A pregnant woman with an HIV awareness ribbon around her belly. In the background, two people give the V for victory hand sign.

For Those Born with HIV: Where Is Our Day?

Last updated: March 2021

Having HIV since birth, I have been given much to mourn and much to celebrate. Celebration and remembrance are two very important parts of an advocate’s life. We revel in how we have thrived with HIV and do our best to never forget those that came before us and those that we have personally lost.

The importance of national HIV awareness days

National awareness days are how we share these thoughts and emotions with the rest of our world. These days are critical in reminding everyone that HIV is ever-present and still affects some of our most vulnerable populations.

There is a little something for everyone: gay men, Latinx, Black, youth, women and girls, transgender, etc. But I am a part of one population that is sadly forgotten.

Recognizing persons born with HIV

Persons born with HIV come from all populations. No matter the color of our skin, gender, sexual orientation, we all share one thing in common: We all have been living with HIV for our entire lives. A lifetime of medication, side effects, inflammation, and with everything else HIV entails. A life we will continue living until a cure is found or we draw our last breath.

Where do we fit in with current HIV awareness days?

We grasp to find awareness days where we truly belong. Youth passed many of us long ago. We’re aging beyond our years, but we’re not considered “aging.” Many of us are in our 30’s, so we can definitely be considered long-term survivors, but not all of us. The circumstance of our transmission is tragically yet beautifully unique. So now all I can ask is: Where is our day?

Where is the day to celebrate those that have thrived through a lifetime of HIV, not knowing anything else? Where is the day to reinforce to persons living with HIV who are pregnant, or can become pregnant, the importance of getting into care and staying in care (yes, I am aware of the awareness day for women and girls, but that does not include those of transgender experience that are still capable of pregnancy who don’t identify as female)?

Where is the day to remember those that were born with HIV who were not fortunate enough to survive? Where. Is. Our. Day?

A day of awareness for perinatal cases

To this day, babies are still being born with HIV. That is a sad but powerful truth. Perinatal cases like myself have fought back against a life that hit us hard from the start. Win or lose, we fought.

I believe with all of my heart, for all of my perinatal HIV peers that I hold dear to my heart, that we deserve a day to honor that fight. A day of awareness, of visibility. A day to mourn those infants and youth that were lost to AIDS-related complications. To remember and mourn our parents that lost their fight while we survived. A day to celebrate our triumphs that we have achieved since the day we were born.

Out of 365 days in a year, I am only asking for one.

To my perinatal peers: I see you

To all of my perinatal peers that read this: I am here, I see you, and I hold my head high with pride to be counted among you. We are all warriors, we are survivors, we are thriving.

To those that count among our number that have yet to find their voice, I will be your voice. To those that already raise your voices high, raise them higher. We cannot let our circumstances, our stories fade into obscurity. Do not go gentle into that good night. We need to show the world what a lifetime with HIV looks like: victory.

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