Activist at Work

Prescription for Progress: Activist focuses on reducing the stigma associated with HIV/AIDS

Rx for Progress: Activist focuses on reducing stigma of HIV/AIDS

Sean Strub World AIDS Day luncheon
Sean Strub. Courtesy photo

When Sean Strub recalls his social circle of the late '80s and '90s, it's heartbreaking. 

"We were going to more memorial services than birthday parties, and we were losing so many people, you didn’t have time to grieve. 'Joey' would die on Monday, and the service would be on Friday, and by the next Monday, you know, 'Billy,' was ill. You kind of compartmentalized a lot of that grief, and it got to a point – we used to talk about it – we didn’t even cry anymore.

"We very rarely cried when someone was dying. We thought something was wrong with us .... It wasn't until years later that a lot of us realized it was a defense mechanism."

Strub was in his 20s and living with HIV at a time when the diagnosis usually meant about two years remained before death. As a politically active gay man, he found his efforts tightly focused: He channeled his natural gift for entrepreneurship into helping others who were living with HIV. At one point, when he says he was "very, very sick," he made a calculated business decision that would create a legacy. 

"I’m six-foot-one, and one point I weighed about 126 pounds, and a viral load of 3.3 million, and Kaposis sarcoma all over my face, and body, and lungs. And I viaticated –" (A Viatical settlement is the selling of one's life insurance policy to a third party that will collect on the proceeds when the original policy holder dies.) "I sold my life insurance to help get the money I needed to start POZ Magazine," Strub says. He recovered, survived, and the magazine thrived. After running POZ for 10 years, Strub sold it, but retains a position as editorial advisor. POZ continues to be published and is one of the leading independent sources of information for people living with HIV/AIDS. 

Decades after the panic-stricken early days of the AIDS epidemic in America, Strub recalls the ups and downs of the era in his new book, Body Counts: A Memoir of Politics, AIDS, Sex and Survival. It's a cathartic first-hand account that Strub, who was diagnosed in 1985 with HIV, calls "deferred grieving."

Eloquent and articulate, Strub has been tapped to be the keynote speaker at this year's World AIDS Day Luncheon, presented by AIDS Foundation Houston, Dec. 1 at Hilton Houston Post Oak. This year's luncheon, co-chaired by Houston Public Media host Ernie Manouse and Boulevard Realty owner Bill Baldwin, carries the tagline "Getting to Zero." The 2016 Shelby Hodge Vision Award will be awarded to the Houston Methodist Research Institute Department of Nanomedicine and Alessandro Grattoni for his work on a refillable implant that administers Pre-Exposure Prophylaxis (PrEP) drugs to people at risk of HIV exposure. 

Strub's keynote speech will address HIV/AIDS-related stigma.

"Stigma is a far bigger obstacle to ending the epidemic than generally understood. And I don’t think a lot of the efforts and programs to combat stigma are as effective as we’d like them to be, so I advocate looking into those things in kind of a different and fresh way," he says in a CultureMap interview.

Body Counts will be available, and a book signing by the author at Brazos Bookstore will follow immediately after the luncheon. 

Decriminalizing HIV/AIDS

These days, Strub is focused on decriminalizing HIV/AIDS and reducing the stigma associated with the disease. He notes that many states continue to keep anti-HIV laws on the books, and that poses some serious problems. In one case in Dallas, an HIV+ man was sentenced to 35 years in prison for spitting at a police officer. (The Centers for Disease Control and Prevention has reported that "contact with saliva, tears or sweat has never been shown to result in transmission of H.I.V.") People who have disclosed their HIV status to their partners have been met with child custody battles, loss of housing, or worse

Meanwhile, failure to disclose one's HIV status could mean prison time. It's a touchy subject for people, and Strub acknowledges this. 

"This is just very difficult work. Because if you ask anybody if it should be a crime for someone with HIV not to disclose that before they have sex, most people say yeah, that’s wrong," Strub says.

But criminalizing the virus may also be putting people at unnecessary risk. While the intention is to reduce HIV transmission, Strub says these laws may actually be making the epidemic worse.

"For one, [people are] afraid to get tested. You can’t be prosecuted if you don’t know you’re positive," Strub says. "But even beyond discouraging people from getting tested, those who do test positive, who are aware of these criminalization statutes, they’re less likely to cooperate with and trust traditional public health prevention measures, like taking their medication and things like this." 

Besides that, Strub points out that such laws effectively create "a viral underclass in the law." Strub's efforts as director of the SERO Project are to get the states' laws to reflect contemporary science instead of stereotypes and fears.

Remains optimistic

And so what about our new Commander-in-Chief? A Trump presidency is a bit scary, to be honest.

"We have seen the most base forces of racism and misogyny and anti-Semitism and homophobia unleashed. We knew they were there — God knows we knew they were there  — but we’ve never seen anything like this before. It’s been kind of encouraged by leadership at this level. So this is unchartered territory," Strub says. Nevertheless, he remains optimistic. The support for society's disenfranchised communities, Strub notes, is more robust. 

"We’re not going back in the closet, and we have more a community infrastructure than we’ve ever had before. So we’re not starting from scratch. It’s not like we have no weapons in our arsenal to fight back. This is going to accelerate some important transitions and evolutions – I think we are moving out of an era of identity politics. And I say that not to disparage identity politics; I think they’re a very necessary kind of stage for all sorts of movements. But we are in a time when our survival – and not to qualify it – our survival is dependent on learning to broaden our alliances, to show up for each other's work."