Even on paper three decades ago, HIV, the virus that causes AIDS, invoked fear and loathing. Despite increased public awareness and billions spent in search of a cure, the disease still generates fear today.
It was June 5, 1981, when the Centers for Disease Control and Prevention in Atlanta published in its Morbidity and Mortality Weekly Report, or MMWR, a two-page account of an outbreak of pneumocystis pneumonia that was confounding the medical community and swiftly taking the lives of gay White men in Los Angeles. Dr. Michael Gottlieb, a UCLA professor, documented these first cases of HIV/AIDS in the United States.
A month later, another MMWR report surfaced as more deaths were reported among gay men with severely compromised immune systems from coast to coast. The findings indicated that the infection was being sexually transmitted. Not long after, cases of the same mysterious infection were appearing among vastly different groups: newborns and young children born to infected mothers, intravenous drug users, heterosexual men and women, and those who received HIV-tainted blood during transfusions.
As the disease has morphed into a global pandemic that is still without a cure, Black America battles the highest rate of new HIV infections and new AIDS diagnoses compared to any other racial group. Even in the early days of the disease in the United States — first largely identified as a disease of gay White men — Blacks constituted a disproportionate number of new AIDS cases reported between 1981 and 1983. By the late 1980s, Blacks led Whites in the number of new HIV infections. By 2006, Blacks were 7.3 times more likely than Whites to be infected, according to the Black AIDS Institute.
Diverse shares conversations and reflections from some HBCU stakeholders working on the front line of HIV/AIDS, both in the classroom and in the community. Diverse caught up with Cynthia Davis, a public health practitioner and nurse who has been at the epicenter of the HIV/AIDS crisis in Los Angeles since the early 1980s. The conversations included Dr. C. Perry Brown, a public health professor and epidemiologist at Florida A&M University. And Dr. Donald Alcendor of Meharry Medical College discusses his research on the impact that AIDS transmission is having on the health of young Black women and his efforts to use basic AIDS education and mentoring to save a community at risk in Nashville.
Their work grows more critical each day as AIDS continues to devastate Black America, a population that in 2007 represented 46 percent of the 1.1 million Americans living with HIV. And while only 12 percent of the U.S. population, Blacks comprised 45 percent of new HIV cases and 57 percent of annual AIDS-related deaths, according to findings from the CDC.
Meharry Medical College’s Donald Alcendor
At the Center for AIDS Health Disparities Research at Meharry Medical College’s School of Medicine in Nashville, Tenn. — the only NIH-funded AIDS research facility housed at a Black college and one of only two in the United States (the other is at the University of Puerto Rico) that addresses issues of health disparities associated with HIV/AIDS — a small army of principal investigators is determined to halt the spread of HIV/AIDS that is wreaking havoc among Nashville’s predominantly Black community, especially its women and youth, says Fernando Villalta, Ph.D., interim director of Meharry’s AIDS research center.
When the white lab coat and latex gloves come off, look for Dr. Donald Alcendor in a pulpit or elsewhere in the community as he delivers life-saving facts to parents and school teachers eager to save and protect children and students from contracting the disease. When he assembles students and parents, Alcendor pushes a hard pill at those who often are not well-schooled in the basics about the disease’s transmission.
In an editorial, Alcendor recently shared his AIDS prevention message with readers of The Tennessean, Nashville’s major daily newspaper:
“There are no FDA-approved drugs or treatments available to effectively prevent or cure HIV infection that results in AIDS (acquired immune deficiency syndrome),” he wrote.
“This is the sobering conclusion after 30 years of research funded by billions of dollars, which has resulted in numerous important discoveries. To have a frank discussion about HIV prevention strategies with teens, we have to do away with the misinformation and misunderstanding of this potentially fatal virus infection. To do this effectively, we have to be aware of the social pressures that teens encounter in what is now a Facebook, texting and ‘sexting’ world,” Alcendor also wrote.
