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The Ribbon on His Shoulder: Perceptions of HIV in America Today

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Thirty-one years ago the U.S. Centers for Disease Control and Prevention reported on an unknown virus that was attacking the immune system of five gay men in Los Angeles. It was soon dubbed "gay-related immune deficiency," or GRID. It was labeled with that name by a scientific/medical establishment grappling with a rapidly spreading syndrome, a gay disease, the effects and stigma of which have had a lasting impact.

Clusters of Kaposi's sarcoma and Pneumocystis pneumonia, illnesses closely associated with GRID, began to be reported among Haitians who had recently immigrated to the United States, hemophiliacs, female sexual partners of people with the virus, and recipients of blood transfusions.

By the following summer, the illness had spread nationwide and had been given the name AIDS (for acquired immunodeficiency syndrome). In 1984 the U.S. Department of Health and Human Services announced that the probable cause of AIDS had been discovered: the retrovirus subsequently named the human immunodeficiency virus, or HIV.

This year's AIDS/LifeCycle raised $13 million to help care for those already affected by AIDS and HIV, especially the uninsured, and to fund prevention services to reduce the spread of the disease. While this is an incredible collective accomplishment, the value of the HIV/AIDS awareness and education the ride creates can't be underestimated. Before packing for the seven-day trip, each rider and roadie helped spread awareness about HIV/AIDS by contacting family, friends, coworkers, and others to ask for their support in ending AIDS. More than 95,000 of them were inspired to sponsor their participation in AIDS/LifeCycle.

Also along for the ride are members of the media: journalists, bloggers, photographers, and videographers, who ensure that this minority community of people affected by HIV/AIDS and their allies can share their stories and get their voices heard. The participants in ALC, the cyclists and the roadies, all contribute to spreading understanding and raising consciousness, but there is still work to do, especially in light of these surprising statistics:

  • One in five people living with HIV is not aware of it.
  • The share of Americans naming HIV/AIDS as the most urgent health problem facing the nation has dropped precipitously, from 44 percent in 1995 to 7 percent in 2011.
  • The share of young adults (including young African Americans) saying they are personally concerned about becoming infected with HIV has declined steadily since the late 1990s, from 30 percent then to 24 percent now.

Decreasing awareness and education about HIV means fewer people are considering their risk for contracting the virus and are less likely to get tested. Additionally, a lack of understanding regarding the seriousness of the AIDS epidemic can lead to less funding from private entities and government agencies.

Alarmingly, this drop in overall public concern for HIV/AIDS coincides with a sharp uptick in rates of new infections among African Americans and Latinos, whose rates of infection compared to Caucasians are nine and three times higher, respectively. And most of those newly infected, 61 percent, are gay and bisexual men.

More than 30 years into the epidemic, one third of Americans (34 percent) still harbor at least one misconception about HIV transmission:

  • 1 in 4 people do not know that HIV cannot be transmitted through sharing a drinking glass.
  • 16 percent of people think touching a toilet seat can spread HIV.
  • 12 percent of people think swimming in a pool with someone who is HIV-positive could infect them with the virus.

All those perceptions are remnants of an AIDS stigma, spurred by misinformation and phobia, that continues to exert a powerful sway over the American public. People who harbor these misconceptions about HIV transmission are more likely to say they would be uncomfortable working with someone with HIV: 43 percent, compared with 13 percent of those who know that HIV cannot be transmitted in these ways.

Additionally:

  • Almost half (47 percent) do not know that a pregnant woman with HIV can take drugs to reduce the risk of her baby being born infected.
  • About one in five (19 percent) are unaware that there is no cure for AIDS.
  • About 12 percent do not know that there are drug treatment options that can lengthen the lives of people with HIV.
  • About a quarter (27 percent) mistakenly believe (or are unsure whether) Magic Johnson has been cured of AIDS.
  • About a quarter (24 percent) mistakenly believes that there is currently a vaccine available to keep people from becoming infected.

As media coverage of HIV/AIDS declines and misconceptions and stigma persist, the visibility and awareness created by the AIDS/LifeCycle participants becomes even more important. Riders and roadies should not underestimate the importance of the mission they represent or the red ribbons they may sport on their bikes, vehicles, jerseys, and helmets as they bike through the communities along their seven-day route.

The seemingly insignificant actions of cyclists, such as sharing pictures from the ride via social media, or sending tweets about their experience, actually reinforce in the minds of their friends and loved ones that AIDS is still here. Every conversation with a resident of the communities through which AIDS/LifeCycle travels, and every driver passes one of the 2,225 cyclists is reminded that AIDS is still here. With the help of a community that is committed to caring, however, it will not be here to stay.