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A Tale of Two Tragedies

March 2002

When the World Trade Center and the Pentagon were attacked on September 11, Americans were stunned by the tragedy unfolding before them on television. Thousands of lives were lost in the outcome, resulting in an unprecedented outpouring of sympathy, support and demands for action. Most people felt they had never seen or experienced anything like it before. To a smaller portion of the population, however, the shock of sudden and unforeseen disaster was strangely reminiscent of what we experienced in the onset of the AIDS epidemic. There were many similarities to what people were feeling then and now. Little more than a month after the terrorist attacks, however, it was clear that there were also some striking dissimilarities that added to the pain felt by all those who have lost someone to AIDS. Those dissimilarities became clearer with each passing month.

Certainly, no one expected to see commercial airliners hijacked and flown into crowded skyscrapers and government buildings. Likewise, in the early 1980s, no one expected the sudden appearance of a deadly new disease ravaging clusters of our friends and loved ones in cities across the nation. It was only a few years earlier that some prominent scientists declared that the fight against infectious disease was over and had been won.

The horrible damage caused by fuel-laden airliners exploding into buildings was all but beyond our imagination. Equally beyond our imagination was this new disease that appeared two decades ago, first called Gay-Related Immune Deficiency or GRID (and later, AIDS). It was a disease that appeared without warning and seemed to lead to a painful, agonizing death in just a few weeks for some, a few months for others. The depth and scope of human destruction was so unprecedented that only a very few people were quick to recognize the horror that was to come. Some, like Larry Kramer, were even ridiculed for sounding the alarm.

On September 11, while the image of jetliners exploding into the World Trade Center was still painfully fresh, we were further stunned to see these seemingly invincible structures collapse in upon themselves, crushing thousands of living human beings in a vast cloud of toxic dust, rubble and fire. A week earlier, no one would have believed that such pillars of steel and stone could collapse at all, let alone from the top down. In the tragedy that began to unfold in the early 1980s, scientists, doctors and ordinary citizens were perplexed to see a disease that led to the collapse of the greatest achievement of evolution, the human immune system. Working from the inside out, here was a diabolically clever virus that destroyed the very system that was otherwise designed to defeat it.

In 2001, New York the city reeled in shock as it counted the dead for days on end after the terrorist attack. It seemed that almost everyone in this great city of 10 million plus had lost a co-worker, a friend, a son or daughter, a mother, father or loved one. Some, like the firemen and the city and Port Authority police died in great acts of heroism, struggling to save others. No doubt there were many other unsung heroes, regular office workers, who also lost their lives while trying to save those around them. Some of those trapped in the towers found their situation so hopeless that they cast themselves out windows from a thousand feet above ground. A sadly similar story had unfolded in the AIDS epidemic. From its first days to the present, people have agonized over the loss of friends, family members and loved ones. Within our own communities, each of us knew people who suffered and died. Fearless researchers and healthcare workers mingled with the sick, often without protection, initially without knowing how the disease was spread and whether they would become the next victims. Heroic people rose up in our communities to care for the sick and dying, while others organized to fight for the needs of those infected and help each other avoid the new plague. Many unsung heroes stayed quietly at home, nursing loved ones and acquaintances sometimes abandoned by their families. As in New York, some surrendered to the hopelessness of the early days of AIDS, taking their own lives rather than face the suffering and near certain death.

Indeed, any person who has lived with and has been affected by the AIDS epidemic likely has a special empathy for the people harmed by the terrorist attacks. We know what it's like. Albeit a cliché, we feel their pain. Nearly 3,000 died in the terrorist attacks on a single day. They and their loved ones deserve our greatest sympathies. So too do the families of people who have died of anthrax. Yet, more than ten times this many still die of AIDS every year, even today in this time of a greatly reduced death rate. At its peak, more than 50,000 per year died of AIDS in the US alone. Worldwide, the figure is in the millions and growing rapidly.

While acknowledging the similarities of these two devastating events in human history, let us also look to the many disturbing differences in how the nation responded to each, differences that speak to our character as a people and a nation. Within days of the events of September 11, the country undertook a massive mobilization to help all those affected. Government didn't hesitate for a moment to commit its full resources to meeting the needs of New York and Washington. A blank check was given to ease the pain and begin undoing the damage. Eventually individual grants of $300,000 to one half million dollars were given to each family who lost a member. Whatever someone said was needed, government was quick to send even more. Private charities raised more than half a billion dollars in the first six weeks. Celebrities and entertainers were all but tripping over each other creating fund-raising events and appealing for donations. As the economic consequences set in, government almost overnight authorized close to $15 billion to bail out the airline industry, not all of whose financial woes began on September 11. In later weeks, as the scare of anthrax settled in on the nation, the Department of Health and Human Services received $1.6 billion more for vaccines, antibiotics and bio-terrorism planning efforts. The CIA was given an extra billion dollars to make sure it could assassinate Osama Bin Laden. The Post Office received commitments in the billions of dollars to update equipment and enhance safety. The Coast Guard was given the nod to receive the bulk of its request for $10 billion to modernize our coastal defenses. Ten billion more will be spent over the next four years to enhance airport security. At least 120 billion new dollars will be spent to meet expanded military requests over the next five years.

