THE BLOG
11/26/2014 02:39 pm ET Updated Feb 02, 2016

Bridging the AIDS Generation Gap

"Don't trust anyone over 30!"

That was the mantra of my youth. And though I still feel that way at times, I had to admit long ago that I'm on the other side of that number. The gap is still there; it's always there. And nowhere does that divide seem wider than in the AIDS community.

My strongest memory of the 1980s: (mostly) men who seemed to waste away before my eyes, only to disappear, not to be seen again until their photo appeared in an obituary. Hysteria and hatred directed towards people who were - for God's sake - dying.

I began by attending events and dropping money into collection baskets. Eventually that wasn't enough, and I shifted my fundraising practice to mostly AIDS service organizations. I could raise a million dollars a year when that was real money. It never felt like it was enough because men and women around me were still dying the worst deaths imaginable.

Once I kept track of how many died: one a week for eleven weeks in a row. Then I stopped counting. Some people lost dozens, even hundreds of friends. More than one middle aged gay men has said he has no friends left from the 80s or 90s.

Fast forward a couple of decades. In general, an HIV diagnosis today is very different than an AIDS diagnosis thirty years ago. We have evolved from quack herbal remedies to effective antiretroviral cocktails. There is a growing community of long-time survivors. It's popular to say it's manageable. Getting infected now is viewed by many as "no big deal".

I have to admit, that's a hard thing for me to wrap my head around. Even those I know who are long-time survivors are managing with varying degrees of difficulty. Unpredictable health - even with miraculous drugs - plays havoc with job security and personal finances. Just because you found drugs that work for you today doesn't mean they always will. Nor does it mean that you'll be able to afford them. And we're only just now acknowledging the devastating emotional price paid by those who survived the early days of the epidemic: survivor guilt, grief, loneliness, social isolation, depression, suicide.

Just like my generation did not fully appreciate the horrors of the World Wars, now a younger generation wonders why we continue to look at AIDS so differently than they do. The gay papers aren't filled with dozens of obituaries; instead, full-page ads for the newest drugs. Living well with HIV is not only a goal, it's an assumption. Your life won't really change, will it?

The first time I saw How to Survive A Plague there were several young men in the audience. I wanted to lecture them at the end and prove that I was a crabby old lady: "Are you guys getting this yet?"

In their defense, yeah, I think they do get it. They're just tired of hearing us talk about "the way it used to be". It's no accident that a panel discussion at the New York Public Library, held in conjunction with their Why We Fight: Remembering AIDS Activism exhibit was titled "Your Nostalgia is Killing Me!" We stare at each other from opposites sides of this insurmountable divide and wonder "What the fuck's wrong with you?"

I, for one, am not nostalgic for the old days. But many of us feel a deep responsibility to those who died fighting for their lives - to share their stories and to keep doing whatever we can to ensure that the epidemic ends.

That doesn't mean that we have to be condescending or insulting. We don't have to lecture or scold. They're not our children. Well, maybe they are, but still...

We have to realize that younger people - especially young gay men - don't see the urgency because the lack of urgency is a great accomplishment. We should be thrilled that people aren't dying within weeks or months of a diagnosis.

Maybe younger people think a diagnosis is no big deal because they've been inundated with messages that proclaim "Live well with HIV!". That's what we wanted, isn't it? The chance to live long, productive lives after a diagnosis? Well, we've got that - along with less-toxic drugs and Truvada, a pill that can effectively prevent HIV transmission (yeah, I'm looking at you, Michael Weinstein).

We dreamed of these things, so why aren't we satisfied? What the hell else do we want?

Oh, yeah...an end. And you can't have an end to the epidemic until people stop getting infected. If they don't think a diagnosis will change their lives - and not for the better - then what are the chances?

I wish I had an answer.

I don't think we'll have one until we "pass the torch to a new generation" and have faith that they can craft a message that ends the epidemic. Young and old have to acknowledge the value of the other side, or our activism is wasted.

We live in a world today that was unimaginable thirty years ago: openly gay politicians, CEOs, actors and athletes. Marriage equality and anti-discrimination laws. It's amazing, isn't it?

I remember being in London on the first World AIDS Day, 1988. A collection for local organizations was taken up at the curtain call of the Sherlock Holmes play I attended. I coordinated a similar project in Chicago the following year. Since then, I've attended masses and other events on December 1. This year I'll do a book signing and panel discussion. Is it really possible that December 1st is the 27th World AIDS Day? I hope not, because it makes me feel old(er).

But it's as good a day as any for all of us to take a fresh look across that gap, and try to find a way to work together, so that World AIDS Day can someday, finally, be relegated to history.