March 20, 2012
I've never blogged before. Having been active in the fight against HIV/AIDS for the past 25+ years, I've seen plenty of life that is unfair, unjust, and painful. I grew up in a sense, in the AIDS epidemic. I began this work when I was in my 20's ... when my gay male friends starting getting sick, and dying. I did not understand what was happening around me. As more people became sick, and quickly died during the early years of AIDS in the US, I did know one thing -- I wanted to be able to tell my future children that I did something to help -- that I did not stand by while human beings died without a loving hand to hold, without hope, without respect. I wanted them to know that while some reacted with bigotry and hatred, so many stepped forward with a sense of community and a remarkable human spirit.
Since those early days, I have stayed in the field of HIV/AIDS. And in that time I have seen the epidemic change in so many ways. We have treatment options that make HIV/AIDS a chronic, manageable disease. Not easy, but with access to care and treatment, manageable. The populations most impacted have changed. Or more accurately, and more sadly, expanded. White, gay men were hit first (and continue to be), but now people of color living in poverty are the forefront of those disproportionately impacted. The African American community is at the epicenter of the epidemic, with a particularly devastating impact on men who have sex with men (MSM), and women.
Many of us who have worked in this field long-term have grown accustomed to fewer deaths and a system of care that was built as a result of activism, spurred by the stigma, homophobia, and lack of mediations that killed so many HIV-positive Americans in the beginning. The creation of the Ryan White Care Act, the formalization of support services that grew out of grassroots efforts to care for the dying, and the availability of life-saving medications have all fundamentally changed what was once widely considered by much of the general public, a top tier public health crisis.
Don't get me wrong -- there have always been unmet needs and deep injustices toward people living with HIV/AIDS in the US, but it is fair to say that overall, things got better in the late 1990's.
And then I went to Alabama. I went as part of a small delegation of private sector funders to see the impact of HIV on the region, and to learn more about the innovative responses to epidemic that our grantees and stakeholderse have developed with AIDS United support.
I have known for some time that the South is the home of disproportionate HIV infections, poverty, lack of access to care, stigma, and poor health outcomes. Somehow though, in more than 25 years of working in HIV, I had managed to miss a visit to Alabama. It is hard to put into words what this trip, and the people I met and listened to, has meant to me. I have come away with a renewed sense of urgency in my work, because what I have seen and heard is far too reminiscent of my early days in this fight. The fear that many people in the South living with HIV/AIDS have at the possibility of others finding out about there HIV status, is palpable. Disclosures have resulted for many in the loss of employment, the severing of relationships by friends and family, and a spiral into substance use, deeper poverty and marginalization.
I was initially shocked at the difficulty we had finding HIV-positive Alabamians to talk with our group about living with HIV in the South, but it became abundantly clear that stigma and its dangerous ripple effects, are simply intolerable for people living with HIV in the South, in addition to dealing with poverty and racism.
HIV's ravaging of the Deep South represents a fire in our collective house in the United States. The HIV/AIDS epidemic there is comparable with many of the countries that we assist in our global response to it. This is unacceptable, and presents a pivotal opportunity for those among us who believe in righting historical wrongs. Our first evening on the Alabama trip began in the Civil Rights Memorial Center, in Montgomery, Alabama. Walking through this space, and seeing the powerful images of the historical fight against injustice, it was clear that the current day fight against HIV/AIDS stigma and resource deprivation in the South is part of the same march for human rights.
The HIV/AIDS epidemic in the South cannot be seen as an isolated reality, separate from the larger civil and human rights movement. Poverty, racism, and ignorance fuel the HIV/AIDS epidemic in South and beyond. If we have learned anything from those who went before us, those who put their lives on the line for justice and human rights, it is that change will not come easily. Do we sit by while an entire population of Americans living in the Deep South face an epidemic proportional to that in developing countries? Do we demand that federal resources be allocated in a way that is reflective of the Southern reality? Do we host an International AIDS Conference in Washington DC this July, and not acknowledge that there is a fire in our own home?
For the first time in years, I feel a fire in my belly. It is a message that I cannot ignore. Many years ago, I promised myself that I would be able to tell my children that I did the right thing. So I joined the fight. I now know that the fight looks different. And though it may not be the neighbor I know that is dying, it is still my neighbor, my community member, my fellow American. It is time to stop the complacency, to step out of the comfort zone we have settled into in the US -- there is a fire in our house. Will you join the fight this time? Will you someday be able to tell your children, your nieces and nephews, your grandchildren, that you did something to stop injustice and inequality? It is time to step up, and right another wrong. Let's put this fire out.
Maura Riordan is the vice president for access & innovation.