Silent No More: The Perspective of Heterosexual Men Living with HIV
by Temitope Creppy, Senior, Howard University
“I was refused treatment because I refused to say I was homosexual.” These are the words of a 50-year-old African-American man diagnosed with HIV who was wrongly discriminated against and denied medical treatment due to stigma that persists in the healthcare environment. Healthcare professionals doubted his relationship with his wife, and people in his daily life still consider him homosexual because he lives with HIV. Unfortunately, across the country this is the reality of a majority of heterosexual men who live with HIV and experience stigma on a day-to-day basis. A Howard University workgroup named Positive EntreEmpowerment Heterosexual Men’s Workgroup and their associated Straight and Positive support group, support heterosexual men living with HIV and combating the stigma they face on a day-to-day basis. The workgroup consists of primarily men from around the country, largely from Cleveland, Ohio, Texas, and Florida ranging from those who have been living with HIV for several decades to recently diagnosed individuals. The group is inclusive of all racial and socioeconomic backgrounds.
As a federal work-study student working at Howard University Hospital, I was assigned to listen to a seminar called, The Power of Peer Support: Breaking the Chains of Stigma Together as We Age with HIV. This was the first time I was honestly exposed to the need for awareness around HIV, and the false misinformation that grew from stigma, and lack of knowledge on HIV. Stigma, when associated with HIV, another medical condition, mental illness, or disability, prevents a person from seeking evaluation and treatment, disclosing the diagnosis to those most likely to provide support, and following treatment guidelines. Health-related stigma destroys human dignity. Stigma within the Black community has been extremely prevalent due to misinformation and medical mistrust. A prominent example of historical medical mistrust dates back to the Tuskegee Syphilis Experiments where about 400 African-American men were unethically denied treatment for syphilis. Going forward, this led to lower healthcare satisfaction, skepticism about medication and medical care, and low participation in clinical trials within the black community. The HIV/AIDS epidemic began no less than a decade later.
Through the seminar and my other interactions with the Positive EntreEmpowerment group, the men’s voices echoed the various forms of isolation, depression, hurt, and confusion they felt when first being diagnosed. It wasn’t until joining the group and being able to share their experiences that a sense of comfort, empowerment, and confidence began to build. The genuineness and enthusiastic nature of the group started to shine through. They instructed the audience about the need for more conferences to build awareness around stigma and to end stigma. They also emphasized that support groups like these can symbolically break the bonds of HIV. The most important part was to treat each other as individuals no matter their background.
Under Dr. Sohail Rana and Mrs. Patrica Houston of the Pediatric Hematology/HIV Research Unit at Howard University Hospital, I collaborated with the Positive EntreEmpowerment Heterosexual Men’s Workgroup. Inspired by their session, I wanted to hear more about HIV within the Black community and the stigma faced by heterosexual men living with HIV. After meeting with Derrick Robinson, founder of Straight and Positive support group, I gained an abundance of wisdom from his life experiences and the leadership he demonstrates as the workgroup’s leader. Even though I had an understanding of stigma before, my time with the group allowed me to gain insight into the lack of representation of heterosexual men within these conversations and initiatives, not only with HIV but sexual-transmitted diseases (STDS) in general. Robinson wanted to express that they are not looking to silence other groups living with HIV, but to shed light on the exclusion of heterosexual men, the most underrepresented demographic in terms of stories and treatment development and promotion. “Our community as a whole is disproportionately affected by HIV. Black men are not included in the research and constantly shut out of prevention initiatives, and we are one of the fastest rising demographics being affected… How can we have a dialogue without being seen as excluding other demographics” said Robinson. He went on to talk about how very few forums have heterosexual Black men as a speakers. PREP (pre-exposure prophylaxis- medicine for people at risk for HIV take to prevent getting HIV from sex or injection drug use) commercials rarely show straight men, and the isolation of the Church and family spaces has made it hard for men to come forward with all the negative perceptions that surround it.
Alberto Perez Bermúdez, 53, is a Heterosexual Hispanic man within the group who is a community leader living with HIV since the age of 18. He views the workgroup as a place where men can come and talk about what they’re going through in their personal lives. “I’m doing God’s work, where I’m not going to give up easily, I want my words to be shared so people can see the reality and hopefully find inspiration or comfort in our stories.”
As a future healthcare professional, I strongly believe stigma directed at heterosexual men living with HIV needs to be completely addressed through channels of community empowerment, mobilization, funding, and a change in the healthcare culture surrounding STDs. As a young Black male, this topic had me doing a lot of reflection on the ways sexual health was presented to me in my upbringing. Growing up as a male there is a certain pressure to dive right into sex, including positive reinforcement young boys receive from having multiple partners. However, nobody speaks on the ramifications that can occur from this outlook and way of living. Before researching this topic and speaking with the amazing men of the Positive EntreEmpowerment Heterosexual Men’s Workgroup, I had little to no knowledge of HIV. But I know that the work that Mr. Robinson and others do can reach the targeted audience and touch the lives of many people, especially Black men, the same way their messages stuck with me.
The author, 2nd from left, with members of Postitive EntreEmpowerment, 2023 International Conference on Stigma.
Members of Positive EntreEmpowerment with Dr. Sohail Rana, 2022 International Conference on Stigma.
continues education in medical
Thank you so much for sharing this with the rest of us Temitope. As a heterosexual Black man and 38-year survivor of HIV I appreciate your insight and your passion on this subject.
Thank you!
Thanks, again, Temitope you have truly accomplished a great feat with this article, our group has been growing in participation and activities, we have two members attending AIDS WATCH for the first time. They also presented at the International conference on Stigma last year. This was their first conference of this magnitude.
This is great work by our brothers ,indeed stigma is very high especially from Africa where I come from.We need to join efforts and fight stigma that’s how we can end aids if not so then the number of hiv infections will keep on rising.we need to fight this together not single handedly.
We need to pass and get the information for us to succeed.
I am really touched by the document. I thought it is only in Africa where accurate HIV information is lacking.
We have come a long way and hope we shall eliminate stigma all the same
Great article! Keep up the great work and keep striving and thriving in this uninformed space called life.❤️❤️❤️ This!