AIDS: Everything Old is New Again

“Those who cannot remember the past are condemned to repeat it.” – George Santayana

 There is perhaps no more perfect quote to describe the current state of the AIDS epidemic. A close second would be “out of sight, out of mind.”

Last week I found myself at a fundraiser for the West Hollywood Public Library Foundation and the proposed AIDS memorial. It was a benefit screening of How to Survive A Plague, the Academy-Award nominated and much-honored 2012 documentary about ACT UP New York and the AIDS epidemic.

I spent time with Jim Eigo, a founder of ACT UP NY, who I’d met at their meeting in New York earlier in the month. He participated in a panel discussion that followed the film.

What made me sad – and angry – was that the second book in my series (Friend Grief and AIDS: Thirty Years of Burying Our Friends) is so relevant today. When I started writing it, I thought it would be more of a reflection of my time working in the AIDS community in Chicago in the late 80’s and early 90’s. Boy, was I wrong.

Between the ACT UP meeting and the panel discussion, I felt like I was in a time warp. What year is this, really, when we’re talking about the rising number of infections in young gay men? What year is this, really, when we’re talking about the critical need to lobby our legislators, at all levels of government? What year is this, really, when we’re talking about the threat of AIDS at all?

That time warp is why I’m angry all over again. There are differences, big differences between the early 1980’s and now. We didn’t know what AIDS was (or what to call it), how it was transmitted, how to treat it. Now we know, but it’s still here, still a serious threat, no matter what you’ve been told.

Thanks to medical advances, people really do believe an AIDS diagnosis is no big deal – maybe even an advantage in certain situations. You still think only gay men are at risk? How about women over 50: “I can’t get pregnant, I don’t need a condom.” The truth is still what it was 30 years ago: everyone is at risk.

So while I’m gratified by the early positive reactions to my book, I’m also distressed by the fact that AIDS is still here, still without a cure, still without a vaccine. I’ve lost too many to this equal-opportunity virus; maybe you have, too.

I now find myself part of a second wave of activism, one which is sadly necessary. I hope you’ll join me, so you don’t find yourself grieving for a friend (or two or ten or a hundred) who died from AIDS.

Friend Grief and AIDS

I always knew that one of the books in the Friend Grief series would address the AIDS epidemic. Like many who lived through those early years, it was something that shaped my life. It was, I believe, close to the experience of being in in a war. At least, that’s how it felt.

I wasn’t sure what my focus would be for the book. There are already many incredible books about AIDS and ACT UP and the Names Project and other aspects of that time. But I quickly realized that the role friends played, especially in the early years, was critical.

We knew we were needed, that we were depended upon to take up the slack for disapproving families and an indifferent government. But writing this book revealed the stark truth that friends were – and still are – responsible for turning the tide. Friends were caregivers, advocates and much, much more. Some famous, most anonymous, all were people whose dedication meant the difference between life and death.

Friend Grief and AIDS: Thirty Years of Burying Our Friends is now available as an ebook. Like the first book in the series, it’s not long. If you’re of a certain age, you’ll find yourself nodding in remembrance. If you’re younger, you may be shocked by what you read, but I guarantee, it’s all true.

AIDS is not over, not by a long shot. The numbers and attitudes may shock you, but don’t let them cause you to turn away. Instead, let them serve as a wake-up call: to renew your efforts to educate and advocate so that a real cure can someday be found. And let it also remind you to keep your friends close.

Here’s an excerpt:

We are a very judgmental society, at least here in the US, and that mindset often permeates even our own families. It wasn’t just the disease itself that led families to turn their backs. It was the added stigma of homosexuality (or prostitution or drug abuse). The diagnosis was considered a reflection on the family, a bad one. So many felt justified in abandoning one of their own.

We are quicker to blame victims of disease than the disease itself. We believe ourselves superior in some way to people who are sick because we judge them to be stupid, weak or morally deficient. We feel especially good about ourselves when we can quote Bible verses or local laws to support our position.

