On June 5, 1981, the Centers for Disease Control and Prevention (CDC) published a report about the first cases of AIDS. In the 33 years since this publication, many questions surrounding the virus have been answered.
Researchers now know that HIV causes AIDS. There is a test to detect HIV and the earlier a person begins treatment, the better their long-term health. The AIDS Clinical Trials Group (ACTG) Network led a study showing treatment with three anti-HIV drugs was superior to a single or two-medication regimen. Mother to child transmission of HIV can also be prevented. Recently, the CDC released clinical guidelines encouraging men and women at risk for contracting HIV to take the daily pre-exposure prophylaxis or PrEP pill Truvada.
These strides are impressive. And the work continues as two major breakthroughs – a cure and a vaccine – still remain undiscovered. Yet another component of the virus also needs to be addressed and June 5, 2014, marks the first year this will be a national focus.
National HIV/AIDS Long-Term Survivors Awareness Day will launch this year to recognize the 60,000 Americans who have lived with HIV for 25 years or more. Many long-term survivors who are infected or affected by HIV experience guilt and depression for having lived through the years when no treatment was available while thousands of others perished. Let’s Kick ASS (AIDS Survivor’s Syndrome) is the lead sponsor and organizer of this new observance day.
Sharon Maxwell was diagnosed with HIV in the mid-1990s. She is a Community Advisory Board (CAB) member at the ACTG’s Washington University site in St. Louis, Missouri. She says anger is more prevalent for her than sadness.
“As I approach the anniversary of the first AIDS patient, I’m not so much filled with survivor’s guilt as I am filled with anger,” says Maxwell. “Angry that my husband of 17 years died at the young age of 42 from complications of AIDS. Angry that the stigma still exists around the nation and that many HIV positive people must remain hidden in their homes, afraid to reach out to their community, family and neighbors. Angry that it took so long to recognize how this disease was transmitted and that all members of society can be affected or infected. Angry about the cruelty that was inflicted upon one segment and still continues today.”
“And yet, with all this anger, I find hope in the eyes of my dearest friends,” Maxwell continues. “I see hope in the faces of the investigators who search for the cure for HIV; hope in the embraces of my fellow positive members and hope that one day we can end these ‘anniversaries’ as all of us will be thrust back into the caring arms of the world.”
This year’s theme for National HIV/AIDS Long-Term Survivors Awareness Day is “we’re still here.” More information and a video about Let’s Kick ASS, National HIV/AIDS Long-Term Survivors Awareness Day and events taking place around the country on June 5.