Albert "Bobby" Tellez died of AIDS this year. His name was one of 11 etched on The Wall-Las Memorias Project monument marking World AIDS Day on Dec. 1, 2011.
The others died over the years, but only now, says Richard Zaldivar, Founder and Executive Director of The Wall, have the families of loved ones been able to face getting permission from the entire extended family to have the lost one's name engraved on the public art project dedicated to AIDS in Lincoln Park, East L.A.
The other names belong to Sgt. Robert "Baba" Marez, Laurence "Larry" Rosas, Derrick Cross, Craig Louis Brown, Rudy Flores, Robert F. Rendon, Hector Saucedo, Julio F. Argenal, Steven Michael Rhodes and Romeo B. Garcia. Some of their family members were among the more than 300 people who braved the cold in a heated tent commemorating Noche de las Memorias 2011.
The event honored the late Congressman Edward R. Roybal, who was among the first members of the United States Congress to initiate funding for HIV/AIDS programs in 1982, and The Wall's Associate Director Eddie Martinez, a grassroots leader at The Wall for 15 years, including spearheading the organization's important fight against crystal meth. Also on hand was Mario Perez, Director of the L.A. County Division of HIV and STD Programs (aka Office of AIDS Programs and Policy), who explained why this was such a historic, "game-changing" year in the fight against HIV/AIDS.
But before the policy came the stories from parents, lovers, and friends about the people behind those names.
Stepping off the stage and into the audience, Zaldivar asked if anyone wanted to share. He waited -- the fear of public speaking is magnified when you don't know if you can keep your heart from exploding in unstoppable tears. The grief was real and palpable, and just as difficult to express for the man who lost his lover 20 years ago as the woman who lost her son last month.
And yet grief or the understanding of that grief linked everyone together as if the mourning was a family affair. "We are intertwined into the fabric of the neighborhood," Zaldivar told Frontiers about why The Wall is such a signifcant community organization.
For about 14 minutes earlier that Thursday morning, President Barack Obama keynoted a major conference on HIV/AIDS commemorating World AIDS Day on the 30th anniversary of the first official recognition of HIV by the Centers for Disease Control. The theme was "The Beginning of the End of AIDS" -- with the focus primarily on the global impact of HIV/AIDS. But in his remarks, Obama announced his administration's recommitment to fighting the disease domestically, as well. He announced an additional $15 million for the Ryan White Program for HIV medical clinics. "We want to keep those doors open so they can keep saving lives," Obama said. He also pledged an additional $35 million for state AIDS drug assistance programs (ADAPs).
"The federal government can't do this alone, so I'm also calling on state governments and pharmaceutical companies and private foundations to do their part to help Americans get access to all the life-saving treatments," Obama said. "Now, as we go forward, we've got to keep refining our strategy so that we're saving as many lives as possible. We need to listen when the scientific community focuses on prevention. That's why, as a matter of policy, we're now investing in what works -- from medical procedures to promoting healthy behavior. ... We know that treatment is also prevention. And today we're setting a new target of helping 6 million people get treatment by the end of 2013. [Standing ovation.] That's 2 million more people than our original goal."
Two days earlier, on Nov. 29, the CDC issued a report that found that less than 30 percent of the 1.2 million Americans with HIV have their viral load under control.
Obama's speech was well-received, though he spoke several times about the history of the disease but only used the word "gay" once, without elaboration: "When new infections among young black gay men increase by nearly 50 percent in three years, we need to do more to show them that their lives matter."
"We are extremely gratified that President Obama has heeded our call to increase the number of people being treated around the world and will continue America's leadership in the fight against AIDS," said Michael Weinstein, President of AIDS Healthcare Foundation.
Just before he was honored by In the Meantime Men with the Founder's Award on Nov. 29, Mario Perez explained why "treatment as prevention" is such a huge shift in the treatment -- and funding -- of HIV programs. Perez has been on the front lines of HIV/AIDS advocacy for many years, ever since he was in college and "HIV was ravaging Oakland. I made a commitment to fight a public health crisis really to try to prevent something like the crack epidemic in the community I'd grown up in." Perez "gets it," says Zaldivar.
"HIV Prevention Trials Network 052 is sort of a game-changing science that came out this year," Perez told Frontiers. But there are also important new innovations at the CDC. The first is that the CDC updated its HIV incidence numbers. "Essentially, the CDC is getting more and more sophisticated at being able to differentiate from a new infection versus an old infection. If we can better quantify who is being recently infected, we can use that information to come up with better national estimates," Perez said.
Then in August, Perez said, "the CDC reported that essentially every group in the country has seen stable or declining rates of new HIV infection -- except 13-to-29-year-olds. There's a 21-percent increase in HIV incidence among 13-to-29-year-olds, and that's being pushed by roughly a 35-percent increase in new infections among gay men. And that's being pushed by a 48-percent increase in new infections among black MSM. Very troubling. A lot of groups in the country have seen decreases, but black gay men between 13 and 29 -- there's a 48 percent increase. Completely unacceptable state of affairs."
Why, since most young people have grown up on HIV prevention messages?
