Gloria Searson: An Educator and Devoted Advocate for HIV Prevention & Treatment
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Gloria Searson is the founding and executive director of COPE, the Coalition on Positive Health Empowerment. With over 30 years of experience, she is an expert in the field of HIV and Hepatitis C. Since 2016, she has been on the Center for Disease Control and Prevention (CDC) Advisory Committee for HIV, Viral Hepatitis, and STD Prevention and Treatment. She also serves on the New York State AIDS Advisory Council to End The Epidemic of HIV.
Gloria is a social worker by training, but a teacher by nature. She completed her undergraduate education at SUNY Albany in 1981, with a double major in Political Science and African-American Studies. She later received her master’s degree in social work in 2000 from Stony Brook University.
Gloria’s first job after college was teaching remedial English at George W. Wingate High School in Brooklyn for a year, where she saw social determinants of education in real time. In fact, many students did not show up to the classroom for a variety of reasons – whether they had to babysit their younger siblings, did not have shoes to wear, or were facing abuse at home. Feeling a moral obligation, Gloria would meet with students after school to teach them how to write and prepare them for either returning to class or taking the GED.
When Gloria began working for New York City’s after-school funding program, she noticed injustice between different communities in the city. She brought up an example of the after-school arts program, where a lower-income neighborhood was receiving just a fraction of the funding that a more affluent neighborhood was getting, even though they had a similar amount of students. However, this was not the last time Gloria came face-to-face with injustice.
Gloria was diagnosed with HIV in 1991 and as a teacher, she felt like it was her turn to seek out education about HIV. However, while seeking out information, she felt like organizations at the time were not equipped to help her. This encouraged Gloria to pursue a job as a peer educator and case manager at an HIV organization called Stand Up Harlem. In this position, she helped HIV-positive clients find housing and advocated for improved healthcare access and treatment for them. Stand Up Harlem holds a special place in Gloria’s heart, as this is where she first met her wife, Damaris.
Gloria and her wife Damaris making the news while fighting for marriage equality
At first, Gloria struggled to find an HIV community outside of work, since very few black people were talking about HIV at the time. For context, she was diagnosed right after the crack epidemic resolved, once it already destroyed families and communities. As a result, black people did not trust the healthcare system and were hesitant to seek treatment for HIV for various reasons, particularly to avoid being stigmatized. This was in stark contrast with the people seeking help at the HIV organization she worked at. She mostly worked with white men who have sex with men (MSM), who did not hesitate to share their HIV status and were proudly advocating for government support for HIV treatment.
Seeing this contrast, Gloria desired to empower her community to be more accepting of their HIV diagnosis and realize they can live with this disease. This motivated her to work for the National AIDS Treatment Advocacy Project (NATAP), where she directed HIV and Hepatitis C information distribution for 10 years. At the time, she was only one of three black people working for the organization’s national speaking circuit on HIV treatment. However, Gloria states that there weren’t any black people involved in the “science side” of the organization.
When Gloria started working for NATAP, azidothymidine (AZT) - the first medication approved by the FDA for the treatment and prevention of HIV – was only recently introduced to the market. People were fearful of the many side effects. Therefore, an important part of Gloria’s advocacy for HIV treatment was sharing stories of how more people were surviving and living longer because of AZT. However, this advocacy was not easy. Gloria describes having things thrown at her while she was speaking about treatment, as people believed pharmaceutical companies were evil. She even had people reject help because they believed that HIV was created to further destroy the lives of black people, people struggling with addiction, and LGBTQ individuals.
In her interview, Gloria brought up the story of Ryan White, a 13-year-old boy who was diagnosed with HIV/AIDS and was prohibited from returning to school. His story garnered national attention to the HIV epidemic and was an important turning point for HIV advocacy in the United States, as the Ryan White Comprehensive AIDS Resources Emergency Act was passed in August 1990. Gloria describes that it was enlightening and encouraging that the Ryan White story gave national attention and funding to the HIV issue. Plus, it opened the door for conversation about HIV, along with additional resources to support medical care for those with the disease.
