In 1992, Beverly Becton, addicted to drugs and suffering from pneumonia, began to scream as she sat in a hospital room alone at the D.C. General Hospital in Southeast, Washington, D.C.
“Oh, god why me! Oh, God why me!” Becton screamed.
Becton had just learned that she was HIV-positive at a time when many in the Black community and health care providers still believed that a positive test was an automatic death sentence. Becton said that the doctor who told her that she was HIV-positive, left her in the room without providing any treatment information, counseling or referrals. Becton called a niece and told her about the diagnosis.
Her niece freaked out. Later, Becton would tell the niece that she “was just playing” that she hadn’t contracted HIV. Becton’s older sister told her not to tell anybody else.
“My sister sent me into total denial,” said Becton. She continued to use drugs and avoided treatment as she waited to die.
The virus that causes AIDS that had killed so many others didn’t send her to her grave.
“One day I just got tired of dying, killing myself,” said Becton. Seven years after receiving her first diagnosis, Becton decided to get help, tackling the stigma associated with HIV/AIDS head on.
Becton, 52, now an AIDS activist, shared her story at the International Conference on Stigma at Howard University last week. The event featured lectures and panel discussions on the stigma associated with HIV/AIDS and other health issues in an effort to raise awareness about what conference organizers called “major barrier to prevention and treatment of HIV and a violation of human rights.”
The audience included health care providers, students, community leaders, activists, and people living with HIV/AIDS and their family and friends.
Jeanne White Ginder, Ryan White’s mother, was the keynote speaker during the morning session. She talked about how her son, desperately wanted to be treated like everyone else at time when little was known about HIV/AIDS.
In 1984, Ryan White, born with hemophilia, gained national prominence when he was barred from attending school following an AIDS diagnosis at 13 years old, making him one of the youngest hemophiliacs to be diagnosed with AIDS. White won that battle, but after facing discrimination, protests and threats of violence in his hometown of Kokomo, Ind., White’s family moved and White transferred to a new school in Cicero, Ind., where students received HIV/AIDS education and training from physicians and health care providers before he arrived. Students and school officials at the new school welcomed White with open arms.
White died in April 1990 following complications from a respiratory infection. Four months later, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, also known as the Ryan White Care Act. CARE is the largest government-run program that provides services for people living with HIV/AIDS. The Ryan White Care Act focuses on the most vulnerable underserved communities and provides assistance for nearly half a million people every year.
President Obama signed an extension in October 2009 and also worked to repeal a law banning people with HIV from traveling and immigrating to the United States.
“These events are important because they help people understand that [HIV/AIDS] is a health issue and to get accurate information,” said Ebony Johnson, policy and advocacy manager for the Women’s Collective, a non-profit group that advocates for the needs of women living with HIV/AIDS and those at risk for becoming infected.
Johnson added that conferences such as the International Conference on Stigma can help people living with HIV come out of isolation and help them realize that they are not alone that they can be successful and access services and find support networks.
Johnson said that a lot of the fear about the HIV/AIDS comes from the notion that it began as a gay White man’s disease.
“Then, it was a sex worker and drug user disease, then it was a disease of promiscuous people,” said Johnson. “Researchers, doctors and health care providers are still trying to outlive those negative monikers and bring this into a health conversation. But it’s hard because of the transmission route, it’s hard because it does involve sex, it involves pleasure, and it involves how people see themselves and how people realize their mortality.”
Johnson said that health care providers, community stakeholders have to be vigilant about re-messaging and repackaging what HIV is and what the possibilities for a better quality of life with treatment and also what health outcomes can be achieved.
Johnson continued: “People want to know that they can be healthy, that they can date, that they can have babies and that technology exists. I still think that we are late to the party when it comes to helping people understand that.”
Groups such as Metro TeenAIDS try to help young people get there a little bit earlier.
“First, you have to realize that stigma exists,” said Tafari Ali, education outreach coordinator for Metro TeenAIDS, a community health organization dedicated to partnering with young people to end HIV/AIDS. “A lot of young people don’t want to admit it.”
That tunnel-vision can have dire consequences among young people in the Black community.
Young, Black males 13-24 years-old accounted for 38 percent of new HIV infections, compared to 16 percent White males in the same age group, according to the Centers for Disease Control and Prevention.
Black men were 31 percent of all new HIV infections and accounted for 70 percent of new HIV infections among blacks.
While Blacks represent around 14 percent of the total U.S. population, they accounted for 44 percent of all new HIV infections in 2010, a rate that was eight times higher than infection rate for Whites, according to the CDC. Whites represented 31 percent of the new HIV infections in 2010.
Ali said that Metro TeenAIDS combats the stigma associated with HIV/AIDS and other sexually transmitted diseases and infections by empowering young people with information and training them as peer counselors to go out and educate their family, friends and classmates.
“We understand that health barriers minority communities face as well as the stigma associated with HIV/AIDS that prevents many minority populations from seeking medical care and adhering to treatment,” said Commander Jacqueline Rodrigue, deputy director of the Office of Minority Health at the Department of Health and Human Services. “Even though we have made significance progress to fight against this national and global epidemic, HIV/AIDS continues to impact communities across our country and around the world especially our communities of color and other communities that live their lives on the margins of society.”
Speaking during the opening plenary session of the International Conference on Stigma, Rodrigue said that AIDS continues to be shocking and misunderstood and its heaviest burden continues to fall upon those who are least likely to have a voice and a place at the table when it matters the most.
“What stands between us and an AIDS-free generation is partly due to the persistent stigma that even now continues to spread fear, ignorance, discrimination and isolation and undermines efforts for prevention treatment and care,” said Rodrigue. “Breaking the silence, we must continue to have dialogues like this to promote open, honest and respectful discourse in order to turn the tide.”
(Photo: Beverly Becton. NNPA Photo by Freddie Allen)