Reflections on 30 Years of AIDS: Time to Change the Story
Events like these that bring us together are joyful in the camaraderie and passion we share but also mournful in the recognition that the fight against HIV/AIDS continues. This event more so than others evokes that mix of sadness and celebration as we prepare to commemorate the 30th anniversary of HIV/AIDS next month.
I’ve been thinking a lot about what these 30 years have meant. How AIDS exposed deep inequities and biases in countries around the world, including our own. How it brought into sharp relief prevailing values about whose lives are worth saving and whose are not. But also how it inspired an extraordinary groundswell of love - and of anger - that awoke our deepest demands for greater compassion, action, and fundamental change.
I was sharing my musings with a reporter last week who caught me off guard with one probing question: Where were you the first time you learned of the emergence of HIV/AIDS?
Think back for a moment - if you will - to a time that did not include this health threat. Maybe you can’t because you’ve never known a world without it. Or maybe the scars of the past 20 to 30 years are so deep that they obscure your memory. But it is important to remember that once there was a time when AIDS fear, AIDS deaths, AIDS illness, and AIDS stigma did not even exist.
I was probably 11 or 12 when I first heard of gay cancer on TV. Even then, I remember how any media reference to gay identify in the presence of my parents made me extremely uncomfortable - I didn’t want them to notice my interest, or in this case, my alarm. The news was yet another tell-tell sign that being gay was definitely not okay. Even then, at such a tender age, I had this ominous feeling.
Now as I look back, these past 30 years have been marked by tremendous loss and sorrow but also important watershed moments of progress and valor. What was once a virtual death sentence can now be generally treated and controlled like most other chronic health conditions. Today we have extensive know-how to prevent HIV and new and more effective prevention technologies will soon be within our reach.
But the work continues. The challenges before us are numerous so let me share with you three issues AFC is keenly focused on addressing in the period ahead:
#1: Despite remarkable medical advances, less than half of all people living with HIV receive the regular medical attention they so desperately need. For some, other life circumstances such as unstable housing, substance use, or poverty stand in the way of regular care. For others, the weight of HIV stigma and discrimination - both external and internalized - is simply too much to bear. Still others are not even aware that they are infected.
AFC is tackling the issue of linkage-to-care head-on. This year we launched a new campaign working with several partners to offer testing at non-traditional venues. Our extensive housing and case management network strives to bring stability to often chaotic and even traumatized lives so that individuals may benefit from healthcare. And through two innovative national projects, AFC is piloting new models to reach people out-of-care and retain those newly diagnosed in care. In total, these efforts will reach well over 6,000 individuals living with HIV and thousands more at high risk of infection.
#2: HIV therapies are increasingly playing a role in prevention. It is now an undisputed fact that people with HIV on treatment are rendered less likely to infect others. And a growing body of research is studying HIV treatments as a form of protection for negative individuals, with either orally administered medications or medicated gels or lubricants. This all points to the importance of expanded healthcare access and biomedical research as important ways to fight the epidemic. AFC is working with partners in Springfield and across the country to ensure full implementation of the federal health reform law. Simply put, without expanded healthcare access, we don’t stand a chance of slowing down the spread of HIV. In addition, AFC is closely monitoring prevention studies using ARV therapies and working with partners in India, South Africa, the UK, and across the US to carefully review the latest science with community stakeholder to better inform policy in the years to come.
#3: Beyond medical care, our work must focus on the conditions that increase vulnerability among groups most affected. For gay, bisexual and transgender people - a group that even today constitutes more than half of all HIV/AIDS cases - homophobia remains a central building block of HIV risk.
You see, from the very beginning, the AIDS fight has been intertwined with the fight for LGBT rights and liberation. AIDS is not - nor was it ever - an exclusively gay disease. Yet homophobia harbors wherever AIDS exists. And homophobia hurts ever man, woman, and child affected by this disease.
Each year, more than 30,000 gay and bisexual males--a quarter of whom are teens and young adults -- contract HIV in the US. While HIV has severely impacted gay men of all races and ethnicities, Black and Latino men have been most severely impacted. In a 21-city study that includes Chicago, 1 in 3 Black gay men and 1 in 5 Latino gay men were found to be HIV-positive. This same study found alarmingly high rates of HIV among young gay men. For example, among Black gay men ages 18 to 19, 10% were found to be HIV-positive, and the rate of positives was nearly double for Black gay men ages 20 to 24.
The AIDS Foundation of Chicago (AFC) has been at the forefront of addressing these challenges by supporting HIV-related anti-stigma campaigns, engaging young people online through withmecomesacure, Peter Pointers on Facebook, and ringonit.com, our female condom campaign. We promote healthy, resilient images of gay men through a project akin to It Gets Better called "How are you healthy?" Our health promotion portal LifeLube educates transgender, gay, and bi men in health topics and spearhead community mobilization efforts.
AFC also supports an array of prevention, care, and advocacy projects serving tens of thousands of trans, gay, and bi men citywide and our staff are championing legislation pending in the Illinois General Assembly to advance comprehensive and gay-affirming sexuality education in Illinois schools.
You see, in the past 30 years, we have successfully changed the story about HIV. But now we must change the other narratives that keep people at the margins of enjoying the very best science, best medicine, and best technological advances to build rewarding lives.
To make progress in the decade ahead, we must change the story about bullying and harassment. Change the story about transphobia and homophobia. Change the story about poverty, mass incarceration, homelessness, and low educational attainment. We must change the story about HIV stigma and discrimination and other narratives that are complicit in keep individuals and communities from their full potential. I’m fully aware that this is no easy task but our history as AIDS advocates tells us we can make remarkable progress if we aim high and never give up.
That’s the charge I place on each of you because a better and brighter future for people affected by HIV can only materialize with your continued help and support.
Thank you for showing your support for AFC, for LGBT youth, and for all those affected by this disease. Together we can and we will change the story.