Guest Opinion: B.A.R.'s 'No obits' turns 20
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If you had asked me when I wrote the "No obits" article in the Bay Area Reporter in 1998, I'm not sure I would have been able to say I would be around on its 20th anniversary, which is Monday, August 13. I had only just found out about my own HIV infection four months before the article was published. I was asked by our editor at the time, the late Mike Salinas, to write the piece because of my experiences in San Francisco, my history having worked at an AIDS nonprofit, and (especially) my recent HIV diagnosis. (I was not the best writer at the paper; she is now editor.)
That the article had such an impact at the time was testimony to the exceptional fatigue permeating a community swamped by the unrelenting assault of the virus. Just about two years after the announcement of protease inhibitors as a treatment option and the promise they had shown in their short history, there was still an overwhelming sense of dread, apprehension, and incertitude. There wasn't much information on the long-term effectiveness or side effects of these new drugs which, given experience with other treatments that weren't sustainable, caused reasonable worry about their enduring success.
So, it seemed to mean something that August 20 years ago to have reached the "No obits" milestone when, after years of relentless obituaries of people stolen by the virus, none were submitted to the B.A.R. that week. Or, at the least, it felt reasonable to lay down a marker of hopefulness, a stepping-stone that might give the community a foothold above the seeming incessant surging of grief.
Of course, HIV remains a persistent scourge with nearly 40,000 new infections in the U.S. annually, nearly 2 million worldwide with 1 million deaths. Too many people who might benefit still do not have today's better versions of treatments first heralded more than 20 years ago. Incomprehensibly, we still have to combat the repugnant stench of discrimination, shame, and stigma.
So, as proposed in the original article, did a new reality take hold, and did the community enter "a new era of the epidemic?" On one hand, obviously yes, of course, yet we must acknowledge that two decades in, this "newness" still doesn't reach all affected by the virus. And, as if to remind us all that the fight is not over until there are no new infections, stigma, or barriers to treatment - dare we say, until this "new era" leads to a cure - we only need look to the unexpected dismantling of the Presidential Advisory Council on HIV/AIDS in 2017 and the recent report from UNAIDS suggesting recent "partial" successes are "giving way to complacency" - examples of how quickly progress can be challenged. Silence still Equals Death.
I am fortunate to live the promise of this new era. Living openly HIV-positive with reasonably great health, with some side effects, on various new treatments, as they have evolved, speaks to some of the promise we hoped the marking of "No obits" might be ushering. In fact, I (and some others) unexpectedly started showing negative results on the two most standard tests for HIV at the time (ELISA & Western Blot) - not a true measure of my infection but considered an indication of the powerful potential of the medicines to fight the virus.
As well as I live with HIV, I feel compelled to tell younger people that I'd still rather be negative than positive, and they should practice safer behaviors to avoid becoming infected. But I continue to resist pressures of shame or stigma for living loud and proud with HIV. The pills I must take are omnipresent with side effects that feel cumulative. And, of course, there are the blasted reservoirs of virus that continue to elude elimination, meaning, despite living "undetectable," I will have a resurgence of measurable virus if I stop treatment. More uncertainty.
The frontier of research continues to offer great hope and discoveries that contribute to an overall understanding of diseases in the human body. I am thrilled to have been part of a long-term, ongoing, multi-pronged study at UCSF, originally through the Options Project, which has morphed into the broad SCOPE study and cure initiative. (One of several innovative approaches.) Research continues to expand and take on more diverse perspectives trying to imagine a "brave new world" where HIV is better controlled or eliminated.
I was honored to write "No obits" and see it have such a hopeful impact on so many - a powerful example of community journalism that the B.A.R. continues. The HIV epidemic continues to be sprawling, complex, and insidious, but I have learned over my years living with the epidemic and, for 20 years, with my own HIV infection, that we should relish victories, even small ones, and continue to look for progress to a better future.
Timothy Rodrigues is a certified California naturalist, still living well with HIV, healthy, splitting his time between Sonoma County and San Francisco, and still trying to understand what it means to live "mindfully."