What is advocacy?

Advocacy means fighting for something. Arguing in favor of a cause, a position, an ideology, a law or a policy.

It is fueled by conviction—you believe in what you fight for. 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.

It can take many forms and can be practiced on many scales. It can be as simple as raising an issue or promoting your viewpoint at a dinner party or over a beer with a friend. It can manifest when you attend and speak up at a community meeting. 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. It can lead you to meet with, email, tweet, write to or call local, state or federal politicians to try to persuade them to support your cause or issue. It can inspire you to join a group, attend a rally or protest or financially support an advocacy organization or lobbying effort.

Advocacy can range in tone from peaceful to riotous. It can be practiced 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, your clothing, a pin, a bumper sticker, your money or your entire being.

It’s about starting, or participating in, a dialogue around an issue and taking action that can lead to social change. It allows you to feel empowered, make a mark and influence your destiny and that of others.

Why do we need advocacy?

Across the globe, there are people in charge of governing the world, making the laws and defending the ideologies that shape how we live. These leaders seek information and guidance to help them.

Especially in a democracy, it is each individual citizen’s prerogative to attempt to influence the cultural setting in which he or she lives. But regardless of where they live, all people should have access to health, freedom and equality.

Decision makers are more likely to focus on issues that they hear about and are encouraged, and pressured, to address.

Specifically, in terms of HIV/AIDS, there’s a great need to encourage our state, national and global leaders to continue to fight against the spread of the virus and the death it continues to leave in its wake. Our lawmakers and people in government need to hear from the HIV/AIDS community to justify giving us their help.

The slogan of ACT UP, one of the first and most effective HIV/AIDS advocacy groups, is: “Silence Equals Death.” The squeaky wheel always gets the grease—and that is especially true when money and human resources become more limited, as is happening today.

The more of us who speak up, the louder our collective call will be and the easier it will be for those who want to come to our rescue.

Why do we need AIDS advocacy now?

After 30 years of fighting HIV/AIDS, we have more than 26 antiretroviral medications that can prevent HIV infection from progressing to AIDS. Those same medicines can reduce a positive person’s risk of transmitting the virus to people who don’t have HIV. For example, HIV-positive mothers-to-be can significantly reduce the chance of passing the virus to their babies if they’re on treatment. Similarly, one study showed that effective treatment lowered the risk of sexual transmission among monogamous heterosexual serodiscordant couples by a whopping 96 percent.

Yet though we have lifesaving HIV drugs that double as prevention, fewer than 22 percent of all Americans with the virus are taking these medications. Of the 1.2 million Americans estimated to be living with HIV, a mere 262,000 are on AIDS meds. That means 1 million Americans are untreated for HIV though we have medication to treat them and save their lives and though that medication can prevent the virus from spreading.

Globally, less than 18 percent of all people living with HIV are in care. Only 6 million of the 34 million people estimated to be living with HIV globally are in care.

Despite the misperception that HIV/AIDS has been rendered a chronic, manageable disease, there are still tens of millions of people living with HIV/AIDS around the world (including 1 million Americans) who are likely to get sick and die because they cannot access antiretroviral medicines.

This is no way to stop a pandemic.

This is unlikely to change—unless our community and our families, friends and supporters advocate for a solution.

In the United States, even though so few people are in care, we’ve started to see waiting lists for AIDS Drug Assistance Programs (the programs that provide antiretroviral medications to low-income people with HIV). Last year, ADAP waiting lists grew to 12,000 people. Imagine what they’d be if the 1 million Americans with HIV not on drugs stepped forward for treatment this year?

One way to deal with this issue is to ensure that the Affordable Care Act (or health care reform) gets implemented. And one way we do that is to ensure that President Obama gets re-elected, because if he doesn’t, health care reform could be in danger.

Globally, we need to encourage America’s leadership in the fight against HIV/AIDS through our government’s financial support of the President’s Emergency Plan for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, TB and Malaria. This is because no other nation has given more to the global fight than the United States, and it sends a mixed and wrong message for us to call other nations to step up more as we withdraw our support.

We need to also help members and supporters of the global HIV/AIDS community to better lobby their own governments to contribute more resources to ending the pandemic.

