Entering a study of long-term nonprogressors, LeRoy Whitfield finds it's not just his blood that's under the microscope
Even using the full extent of her 99-cent-per-minute powers, TV psychic Ms. Cleo couldn't have predicted that my medical profile would pique the interest of one of the nation's most esteemed AIDS researchers. But to tell the truth, I knew that there was something about my numbers for years. Take 10,000, for example, my current viral load. Or 800, the number of T cells measured at my last clinic visit. Now consider that I'm 12 years' positive and have never popped AIDS meds.
Hunched across from me at his Harvard office, Dr. Bruce Walker has stopped short of shakin' a Magic 8-Ball to understand specimens like me -- referred to in AIDSpeak as long-term nonprogressors (LTNPs). In an inspired attempt to explain why I've fared well with HIV, doc takes to a nearby drawing board to break down his theory, but I'm Hooked On Phonics and can barely grasp his high science. From what I could glean, he suspects that I'm thriving either because my killer T cells are working overtime against HIV -- hell-bent on viral vengeance -- or that my unusual HIV strain, which flags itself to be attacked, is self-defeating. In any case, against the AIDS norm, he says, LTNPs are like public appearances by the King of Pop -- slightly freakish and rare.
On a visit to my sweet home Chicago, my grandmother -- Big Mama -- in her infinite matriarchal wisdom balks at what she calls Walker's science fiction. Never mind that in 1989 he discovered killer T cells and pioneers the field of study. Or that he's noted a correlation of strong killer-T cell responses in every LTNP that he's observed so far. She pulls me close and whispers the real key to my salvation: I'm saved, she says, protected by the blood of Jesus. (Well, hallelujah.)
Whatever the reason for my good health, I've noticed that some of my fellow HIV-havin', support group-attendin' brethren are often suspicious of my claims, envious or both. (Honestly, is it me, or are some folks just bent on hating instead of congratulating?) After a recent support group meeting, one brother, for example, spit pure venom when introducing me to another: "This is LeRoy," he seethed, then spewed, "he's gonna live forever."
That kind of heat is hard not to take personally, but I understand where it stems from; some brothers have suffered more pain and fear living with HIV than I ever have. But, there are certainly no guarantees on this LTNP jalopy that says six months from now my other shoe won't drop. For now, I'm still taking one day at a time, although so far no one -- Dr. Walker included -- can explain with certainty why I've never had as so much as an opportunistic infection.
At my support group, division among disease progress runs deep. Wet-behind-the-ears HIVers reiterate to others (and quietly to themselves) how many T cells they still have in order to distance themselves from (Perish the thought!)
having AIDS. War-torn AIDS veterans condescend to HIV newbies with an all-knowing tone: "It's an AIDS thing, you wouldn't understand." And forbid you confuse a member of one subgroup with the other -- you'd suffer worse backlash than if you mistook a Puerto Rican for a Mexican.
So why subject myself to the madness? Quiet as it's kept, I may move on to a more exclusive support group in Boston. Convened by Walker for LTNPs only, its served up social mixer-style and is also an incentive for his lab rats to update their blood work. The membership has its privileges, but also a price. To be eligible, you've gotta come with over 500 CD4s, a low viral load, and be asymptomatic and treatment naïve.
I'm ready to pack for Camp Eternity, but suddenly take pause. Schmoozing among my new HIV friends, I wonder, what will we possibly talk about -- how good we all have it? No longer a big fish in a small pond, will I find myself jealous of Walker's LTNP poster child, who's virus has been undetectable since he tested positive in 1981? Will I be continuously prompted, poked and probed, opening my veins to fill a bottomless blood vial for the common good? And what if Walker is, well, wrong?
Uh, on second thought, maybe I should stick to my current long-term health plan -- better nutrition, good exercise and a low stress level -- which I believe has helped me to live this long. Walker may be on to something that could mean better treatment for HIVers, but I'd rather cheer him from the sideline if it means trading my own fragile self-empowered state for his cherished theory. That may seem middle-of-the-road, but it's exactly where my tent is pitched. And I hope to remain here for years to come.