What Does a Cure Mean to You? Four Individuals Share Their Hopes and Fears
LeSherri James is a 35-year-old mother of two. She's been living with HIV since 2000 when, at the age of 17, she was raped by an HIV-positive man who later died of AIDS.
Today, James works to support other HIV-positive women at the AIDS Foundation of Chicago. She echoes the sentiment that a cure for HIV would change the world, and that talking about it is essential.
Her 14-year-old daughter and four-year-old son are both HIV-negative. LeSherri's HIV-status is especially difficult for her daughter because of the social stigma that comes with the disease.
"Growing up in the black community, what happens at home stays at home," she says. She says the culture of not talking about HIV extends to other ethnic groups as well. Cultural factors can intensify the loneliness for many people, and she says lots of women with whom she works are afraid to talk about HIV with family; instead, they struggle alone.
For James, deepening the conversation about HIV with an awareness of how women and people of color think differently about the virus is a major part of the cure. HIV is still heavily stigmatized and there is often little support, even from families. James says a cure means these families would get their loved ones back.
For her personally, a cure would come with many emotions: knowing that her children could live without stigma, that James herself would not have to take daily medications, cost savings from doctor visits, and most importantly, a second chance at life. "I wouldn't be 'LeSherri James with HIV' anymore," she says. "I would just be LeSherri James again."
Adaora A. Adimora, M.D., M.P.H.
We've come a long way in treatment and prevention since the height of the HIV epidemic, but for Dr. Adaora Adimora, the need to find a cure is obvious in the work she does.
Adimora is a physician at the University of North Carolina at Chapel Hill, and has been working in infectious diseases since the 1980s. In 2013, she was appointed to the President's Advisory Council on HIV/AIDS.
"I have been close to a lot of people who have HIV, in the course of my work and my personal life," she says. "One thing that may be very powerful around having a cure, and may be the most important thing, in addition to the obvious health benefits, is the extent to which it will get rid of the stigma that has so often and unreasonably been associated with HIV."
The road to finding a cure is a complicated process and past research has primarily included men. Though she doesn't describe herself as a cure researcher, she has given it a great deal of thought.
"As a physician, my major motive is to eliminate pain and suffering in whatever way possible and [a cure] would go a long way towards this," she says. For Adimora, it is important for research to be inclusive from the beginning rather than to have a cure developed that benefits one segment of the population, such as men, and not others, such as women. Likewise, research must include people of color and take into consideration the widening disparities in our access to health.
Adimora reminds us to keep in mind both how far we have progressed in HIV research and treatment, but how fragile our gains are. She is particularly worried about the constant threats now to tear down the health care and social service programs that have begun to cut infections and deaths in a significant way, programs needed to help deliver a cure.
When asked what we could do to help find a cure, Adimora offers this suggestion. "I urge people to stay 'woke,'" she says. "We are in danger. They need to make sure that they stay abreast of this stuff and pay attention and go to the polls. And support access to healthcare for all -- and research."
Jack Shallow wants today's young people to keep HIV in the conversation. He tested positive in 1985 and has been living with HIV for more than three decades, but for him, the war is not over. He sees HIV awareness, and the search for a cure, as paramount.
At 71 years old, Shallow has lived through some of the worst periods of the epidemic, and fears that as more people from his generation disappear, the conversation about a cure diminishes in priority.
Shallow was among the first in San Francisco to receive Social Security Disability resulting from his AIDS diagnosis in the 1980s. Prior to testing positive, he had spent 20 years building a successful career as an engineer. Then he lost everything. Shallow and his partner sold their two homes and many of their possessions to pay for expenses.
He fought to stay alive after the diagnosis and volunteered his time helping others to do the same. At Project Inform, Shallow answered calls from thousands of people across the United States to help them make informed treatment decisions.
When asked what it would mean to have a cure, Shallow, whose long-time partner remains HIV-negative, struggled to hold back tears. "I can't even imagine, but I do have hope."
Ken Lazarus is a minister in Atlanta, Georgia. Now 54 years old, he was diagnosed with HIV in 1986.
With a background in Public Health and Social Justice, Lazarus' goal to bring more equity for the most vulnerable populations extends to the conversation around HIV.
As an African American man living with HIV, Lazarus is aware of the added stigma and social pressures HIV/AIDS has within communities of color. He believes community engagement in discussions about an eventual cure for HIV are a necessity. This includes mentoring more people of color, and bringing them into leadership and decision-making positions. More funding is needed and shifts in allocation must happen as well, he says. Lazarus knows it is a difficult task to achieve, but it is also well worth the effort.
Lazarus is unsure that a cure will happen in his lifetime, though he remains hopeful. For him, a cure would mean freedom from the disease physically, emotionally, and financially. He estimates that his current medication costs are up to $20,000 annually. "A cure would bring back a state of normality and health," he says. "It would mean I wouldn't have to be subjected to my daily regimen of medication. I would be able to return to a different place."
Until a cure is found, Lazarus wants health care professionals, government, communities, and individuals to keep having this important conversation on the need for a cure. "Let's have a cure," he says. "Let's kick this out!"
[Note from TheBody.com: This article was originally published by Positively Aware in Dec., 2017. We have cross-posted it with their permission.]