Carrie Foote understands young love. At 17, the New York City native and high school dropout was homeless and hooked on heroin. Then she lost the only thing good in her life: Danny, her 29-year-old boyfriend of nearly two years, who died of endocarditis and lung failure related to injection drug use. Rather than pushing her to quit drugs, his death led her to double down in grief.
Her father talked her into a three-month rehab program. He lied; it was actually a year. It saved her life — and gave her a purpose. It was at the Colorado rehab program where she first tested positive for HIV. The year was 1988.
Foote overcame her addiction, earned a GED, and eventually pursued a PhD in sociology and adopted her now 12-year-old son Sami from a Jordanian orphanage. She’s been a professor of sociology at Indiana University–Purdue University, Indianapolis for the past 14 years. More importantly, the woman who went from addiction to the classroom (and was cured of hep C along the way), says she’s “essentially turned my HIV diagnosis into my life’s work….”
Her contributions are numerous. She chairs the HIV Modernization Movement Indiana, is an active member of the International AIDS Society, Women’s HIV Research Initiative (Well Project), Sociologists’ AIDS Network, Positive Women’s Network-USA, the Sero Project, and the International Rectal Microbicides Advocates. She teaches a course on the social drivers of the HIV epidemic, organizes a team for the Indiana AIDS Walk, and is a board member of Brothers United, an HIV prevention and support services organization serving predominantly black communities, LGBT or gender nonconforming.
Foote’s most recent research project is a collaboration with the Centers for Disease Control and Prevention and the Indiana State Department of Health that gives voices to people who inject drugs, many who are HIV-positive, in Austin, Indiana — the epicenter of the largest HIV outbreak among injection drugs users in the U.S. in nearly two decades.
The findings, she says, “will be used to better understand their experiences to improve services for them and their community, as well as to advocate for increased access to syringe exchange programs and medicated assisted treatment in other parts of the U.S. dealing with the challenge of opioid addictions.”
Things have changed greatly since she learned she was poz, but one area hasn’t kept up with science: the law. “Nowhere is HIV stigma more damaging and harmful then when it is structurally sanctioned in social policies and laws,” the professor insists, “as that gives people the legal right to stigmatize and discriminate against people living with HIV. Numerous people living with HIV around the world have been terribly harmed by these laws and it pains me to see such blatant injustices.”
Foote argues that HIV stigma remains “one of the biggest barriers to ending this epidemic — it is a barrier to testing, access, and linkage to care, whether or not one starts HIV medications and is able to adhere and achieve an undetectable viral load, along with barriers to supportive relationships, sexual and reproductive wellbeing, as well as other meaningful experiences in life.”
She should know: Indiana has among the worst HIV criminalization laws in the U.S. “We are a state where someone can be prosecuted, or experience sentence enhancement, solely because they are HIV-positive and nothing else.”
Now 46, Foote is spearheading the effort to modernize Indiana’s HIV laws, while also managing the PLHIV and Memoir Project, “a living archive of sorts that aims to pull together in one place, any [and] all HIV-related memoirs or biographies ... including those written by people deeply affected by HIV pandemic….” She hopes to ensure that the histories of people living with HIV, including the tragedies and triumphs, are kept alive and documented.
Her students say her greatest contributions are closer to home. “Dr. Carrie has been such an inspiration to me,” says John W. Coberg II, a student who took Foote’s “AIDS in Society” course. “Her unmatchable passion for the rights of PLHIV, dissipation of the stigma around the virus and genuine willingness to educate everyone she can, certainly makes her an amazing HIV-positive person.”
When she talks to classes, “their mouths just drop when they learn someone with a PhD, who looks like I do now, is HIV-positive and was once homeless, a high school dropout, and injected drugs. When I see that all the work I do actually makes a difference … that is when I smile, shed a tear of joy, and say to myself, ‘All the hard work is worth it. I must carry on as there is still more to be done!’”
Still, her biggest accomplishment may be more personal: bringing her “amazing son” Sami into her life. “I faced several hurdles to becoming a mom, something I wanted more than ever to be. It was the one time I faced blatant discrimination due to my HIV status.”
For a decade, her HIV status made delivering an HIV-negative child was impossible. By the time that changed, they discovered her now-ex-husband was infertile. After borrowing money and going into debt, they decided to pay the high cost for in-vitro fertilization. But the fertility clinic staff, other than the doctor, did not want to provide care because she had HIV. “It was the one time in my life where I felt completely powerless over what I saw as ‘my right, my body, my choice.’ No one had the right to decide for me whether I could have a child. That was my decision to make. But I was powerless.”
A medical ethics review board ordered the clinic to provide her care, but the in-vitro failed. So Foote turned to international adoption. “Adopting with HIV at that time was also no easy task due to folks with HIV being discriminated against in that arena as well back then, but we managed to overcome those obstacles and did it!”