Thursday, December 01, 2011

Lessons of the War*

We aren’t supposed to use the language of war when talking about HIV anymore.

In January 2011, UNAIDS published its latest set of terminology guidelines (PDF). The guidelines are very explicit:

Avoid using words such as ‘fight’ and other combatant language, e.g. struggle, battle, campaign, or war, unless in a direct quotation or because of the specific context of the text. For example, possibly a poster or very short publication designed to have high impact would make such use appropriate. Alternatives include ‘response’, ‘management of’, ‘measures against’, ‘initiative’, ‘action’, ‘efforts’, and ‘programme’. One rationale for this is to avoid transference from the fight against HIV to a fight against people living with HIV.


I “get” that. Truly I do. But, from my perspective, this is—and always has been—a war.

It has been a war against ignorance, indifference, and prejudice. A war against shame and violence committed against both the body and the human spirit. A war against a virus that is one of the wiliest and deadliest we’ve ever encountered.

I believe we will win that war eventually. We will eradicate HIV from the planet, just as we have eradicated smallpox and—largely—polio.

But today is the 24th observance of World AIDS Day--and, for now, we are still fighting.

For a long time, HIV marched through the world like General Sherman marched through Georgia. It laid waste to everyone in its path, and there was nothing to stop it.

The first glimmers of a successful resistance came in 1987, when the U.S. Food and Drug Administration (FDA) approved zidovudine (AZT) as the first treatment for HIV infection. As I noted in my post on June 5, AZT alone could only slow the progress of HIV infection. The virus was too strong for only one drug to keep it in check—over time, it simply mutated into a drug-resistant form and renewed its unrelenting assault on the human immune system.

It would take the combination therapy that became available in 1996 to finally stop HIV’s hegemony.

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And that brings us to the question: What have we learned from 30 years of AIDS? What are the “Lessons of the War”?

The first one is this…

Crumbling is not an instant's Act
A fundamental pause
Dilapidation's processes
Are organized Decays.

Tis first a Cobweb on the Soul
A Cuticle of Dust
A Borer in the Axis
An Elemental Rust—

Ruin is formal—Devil's work
Consecutive and slow—
Fail in an instant, no man did
Slipping—is Crash's law.

---Emily Dickinson

What happened did not happen in an instant. It happened in the context of prejudice and indifference—those “cobwebs on the soul.” It happened over years of “organized decay,” when the people who should have stepped up to help—the government, healthcare providers, churches, and even families and friends—either hung back or deliberately turned away. As in so many other human tragedies, “Devil’s work” was supported, furthered, and expanded by people who saw themselves as good, decent individuals—and by systems that were supposed to serve and protect.

We learned what happens when disadvantaged groups fall prey to a deadly epidemic.

Not much...at least until people with privilege begin to succumb. Until AIDS killed a high-profile celebrity with deep pockets and a personal connection to the White House, the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health struggled to find the most basic funding for AIDS research and treatment. Almost no one cared about gay men or injecting drug users for a long time--it would take the fear of the epidemic moving into the general population for people to start paying attention.

Plus ça change, plus c'est la même chose. As the epidemic has become more and more concentrated in the African American and Latino communities—and among men who have sex with men (MSM) in those communities—the epidemic has faded, once again, from public consciousness. This appears to be one lesson we forget with regularity...

We learned that sexism never takes a holiday.

Women were almost completely missing from the AIDS equation for over a decade (if you don’t count prostitutes, who were seen as “vectors” for infection and vilified as such). AIDS in women often presented as gynecological symptoms, including pelvic inflammatory disease and recurrent, severe vaginal yeast infections. But the CDC case definitions for AIDS were built on the opportunistic infections that were common in men—and CDC did not change those definitions to include a condition common among women with HIV (invasive cervical cancer) until 1993.

Because the CDC definition was adopted as an eligibility criterion by U.S. government public assistance programs (including the Social Security Administration), this meant that many women—the majority of whom were poor women of color—were never able to get the assistance they needed. Their final days were made even harder because the system was geared to men.

We learned that it is incredibly difficult to change people’s risk-taking behavior, long-term—especially when it comes to sex.