That’s where Meharry and Alcendor come in. Meharry, one of five medical schools in the nation that is historically Black, began its community AIDS outreach more than a decade ago as infection rates started to creep up among Nashville’s Black population. Alcendor recalls, however, that when the recent surge in new HIV infections among those 15-24 in Tennessee rose by 32 percent from 2005 to 2009, the local health department turned to Meharry for help.
AIDS specialists in Tennessee say that college students account for the greatest influx of young people they treat. Misinformation about their risk for contracting the disease, along with ignorance and stigma, have left many young people vulnerable and infected, says Alcendor, who, along with Meharry colleagues and community health providers, recently hosted an HIV Awareness Teen Summit on campus.
For many parents, teens, and teachers, HIV transmission is still a mystery or tangled in misinformation, adds Alcendor. He points out that when people visit the AIDS Center laboratory for the first time, they typically respond in quite an interesting way. “When they enter the Biosafety Level Three they don’t want to touch the door knobs and they’re tiptoeing past the incubators that house the HIV virus,” but contact with those objects is not what puts these young people at risk for the disease, says Alcendor. Two of the most prevalent modes of disease transmission among “the majority of teens contracting HIV,” he explains, are from “illicit drug use with a person who is HIV infected and from having unprotected sex with a person who has HIV.”
Parents can also count on sobering messages. Alcendor decides to “provoke them just a little” when he asks: “If your teenager is having sex, it’s not the end of the world, but it’s the end of the abstinence-only conversation.” Then, he typically follows up with: “If they went to the local high schools and tested everyone in the student body, do you think that all of them would be negative for HIV? Probably not.” The truth, he says, rankles some parents, but they also come back to thank him for answering their questions and for providing the facts.
He also hopes that “the education we provide (students) will become pervasive in the classroom and get grounded in information they need to protect themselves in the teen and preteen years — this is a message that they need before they become sexually active.”
When AIDS was first identified in 1981, Cynthia Davis was just graduating from the UCLA School of Public Health. Her first job out of school was as a public health worker teaching sex education to adolescents and their parents at a health clinic for Native Americans. That is also when Davis said she was “forced to learn quickly about this mysterious disease” and integrate what she knew into her courses. Today, it is her life’s work, says Davis. Since 1990 she has directed HIV/AIDS education and outreach projects at Charles Drew University of Medicine and Science, a historically Black medical school.
Davis’s workload mushroomed as she became a sought-after educator for communities and schools that were gripped by fear in the wake of deaths from the disease, especially in the Black community in Los Angeles. By 1983, Davis was in classrooms in East L.A. conducting HIV education, something she says no one else was doing at the time. To put a face on the still emerging and complex disease, she brought to her class someone who had full-blown AIDS. The person she invited to the class was Phil Wilson. Wilson, the founding director of the Black AIDS Institute in Los Angeles, is someone still living with AIDS. During most of her more than two decades-long HIV/AIDS campaign, Davis has been on the road in a large, lumbering mobile AIDS unit pushing prevention and preaching risk education. In addition to seeing patients in the unit, she and Drew staff dispense doses of compassion to the newly diagnosed and to those living with the disease. In the early 1990s, the mobile unit was the first in Los Angeles to conduct HIV/AIDS testing.
Nearly three decades ago, Drew’s Dr. Wilbert Jordan began treating medical cases that were later diagnosed as AIDS. In 1983, Jordan, a physician, reported the first heterosexual case of AIDS in Los Angeles County. Today, the “underground clinic” he launched in 1984 and operated after-hours at King-Drew Medical Center with the help of Drew nurses is now known as the OASIS Clinic. Since the mid-1980s, Drew has been working in collaboration with the University of Southern California to teach health care providers how to medically manage HIV/AIDS.