Different diseases carry their own stigma. Diagnosed with lung cancer? Well, you shouldn’t have smoked. Diagnosed with diabetes or heart disease? Well, you should’ve lost weight. Diagnosed with AIDS? Oh, where to begin with the criticism?

As Elinor Burkett put it so eloquently in The Gravest Show on Earth: America in the Age of AIDS, “AIDS never got a chance to be simply a disease.”

This was different, from the start. This was something new and mysterious and terrifying.

And friends made all the difference.

 

Available now on Kobo, Amazon, IndieBound and Barnes & Noble

World AIDS Day 2012

Despite the fact that my production schedule has been blown to hell, this week I managed to finish the first draft of the second book in the Friend Grief series: Friend Grief and AIDS: Thirty Years of Burying Our Friends.

It’s not the book I thought it was going to be. Whether it is any good at what it is remains to be seen.

But what came up time and again – as I re-read classic books by Randy Shilts and Larry Kramer and watched new documentaries on the history of ACT UP – was the frustration and anger that still exists today. And it exists because AIDS still exists.

Even the victories have unintended consequences. The AIDS cocktail of drugs that has saved so many? Can you afford it? Can you tolerate the combination of drugs? Can you even get it? If you’re one of the 69% of those living with HIV/AIDS, that means you live in sub-Saharan Africa, so the answer to these questions is ‘probably not’.

Do you live in a country that considers AIDS a health crisis? Despite the focus on it here in the US, there has been – due to medical advances – a change in thinking that is both heartening and disturbing. AIDS is now considered a chronic disease – like diabetes: something that is treatable, if not curable. Getting infected is “no big deal”. People even get infected deliberately.

But it is a big deal. Thirty-one years into the epidemic 30 million people have died, and another 30 million live with AIDS. In the US, 1.2 million people live with HIV/AIDS…but 230,000 don’t know it because they haven’t been tested.

We’ve come a long way, but we’re not done yet. People are infected every day – sometimes deliberately, sometimes unknowingly. At the beginning of the fourth decade of the epidemic, superstitions still abound, including one that insists that sex with a virgin will cure you of AIDS.

If you want to know more about AIDS – both here and around the world – here are some organizations that will help.

Elton John AIDS Foundation

US Government AIDS website

Joint UN Programme on HIV/AIDS

Centers for Disease Control

And take a minute tomorrow, December 1 – World AIDS Day – to remember those who died and those who have fought for 31 years to wipe AIDS off the planet.

 

"How to Survive a Plague"

Art by Keith Haring

There’s a moment near the end of How to Survive a Plague, the powerful new documentary about the AIDS epidemic, and specifically, the role of ACT-UP in changing the way drugs are tested and made available in the US.

There’s a contentious meeting of ACT-UP New York going on, and playwright/activist Larry Kramer is shown, his face tightening in frustration. Finally he explodes: “Plague! We’re living in a plague! Listen to yourselves!”

Living through the beginnings of the AIDS epidemic was like living in a plague, or in a war, because it was both: a health crisis that became a desperate war to save lives.

The truly remarkable thing to me about this film is that it exists at all. Much of it is archival footage from 1986-1995, shot by members of ACT-UP.

So you actually see the demonstrators lying prostrate in the center aisle of St. Patrick’s Cathedral in New York, protesting the cardinal’s condemnation of the use of condoms to prevent the spread of AIDS.

You see the unfurling of the Names Project AIDS Memorial Quilt, covering the National Mall in Washington for the first time.

You see speakers at the International AIDS Conferences in San Francisco and Montreal, as well as those at NIH meetings, interrupted by chanting demonstrators.

You see executives at drug companies confronted by dying men who demand to know why their clinical trials and testing  - for drugs sold over the counter in other countries - drag on for years.

Act up.

Fight back.

Fight AIDS.

And perhaps most remarkably, you see videos of ACT-UP meetings, where members – some still alive, many long dead – debate and strategize, self-educate and threaten, laugh and cry and scream as they create a new model for fighting an entrenched bureaucracy. The willingness to show this footage – warts and all – is brave, fascinating and instructive. “They knew as much about this as we do,” admitted more than one medical professional.