In the beginning, the gay community did not want to believe that frequent sex with multiple partners could be the cause of AIDS. To believe that was to threaten the world they had created to protect themselves from all those “fine Christians” who hated them and wanted them dead.

And really...who could blame them? Sex was fun, usually free, and their variety of it didn’t lead to unwanted pregnancies. Antibiotics would take care of the multitude of sexually transmitted infections (STIs) they got, and no one got hurt. At least until HIV showed up...

Once it became clear that HIV was sexually transmitted, condom use by MSM skyrocketed. As a result, the infection rates among gay men fell dramatically in the late 80s and early 90s. But HIV incidence rates among MSM have been creeping up slowly again for the last decade. Among young Black and Latino MSM, the increases are dramatic.

We now have an entire generation of young people who do not remember a time before antiretroviral drugs (ARVs), and who have the (very mistaken) notion that “HIV is no big deal anymore. All you have to do is take some pills.”

When I am asked to speak about the HIV/AIDS epidemic, people frequently want to know “Why do people keep getting HIV? We all know what causes it—why don’t they protect themselves?” Given that there are an estimated 50,000+ new HIV infections in the U.S. each year (and 2.5 million new infections worldwide), it’s a fair question—despite the judgmentalism that is usually part and parcel of the inquiry.

My best answer is to compare sexual behavior to eating. Sex and eating are two of the strongest biological drives that humans experience. In our culture of affluence, many of us struggle to eat in a healthy way and to maintain a healthy weight. We take a look at that tempting piece of chocolate cake, or the second helping, and we tell ourselves “I’ll just have that now, and I’ll be ‘good’ the rest of the day/week.”

But we rarely do. It is hard to deny ourselves things that bring us pleasure and comfort--and both sex and food do that. In addition to perpetuating the species, those drives also serve to connect us to others and to meet a myriad of emotional needs, as well as the physical ones.

I am grateful to work in the field of HIV prevention, and I believe very strongly in what I do. But I am coming to believe that only a vaccine for HIV will end the pandemic for good. People want to be “good”--but, for a whole variety of reasons...many of them deeply emotional...it is difficult to be vigilant all the time.

The next time you have that piece of cake, or that second helping against your better judgment, I hope you will stop and think a little more kindly of those who struggle with the same temptation in the bedroom instead of the kitchen...

On a more positive note...

We learned that average people can make a difference on public policy and healthcare if they are loud and organized.

People living with HIV/AIDS forever changed the way we deliver healthcare in this nation. They demanded the opportunity to be partners in their own care. When no one else would help them, they created their own networks of support.

Today, we need more people like those in the activist group ACT UP, who embarrassed the Federal government to the point that it finally acted to fund research, care, and treatment initiatives, and to open access to medications and clinical trials. I have hopes that the Occupy movement will be the latest incarnation of ACT UP--and I dream that, one day, people will take to the streets to demand decent healthcare for EVERYONE in this country.

We learned that government leadership is crucial in the face of a pandemic.

A key role of government is to protect citizens—and that includes protecting their health. We call it “public health” for a reason.

There are very few government heroes in the story of AIDS--but a couple stand out for me, and you may be surprised by who they are.

Dr. C. Everett Koop, the 13th U.S. Surgeon General, did a very brave thing. Like his boss, Ronald Reagan, he said nothing about AIDS for years--but when he finally decided to speak, he changed the game completely.

In October, 1986, Koop released a publication entitled The Surgeon General’s Report on Acquired Immune Deficiency Syndrome. To get the report past the White House without going through the usual clearance process--a process he knew would gut the very frank discussion of AIDS he wanted to have--he printed 1,000 copies on expensive paper, complete with the silver seal of the Public Health Service embossed on the front. He was scheduled to review it with the Domestic Policy Council and he gambled that the Council members wouldn’t want to spend the money to reprint such a fancy-looking report. (I could admire him for that alone! ;-) He also numbered the copies and told the Council that he would be picking them up at the end of the meeting to avoid any press leaks.

His gamble paid off--the review was cursory and no one complained. Not then, anyway...

