Between quilts and conversations: The commitment to an AIDS-free generation

Somewhere beneath a sea of quilts lay the carefully tended fall grass of the National Mall in Washington DC.  A mosaic of fabric and sequins stretched toward the horizon as the Washington Monument towered over thousands of embroidered names, sentiments from “We love you Dwight,” to a simple blue guitar accompanied by “Freddie Mercury.”

For some, the quilts were timelines of lives closed too quickly.  For others, they were a supportive blanket, in more ways than one, a silent sanctuary for those lost.  Many had photos; many stitched together clothing.  All expressed love.  In the wake of a virus, this was its legacy.

Today marks World AIDS Day.  A reminder and reflection for people living with HIV; people who’ve lost loved ones to AIDS-related diseases; and those who battle daily to see their first AIDS-free generation.  The crossroads of human rights, public health, and even art forms—quilts that are now shared each year around the country—find their respective roles in HIV’s history.

 Photo credit: NIH, https://history.nih.gov/NIHInOwnWords/

Photo credit: NIH, https://history.nih.gov/NIHInOwnWords/

Since 1988, each December 1 we catch a glimpse into the past decades of HIV.  It’s a history that holds biting failures—Senator Jesse Helms’ evidence uninformed health policies of the 80s and 90s—as well as triumphs—AIDS activists’ achievement of dramatic price drops for expensive antiretrovirals, the drugs that changed HIV from “death sentence” to “manageable disease.”

While history discloses vital lessons, it remains indelible.  The future of HIV, however, is yet to be determined.

The problem faced today is not a failure of remembrance. Nor is it an absent effort to create open environments to discuss HIV status (though, stigma maintains ugly company.) The issue today is a lack of renewed commitment to the future of HIV and investment in an AIDS-free generation.

Presently, about 2 million new HIV infections occur each year with 50,000 annual cases in the U.S. Yet of people living with HIV around the world, less than half receive appropriate antiretroviral therapy. As funding sources have plateaued, and in some cases declined, an appropriate response to HIV is handcuffed.

Southern Indiana learned firsthand what sparse support looks like when it navigated an HIV outbreak earlier this year.  Rural America tends to be a stigma stronghold, and when coupled with poverty and health professional shortages the stage is set for an outbreak. The South Carolina Rural Health Research Center found in a 2013 study that only 5 percent of American rural counties had a medical professional supported by the Ryan White Program, the largest federal program that supports people living with HIV.  For urban counties, that figure was over 30 percent.

Since 2010, the President's Emergency Plan for AIDS Relief, or PEPFAR, has seen cuts of 300 million dollars.  This beacon of George W. Bush’s health policies to address the global HIV epidemic, one that saves millions of lives each year, has dimmed compared to the guiding light it once was.  To be serious about ending AIDS, correcting the failures of past policies, and investing in future health systems, those cuts must be reversed.

A few years ago, I rode a bicycle from San Francisco to Boston in the Ride Against AIDS.  As I traveled across the country, I joined a great number of conversations about the current state of HIV.  Many of those discussions were heartfelt considerations of how HIV affected our lives, families, and communities, but many began with, “I didn’t know HIV was still a problem.”

Alone, drugs were never going to stop HIV.  The virus runs just as easily through bloodstreams as it does fault lines in public health policies. To end an epidemic, you need a cocktail of drugs and a toolbox of non-pharmacological treatments, the most important of which being the conversations and compassion found between people.

Earlier this month when news broke that Charlie Sheen was living with HIV, many fingers reflexively pointed condemnation in his direction for his lack of transparency.  While one could say it’s encouraging the public sees importance in being open about HIV status, a better question would be: What about our environment still prevents people from talking about HIV?

An AIDS-free generation begins with a renewed commitment to proven programs like PEPFAR. It’s achieved with driving the virus back into productive public conversation, a place that ends epidemics.