The POZ Army: How We End AIDS Together
by Regan Hofmann
This summer, thanks to a rare confluence of events, the HIV/AIDS community will have an extraordinary opportunity to help save the lives of tens of millions of people living with the virus. In preparation, we want you to join the POZ Army. We are preparing for the final battle in the war on AIDS—the surge for the cure.
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This July, the steamy, magnolia-lined streets of our nation’s capital will teem with 30,000 people who’ve traveled from the four corners of the globe to Washington, DC, for the XIX International AIDS Conference (AIDS 2012). The mission of AIDS 2012? To talk about how we turn the tide of AIDS together. In order to mark this pivotal moment in AIDS history, the NAMES Project Foundation, in partnership with POZ, will take the AIDS Memorial Quilt back to DC and display it in its entirety for the first time since 1996 on the National Mall and throughout the city. While the conference happens inside the convention center, an initiative called “Quilt in the Capital” will provide a people’s stage—a Trafalgar Square of sorts—for those of us living with the virus and our supporters. From this stage, we will up the ante in the fight for our lives.
1996 was the year we stopped fighting for our lives. In that year, the first protease inhibitors began to bring people with AIDS back from the brink of death. Many people mistakenly thought AIDS was under control. It was not.
The reality is AIDS remains a raging pandemic. But, we have the power to end it if we do the right things at the right levels right now. It is time to reawaken the world to these facts.
There is no time to waste. The good news: We have antiretroviral treatment capable of both keeping people alive and slowing the spread of the disease (as treatment can reduce the risk of transmission by up to 96 percent). The challenge? Of the 34 million people estimated to be living with HIV, only 6 million are currently in care. On World AIDS Day 2011, President Barack Obama pledged to put 2 million more in care, bringing the global total to 8 million by 2013. But that still leaves 26 million lives—about 750,000 in the United States—hanging in the balance. And new infections occur daily. AIDS can only be prevented in those who access treatment. For the rest? A diagnosis of HIV remains, ultimately, a death sentence.
Which is why the HIV/AIDS community must capitalize on this rare confluence of events to reignite the fight for the real end of AIDS—the cure. Treatment is necessary to keep people alive until we cure HIV. Treatment can slow the spread of the virus, and treatment may be a piece of the cure. But treatment is a means to an end; it should not be the endgame. Those of us living with HIV should not settle for a lifetime of pills with side effects. We should settle for nothing less than the cure.
“We have an unprecedented opportunity, based on solid scientific data, to control and ultimately end the AIDS pandemic,” said Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, in Science magazine last July.
The world’s AIDS experts agree: We can begin to end AIDS. And it’s feasible we could see a cure in our lifetime. But to move up the pandemic’s expiration date, we need the collective chorus of people living with the virus and our supporters to help secure the political and financial capital to make what is possible become reality.
Given that the U.S. government is the leading funder in the global fight against HIV/AIDS, given President Obama’s pledge to scale up access to treatment and his claim that he wants an AIDS-free generation to be a legacy for his administration—and given the fact that the presidential race is in full swing—AIDS 2012 is sure to be a momentous conference. Since tens of millions of lives depend on America’s willingness to remain committed to the fight against AIDS, the eyes of the world will surely be watching what happens in DC this summer.
We must take advantage of this perfect storm of opportunity. To do so, we must mobilize our community to change history for all people living with HIV.
This is where you come in.
Social change happens when many advocates cry out together, loudly, in unison. It’s the only way to break through the din. To help our community amplify its collective voice, POZ is launching the POZ Army.
It already exists, in a way.
The audience of POZ magazine, POZ.com and our social media network is more than 1 million strong. That’s the largest number of people living with and supportive of people with HIV/AIDS gathered in one place. No other AIDS-focused media or advocacy group has our reach and power to talk to so many people at once and to alert them to the actions that need to happen in real time—often with little notice.
The POZ Army will train all of you who wish to become recruits to be part of an expert, nimble, relentless, first-responder unit poised to lend our unified voices to put pressure behind different AIDS-related issues at key moments.
The idea of the POZ Army is not to start another advocacy group or to set the specific advocacy agenda for the HIV community but rather to galvanize the voices of people with HIV in the United States and around the world. The POZ Army will support the work that’s already being done. It will serve as a soapbox and megaphone for the messages of the many advocacy groups and individuals working at grassroots levels to secure the variety of things people with HIV need to survive.
It is an army of the people, for the people, run by the people. It has the power to generate and focus the critical mass response necessary to effect real social change.
Advocacy means fighting for something. Arguing in favor of a cause, a position, an ideology, a law or a policy. It is often driven by necessity and the pursuit of human rights. Advocacy that changes the world is frequently tied to people’s survival, freedom and dignity.
Few advocate better for a cause than those whose lives are most directly impacted by it. When it is a question of living or dying, it takes the game to a whole new level.
Advocacy is about starting, or participating in, a dialogue around an issue and taking action that can result in measurable differences. It allows you to feel empowered, make a mark and influence your destiny and that of others.
Advocacy can take many forms and can be practiced on many levels. It can be as simple as raising an issue or promoting your viewpoint at dinner with a friend. It can be done anonymously or lead you to be the face of a cause or issue. It can be done with your voice, a pen, a computer, your cell phone, your vote, a pin, a bumper sticker, a T-shirt or your money. Advocacy can happen when you meet with, email, Tweet, write or call politicians and try to persuade them to support your cause or issue. It can inspire you to join a group, attend a rally or financially support an advocacy organization or lobbying effort. It can happen when you encourage the media to cover an issue or when you write an op-ed or letter to the editor yourself—even when you write a blog or update your Facebook status. Advocacy can range in tone from peaceful to riotous.