The staunchly conservative Koop, who had been nominated for Surgeon General because of his leading role in the anti-abortion movement, shocked and dismayed his conservative colleagues by addressing the problem of AIDS purely in public health terms, without the political or religious rhetoric that had muddied the waters in the past. He advocated for AIDS education “at the earliest grade possible” for children. He was blunt in pushing condom use.

And possibly most impressive of all (given his background), he came down hard against calls for mandatory HIV testing. He was able to explain, clearly and well, why any push for large-scale HIV testing must be accompanied by guarantees of confidentiality and nondiscrimination.

While it took him longer than it should have to address the issue in the first place, when Dr. Koop took it on, he didn’t flinch. He set aside the ideology that got him his job and attempted to quell the worst of the AIDS-related hysteria. He made it possible for the American public to have a reasonable conversation about HIV/AIDS, and helped to begin the still-unfinished process of tackling the stigma and discrimination associated with HIV. For those things, I consider him a leader and a hero.

The other hero is a most unlikely one, given that I am the one doing the designating. I cannot think of any other thing on which I agreed with him--but George W. Bush showed the kind of leadership on responding to HIV/AIDS that represents the very best of what government can do.

By his support for the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) and his commitment of $15 billion over the first five years of that program (2003-2008), George Bush saved literally millions of lives.

There are many details over which I could argue (focus on abstinence, ignoring harm reduction techniques for injecting drug users, etc.), but the fact remains: without President Bush’s active support for, and commitment to, PEPFAR, the AIDS pandemic would have been immeasurably worse.

Thanks to his leadership, there are babies and children all over the world who are HIV-free, because their mothers got the treatment they needed to keep from passing the virus during pregnancy, labor, or delivery. There are millions of people who have access to affordable antiretroviral drugs, and who are now leading productive lives.

I predict that PEPFAR will be the only positive legacy of George Bush’s presidency--but it is a legacy of which he can justly be proud.

**********************************************************

Today is the 24th observance of World AIDS Day. I love what I do--and I am glad to have an opportunity to honor those who lost the fight, and to look forward to the creation of an "AIDS-free generation," which is now the official goal of the U.S. Government, in the future.

But I wonder...will we finally learn the lessons of the war?



*The title of this post comes from a six-part poem of the same name by WWII English poet Henry Reed. It’s funny and dark (with flashes of beauty and brilliance) all at the same time—a case of laughing to keep oneself from crying…or screaming. It reminds me of the grim humor in which so many people living with, or affected by, HIV have to engage in order to find the courage and strength to keep fighting the battle.

You can read all six parts of Lessons of the War here.

Sunday, August 28, 2011

Dick, George, Barack, and me--a nightmare in one act

On my recent vacation, I had nightmares every night. I suspect that had a lot to do with the fact that there has been significant stress in my life lately and my brain hadn’t had a chance to process all of that until I had some long-overdue “down time.”

Here’s what the National Institutes of Health have to say about dreams:

Some scientists believe dreams are the [brain] cortex's attempt to find meaning in the random signals that it receives during REM sleep. The cortex is the part of the brain that interprets and organizes information from the environment during consciousness. It may be that, given random signals from the pons during REM sleep, the cortex tries to interpret these signals as well, creating a "story" out of fragmented brain activity.

Well…on the last night of vacation, my cortex decided to create a humdinger of story…

***********

I am in a fancy office. It looks like the photos I have seen of the Oval Office in the White House. Richard Nixon is telling me that George W. Bush has decided to run for a third term against Barack Obama. (Of course, this is completely unconstitutional—but it’s a dream!)

Dick has decided that I should be Dubya’s running mate.

Even in the dream, I am flabbergasted. My first words are “But he’s ANTI-CHOICE! How could that possibly work?!?!?!?”

Dick is insistent. My jaw is on the floor, but I pick it up and tell him, “We don’t agree on anything!”

Dick sees that as a positive, rather than a negative. Apparently he believes that if Dubya and I run together, the nation will see that completely divergent views do not keep people from working together.

I continue to remonstrate with him. There is simply No.Freaking.Way. that Dubya and I can run as a team.

