Lepena on the cover of a recent edition of POZ Focus
“Lepena is living proof that you can be an incredibly fierce, determined, relentless advocate while remaining graceful,” said Jennie Smith-Camejo, PWN communications director. “In my years of working with her as a member, fellow advocate, and spokesperson, I’ve watched her consistently stand up for and fight for what she believes and knows to be right, from going to DC to protest attempts to repeal the Affordable Care Act to advocating for lowering drug prices and involving more women in clinical trials. She is always ready to use her voice and influence to make life better for people living with HIV, and she is never afraid to speak truth to power–no matter who it is or what office they hold.”
Lepena was diagnosed with HIV in the late 1980s, when the only medicine available was AZT. Because prescribed doses sometimes consisted of upwards of 20 pills, were unaffordable, and sometimes resulted in death, she decided to delay treatment. She began antiretroviral treatment 20 years ago, and for four years she has been on a one-pill-a-day regimen. Though relieved to be on a one-pill-a-day regimen, she noticed considerable weight gain as a result.
She expressed her concerns about the weight gain to her doctors, only to receive unsatisfactory responses. Being the persistent advocate she is, she reached out to other women living with HIV to see if weight gain had been concerning for them as well. Upon further research, she learned that studies in Africa showed Black women gained weight due to certain components of the medication. Lepena spoke at length about the issue with POZ Magazine–and appeared on the cover of their Focus edition. She then joined POZ Editor-in-Chief Oriol Gutierrez and POZ Science Editor Liz Highleyman on POZ at Home to discuss it in more detail last month.
Lepena Reid is interviewed at the dedication of the AIDS Memorial Park in Tampa
She awaits the day to hear there is a cure for HIV. She was diagnosed with hepatitis C at the time she was diagnosed with HIV. After eight months, she could no longer tolerate the harsh effects of interferon, which was prescribed to her because of her dual diagnosis. Eleven years later, though skeptical, she started a 90-day regimen for hepatitis C. “I cannot express in words the fulfillment I felt being told I was CURED from hep C with no need of further treatments,” she said.
“A top priority for me has been advocating against the high cost of prescription medications, so l partnered with AARP Florida as a lead trainer for their ‘Stop the Greed’ campaign, advocating for lowering medication prices for seniors across the state,” she explained. The campaign aims to convince lawmakers to curb the out-of-sight prescription drug pricing and price-gouging while increasing access and affordability by passing the Comprehensive Resources for Entrepreneurs in the Arts to Transform the Economy Act (CREATES Act), a bill to remove the barriers that prevent lower-cost generic drugs from entering the market.
Lepena sees the 28 founding members of PWN, its staff, its board of directors, and all the members as sheroes. “We all need to recognize each other and acknowledge our accomplishments, as well as being a body to hug and a person who respects our tears,” she said. “My living legends have to include the talented artists of Common Threads, micro enterprising crafters, Vanessa Johnson, Pat Kelly, and Tammy Kinney. They are strength personified.”She also holds a special place in her heart for Alicia Diggs and Kamaria Laffrey in particular. “First and foremost, it is their gorgeous smiles and sparkling eyes that invite you in, and then their spirit captures your heart.”
Her plans for 2021 include prioritizing self-care for herself and her family. She hopes her energy remains as light as her mom’s energy for many years to come. She looks forward to traveling again, as well as opportunities to dance, laugh, and love as she continues to fight for the liberation of women.
“Women’s self-care resonates deeply for me, and during this time of the pandemic, it has given me the insight to bring attention to our physical endurance. We cannot allow the medications that should help us actually bring harm to our bodies. I will continue collecting information for the advancement of our health and longevity.”
We will be right here with you all the way!
