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It has been over four decades since the first case of HIV/AIDS was recorded and detected in North America. Since then, over 36 million people worldwide have died from the virus. The AIDS crisis in the U.S. started in the 1980s when doctors discovered clusters of ( and ( in gay men in,  and in 1981.

Today, we are lucky that there have been so many advances in treatment and prevention, and even those infected are living long and productive lives. If you were not around or old enough to remember what was happening in the 1980s, and even into the 1990s, you may not see HIV/AIDS as the threat that many of us witnessed. Opening the paper or turning on the evening news meant listening to the numbers in new cases rise as we struggled as a country (and a world) on how to react fast enough. Even with all the resources at our disposal, people are still becoming infected and, sadly, they are also still dying.

The Red Awareness Ribbon became a symbol of support and solidarity for the community of individuals infected and affected by HIV/AIDS. You could not turn on a TV set or open a magazine without seeing everyday people and celebrities all donning the red ribbons. But have you seen them lately? Where did they go?

In the spring of 1991, a costume designer named Marc Happel was invited to an artist collective called Visual AIDS in NYC. The collective had begun several years earlier with artists from all walks of life in New York City trying to use their mediums to create change around the HIV movement. The group had been searching for a symbol or something recognizable to identify their cause. Happel had been touring all around Upstate New York and identified all the yellow ribbons being tied to trees and mailboxes to honor servicemen from the Persian Gulf War. He thought, why couldn’t they do something similar? Happel thought why not take a simple piece of ribbon and fold it to place on people’s lapels? The staff and volunteers at Visual AIDS thought that the color should be red to represent the blood. Volunteers used donated supplies and worked to fashion the ribbons so they could be distributed.

In mid-1991 the group had the crazy idea to see if they could get everyone at the Tony Awards to wear the ribbons. By the end of the show, the celebrities wearing ribbons stuck out. However, no one wanted to explain what the ribbons were for. AIDS was still a topic that network television wasn’t sure how to address. Rumors swirled that if people talked about the ribbons, the network would just cut to commercials. The mystery around the ribbons played to their favor. Almost every awards show or red carpet was flooded with people wearing the ribbons from that point on. Even school groups and church groups started contacting Visual AIDS, asking how they could start their own ribbon project. It became a national phenomenon. The fad of the red ribbon extended well into the 1990s with the ribbons showing up on T-shirts, posters, magazine ads, media campaigns, and even Christmas ornaments.

What started as an idea in someone’s apartment became a battle cry for the community. Happel wanted it to be a mantra for anyone willing to support the cause.

“What we wanted to do was create something that a mother in Michigan could wear on the lapel of her blouse, and you know maybe her son was living in New York and living with AIDS, and she wanted to do something. I think it was just, it was also a symbol that we created, that somebody could wear, and somebody might go up to them and say, ‘What is that? Why are you wearing that red ribbon?’ And, hopefully, that person would say, ‘Here’s why.’”

But as the 1990s came to an end and research and developments in the care for people living with HIV started to make great strides, the movement didn’t seem to garner the attention that the cause once did. Slowly, you started to see the ribbons disappear.

Are we glad that we have come as far as we have in prevention and treatment? Of course. Are we happy that people living with HIV can have long-term success and live a full life with adherence to the proper treatments? You bet. And are we excited that with PrEP as part of a safer-sex lifestyle, we can almost eradicate the risk of transmission? Absolutely.

But still, almost 13,000 people die from AIDS and AIDS-complicated illnesses every year in the U.S. alone. In 2018, 37,968 people received an HIV diagnosis in the U.S. It is estimated that 1.2 million people are currently living with HIV in the U.S. and 1 in 7 of them do not even know that they are positive.

With all that information, why aren’t we continuing to see the red ribbons? I’m curious. Is it a lack of compassion or empathy? I would venture to say no. I believe it is a lack of education and continued stigma around the disease. It is not “curable” at this point. It is still considered by many that if you contract HIV, you did something wrong, which is far from correct. If we did more to educate the communities and to keep the facts in the forefront, I think we would see more attention to the cause.

I think Elizabeth Taylor said it best, “It’s bad enough that people are dying of AIDS, no one should have to die from ignorance.”

Dale Pierce is the chief finance officer at Rosedale Health and Wellness, as well as executive director at Dudley’s Place in Huntersville, N.C.

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