BY MICHAEL LOUELLA
First published by defeatHIV
From the very beginning, I was warned about a word like cure.
I was preparing to teach a class at Gay City University on the latest scientific developments motivating the thoughts behind and the investigations into potential cures for HIV.
I remember I was excited to have found online the first pics of the mysterious “Berlin Patient’, who stepped out of years of anonymity into a name: Timothy Brown. I remember thinking it was a minor coup to add his name and face to my PowerPoint presentation. Somehow, becoming Timothy Brown made the story of his cure more real.
My friend must have seen all my excitement about this and about the chance to talk about the current research into a cure.He cast me a sideways glance that only a queen worthy of such a title can cast and said with some foreboding:
“Like all other four-letter words, you gotta watch out for a word like cure.”
It’s taken me three years to come to appreciate, if not always follow, his advice.
My friend’s admonishment stumped me.
Was he really advising me not to use a word like cure in a presentation about the very same subject?
Should I take his comments to mean I needed to better define what we mean when we say a word like cure, or what we think when we hear it?
What could be wrong with a word like cure, which to me only sounded so right?
Well, to answer that, google “cure for HIV” and see how long it takes for you to find a page like howtocurehiv.com whose opening salvo reads:
How To Cure HIV – in 3 Days, No Matter What! FREE
(Scientifically proven, trusted and recommended even if you’ve stuggled with HIV for years and your doctors lost all hope!)
Read on to learn about your amazing Free Trial opportunity…
No, we might shake our heads at such foolishness. We might even point to the spelling error ‘stuggled’ as some sort of secondary proof that such claims are nonsense.
Doctor’s Have Proven How To Cure HIV
Click here to Cure HIV now!
The history of HIV is peppered with such claims, and when, such as the ones above, they seek to make money from people living with HIV by peddling lies that prey on hope it is only just to call such actions evil.
Sometimes I look up these sites to remind myself how powerful a word like cure can be. I scan these pages online and I witness how a good word could be used as bait.
They leave me heartbroken, these online peddlers of snake oil cures for HIV.
But these shadows in the history of HIV must be remembered if we are to effectively tell the truth about a word like cure.
It happened again. That four-letter word came up unexpectedly.
In reply to the mention of what I do for work, a guy I had been chatting with online told me that a cure for HIV is ‘just around the corner.’
I replied: “Nope. Exact opposite.”
“Oh, I keep seeing all my friends posting stuff* on Facebook about how it’ll be cured soon.”
“Years and years away, but on the road with scientific basis.”
I boiled down this phrase after the umpteenth time of being online and suddenly confronting the need to do damage control.
Soon after I began talking about an HIV cure with any willing audience, I found the need for answers that would communicate the truth quickly like a text or a tweet or a soundbite.
Of course, I can never leave things to one terse reply, and so found that I just had to write three complete sentences about the media misrepresentations that seem like the adult versions of the childhood games known as Telephone and Whisper Down The Lane.
I also like to lead people to sources to see for themselves the evidence of anything I say, and so even offered to send this guy a few links.
“Eh….I’ll take your word for it.”
And with that, our 7-line long online conversation about HIV—which was exhaustive in comparison to most of my online conversations about HIV—just kind of stopped, ended not with a bang but a few whimpers.
And I sat there staring at my inbox, wondering in the end how much anyone really cares about another four-letter word like cure.
I know I shouldn’t feel this way.
I do know from firsthand experience that some people care an awful lot about a cure for HIV.
Some people get so excited to hear about the scientific basis for investigations into a possible path toward an HIV cure. That these investigations are exploring 8-10 different possibilities is just more icing on an already sweet, moist cake for these folks.
Now, before you think that such conversations are easy, or that complicating emotions don’t arise even among people who are excited about federally funded research into potential cures, let me point out that in such conversations, there is often a soft counterpoint.
Sometimes this thought is shared aloud with me, and I get to concur without needing to say much more than an amen.
More often it remains on their tongue like a silent prayer, afraid to fly up to heaven and stake a claim, knowing how fickle fate can be despite the fervor of our wanting.
It’s with these folks who hope beyond hope and in spite of foolishness that I feel a bond.
They want to see a word like cure made real.
But it is the hush around the words that follow in a soft counterpoint that always break my heart.
In my lifetime.
There are people who are happy to believe a cure for HIV is ‘just around the corner.’
Faulty journalism like the recent story out of Denmark does not make talking about a word like cure with such people any easier.
In fact, if you take people down that rabbit hole which starts with a university’s plug for the cure research going on within its hallowed halls being lifted by an online UK paper known for printing incorrect obituaries that have led even the New York Times astray and which ends in a wonderland where a cure is just around the corner, they tend to become less happy.
In fact, they often become more distrustful, more resentful.
I marvel at the craters such bad information leaves behind in the thoughts of many people.
Do they stop thinking that HIV is a global crisis? Do they stop giving money to HIV agencies or volunteering their time in clinical research?
I wonder what the conspiracy junkies who already believe a cure exists but is being kept from some of us by the federal government make of such faulty news?
Does this immediately strengthen their belief that a cure exists but is being withheld? Or does it secure this myth only after months pass and we still have no cure to point to?
I wonder how such wrong news about a word like cure might soften into pudding the mind of a young gay man who already thinks that he doesn’t need to worry about HIV, that it isn’t a big deal anymore, that people aren’t dying from it, that you can pop your pill once a day and be just fine.
Prevention is barely on the radar of such men, most of whom have a poor grasp of the nature of an epidemic that keeps all of them disproportionately at risk for becoming infected with HIV.
How many ‘just around the corner’ headlines will it take to lay to rest completely whatever prevention strategies might remain in the minds of these men?
And when I consider the fatigue gay men exhibit after 30+ years of shouldering most of the blame and most of the burden for the HIV epidemic, such wrongheaded headlines begin to sound like nails hammered into the lid of a coffin.
We need to begin talking with each other about a word like cure. We need to learn how to unpack all its punches.
As a community begins to form around a cure research group like defeatHIV, we need to remember a word like cure has many lessons, and these lessons will only be learned by talking with each other.
We need our talk to be truthful, honest and real, and we need it to be free enough to reach others wherever they might be at.
We need to deepen our understanding of the science, what has been accomplished, what yet remains for us to do, and just how long it can take science to any of it, let alone all of it.
We need to deepen our respect for our communities heavily affected and infected by HIV, and for the context of people’s lives that might change the way they hear any talk about a cure.
We need to strengthen each other in a commitment to learn as much as we can and share this with our friends and neighbors, figuring out ways to open up our capacity for awe and wonder without losing complexity.
We need to consider the power over the heart a word like cure has, and to take much care not to inflate hopes, but careful as well not to deflate them.
Want to know what was on the very first slide of my very first presentation, the one with Timothy Brown’s name and photo, the one that cause my friend the queen to issue his dire warning?
That slide had one word: CURE
I started off by acknowledging that four-letter word, giving it my voice and breath.
To this day I can think of no better way to begin to talk about a word like cure.
We need a cure for HIV.
And that cure for HIV needs us.
That cure for HIV needs you.
So let’s start talking……
Despite my use of direct quotes, I changed this word to a version more polite, despite the poet in me seeing in his original word an unintentional commentary on the newsworthiness of his friends’ FB posts.