My name is Lucy Bradley-Springer. I am a nurse, and, for the last 30 years, my career has been dedicated to HIV infection and people living with HIV (PLWH). When I was asked to do this guest editorial, all I wanted was to create an opportunity for the readers of Rehabilitation Oncology to learn from the experts: people who are surviving and thriving with HIV infection. And so I asked 2 of my colleagues, Gina Brown and Grissel Granados, to let me interview them about living with HIV.
Gina Brown, MSW, is the Community Organizer at the Southern AIDS Coalition, a nonprofit based in Birmingham, Alabama. She conducts education and development for PLWH. In 2017, Gina was recognized as a Hero in the Struggle (https://southernaidscoalition.org/gina-brown-making-space-for-the-next-woman/).
Grissel Granados, MSW, is the HIV Prevention Program Manager at Children's Hospital Los Angeles, Division of Adolescent and Young Adult Medicine, where she works with young queer men of color and transyouth on HIV prevention strategies that include biomedical prevention (eg, preexposure prophylaxis, postexposure prophylaxis) and behavioral and community interventions. She is also a community planner for HIV services in her role as co-chair of the Los Angeles County Commission on HIV.
Lucy (LB): Tell me about your life with HIV.
Gina (GB): When I found out I was living with HIV I didn't even know a woman could get it. In the beginning, it was horrible. I wasn't told I was HIV positive. The nurse said, “You have AIDS and you're going to die.” I focused on my health from the beginning, but I still spent the first 5 years waiting to die. Fortunately, another nurse told me I could live if I did 3 things, and I followed her advice. First, I attended all health care appointments. Second, I took all of my medications exactly as prescribed. And third, I learned everything I could about HIV infection. Although I was in a deep depression those first few years, I became a proactive participant in my health care. My journey with HIV has been a joy and curse; the joy has been in meeting so many wonderful people, and the curse was watching my friends/family (we're more than a community) die. I remember in the beginning not being able to watch any movies about HIV (and in the early 1990s, there were plenty) with other people in the room. I once got off a city bus because some girls were talking about a guy in the projects who had “that Gangsta” (street slang for HIV). My internalized stigma was through the roof.
Grissel (GG): I have been living with HIV for 32 years, which is my entire life. I have had a pretty good life despite dealing with HIV, as well as pediatric cancer at the age of 10 years and being born with microtia, which has impaired my hearing in one ear. It is hard for people to believe that I have had a good life, but, regardless of the health-related issues I experienced, I had my mother, also living with HIV, who has always been a strong and resilient example for how to carry myself in the face of adversity. I also had a supportive system in my extended family and in my community. I have been fortunate to be in relatively good health as I have not experienced opportunistic infections or resistance to my medication. I lived through the 1980s and 1990s with HIV, and I never thought about death; my mother always encouraged me to dream about a long life and prosperous future.
LB: Gina, when did you learn about your HIV diagnosis?
GB: I was diagnosed on April 4, 1994, when I was pregnant with my daughter. In 1994, there was a study called 076 for pregnant women. It was a study to decrease the risk of HIV infection to babies born to women living with HIV, and I was enrolled in the study shortly after my diagnosis. I was highly motivated to stick to my medications for the sake of my baby, and she was born without HIV, thanks to the study. We now know that treating pregnant women with the HIV medicines that are best for their own care significantly decreases the risk of a child being born with HIV. Because of this, the rate of children being born with HIV in the United States is almost zero.
LB: Grissel, what do you think has contributed to your successful life with HIV?
GG: I was fortunate to grow up in Los Angeles, which afforded me access to the best health care and social services in a progressive community. HIV has had a positive impact in my life and provided access to experiences I would not otherwise have had as an immigrant child living in poverty: from going to camp to traveling outside of the country to being part of consultations to gatherings of PLWH to being in a community of diverse people that made me an open-minded person and, ultimately, motivated me to become a social worker. Because of these protective factors, I was able to achieve milestones at the same rate as my peers, which included college, graduate school, and marriage. I realize that my experience has been different from many other PLWH who did not have the same protections or advantages. It is important to recognize that all of our unique experiences are valid, and our differences make up a complete representation of what living with HIV looks likes.
LB: What about you, Gina?
GB: After I knew I wasn't going to die, I started wanting to help others. I became a Peer Advocate at a Part D agency. Part D is for Infants, Children, and Families. After my daughter was born and I'd worked through my stigma, I allowed HIV to become my motivator. In 1994, I had only an eighth-grade education and a graduate equivalency diploma (GED), but I went to college and earned 2 degrees in 5 years. I've become a leader in this movement. Today, I have a trusted community voice. Because of my diagnosis, I am an HIV Prevention warrior, trying to educate as many people as possible about HIV, how to avoid getting HIV, and how to survive if you do get HIV. April 4, 2019, will mark 25 years of living with HIV!
LB: Grissel, what do you want health care providers to know about you and your needs?
GG: As someone who was born with HIV, it is important to me that my providers treat me as a long-term survivor of HIV and not rule out underlying causes for my ailments just because I am young. We still don't know enough about how HIV impacts the health of young long-term survivors and so I don't know how aging with HIV will look for me, whether illnesses common in people as they age might present for me at a younger age, or whether all these years of taking antiretroviral medications will cause unknown consequences. I do not have any examples of what my future will look like because other long-term survivors tend to be in their 50s or older or they are like me, never having known what it was like to live without HIV. For me, and for others born with HIV, this creates uncertainties about what is to come. Will I get menopause earlier? Should I start to monitor my bone density or liver function in my 30s? Will I have a recurrence of cancer? I need providers to take my concerns seriously.
LB: Anything else?
GG: It is also important to me for providers to understand the impact of HIV on my body and health without having an unnecessary focus on HIV if it has nothing to do with the condition I am being treated for in other specialty care. I want to be treated like any other patient without feeling that my provider is ignorant about HIV and is looking at me with pity. Providers must also realize that the experiences of PLWH will vary, and one cannot assume that what works for one person will work for the next.
LB: Gina, what would you want a physical therapist (PT) to know if you needed physical therapy?
GB: If I needed physical therapy, the first thing I'd want the PT to know would be how you contract HIV. Care providers who don't know how HIV is transmitted are often afraid of taking care of PLWH and I would not want my PT to be afraid of me. I'd want my PT to know how HIV and HIV medications impact our bones and mobility. Because PLWH are living longer with HIV (look at me!), they are at increased risk of osteoporosis, decreased bone mineral density, and fractures. The effects of long-term antiretroviral medications increase the risk of these problems, but if PLWH don't take their meds, they are at greater risk of disability, opportunistic diseases (including infections and cancers), and death, so we take our meds. So far, I've been lucky. My bone problems have been minor.
LB: Anything else?
GB: Just like I'm a partner in my health care, I'd want my PT to look at me as a partner, too. That means I would want my PT to listen to me. I have a lot of experiences in health care that you can't even imagine. I know what works for me and I know what doesn't. I'm there to share my expertise just as my PT is there to share her/his knowledge and skill. Partnering with my health care providers has worked for me for almost 25 years and I expect to be treated as a full partner in any health care relationship.
LB: Thank you both for sharing your stories.