And then I look out into an adjacent room, and I see Barack Obama getting ready to announce his new running mate. Apparently Joe Biden has been kicked to the curb, because President Obama has asked an African American woman to be his Vice-President. She is standing in the wings with her husband and a teenaged son. I do not recognize her.

My thoughts are racing. “Great! Obama has chosen an African American woman, and so it will be the white man/white woman ticket against the black man/black woman ticket. And I don’t agree with Dubya about anything!”*

Then I wake up. And I am very, very grateful that it was only a dream…

**************************************

*IRL this is not quite true. I did agree with George W. Bush about one thing--the need for the PEPFAR program. I only wish he had been as interested in the HIV/AIDS epidemic in this country...

Thursday, August 25, 2011

What I did on my summer vacation...

I spent my summer vacation planning my funeral.

I guess that seems odd. As far as I know, I am not dying. I recently celebrated my 48th birthday. With the exception of a bad case of reflux (exacerbated by my addiction to Diet Coke), and a few aches and pains in various joints, I seem to be in remarkably good health.

But I have been thinking a lot about death lately.

Maybe it is because so many people I have cared about have died in the last few years. My regular readers know about the death of my friend Terri-Lynn two years ago—a death that left a big hole in my heart. Her death still enrages me and fuels my political activism for universal healthcare.

But there are others. There was Maria—the first of my Invisible Friends to die. She was posting and e-mailing me one day—and then she was gone, at age 45, from lupus. There was Kate (age 55), Lisa (age 50), Kathy (age 49), and Sharon (age 47)—all dead from cancer, between October 2007 and March 2010. There was Roseann (age 56), who died of kidney failure. And, of course, there is Kirstin (age 40), who died July 1 of metastatic melanoma, and Goran (age 57) who died on July 29 of prostate cancer.

In the midst of life, we are in death….

If the actuarial tables are accurate—and my family history is any guide—I have many more years left on this planet. But life is uncertain…and I travel a lot. For the past couple of years, I’ve had this nagging feeling that I should plan for my death.

So that’s what I did.

Dear Friend and I made wills and signed advance directives and Powers of Attorney for healthcare and business before we got married—so we had already taken care of those things.

It was the stuff I knew would be problematic in the wake of some kind of unexpected or traumatic death that worried me. Would my family know how to cash in my life insurance policy? Would they know where all the bank accounts were located? What about the credit cards? What would happen with my blog and my Facebook page if I died?

There will be surprises if I die suddenly—no one can foresee all the issues. But my family now has a complete list of accounts, contact numbers, and instructions about what they need to do in the aftermath. I’ve even set out a basic set of instructions about the funeral—I felt an irrational desire to ensure that no one would decide to include liturgical dance [shudder] as a final practical joke on me…

All in all, it was a cathartic experience—not sad or depressing at all. I highly recommend that you do it yourself.

Friday, June 10, 2011

Let’s Be Clear....

Anthony Weiner is a sexual harasser. He sent 21-year-old college student, Gennette Cordova, an unsolicited sexual photo of himself.

Unsolicited.

That’s really important—because it goes to the heart of what so many people do not seem to “get” about sexual harassment.

I’ve had this argument with more than one person over the last couple of days. I’ve argued with intelligent people—intelligent women, no less!—who have basically said to me, “I like his politics, so what he did doesn’t matter.” Or…even worse to me, in some ways: “It’s not sexual harassment unless you tell him to stop and he refuses.”

No.

NO.

HELL NO!!

Unless that young woman sent him a message saying “I want to see pictures of you naked,” he had no business sending her suggestive photos. She says she didn’t. Even he admits she didn’t. He says he sent the photo as “part of a joke.”

That makes him a sexual harasser. And that makes ANYONE defending him—on whatever grounds—apologists for sexual harassment.

I’m not laughing.

I loved his politics. I loved the way he seemed to be the only one who would stand up publicly to the assholes in Congress who are trying to ruin this country and run roughshod over women, LGBTs, immigrants, the poor—basically anyone who isn’t white, male, straight, and rich.

But I will not excuse him for what he did on that basis. I will not give him a pass for using his power and privilege to sexually harass anyone.

