Boosting HIV Prevention by Shedding the Stigma

Updated on March 23, 2024

Human immunodeficiency virus, which is more commonly known as HIV, is one of many preventable chronic health issues affecting people around the world today. However, two factors set it apart.

First, HIV is different because it is 100 percent preventable. Unlike diseases such as Alzheimer’s, Parkinson’s, Multiple Sclerosis, and Lupus, the medical community knows exactly what causes HIV and has developed solid steps to prevent new infections.

Second, HIV is different because of its stigma, as no other preventable chronic health issue carries the shame, blame, or judgment of HIV. For those who have acquired HIV, the stigma often leads to depression, isolation, and thoughts of self-harm, while the stigma adds unnecessary challenges to prevention for others who have not.

“Stigma is the real disease we fight every day,” says Lisa Barr, Executive Director of the Hope and Help Center of Central Florida. “With HIV, the stigma is caused by fear. People are often labeled or blamed for doing something wrong, or afraid that what they saw in the 1980s as HIV and AIDS surfaced still holds true, and that fear keeps people from getting tested, getting care, and protecting themselves.”

Hope & Help assists thousands of patients across Florida with the prevention and treatment of HIV and other sexually transmitted infections. It is one of the most comprehensive HIV/STI service organizations in Florida, serving patients with a full medical clinic that offers testing, education, prevention, case management, and support group services.

“There is no shame associated with being diabetic or hypertensive,” Barr says, “yet that shame persists with HIV. The stigma sets it apart and makes the important work being done to prevent HIV much more challenging.”

Shifting the spotlight to HIV prevention

The negative impact of the stigma surrounding HIV cannot be overstated. To avoid shame, many people avoid the testing necessary to diagnose HIV and the steps required to stop its spread, both of which are essential components of HIV prevention. As a result, the most recent statistics show that globally, 1.3 million people acquired HIV in 2022 — an alarming 3,500 per day — despite the availability of a wide range of prevention tools.

“Prevention is the key to ending the HIV epidemic,” Barr says. “For sexually active people, talking with your partner to understand each other’s sexual health status is first and foremost. HIV testing should be done every three months, but prevention starts with taking ownership of your sexual health.”

For example, sharing contaminated needles or having unprotected vaginal or anal sex are the methods that most often lead to HIV infection. Those who have another sexually transmitted disease — such as syphilis, chlamydia, or gonorrhea — have an increased risk of infection because those conditions can cause a sore or break in the skin that facilitates infection.

Wearing a condom for each sex act is the next best thing to abstinence for preventing exposure, although not 100 percent guaranteed. For those who fear they have been exposed to HIV, post-exposure prophylaxis (PEP) lowers the risk of infection through a 28-day antiretroviral medication regimen, but must begin with 72 hours of exposure to be effective.

Pre-exposure prophylaxis (PrEP) is a medication that can be taken by those who are at a higher risk of infection. When taken consistently and as prescribed, PrEP lowers the chances of contracting HIV from sex by 99 percent. For intravenous drug users, PreP lowers the chance of infection by approximately 74 percent.

“In a perfect world where HIV was treated like any other preventable disease, people would be better prepared to prevent infection,” Barr says. “HIV testing would occur during every doctor’s appointment, ER visit, or routine lab test. School health programs, parents, teachers, and friends would make sure everyone had sexual health awareness, and education, and knew their status. Those living with HIV would have ready access to the support needed to get into and stay in treatment, enabling them to reach viral suppression and no longer be capable of infecting others.”

Acknowledging the broad reach of the HIV epidemic

Another factor that makes HIV unique among preventable health issues is the fact that anyone, anywhere in the world, and at any age can acquire HIV.

“HIV does not discriminate,” Barr warns. “Anyone can acquire HIV from someone who is living with the virus and not virally suppressed, through exchange of bodily fluids such as blood, semen, vaginal secretions, or breast milk. Until people understand this, prevention efforts will not be as effective as they can be.”

Understanding who has an increased risk of infection can also help with HIV prevention. Statistics show that men who have sex with men are the largest group who have contracted HIV, with heterosexual men as the second-largest group. Black/African-American people, who make up 40 percent of the infected population, and Hispanic/Latino people, who make up 29 percent, are disproportionately impacted by HIV.

The age group most affected is people 13 to 34, who accounted for more than half of new HIV diagnoses during 2021. Those living in metropolitan areas also have a higher risk of exposure, as do those living in the Southern US.

“While HIV is a chronic disease, it is still one that can be managed with proper care,” Barr says. “Seeking the help of medical professionals as soon as possible will get you on the road to the medical, emotional, and social support you need. Above all else, remember HIV does not define you, limit you, or stigmatize you. It’s a health issue, nothing more.”

Lisa Barr
Lisa Barr
Lisa Barr is the Executive Director at Hope and Help Center of Central Florida, Inc. d/b/a Hope & Help. She has the privilege of leading an incredible team of talented, compassionate, and dedicated nonprofit healthcare professionals who make a difference every day. For over nine years, she has been overseeing the strategic planning, implementation, risk management, and organizational development of this vital community resource that provides HIV/STD prevention, education, testing, and treatment services. With an MBA from The Johns Hopkins University and a background in business development, marketing, and grant writing, Barr brings a combination of analytical skills, strategic thinking, and creative problem-solving to her role. She is passionate about enhancing the quality of life and health outcomes of Hope & Help’s clients, partners, and staff, as well as expanding the organization’s reach and impact in the region. Her mission is to foster a culture of excellence, innovation, and collaboration that enables Hope & Help to fulfill its vision of a world without HIV/AIDS.