We must find economic solutions that will allow the manufacturers of HIV meds to lower their prices while still making a profit. This will help ensure that the greatest number of people with HIV will have access to care in America and around the world. But we can’t demand lower prices merely because the products save lives. We need smarter solutions. Tax incentives, manufacturing incentives and other innovative financial solutions can help us put more people on treatment.

While we must significantly increase the number of people on treatment, access to treatment’s not the only issue. Even the combined wealth of all the richest nations in the world would be hard-pressed to cover the aggregate costs for treating 34 million people with HIV (and counting) for the rest of their natural lives—even if drug prices were dropped significantly. Plus, we’ll never be able to identify everyone who is newly infected before they inadvertently pass the virus along. So attempting to treat our way out of AIDS is a futile public health strategy. Therefore, we must also develop preventive and therapeutic vaccines and a cure for HIV/AIDS.

It’s possible to do. The Berlin Patient was formally recognized in 2011 as the first person cured of HIV/AIDS. And though his case is not easy to replicate, it provided critical proof of concept for a cure. Some experts claim we are $100 million away from curing HIV/AIDS.

And while we work to develop those vaccines and cures, we must fight for the things we know keep people safe from HIV, like clean syringes, condoms and comprehensive sex education.

The issues faced by people living with HIV/AIDS are not confined to the worlds of science, finance and government policy. They are also tied to issues of social justice. Too many people with HIV are stigmatized, discriminated against and unjustly criminalized. Because all of these things make people afraid to get tested and seek lifesaving care and treatment, they must be overcome.

Those who are healthy, whether living with HIV or not, need to help those less fortunate. And in doing so, we end up helping ourselves.

It’s been proved that people who become engaged in action that helps protect themselves and/or others are often more enlivened and healthy.

If you’re living with HIV/AIDS, advocacy can be good for your CD4 count—in a very real sense, it’s another way to help you survive.

This coming summer, a rare confluence of events provides the perfect opportunity to up the ante for AIDS advocacy. On July 22, more than 30,000 people who are focused on addressing HIV/AIDS will travel from the four corners of the globe and descend on Washington, DC, for the XIX International AIDS Conference (nicknamed AIDS 2012). At the same time, the AIDS Memorial Quilt will blanket the entire National Mall and many other key areas around our nation’s capital.

The HIV/AIDS community has a unique opportunity to leverage the public awareness and media coverage sure to be generated by this conference and related events. We can help inform America and people all over the world that HIV/AIDS is an unchecked epidemic—an epidemic that can be ended in our lifetimes if we correctly, and strategically, apply enough resources to finally get the upper hand on AIDS. Doing so will save billions of American taxpayer dollars and global health dollars that can be applied to other diseases or causes.

Congress is in session during the conference, and the presidential elections happen just months after AIDS 2010, so the conference could prove a pivotal incident in President Obama’s campaign.

There is a perfect storm of events happening simultaneously this year. This gives the HIV/AIDS community a once in a lifetime opportunity to change the way the world responds to the HIV pandemic—for the better.

Does advocacy work?

In short, yes.

You can personally make a difference.

Every time you raise the topic of HIV, or disclose your status, each time you call a member of Congress or a local representative, every time you click on a “like” on an advocacy ask on Facebook, or tweet or retweet a call to action, each time you add your name on a petition or take a survey or write a letter or donate a penny, you help create momentum and the critical mass politicians need—and want—to help people with HIV/AIDS.

No one likes to help those who don’t help themselves. People with HIV have a lot of unique challenges—not the least of which is that many of us aren’t comfortable talking about our positive status. But there’s a lot you can do anonymously. And remember, just because you advocate for HIV/AIDS-related issues doesn’t mean people will think you’re living with the virus.

POZ reaches a million-person audience, and we have the ability to use new technology and social media. This means we can make a lot of noise in a hurry.

So sign up here today to receive Advocacy Action Alerts from POZ via email and Twitter. We’ll let you know when you need to get involved, and we’ll make it quick and easy to do so.

And, we’ll protect your privacy. For more than 17 years, POZ has protected the identity and HIV status of its audience. We will not sell or rent any of our email lists.

Be sure to read, use and share all the tools on the Road to Washington to transform yourself into an expert HIV/AIDS advocate.

Join POZ on the Road to Washington. It’s how we end AIDS, together.

Go to roadtowashington.com for more information.