

Since 1999, the federal government has funneled grant money into a program that’s supposed to deal with such disparities head-on. Last fiscal year, $52.2 million was awarded through the Minority AIDS Initiative to aid “racial and ethnic minorities who bear a disproportionate burden of HIV disease,” according to the U.S. Department of Health and Human Services.

And yet, a 2013 audit by the U.S. Government Accountability Office found that much of the initiative money is spent on redundant services already provided through core HIV/AIDS funding.

AHF President Weinstein complained that the initiative money “has largely gone unspent or been granted to organizations that do not have the cultural competence to reach these men.”

Speaking of cultural competence, medical providers have shown a documented lack of it when dealing with communities of color.

A number of studies have documented unconscious racism by physicians who serve patients of color, an issue that undermines quality health care for this population and reinforces the resistance some people of color have to seek routine medical care.

A study published in 2012 in the American Journal of Public Health found that 66 percent of the physicians surveyed held unconscious race biases—biases that impacted the quality of physician-patient interaction.

These biases directly affect the kind of care one receives, as evidenced by a 2002 report published by the Institute of Medicine, which determined that people of color received a lower standard of care than white patients for most diseases that were reviewed for comparison purposes.

Anecdotally, meanwhile, some HIV/AIDS service providers report that many medical providers are uncomfortable discussing sexual health.

“Providers don’t discuss [patients'] sexual life,” said Gustavo Trejo, Cares Community Health partner services coordinator. “Questions like, ‘When is the last time you had sex, the number of sexual partners'” are not asked.

Another barrier to seeking HIV testing and care in communities of color is the stigma associated with being perceived of as gay or bisexual, Packey noted.

Some studies, including a 2013 one on stigma and racial and ethnic HIV disparities published in American Psychologist, indicate that, culturally, there’s a disconnect between sexual behavior and sexual identify that leads many gay or bisexual men of color to lead closeted lives.

Thomas (not his real name) used to be one of those men. A Sacramento resident in his 50s, Thomas, who does not have HIV, describes himself as a black man first, and as gay second. But he didn’t always acknowledge the second part. Before he came out, there was a period when he struggled to square his sexuality with his religious beliefs.

“[There’s] homophobia in black churches,” he said. “Nobody wants to be ostracized by the only community that recognizes you. People are afraid and rightfully so. In order to embrace my gay self, I had to release some of my religious upbringing.”

In Pedro’s case, embracing his health status may have improved his access to post-diagnosis care.

“The critical piece is accepting your diagnosis,” he said. “Unfortunately, the cultural stigma for men of color, and Hispanic men, is a barrier to seeking a diagnosis and/or treatment.”