All in all, it was a rather impressive response for the first few months of a tragedy. Of course, this tragedy hit at the mainstream of American society, not just some marginalized groups.

Memory paints a rather different picture of how the country responded when AIDS came on the scene. For the first few years after the initial outbreak of AIDS, the federal budget for combating AIDS, researching the cause, and finding treatment was... zero. Not one thin dime. Researchers who chose to work on AIDS in the early 1980s did so only by raiding other budgets and existing grants left over from cancer research. Government didn't encourage them to work on the problem, and some scientists attempted to discourage those who sought to study the problem. The first commitments of funding for research were made by a few hard-hit cities and states. At the federal level, this was the heyday of the Reagan era, a time in which the president refused to acknowledge the existence of the disease (or even say its name). People who worked in the Reagan White House today tell stories of how the White House Staff joked about the "good fortune" of a disease that primarily seemed to affect homosexuals and people of color. They were in no hurry to see it curtailed, feeling that people were getting what they deserved for their supposedly promiscuous ways. It wasn't until the mid-1980s, by which time many thousands had died and vast numbers were infected, that the first significant funding efforts were made. Even then, the impetus came from Congress rather than the White House.

The entertainment industry didn't get seriously involved in raising funds until after the death of Rock Hudson in 1986, even though groups like the American Foundation for AIDS Research were beating on its doors long before that. While AIDS research eventually became reasonably well-funded, it really wasn't until the end of the decade. Even then, care and prevention programs lagged far behind. Prevention remains hopelessly under-funded to this day, and some of the support programs critical for access to HIV treatments, such as the AIDS Drug Assistance Program, lose ground every year as Congress loses interest in the epidemic. Most of the dollars needed to help those stricken in the early years came from individual donors from the affected communities. But on their own, these philanthropists could never hope to meet the depth of the needs presented. Consequently, HIV and AIDS raged through our communities all but unchecked for the first several years. Even today, the needs of the poorest remain unmet.

Instead of being the subject of a massive national outpouring of concern and support, as we see today for the September 11 victims, people with AIDS were frequently treated as outcasts and pariahs. Politicians were more likely to call for quarantine than they were for funding programs. Children with AIDS were shunned, sometimes even physically assaulted, often driven from their schools by the angry, ill-informed and compassionless parents of "healthy, normal children." While many people had to hide their illness to avoid losing jobs and housing, women with AIDS had to hide their HIV status to avoid losing their children.

This is what we as a country did to our own citizens. The numbers of those who rose up in compassion to fight back and care for the sick were greatly outnumbered by those who responded with either hostility or indifference. It was "somebody else's" problem -- a belief that was all too widely held until someone in one's own personal circle was affected.

The comparison to the September 11 response is even more disturbing when we consider the international situation. Tens of millions are infected in Africa and other developing nations, countries which often lack fundamental healthcare infrastructures and can barely dream of providing treatment and prevention programs. Prior to September 11, Secretary of State Colin Powell declared the international AIDS epidemic the "number one threat to our national security," a statement that has since disappeared from government's phrase book. This year, even before September 11, it took a major lobbying effort to get the US government to commit a mere $200 million to an international fund to fight the epidemic. This is spare change compared to tens of billions approved almost without discussion in response to the needs of September 11. The cost of the anti-terrorist war is currently estimated to be $1 billion per day. Hundreds of millions have been committed to rebuild the things we have blown up with our bombs in Afghanistan.

No one questions the need to confront international terrorism or the need to help the victims and surviving family members of the September 11 terrorist attacks. No one wishes to begrudge them the remarkable outpouring of concern and support they are receiving from their fellow citizens and the government. Nothing will ever bring back those they have lost. It is inspiring to see government and the nation as a whole rise fully to the task, with compassion and action. However, it cannot help but bring back a sad and perhaps bitter memory of how our nation, our institutions and even a large portion of our population responded to AIDS, both in the past and in looking to the future. The number killed by AIDS vastly outnumbers those killed on September 11, or for that matter, in all of America's wars put together. The total carnage of Americans in the Vietnam war is equaled almost every year by the AIDS death toll, even today when much of the public mistakenly thinks the battle against AIDS is already won. The lesson of September 11 is that when they care enough and when they want to, our government and our nation can be the most compassionate and generous on the planet. Yet this compassion and generosity can be highly selective, doled out quickly and without debate when the victims are somehow seen as "people like us," yet withheld or greatly delayed when they are a marginalized group in our society.

We are rightly reminded today that we are all Americans first and foremost, without regard for race or ethnicity, and that we should pull together and help all those who have been harmed or threatened by terrorism. A noble thought and one we should all embrace. But this vision somehow doesn't apply when tragedies affect only a less popular segment of our society. It is somehow inconsistent when we can't seem to recognize the huge tragedy of AIDS that is unfolding worldwide and taking far more lives than all the terrorist actions imaginable. AIDS is the ultimate terrorist.

We are one nation, one people, one planet. When will we begin to act like it?

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