Noted anthropologist Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Advocacy really works. Consider what happened earlier this year when the Susan G. Komen Foundation decided to stop funding Planned Parenthood clinics. A critical mass of women and their supporters created an immediate, national, highly visible backlash against the breast cancer organization. Within days, the Komen Foundation changed its mind and announced that funding would continue.
A similar thing happened with the national response to the Stop Online Piracy Act (SOPA) and PROTECT IP Act (PIPA). The bills were considered an affront to the First Amendment and were viewed as Internet censorship. Websites opposing the bill went dark on January 18, 2012, to raise awareness, and as a result millions of people raised their voice by signing online petitions. Both bills were postponed in Congress because of the mass online protests.
These are the kinds of responses we need to generate from the HIV/AIDS community, and the POZ Army is capable of providing them. If even 500 people call the office of a member of Congress on a single day, that’s enough response to motivate the chief of staff or legislative director to tell the Congress person there’s an issue he or she needs to pay attention to.
The war on AIDS needs an army of fighters at the ready and a system capable of alerting them to crisis and directing their attention and responses. At different moments the POZ Army may support the harm reduction community to fight for the legalization of syringe exchange. Sometimes we may join forces with those seeking housing for people with HIV. We may lend our voices to protest AIDS-phobic actions or the criminialization of people with HIV. Like the National Guard, we’ll go wherever we’re needed, whenever duty calls.
When we come together to learn from and teach one another, and respond en masse, we have power. Unless we can show that our community-at-large is up in arms about an issue, politicians and appropriators (the people who set federal and state government budgets) may feel less motivated to help.
Many of you regularly express a desire to get more engaged. We’re hoping your desire to advocate inspires you to join us. We’re hoping all members of all the different HIV/AIDS advocacy groups will unite in the fight in the POZ Army. In turn, the POZ Army will serve as a much bigger stick that each advocacy organization can use when championing for a particular issue or target.
A few voices can be ignored. Tens of thousands are much harder to drown out.
So what is our ultimate goal? We are fighting for a cure for AIDS. And we are fighting to put as many people as we can on treatment (who require it) to keep them healthy and alive until we are able to find the cure.
Thanks to the bravery and fierce fighting of past advocates, today there are more than 33 antiretroviral drugs that fight HIV infection and also slow the spread of the virus by reducing the risk of HIV transmission from people living with HIV to people who don’t have HIV. Therefore, theoretically, if we could test all people who have HIV so they knew their status and if we could connect them to care, we could spare many lives and seriously impede the spread of the plague. But less than 28 percent of all Americans and a mere 18 percent of people globally with HIV are taking these pills.
The problem is the cost to support a strategy to end AIDS based on testing and treating all people with the virus is enormous. The people with HIV around the world don’t have the money to pay for the pills themselves, and too few nations provide health care and antiretroviral drugs to their citizens with HIV. Bilateral (from one country to another) programs like the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and multilateral (multicountry) programs like the Global Fund to Fight AIDS, Tuberculosis and Malaria pay for most of the access to HIV meds around the world. Other governments, foundations, corporations, pharmaceutical companies and individual philanthropists help too. But we’re still nowhere near being able to pick up the whole tab.
So you see the problem. Even though treatment exists and it can slow viral spread, avert death and prevent children from being orphaned, too few people have access to it to make testing and treating people the correct strategy for ending AIDS. It is a containment strategy, and we must continue to fight for access to care for as many as possible.
But if the previous generation of AIDS activists fought to secure treatment, our generation must fight for the cure.
Because to truly end AIDS, we must cure it.
Can we cure AIDS? We already have in one person.
2011 saw the confirmation of the first man cured of AIDS. The manner in which he was cured is not easy to duplicate, but what scientists learned from his case has resulted in quantum leaps forward in AIDS cure research. Many experts believe a cure is possible in the not so distant future if we significantly increase funding and configure cure research in fresh ways to get the answers we need as fast and as safely as possible. Though it is difficult to project the actual price tag of the AIDS cure, consider this: The United States spends $19 billion dollars annually on preventing and treating HIV/AIDS. It spends about $71 million dollars at the National Institutes of Health hunting for a cure.
To be successful in this new era of AIDS activism, we must take the best of what was learned by those who fought before us and apply it to today’s battle. A distinguishing characteristic of the early AIDS activists who secured life-sustaining treatment was their encyclopedic knowledge of AIDS science and the governmental and health care systems they pressured for change. We must know as much as those we ask for help, and help them figure out ways to help us. The AIDS activists who came before us secured our place at the table. Now we must show up and present a compelling current argument for why we need a cure and how we might most quickly discover one. Showing up, as they say, is half the battle. It has been far too quiet on the Western front for too long. It’s time to make some serious noise, and the POZ Army’s going to help you hone your war cry.
Had those who came before us refused to speak up, a lot fewer of us would be here today.
To paraphrase the motto of the legendary AIDS activist group ACT UP (it stands for AIDS Coalition to Unleash Power): Silence still equals death. We cannot allow ourselves to remain tight-lipped and complacent any longer. Because too many of our lips are sealed, we are losing the ground our louder predecessors gained on our behalf. And we are personally feeling the pain of that lost ground.
We are harassed at our jobs.
We are kicked out of swimming pools.
We are told we can’t hold our grandchildren.
We can’t get life insurance.
We are sent to prison for having HIV.
We are discriminated against, stigmatized, beaten and sometimes killed merely for having a biological agent in our bodies.
The end of AIDS and all its related horrors must stop with us.
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