"The thing that we keep on seeing in the sciences is -- first and foremost -- when you compare the risk among black men compared to white men, black men actually have less risk: less sexual partners on average, not as much sex while under the influence, not higher rates of unpredicted anal intercourse," said Perez. "And so the things that you think may be at play are not at play. And so the risk profile is certainly not an issue. I think it boils down to -- there are communities where HIV is concentrated. So when we talk about viral load and how much virus is out there in the community, whether or not viral suppression is at a level that is acceptable, the fact is in L.A. we know that when we compare Latinos to African Americans to whites, among the folks for whom we have viral load data, viral load suppression among blacks is about 66 percent, compared to about 72 percent for everyone for whom we have viral load information. And so that's a relatively good number in L.A."
But those are numbers. What about the people? Why is there such a high rate of new infections?
"We have social, cultural, economic conditions that are stacked against black men," Perez said. "We have issues around homophobia that are driving under-diagnosis, that are impacting whether or not men get access to care. We have issues around violence, unemployment, people who are poor -- poverty is a predicator for HIV infection. Study after study has shown that. There are social and sexual networks where we need to do a better job of making sure that people are informed, educated, making smart decisions."
But we've been saying this for how many years? This is the 30th anniversary. What about all those billboards with HIV testing messages?
"Exactly, and it's very frustrating. It's not happening at a pace that is sufficient to make a meaningful difference," said Perez. "I'm not convinced that a billboard is sufficient to overcome the social and environmental realities of a black man. I can see that billboard 12 times a day. It doesn't give me a better shot at having a job. It doesn't make the stigma that I'm exposed to day-in and day-out go away. It's a billboard. And messages resonate at different levels with different folks. I think we have to figure out -- and quite frankly, this recession has created more of a gulf between the rich and poor in this country -- so there are more and more people who are disenfranchised, and it has exacerbated our ability to really sort of make some meaningful progress when it comes to infectious disease, poverty, health care access, employment -- any number of things. So it's complicated -- it's multi-layered, multifaceted. There isn't a magic bullet."
Perez explained the new scientific approach by which targeted treatment interventions with HIV-positives is more effective than blanketed prevention and education programs with HIV-negatives. The HIV Prevention Trials Network 052 is a multinational study started 23 years ago. But the "big news" happened just in the past five or 10 years and exploded on the scene this year.
"Essentially there were people enrolled in two different groups -- a randomized control trial -- with heterosexual serodiscordant couples, for the most part," Perez explained. "So either the man was positive and the woman negative or the woman positive, man negative. Group one was an immediate treatment group. Group two was a delayed treatment group. Basically, they were looking at two things: they wanted to know whether or not there was a difference in transmission from the positive partner to the negative partner among people who are on treatment now versus the people who waited to get on treatment once their T-cells hit 350, the treatment delay group.
"After a few years of study, what they showed was that if you started treatment now -- when your T-cells were 550, in that neighborhood, there was a 96-percent reduction in transmission, compared to the group of folks who waited to start treatment until they had 350 T-cells. So the study leader said, 'Time out. We cannot continue. Everyone needs to be on treatment so that we can make sure that the negative partners do not seroconvert.' That was the big headline this summer: 96-percent reduction in transmission if the person starts treatment early, as opposed to delaying treatment. It was in the New England Journal of Medicine with lead author Myron Cohen.
"The second thing the study looked at is -- from a purely clinical standpoint -- among the people who start treatment at 350 T-cells, if we put them on treatment, can we get those T-cells back up to 600 or 700? And what they've shown is that they cannot get the T-cell rebound past 500. So from an immune restoration standpoint, delaying treatment also minimizes our ability to get the immune system to rebound to a state where we want it to be. And so there are some clinical implications to starting treatment early. So we have this study saying treatment as prevention works -- clearly, 96-percent reduction is meaningful.
"And the third thing we've got is this guy named Gardner out of the Denver Public Health Department, who introduces this concept called 'Treatment Cascade.' Basically, if you take 1.2 million Americans who have HIV, and you see how many of them are diagnosed and not diagnosed, and of the people who are diagnosed, how many are linked to care, and of the people who are linked to care, what proportion are taking treatment, and out of the people who are taking treatment, what proportion are virally suppressed, at the end of the equation, only 19 percent of Americans who have HIV appear to be virally suppressed, based on his data.
"So we've done that in L.A., and our estimate is about 42 percent of people in L.A. County are virally suppressed -- a little better than the national numbers, but still not where we want it to be, because of course we want 85 to 95 percent of people to be virally suppressed. Because the better job we do suppressing viral loads, the less new HIV infections," Perez said.
"We've begun to map out basically that cascade and identify the interventions. This is how we're going to try to change the conversation in L.A. We want providers to understand -- we want people to play to their strengths -- and help us move people along from being undiagnosed to diagnosed, diagnosed but not in care, to in care."
Sean Strub disagrees with the change. "People should be given the option to take drugs to reduce their chance of transmitting to others, but to recommend treatment for people in the absence of conclusive science that it will, on average, provide a greater net benefit than harm, is unethical," he wrote in an email. "We know that some people with high CD4 counts can go years and years, some even decades, without going on treatment and suffering the cumulative toxicities of treatment.
