Hydeia Broadbent doesn’t remember a time when HIV wasn’t part of her life. Since age 6 the global AIDS activist balanced national speaking engagements and television appearances with bouts of sickness and doctor’s appointments.
Shantrell Jackson, who was born with HIV, remembers taking medication regularly as early as the first grade. Her pills were put into applesauce to make ingestion tolerable.
Lolisa Gibson’s mother transmitted HIV to her at birth. But decades later Gibson broke the cycle and delivered a healthy baby boy who doesn’t have the virus.
These women, all born with the virus that causes AIDS, were the babies born in the 1980s who were doomed to perish. But they beat the odds. They defied death predictions. They survived and now they thrive.
Broadbent, Jackson and Gibson inherited HIV, but they all made a choice to work to battle the disease and the stigma around it.
Thirty years into the AIDS epidemic medical advancements have prolonged the lives of babies born with HIV and reduced the rate of mother-to-child transmission. The fact that these women and girls are here is amazing, says Kimberly Bates, M.D., medical director of the Nationwide Children’s Hospital Family AIDS Clinic and Educational Services in Columbus, Ohio. “This is the cure for polio in my time,” Dr. Bates says. “Something that killed so many children 30 years ago is preventable. We can prevent mom from transmitting HIV to her child. Thirty years ago that was a dream.”
Since the early 1990s mother-to-child HIV transmission has declined by 90 percent, according to data from the Centers for Disease Control and Prevention (CDC). In 1991 there were about 1,700 cases annually of perinatal transmissions in the United States. Now that number is around 300. A woman with HIV has a 25 percent chance of transmitting the virus to her child. But with proper antiretroviral therapy treatment available now, that drops to 1 to 2 percent chance, the CDC says.
Progress in perinatal transmission and HIV care has meant saving lives, Broadbent says. “It was my childhood growing up in the hospital,” says Broadbent, 28. “It was normal for me always being sick, seeing my friends pass away.”
Life-prolonging medication also helps women born with HIV have quality of life and do the same thing their peers do, such as pursue careers, further their education and start families, Dr. Bates says. “They’ve had to do that all in the face of doing something that probably the majority of Americans couldn’t do, be almost perfect in taking care of their health,” she says. “Most Americans can’t remember to take a multivitamin every day.”
But living an entire life with HIV can sometimes overwhelm young women, says Dazon Dixon Diallo, founder of SisterLove, a women’s AIDS and reproductive health advocacy organization in Atlanta. “Adults infected later in life have memories of a life without AIDS,” Diallo says. “These women don’t.”
And the transition from childhood to womanhood can sometimes mean a transition out of consistent medical care. “They come through a system that nurtures kids,” she says. “Transitioning from that full care to self-care is a big transition, and we lose a lot of young people to that. They fall out of care. That could lead to losing their lives. If they’ve lost care it’s an opportunity for them to get sicker faster because they’re not in treatment.”
Shantrell Jackson, 27, of Dunwoody, Georgia, was always sick throughout childhood. But she says she didn’t learn she had HIV until she was 18. Jackson says she didn’t seek medical care for about a year to avoid the routine associated with the disease. “I kept saying I have an STD, but I’ve never had sex,” says Jackson, a former HIV camp counselor. “When I’m depressed I don’t want to take my meds. The meds are a constant reminder that you’re living with something you can’t control.”
Now she has more control over her emotions. Jackson, who has been working at SisterLove for three years, said she’s seen a therapist. And she keeps herself from slipping back into depression by going to church, meditating and attending support groups.
Broadbent says HIV may manifest itself physically, but the virus also has an impact on the mental health of those who’ve lived with it all of their lives, especially when they start dating.“It affects your mind, body and soul. If you are not secure with who you are it can be very depressing,” says Broadbent, who lives in Las Vegas. “You can think you can’t find love…. You wonder why me.”
Women born with HIV experience mental anguish because there is still stigma associated with the disease. The stigma surrounding sexual transmission of HIV is especially strong, Jackson says, but when people learn she came into the world with the virus, “they go from looking down on you to empathizing,” she says.
Jackson has developed and facilitated workshops for people her age to help them work through issues dealing with dating and disclosure.
Lolisa Gibson, 26, spent years working as an AIDS activist and educator disclosing her status to people across the country. But when she discovered she was pregnant she became concerned about disclosure. “I looked at my fiancé and I said how do I tell my baby I have HIV,” she says. “He said, ‘You tell him just like you tell everyone else.’”
Gibson’s son is now a healthy 3-year-old. She took antiretroviral drugs throughout her pregnancy to prevent transmitting the virus to her son. He also took medication soon after birth and was tested monthly.
Gibson says she learned she had HIV at age 16 after she became ill and her weight dropped to 95 pounds. She learned she had esophagitis and later tested positive for HIV. Tests indicated she had the virus for at least 10 years.
Resentment toward their mothers for transmitting the HIV virus to them still looms for some women who live with it. But Gibson says she focuses on maintaining a loving relationship with her mother now and not on actions of the past. “I can’t image the pressure of knowing you gave your child something they can’t get rid of,” says Gibson who lives in Brooklyn, New York. “My mom has shown me nothing but love and support.”
Gibson says her diagnosis led her to commit her life to working as an HIV advocate and educator. “When I learned I was positive, I didn’t have anyone to talk to,” she says. “They (counselors) were older white people who didn’t know what I was going through. I felt empty. I didn’t want another person to go through that.”
Broadbent also sees her diagnosis as a call to action. “I think this happened to me for a reason,” she says. “All of my struggles and everything I go through. I feel like I should be here telling my story and making people care about their life and their actions.”