I've had advocacy on my mind a lot lately, and what it really means to be an advocate. Webster's defines an advocate as a person who pleads another's cause, or who speaks or writes in support of something. A lawyer is an advocate when he represents his client in a courtroom. A case manager will advocate for her client by helping them to access services, such as food, housing, and medical care. And in HIV, advocates work with government, academia, researchers, and pharmaceutical companies in the areas of prevention, access to care and treatment, drug development, and clinical trial design, just to name a few.
A good advocate does his or her homework, and follows through on what they say they're going to do. Many HIV advocates volunteer their time and are compensated very little for the amount of advocacy work that they do, especially when it's part of their job.
A effective advocate knows how to persevere and not give in, but also knows when it's an appropriate time to try to reach a compromise, always keeping in mind who they are there for and what they are trying to accomplish. They understand that they have a responsibility, first and foremost, to those they serve -- in our case, people living with HIV who otherwise would not have a voice.
An honorable advocate is someone who is not afraid to stick their neck out or be the "lone wolf." They are sometimes ostracized at first for their unpopular stance, only to be thanked later for their insight, courage, and forward-thinking views. They are not afraid to ask the difficult or uncomfortable questions. They also build consensus, lead by example, and try to bring the best out in others by using words of encouragement, and by giving honest feedback and criticism.
But maybe I should back up and say what I think does not make a good advocate.
What does not constitute a good advocate is someone, or some entity, that takes the credit for the work done by others, for their own personal gain or for funding purposes. We see it happen time and time again.
Another thing that does not a good advocate make is constant dissent and disagreement. After a while, this type of advocate begins to sound like a broken record. It brings me back to the age-old axiom, if you can't be a part of the solution, then you're part of the problem. It's okay to disagree or to be critical, but come to the table with solutions. Have recommendations on what can be done to make things better. And then, offer to ensure that those recommendations become a reality. Mentor others to become better advocates. Start a working group to tackle the problem. And follow through!
Recently I attended an FDA Advisory Committee meeting regarding the approval of tesamorelin, a potential treatment for people with lipohypertrophy. I was one of three people that day who spoke during the Open Public Hearing, advocating for recommending approval of the drug. The entire experience taught me a lot about what it means to be an advocate, even though I've purportedly been doing advocacy work for years (see "The Power of Advocacy" for more on this story).
What do you know? It is possible to teach an old advocate new tricks.
Which brings me to my final point about what I believe it means to be a good advocate -- be humble, not proud. There are many people who have paved the way in this fight, and some of us who carry it on -- too many of us -- are battle-scarred, if we're not already dead or burned out. So you sometimes have to bear that in mind while doing this work. You need to have a thick skin, be able to take a lot of criticism, and just let it roll off of you at times -- and not take anything too personally. When you focus on why you are here, who you are advocating for, and whose voices are not being heard, it helps to keep it all in perspective.
So you know what? I can't let it bother me when someone else takes the credit. Stuff happens. What's most important is that the work gets done, thanks to those whose motives are unselfish and who keep their eyes on the prize. And to me, that is what truly makes a good advocate.
Be good to yourself, and each other.
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