'Treatment as prevention' is an 'experiment,'" Strub said. "We do not know whether it will work or how it might change behaviors that could mitigate any preventive effect. People with high CD4 counts typically have much lower viral loads and are less infectious. They may not be as motivated to be on treatment and less adherent, facilitating development of resistant strains. ... This announcement has nothing to do with the health of people with HIV -- it is about rendering us noninfectious, it is about public health officials spraying us with Raid so we're not crawling all over the cookies.
"Stigma is what spreads this disease," Strub noted. "It is what makes people reluctant to get tested, reluctant to access treatment, and reluctant to disclose their status. One of the major reasons people don't test is because they distrust the health care system and public health policies; this decision to coerce people into treatment with incomplete or misleading information is going to add to that mistrust. It is a very sad day for people with HIV."
Jeffrey King, Executive Director of In the Meantime Men, brought up the shift in the conversation with Perez, noting that it is confusing for many that AIDS advocates are now talking about "intervention" and not "prevention."
"There is a toolbox of interventions that we have in place in L.A. for people who are quite frankly high-risk HIV-negative," Perez said. "But we can't target everyone in L.A., regardless of risk. Targeting 180,000 who have no risk for HIV is not the best use of public resources. What we have not been able to effectively quantify is the reach and effectiveness of programs designed to engage HIV-negative folks year after year after year. And we need to do a better job of knowing from one year to the next -- if we're serving a group of 180 gay men in four zip codes, were we able to keep them negative for an additional year and an additional year and an additional year? Or did a third seroconvert? We don't have bio-markers telling us from year to year whether or not that intervention in fact had an effect on reducing the seroconversions. What we do know is that the reach of individual interventions is small.
"Some of us are talking about prevention every single day of the year," said Perez. "What we've done is we've become more specific about the type of prevention we're talking about. Is it a bio-medical intervention designed to prevent HIV? Is it treatment to reduce viral load to prevent forward transmission of HIV under that prevention rubric? Is it getting people diagnosed -- because we also know that once people are diagnosed, they change their behavior to not put others at risk. That's a prevention-intervention in itself. But it's all under the prevention umbrella. The end goal is to make sure we don't have two or three thousand new infections in L.A. every year."
But the shift also means a change in the allocation of resources whereby funding will go to AIDS agencies and programs with an HIV testing component and not to organizational capacity building or programs geared toward HIV-negatives. At the In the Meantime Men community meeting of black gay men, they will be launching an HIV mobile testing van, and he wanted to know how best to reach out to black gay men -- especially the dramatically impacted young black gay men. What became obvious was how important the meeting itself was for sharing personal stories about the difficulty of coming out as HIV-positive.
"I appreciate what you shared about us coming out and saying, 'I'm positive' and openly sharing that," King said after one young man shared. "Magic Johnson told me that we need a black gay Elton John because he couldn't properly represent black gay men. One of the things he was concerned about was that black gay men were dealing with their own internalized homophobia, and as a result, he could speak for the black community, but he can't speak for black gay men. So does anybody really feel that they have the answer to how do we reduce HIV infections in the black gay community?
"People are answering that question for you -- by the way -- and it's because I don't believe that we have adequately responded to that question for ourselves. Maybe we don't feel that we're qualified to answer that question for ourselves. We need to get to that level of honesty about what we're talking about."
Some talked about the need to see real people with HIV who looked like them who could answer their questions at the test site and provide resources.
Another man asked, "Recognizing that sex can be considered a dysfunction, and recognizing that we need to go where people are, and [that] stigma is an issue for getting people tested -- is it really that important that people get tested?"
"I think it's important because you just need to know. Since there's so much out there -- if you get tested, if you catch it, I'm assuming it can be treated and you can live a happy long life," responded one man who said he was caught up in a good conversation by HIV testers in West Hollywood -- but didn't get tested in the end.
"I think knowledge is huge," said another man. "Our sexual networks are much more concentrated -- we have sex with each other. So the potential of one person having it turning into five or six people having it is much more likely when you have smaller sexual networks," which he later called "a hotbed for infection."
Another man thought testing was important but was turned off by the "interrogation process" and the guilt and fear of having to relive some things about which you might be ashamed of -- even if you only did it once. He thought more attention should be paid to protection and safer sex.
"When you get tested, they always ask you the same questions: How do you think HIV is transmitted? What bodily fluids," the young man said. "There might have been a time when I did not think about that, and I have to go relive it, and -- it all boils down to fear."
King was persistent: "How do we get people to test? Its not like selling candy -- it's not something people are necessarily running to. How do we make testing more acceptable? How do we make it more normal for people? I think it's important that we ask the question among ourselves."
But if the funding is shifted to only support groups that do HIV testing effectively -- what will become of the community groups such as In the Meantime and The Wall-Las Memorias, where people feel safe to inch out as HIV-positive? If stigma prevents people from getting tested, how else but through small community groups will stigma be confronted and resolved? New era with old problems.
A version of this story first appeared in Frontiers in LA magazine.
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