She said she “fell into it,” but for Emily Carson, an early interest in the fight against the deadly disease of AIDS sprang from her curiosity about what she observed growing up in Toronto. At just 12, Carson saw the devastation of AIDS all around her and was perplexed about the disease: “I didn’t understand it,” she said. “I wanted to learn more. I wasn’t understanding why there was so much stigma attached to it. So I tried to understand the disease.”
But Carson was also struck by the prevalence of HIV within her circle of friends. “I was very young but I knew a lot of people who were HIV infected,” she said. “So I wanted to find out.”
This would mark the beginning of a lifelong campaign against the deadly disease for Carson, who is now 25 and the Managing Director of the HIV Wellness Center at the Bedford-Stuyvesant Family Health Center in Brooklyn. She has been on the job for just two months. She has her work cut out for her.
Infection rates in the city at large have gone down, according to new numbers from the city’s Department of Health. However, in Bed-Stuy and other parts of Central Brooklyn, the same numbers show high infection rates among Blacks and Hispanics. “This is one of the hardest-hit communities, as a community of color and LGBTQ people, there is a lot of stigma involved,” Carson said during a recent panel discussion marking World AIDS Day at the Center.
Data from the city’s Department of Health and Mental Hygiene’s recently released 2013 HIV Surveillance Annual Report shows higher HIV infection rates among blacks and Hispanics compared to other races in the city. “HIV infection rates,” the report revealed, “were strikingly high among Black and Hispanic males and females relative to other racial/ethnic groups.” It added that people of color with HIV and “living in high poverty neighborhoods had relatively poor short-term survival rates.”
Such numbers worry Carson and her colleagues at the Center. She said she had seen HIV rates go up in recent months for men between the ages of 13 and 30 and for women between the ages of 13 and 48. “We have been receiving a lot of people under the age of 25,” she said during an interview at the Center. “That is a global problem, but in Central Brooklyn, that has been the new phenomenon.” Carson also said, quoting data from SUNY Downstate Medical Center, which has done a lot of research on Central Brooklyn, that there were 246 new cases of HIV in Bed-Stuy and Crown Heights last year.
It is Carson’s job to coordinate efforts combating these new cases and the general menace of AIDS in the neighborhood. Her daily work schedule involves a lot of meetings with and phone calls to departments of health, and with case managers at the Center. At meetings with her case managers, she reviews and discusses the health needs of the patients. Her work also entails developing HIV awareness programs and tackling the issues of homelessness, drug use, and food insecurity affecting people with HIV.
“As a director, I work with case managers to really understand and identify patients who aren’t taking their medications as often as they should,” she said, adding that she also works with data collectors to gather and send information to the government and other health agencies.
“It is a different challenge every day,” she said. “We are dealing with logistics, money, insurance issues, and people not getting their medications.” She said she is passionate about these issues because she is concerned about the welfare of people under her care. “My motivation is for our patients,” she said. “I have known a lot of people who have died of AIDS.”
Carson, who went to Bacon Academy High School in Colchester, Connecticut, holds degrees in media and journalism from the University of Guelph in Ontario and in globalization and medical anthropology from Long Island University, Brooklyn campus. She has worked in Costa Rica, Nicaragua, and India, doing field work on the impact of HIV/AIDS, LGBTQ issues and harm reduction involving drug use, needle exchanges, and unsafe sex practices. “I was trying to kind of understand the overall societal stigma of HIV and how it manifests in other communities,” she said, referring to her work in Latin America and other parts of the world. “Just as it is in the U.S., there is a lot of confusion about being HIV and talking about it.”
At the Center, Carson, whose LinkedIn page shows worked previously for organizations such as the International AIDS Society, Global Youth Coalition on HIV/AIDS, and the International Gay and Lesbian Human Rights Commission, is hoping to bring both her international and national experience to bear on the fight against AIDS in Bed-Stuy. She said the Center was going to train all its doctors in how to treat people with HIV. “Only one doctor sees the majority of the AIDS patients at Bed-Stuy,” she added. “We are going to change that.”
She said she would use interpersonal efforts—through web portals, text messaging, and person-to-person contacts—to reach out to patients and to help them get their treatment. She said fighting AIDS requires a holistic approach. “We have to create avenues to help people get healthy,” she said. “We will work with faith-based groups to understand how they deal with health education in their congregations,” she added.
She says a patient’s economic condition is a huge factor in how he or she deals with HIV and AIDS. “Poverty is a huge problem in Central Brooklyn,” she said. “You can’t be worried about your HIV status when you don’t have food to eat or a place to stay,” she said. But she said it was the duty of institutions like hers to locate patients in economic distress and help link them up with organizations that can help.
She is a Caucasian in a predominantly minority-run health center and neighborhood, but Carson, who moved to the U.S. three years ago and lives in Bed-Stuy, said she thought her ethnicity won’t affect her work in the neighborhood. “I have always been the ethnic outsider. I am awkwardly able to sit in those places,” she said. To her, what matters is what she does to “empower people to be able to deliver outreach programs to their communities, to be the experts they can be to render services to their people.”
“My neighborhood in Toronto looks very much like Bed-Stuy,” she said. “I grew up understanding what it’s like to be on food stamps, and what it’s like to go without,” she said.
Carson has a certain cheerfulness to her that belies the perennial stresses she’s had to deal with in the fight against the scourge of AIDS for the last 13 years. It can be demanding. “I have tried to get away from it several times, but I kept coming back to it,” she said. “I got burned out. I lost a lot of people I knew from AIDS. I tried not to be engaged in it for a long time,” she said.
“But I came back to it,” she repeated. “I couldn’t let down my friends who passed away from AIDS or those living with HIV.”
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