“I’ve seen major breakthroughs in the last 30 years, but what has been disheartening for me is to see this big shift in the prevalence of the disease move from the gay White community to being a disease of Black people and poor people,” says Davis. She is bothered that education messages, even many of the ones that she delivers, seem to fall on deaf ears. She points to Black youth, professionals, and those who are well-educated, as those who still consider HIV/AIDS to be a disease of “homosexuals, prostitutes, and those living promiscuous lives.”
“They don’t think that they have to be concerned, because they don’t fit any of those categories,” Davis explains. Such misconceptions, she insists, make preventing new infections that much more difficult.
Today, more than 1 million Americans are living with HIV and it is estimated that 20 percent do not know it. As HIV science has led to breakthrough antiretroviral treatment and drugs that are extending and ensuring more healthy lives, AIDS is no longer considered the death sentence it was three decades ago.
When those in the HIV/AIDS community speak of the disease today, it is being treated as any other chronic, but manageable disease, much like diabetes and hypertension, she explains. But even that has come with consequences, says Davis, who suggests that a greater portion of federal AIDS dollars be spent on preventing the spread of the disease as opposed to medically managing patients once they get infected. In fiscal year 2011, HIV prevention represented the smallest category of the domestic HIV/AIDS budget, $0.9 billion of the total $27.2 billion budget. In comparison, the largest component of the federal AIDS budget, $14.1 billion, is spent on health care for people living with HIV/AIDS in the United States.
Dr. C. Perry Brown
In June, when the 30th milestone of the disease rolled around, “I wondered, ‘Had it been that long?’ ” recalls Dr. C. Perry Brown. Brown was a graduate student in epidemiology at UCLA in 1981 when Gottlieb documented the first cases of HIV/AIDS in the United States. Brown has taught at the Institute of Public Health at Florida A&M University since it opened in 1997. By the time Brown landed at Charles Drew University of Medicine and Science as an assistant professor, that intellectual curiosity that he first had about HIV gave way to “a much more practical realm,” says Brown.
Brown was still at Drew in the late 1980s when HIV/AIDS “became extremely personal.” His cousin was diagnosed with AIDS at Drew teaching hospital and it was Brown who delivered the news to him. Four months later, Brown attended that cousin’s funeral. This was one of two relatives Brown says he has lost to the disease.
While a lot has changed about what is known about the disease and how it is treated, Brown is committed to addressing the needs of those most impacted by HIV/AIDS by training a new generation of health care providers and sharing real stories about AIDS. For Brown, teaching about AIDS and other infectious diseases “is about constantly trying to blend something I’ve done in the past with a principle I’m teaching. For me, that is a major task.” His days on AIDS’ frontline began in STD clinics where he monitored the spread of venereal diseases during the day and volunteered in Los Angeles AIDS clinics in the evening.
Whether he was on the street educating the public about the AIDS virus or watching spikes in 1986 of a syphilis outbreak in L.A. County among Black women, Brown struggled to connect the dots. In Brown’s mind, intravenous drug users were contracting the virus, but those studying the disease knew that HIV/AIDS could be sexually transmitted. When he put the two situations together, “We theorized that this would lead to another wave of infection called HIV/AIDS,” recalls Brown.
When Brown’s research sent him looking for links to AIDS risks and prevalence in vials of discarded hospital blood in the 1980s, he found that mothers on the maternity wards were at low-risk while patients being treated for stabbings, gunshot wounds, and other violent acts had the highest AIDS risks.
The clues Brown used to piece together the connection between cases of violence and a disease known at the time to be sexually transmitted came from knowing what life was like for Black men in prison and in gangs. The disease links he found and shared with his students were that the virus was being spread through infected blood on needles used in tattooing and piercing and men having unprotected sex with men.
Equipping and preparing his graduate students with real-life stories along with textbook knowledge is critical for work in the AIDS field, Brown says. A critical first step, however, is to dispel the lingering myth that HIV/AIDS “is a disease that was developed in the lab to kill Black people” and to replace it with the facts surrounding the disease.