I will not sell out my expectations that progressives should be better than this. I will not sink to the level of those who will defend the Larry Craigs and David Vitters of this world, just to hang on to a seat in Congress. And for those who are wondering...I thought Bill Clinton should have resigned when the Lewinsky scandal broke—and I still think we would have avoided eight years of George W. Bush if he had.

I do not support sexual harassers, no matter what their politics happen to be. And if you are a true progressive, you shouldn’t either.

I expect more.

Consent matters. Integrity matters. Without them, we are no different than those we oppose—because there really isn’t a dime’s worth of difference between leftist abusers of women and conservative abusers of women.

It just hurts more coming from those we thought were our allies.

Sunday, June 05, 2011

June 5, 1981

They were young. The oldest was 36; the youngest, 29.

On the day the bombshell exploded, two of the five were already dead. The others would be dead very soon after.

June 5, 1981. That was the day the Centers for Disease Control and Prevention (CDC) published a report on a rare and deadly illness affecting five young, gay men in Los Angeles.

It would be more than a year before the condition got its official name, but that was the day that Acquired Immune Deficiency Syndrome, or AIDS, was officially recognized in the U.S.

Within days of publication, CDC was flooded with reports of similar cases. The wildfire was already out of control.

*****************************

The young gay men had migrated to San Francisco and New York and Los Angeles to find others like themselves, and they had created communities where they were not the outcasts of society. They had built safe havens where they could live and love and walk down the street without getting their heads bashed in. In a world that vilified their very existence, they had proudly embraced their sexuality—flipping an audacious middle finger to middle American morals.

But now—once again—there were no safe places.

*****************************

Thirty years later, it can be hard to remember the fear and the desperation of those early days. It took more than three years to figure out what caused AIDS and to develop a test to detect HIV, the virus that causes it.

But what good is a test for a virus that can’t be treated? The medical profession stood by in bewilderment as doctors exhausted their arsenals of drugs and procedures—and nothing stopped the onslaught of death.

They were young—and they died like flies. Tens…and then hundreds…and then thousands of them.

*****************************

There were multiple ways to die of AIDS and they were all ugly. Until 1981, the only people who got the bizarre diseases that came with AIDS were whose immune systems had been destroyed by treatment for cancer.

But now the dying patients came in ever-increasing waves. Young men who had once been healthy and beautiful—who had reveled in their attractiveness and physicality as a way of healing themselves from the deep psychological and spiritual wounds that the culture had inflicted on them—were now gaunt and desperate.

They were defenseless against the unrelenting onslaught of opportunistic infections that were the hallmark of AIDS. That astonishing array of illnesses both debilitated and demoralized them.

There was pneumocystis carinii pneumonia (PCP), which killed almost 80% of AIDS patients in the early days.

There was candidiasis, or thrush, which filled their mouths and throats with so much yeast that they could barely talk, eat, or breathe.

Then there was Kaposi’s Sarcoma (KS), an aggressive form of viral cancer that overran their internal organs and disfigured their beautiful, young faces. In the first years of the epidemic, PCP may have killed more people, but KS became the defining mark of those with AIDS.

KS was the 20th century mark of Cain….imposed not for murder, but for love—or something close to it.

Then there were cytomegalovirus and toxoplasmosis and cryptosporidiosis and a host of other hard-to-pronounce and hard-to-spell illnesses that had the infectious disease specialists scratching their heads in confusion.

Nothing worked. For the first five years of the epidemic, the average survival time after diagnosis was less than a year.

*****************************

And then there were the other “side effects” of AIDS. People lost their jobs, their families and friends, and their homes when they got sick. Schools refused to admit HIV-positive students. Doctors wouldn’t treat HIV-positive patients, and healthcare workers refused to touch them. Churches and funeral homes refused to bury those who died.

They were young…and so many of them died alone and abandoned by those who should have been the first to help.

*****************************

We forget these things now. We forget that we—all of us who were on the outside looking in—made the horror and agony immeasurably worse. We treated them all—the gay men, the drug addicts, the sex workers—like lepers, and we told them that they deserved what they got for daring to be gay or addicted or abused or poor.

