September 11, 2012
Last week I called on HIV-positive people to be more public about their HIV status, and for all of us -- HIV positive and negative alike -- to work to create an environment in which it's easier to do so.
An estimated 1.1 million of the roughly 300 million Americans are living with HIV. In spite of that the lives of people living with HIV/AIDS go largely unnoticed and their stories untold. By living openly and proudly with HIV, we confront HIV stigma, serve as a living, compelling reminder of why it's important to know ones HIV status and demonstrate that it is possible to live a full, healthy life with HIV/AIDS. We also help build demand for essential services, since we can better hold legislators accountable when we make our presence known. Coming out about our HIV status saves our own lives and the lives of others.
The reaction to that call has been interesting. A lot of people have stated that it's not possible for people with HIV to come out -- many dangers still exist and it's risky. I understand that. And still it's important for us to come out. HIV is not the first disease on the planet to be stigmatized -- not long ago people with cancer were negatively branded -- and it is not likely to be the last. The first step in reducing the stigma and risk is for more of us with HIV/AIDS to step out of the shadows. In fact, regardless of our HIV status, we all have a responsibility to create an environment in which HIV positive people don't have to hide a part of our identity or lie. Nobody wins when HIV is stigmatized. People living with HIV don't win, HIV negative people dont win, and the public health certainly doesnt win!
One of the cornerstones for ending the AIDS epidemic is providing appropriate care and treatment for everyone who needs it. The treatments are easier, more effective and less toxic than they've ever been. Just last week the FDA added a new tool to the prevention toolbox when it approved Gilead Science's new one-pill-a-day regimen. This medication is not a silver bullet; it's not going to be right for everybody. Yet it provides a new and vital option for people living with HIV. Which tools are in the toolbox doesn't matter, though, if people dont use them because the stigma is overwhelming. This is not a theoretical conversation for me. I'm alive today because I'm on treatment. I also have the love and support of family and friends. That's because I'm out about my HIV status. These things are inextricably connected.
But despite the increase in treatment options, prevention for positives has received very little energy or investment -- even though it makes sense economically and terms of public health. Our best bet for ending the AIDS epidemic is to help people with HIV reach viral suppression. But we'll never do that if so many continue to feel forced to live in the shadows. We make the best case for building the care and treatment delivery system needed to end the AIDS epidemic when people with HIV live openly. We're can't make the case for the Affordable Care Act, the Essential Benefits Package, expanding Medicaid, building new clinics and for creating incentives for doctors in the rural South if we can't prove that real people need those services.
No better advocates for these investments exist than people living with HIV. So come out come out wherever you are -- in ways that work for you, in spaces that work for you, and/or on a timeline that works for you. The coming-out process is certainly not going to look the same for everyone. For most of us it's not going to be an event but a journey. We all need to evaluate our personal circumstance and risks so that we can decide whom we come out to and when and how. But come out we can and come out we must.