Gloria on the cover of Hep (Winter 2017), a magazine for people living with viral hepatitis
Following her time at NATAP, Gloria worked as an advocacy relations manager for the pharmaceutical company Abbott Laboratories. This was a valuable opportunity for her to explore the science behind HIV prevention and treatment, especially since Abbott was a pioneer in developing HIV tests. Gloria developed and implemented marketing initiatives to promote Kaletra, Abbott’s antiviral medication for HIV that slows the progression of the disease, which was just approved by the FDA at the time.
However, Gloria describes this as the hardest job she ever had, particularly because she had to work in an industry that did not “know [her] people.” On one hand, Gloria advocated for black people and women to be involved in pharmaceutical research aiming to bring anti-HIV drugs to market. And on the other hand, she also strived to educate her community and encourage them to trust science.
Gloria at the 2017 African American Day Parade in NYC. In her words, “Don’t be afraid to say what needs to be said.”
In the late 80s and early 90s, HIV/AIDS was a devastating diagnosis and illness. Those impacted were dying from opportunistic infections that brought on fear unimaginable to most people. The challenge was immense, with medication still in the developmental stages and no definitive treatments available. However, as a teacher at heart, Gloria firmly believed that education was the key to survival with HIV. She dedicated time to first learn about the immune system herself, and then developed workshops and information guides to help others affected by HIV. Moreover, Gloria created fun ways to teach the complex science of HIV and Hepatitis C treatment. She explains, "Once we did get medicine, then you had to explain to people the importance of taking it exactly at the correct times each and every day. I used everyday dynamics to make people understand how to take their medicine." For example, she related the importance of taking exact amounts of medicine to precise baking measurements or the need for taking multiple medications to the essential positions of football teams.
After working at Abbott, Gloria returned to New York City to assume the role of administrative director of the HIV clinic at North General Hospital, a black-owned and -operated hospital in Harlem. She served in this role at North General for two years until it suddenly closed, displacing 800 patients onto the streets of Harlem with nowhere for them to go. Coming home from work the day that North General closed, Gloria (with the inspiration of her wife) decided she would start her own coalition to address the HIV epidemic — which led to the formation of COPE (Coalition on Positive Health Empowerment).
Gloria celebrates the incredible, hard-working staff at COPE
COPE centers around Gloria’s passion for education, with the goal to “bridge [all] the gaps in chronic disease prevention and healthcare management” for underserved communities. COPE provides community health education on the prevention, diagnosis, treatment, and management of chronic health conditions, including (but not limited to) Hepatitis C and HIV. The organization also coaches patients in building healthy habits and achieving improved well-being with the belief that access to quality healthcare is a human right.
Over the last 14 years, COPE has stepped in and excelled in areas even the government could not handle. New York City, with $2.7 million in funding, was unable to connect the hundreds of thousands of people they tested for Hepatitis C and HIV co-infection to proper healthcare. Seeing an immense roadblock between diagnosis and appropriate treatment, COPE stepped in with just thousands of dollars to diagnose and then directly link patients to doctors. Their success stemmed from the extensively trained and educated COPE workers that Gloria oversaw.
Gloria celebrates the incredible, hard-working staff at COPE
At the time that Gloria was starting COPE, her work was recognized by the White House and she had the incredible opportunity to serve as President Obama’s HIV and Hepatitis C advisor during his first term. In this role, Gloria organized events to spread awareness of newly available Hepatitis C treatments, and to convince physicians and insurance companies that Hepatitis C is worth treating. Working closely with Obama’s administration, she was actively involved in HIV and Hepatitis C policy work and procured more funding for Hepatitis C research.
Gloria advocating for Hepatitis C elimination at the highest level with President Obama
Through her health struggles, challenges with racial injustice, and gender barriers, Gloria has conquered all trials to become a paragon of advocacy and force for medical equity. From her early days teaching in Brooklyn to her groundbreaking work with COPE, Gloria has demonstrated an unyielding commitment to underserved communities. She transformed her personal adversity into a mission to educate, advocate, and change the landscape of HIV prevention and treatment for all, inspiring us all to make a difference in our own unique ways.
Her journey illustrates the profound impact one individual can have, even in the face of systemic challenges. Gloria Searson's legacy is not just in her accomplishments but is derived from the lives she has touched and the communities she has uplifted.
Change begins with you. When you want something to become better, you have to find your role in it.
Gloria expresses many thanks to Marlene Taylor, Dr. Donald Cotler, her wife Damaris, Janice Sweeting-Saud, and her family.