We wanted to spend some time in October focusing on HIV/AIDS awareness and advocacy, a disease that we feel is stigmatized and ‘swept under the rug’ far too often. Each one of our guests this month has a unique diagnosis story, experience, and relationship with the disease in terms of how it has shaped their life and their journey. We sought to provide accurate information, overcome stigmas, and discover a positive way forward for those living with HIV/AIDS.
In October we spoke with Giuliani Alvarenga about public health and living with HIV; Jahlove Serrano about combating stigma and ignorance around HIV/AIDS; Nkem Osian about ensuring the uninsured, underinsured, and vulnerable individuals with HIV have access to the systems and treatment they need (as well as her journey with fibroids); and Lauren R. Kornegay about living with and creating a community for POC living with endometriosis.
Have you gotten your FREE copy of Hacking Healthcare: A Resource Guide? Be sure to download your copy today from our website! The healthcare system isn’t the easiest thing to navigate, but we’ve picked up a few hints and tips and we’re excited to share them with you on your invisible illness journey.
Giuliani Alvarenga is an award-winning writer and law student living in New Orleans. A familiar face to those who have watched Trust Me, I’m Sick, they are HIV-undetectable and have a Bachelor’s degree in English Literature and Gender & Women’s Studies from the University of California, Berkeley. Giuli is also affiliated with the Centers for Disease Control (CDC), and a student liaison for the American Bar Association’s Health Law Section. They are involved in immigration rights as a public health issue, and speak on this topic in partnership with various organizations, as well as contributing writing to TheBody.com alongside last week’s guest, Charles Sanchez. In 2019, they received a Marguerite Casey Foundation scholarship to report and write a story on the chronically ill Latinx women of Los Angeles.
Jahlove Serrano is a health educator, youth advocate, HIV/AIDS activist, androgynous model/runway coach, drag Queen, background dancer, and choreographer to the stars. He’s a Guatemalan/American native of the Bronx, New York, and contracted HIV a couple of days shy of his 16th birthday. Working in the field of HIV/AIDS prevention, outreach, and research (on a local, national, and global scale), his mission is to combat the ignorance and stigma around HIV/AIDS and to address the needs of HIV-positive — and negative — youth. Jahlove has worked with NY AIDS Institute, National Gay Mens Advocacy Coalition, The Global Network of People Living with HIV/AIDS North America (GNP+NA), AIDS ALLIANCES, The White House, and The Department of Health. Jahlove uses his entertainment platform to promote HIV/AIDS awareness and education throughout the United States and beyond. And…he’s both insightful and open, while maintaining a joy and positivity we can ALL connect to.
Nkem Osian is a Public Health Analyst at the United States Department of Health and Human Services, where she analyzes and monitors Ryan White HIV/AIDS Programs in Los Angeles County. In this role, she ensures the uninsured, underinsured, and vulnerable individuals living with HIV have access to optimal, life-saving treatment and care. In addition, Nkem is a patient advocate and member of the board of The White Dress Project (WDP), an organization focused on raising national awareness about the uterine fibroid epidemic and in filling the gaps in care, education, and research in the field. She herself lives with uterine fibroids, and shares her story to help break down the walls of silence that surround this common — and commonly unknown — gynecological condition.
When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. Due to a lack of representation and acknowledgement of Black women affected by endometriosis, she felt entirely alone. In 2015, she created her own community: ENDO Black, a platform designed to connect women of color affected by endometriosis, bringing them together to heal and advocate. Her goal is not only to give women of color living with endometriosis a network, but also to raise awareness among doctors and other medical professionals of the lack of representation in reproductive health research and dialogues…so they can begin to (finally) understand that endometriosis affects women of color differently — from both a medical and cultural perspective.