amfAR, The Foundation for AIDS Research

AIDS: A Stigma Endures

By Rear Admiral Susan Blumenthal and Melissa Shive


*** The following op-ed was published on December 1, 2008 in the San Francisco Chronicle and the Huffington Post. ***

For two months, ostracized and alone, 19-year-old Marvelyn Brown slept on the gray vinyl seats of her 1996 Nissan Sentra in the parking lot of a Nashville Wal-Mart. When she visited her family, she used paper plates and plastic forks to eat so she wouldn't share dishes; all surfaces that she touched were wiped down with bleach. Her newly pregnant friend told her that she did not want Marvelyn around her child. In a matter of a few weeks, Marvelyn had lost the support of her friends and family—all because she had been diagnosed as HIV positive.

But Marvelyn's story is neither new nor unique. Her friends and relatives were suddenly confronting the realities of a potentially life-threatening infectious disease, and they responded to their lack of understanding about HIV/AIDS as many people do—with fear and mistrust.

Today is the 20th anniversary of World AIDS Day, and its message, "Stop AIDS. Keep the Promise," calls on global leaders to deliver on the promise of universal access to prevention, treatment and care. Yet despite two decades of progress in the fight against this disease, there is still widespread stigma surrounding HIV/AIDS in the United States and across the world—fueled by myths, a lack of knowledge about how the disease is transmitted, and value judgments about how it is acquired. Though many people are familiar with the concepts of ageism and racism, there is another pervasive, pernicious form of discrimination that deeply affects many lives and must also be given a name: "aidsism."

Stigma, or aidsism, is a major barrier to HIV prevention, diagnosis, care and treatment. A national survey last year by the Foundation for AIDS Research found that 1 in 5 respondents would be uncomfortable even having a close friend who was HIV positive, and 59 percent would be uncomfortable with an HIV positive woman as a child care provider. Since 1990, there has been no change in the percentage of Americans who mistakenly believe that HIV can be transmitted by kissing (37 percent), sharing a drinking glass (22 percent), or touching a toilet seat (16 percent).

Twenty-seven years after the emergence of HIV, first reported in San Francisco, AIDS has become an inextricable part of the modern world, with every country now reporting HIV infection rates. With 33 million people worldwide and 1.1 million people in the United States living with HIV/AIDS, this disease cannot be ignored.

The United States has provided significant funding to developing nations through the President's Emergency Plan for AIDS Relief, but America's own neighborhoods need help, too. Consider this: The number of African Americans living with HIV in the United States exceeds the number of HIV-infected people in seven of the 15 focus countries covered by the president's AIDS relief initiative.

With an estimated 56,000 new infections annually in America, our country urgently needs a domestic AIDS relief plan with a comprehensive national strategy to eradicate the disease. Such a plan must include a clear definition of HIV/AIDS-related stigma, a standardized set of criteria to measure it, educational campaigns to eradicate it, and research to increase knowledge about its impact on HIV testing, treatment and prevention, particularly in vulnerable populations, including minorities, women, and men who have sex with men.

As America turns a new page in its history with the landmark election of Barack Obama, our nation celebrates the values of equality and justice upon which it was founded. His victory ushers in a new era in HIV/AIDS policy with the promise of a national AIDS strategy to stop AIDS and help end the discrimination that people with this disease experience every day. This is essential.

On this 20th anniversary of World AIDS Day, despite the medical advances that have been made, Marvelyn's story serves as a powerful reminder of the struggles and indignities that people living with HIV/AIDS still face. The antiretroviral drugs that she takes to treat her disease have lengthened her life but cause side effects, including nausea, diarrhea, vomiting and mood swings. But Marvelyn says that those side effects are "still not the worst part of having HIV. It is the stigma."

Rear Admiral Susan Blumenthal is the former assistant surgeon general of the United States and is the senior policy and medical adviser at amfAR, The Foundation for AIDS Research. Melissa Shive is a Fulbright Scholar and a medical student at the University of California, San Francisco.