We forget now that there was a time when people suffering from diseases did not show up by the hundreds at drug companies or government offices demanding funding and new treatments.

We forget that people with AIDS were left to die in emergency rooms. Afterwards, their bodies were stuffed in big, black garbage bags, and left unclaimed by disapproving families.

We forget that for every right we enjoy, there is a battle that went before, a battle to earn that right: a fight, at times, to the death.

The next big crisis may not be a disease or a virus. It may be environmental. It may be a war. But the lessons in this film apply to all those situations and more. In demanding fairness and hope for those you love, you can save millions.

It’s possible that, watching this film, you will disapprove of ACT-UP’s tactics. You will believe that there is a more conventional, less confrontational way to get your point across.

But until – and unless – you fight for your life or the life of someone you love, only to face indifference, discrimination and hatred, you don’t really know what you’d do to save a life.

How to Survive a Plague shows us all how to do just that.

It’s Time to Get Angry Again

The late, great Keith Haring

I attended the “Beyond Disenfranchised: LGBTQ Community Resilience and Healing” session at the ADEC (Association for Death Education) conference last week. It was my last session of the only day I was able to spend there. Much like the lunchtime networking group on Buddhism, something drew me to this.

It was clear from the start that there was frustration in the room. Some of it was directed towards ADEC, and how the LGBTQ community’s experiences (particularly in terms of medical directives and emotional support for end-of-life issues) were not being included in the larger discussions. The panelists were on the front lines, both in terms of the LGBTQ community as a whole and HIV/AIDS services (which are NOT the same thing).

In fact, they’d been in the trenches a long time – a couple of them since the beginnings of the epidemic in the 80’s. I found myself nodding, as one man recounted his experiences in Seattle: scrambling to find a funeral home that would handle a body that had succumbed to AIDS, the need for the gay community to open their own hospices because existing organizations shunned HIV-positive patients. Memories – not pleasant ones – flooded back.

ACT-UP (AIDS Coalition To Unleash Power): demonstrating, demanding that government officials break their silence and help their community, setting the example for supporters of breast cancer research and other causes. They were outrageous and loud but they had to be, because of the indifference and hostility they faced. Remember their motto?

Silence = Death

Eventually, I raised my hand, and said that when I wrote my article last year for Windy City Times (see the Articles page), I was stunned by how much anger I still felt. Some of the anger was about how I was treated, but most was about the injustice and prejudice and outright hatred I witnessed.

That, as I alluded to in Friday’s post, ignited a very impassioned discussion. I’m sure everyone left there believing that it’s time to get angry again. Why?

Because new infections are on the rise, not just among young gay men, but straight women over the age of 50.

Because the incredible medical advances of the past 30 years, which have allowed people to live decades after being diagnosed HIV-positive, have contributed to a dangerous complacency: “oh, it’s just like diabetes – no one dies from it anymore.”

Because for all of the societal victories by the gay community – especially legal, not just including marriage/civil unions – there is still a perception that HIV/AIDS is “their” problem.

I apologized to a couple panelists afterwards, for introducing anger into the conversation. But as I’ve had a few days to reflect on this, I realize that I blurted out my comments for a reason: I really am still angry.

Thirty years ago, I remember believing “ten years; in ten years they’ll have a cure or a vaccine and this will all be over with.” That didn’t happen.

AIDS has been around for almost half my life. It defined a large part of my adult life, not just because of the work I did in the community, but because of the friends I lost to the disease.

The mere idea that it’s still around, that people are still being infected around the world, that those who suffer from it are still stigmatized, that most people feel it has nothing to do with them…well, yeah, I’m still angry.

You may never have lost a friend to AIDS, but the cause ultimately doesn’t matter. All that matters is that you lost a friend you loved.

You may never have consciously felt angry about their death. But it may be that you just never admitted it, especially if you somehow blamed them.

As I’ve said before – and will undoubtedly say again – it’s all right to be angry when your friend dies, no matter who is the target of that anger. Feel angry, without feeling guilty about it.

The bigger issue is…what are you going to do with that anger?

For a look back: Vito Russo's Speech - ACTUP-NY 1988