We even held the so-called “innocent victims”—the hemophiliacs, the babies, the blood-transfusion recipients, and the female partners of HIV-positive men—at arm’s length. Under the guise of concern, we wanted to know all about how they “got it,” to assure ourselves that we were safe.

Some of us went so far as to call for quarantining or tattooing people with AIDS. And someone in Florida went a step farther and burned down the home of three little boys who had hemophilia, AIDS—and the gall to want to attend school.

We would like to forget these things. We would like to believe that we were better, kinder, more compassionate.

We were not.

*****************************

The drugs ended much of the terror and despair—but the medications that would change everything were 15 years away from June 5, 1981.

The advent of the drug zidovudine (AZT) in 1987 would save lives, but AZT alone could only slow--not stop--HIV's ability to take over and destroy the immune system. It would take the appearance of combination antiretroviral drugs (ARVs) in 1996 to bank the wildfire.

By the time ARVs became available, over 500,000 Americans had AIDS—and 62% of them were dead. Almost 70% of those who died were under the age of 49.

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On June 5, 2011, I am 47.

They were so young…



Doxy’s Note:This post is for Mark, Tim, Lee (who is one of the big reasons I am an Episcopalian, even though I never met him), and Bill—all of whom died of AIDS. For Phillip, whose love for me set me on the path to what has turned out to be my vocation, and for Buck, whose courage and honesty has changed my life in ways he will never fully know. But—most of all—for Miguel, whose unswerving commitment to ending the scourge of HIV/AIDS inspires me every day, and who gave me the chance to spend my life working on something that matters so much to me. Thank you….

For more information on the history of the AIDS epidemic, visit the AIDS.gov timeline or the "30 Years of AIDS" page.

Thursday, February 03, 2011

UPDATE: Emily to the rescue!

I e-mailed the Empress' teacher last night. This was in my In-box this morning:

Doxy:

Thank you for your email. I am extremely grateful that you've brought this situation to my attention. I have no problem addressing this with Ms. Manners. If it's alright with you, I'd like to forward your email to the school principal so that she can also be aware of what's going on. Please reassure the Empress that this situation won't happen again -- to her or anyone else in our class!

The immediate solution (until I am able to contact Ms. Manners to discuss this all with her) will be to make a new seating chart for lunch....

I will keep you updated about this situation, but rest assured that we will handle it. Please let me know if the Empress is still coming home with a full lunchbox. If necessary, she and her friends can come upstairs and eat with me! I do not want her to be afraid to eat her lunch!

Emily Post II
Wonder Teacher


Okay, I made that signature up, but that's what I think of her...

Wednesday, February 02, 2011

Where's Emily Post when you need her?

At my daughter's school, parents are welcome to come and have lunch with their children. I do this occasionally, but it's something of a treat for both of us when I can.

Lunch lasts all of 20 minutes. I spend it chatting with the Empress and her gaggle of friends. It always seems to be a big deal for the kids when a parent comes for lunch--no matter whose parent happens to show up. I guess the kids enjoy the diversion.

Recently, I've been hearing about lunches with the mom of one of my daughter's classmates. According to the Empress, this woman teaches some kind of "manners class." To the Empress' credit, she has very nice manners, but she--understandably--gets nervous when this woman is around. After all, this mom is a PROFESSIONAL!

Well....someone needs to tell Ms. Thang to get some manners of her own. Last week, she started critiquing my daughter's lunch. Apparently she's a vegetarian and she thinks everyone else should be one too. Oh...and she didn't approve of the cinnamon roll I gave the Empress for dessert. (I should note that the Empress eats two bites of anything and is finished--so getting a few calories into her is a major goal. It's not like she has a steady diet of Cinnabons....)

The Empress came home that day with her lunch almost completely intact. She was too intimidated to eat.

That was bad enough--but yesterday, the Empress told me that Ms. Manners stopped her as she was beginning to eat and asked her if she had said grace!

Once again, lunch came home almost untouched.

Now that's a bridge too far for me. Some stranger I've never even met is coming into a public school cafeteria and instructing my child not only on what to eat, but on her spiritual duties?!

Time to get creative, my friends. How should I handle this? (Short of pistols at dawn, of course...)