More than 1.2 million Americans currently live with HIV. Though there is no cure, through adequate screenings, education and treatments, people with HIV are able to live an average lifespan.
In the 1980s, HIV-related myths and misinformation led to an increase in stigmas and discrimination toward affected populations. Those stigmas remain pervasive today, interfering with HIV-positive peoples’ quality of life even with significant improvements in screenings and treatments over the years.
“Treatments are so mainstream now,” says Emery Chang, MD in Internal Medicine and Pediatrics and assistant clinical professor at the UCLA Center for Clinical AIDS Research and Education (CARE). “But there are impacts that may be hard to measure in a health care setting, like shame, worry of disclosure or discrimination.”
Dr. Chang believes that comprehensive care for people with HIV goes beyond medical treatment. Through the CARE Center, a state-of-the-art medical site dedicated to advancing research and education for people living with HIV and AIDS, patients can access a coordination team that links them to services like transportation, mental health, support groups, legal services and more.
Beyond the individual patient, the center utilizes community partnerships and relationships to extend outreach to various communities for resources to testing, treatment, care, support groups and education.
With trust, transparent communication and easier access to clinical trials and treatments, researchers and providers are hopeful the conversations around HIV will change in a way that leads to better outcomes for patients.
‘The drugs have gotten so much better’
In recent years, a few known treatments have been shown to mitigate transmission:
- Pre-exposure prophylaxis (PrEP) – a combination of antiretroviral medications which helps stop the virus from establishing a permanent infection in the body. It is for people who don't yet have HIV but are at risk of getting it.
- Post-exposure prophylaxis (PEP) – an emergency medication that must be started within 72 hours of a potential HIV exposure and taken daily for a month to prevent HIV from establishing in the body.
Once someone has HIV, a combination of medications, often called antiretroviral therapy (ART), can make the HIV virus dormant and unable to replicate. This is called “viral suppression” when the viral load is nearly undetectable.
“The drugs have gotten so much better, in terms of serious day-to-day management of the virus itself, that now I’m just a plain internal medicine doctor in a lot of ways,” says Ardis Moe, MD, associate professor of medicine and infectious disease physician at the CARE Center. “Most of what I do is worry about people's cholesterol.”
Getting and keeping an undetectable viral load requires work and commitment, and it helps to have support from others.
“It makes a difference when someone is looking out for you,” says Sae Takada, MD, PhD, assistant professor of medicine at UCLA, and primary care provider at the West Los Angeles Veterans Affairs Medical Center Homeless Patient Aligned Care Team.
Dr. Takada notes that social support is critical to managing HIV and ridding stigma, as it is for other challenging health conditions such as cancer or diabetes.
“I see people who aren’t able to tell anyone that they have HIV and they feel like they have to keep this secret,” Dr. Takada says. “That isolation can be really harmful.”
How stigma affects care
Stigma can be a debilitating barrier to care. It may manifest internally – isolation and shame – and externally, in lack of acceptance from family, partners and social circles.
According to Brandon Ito, MD, MPH, assistant clinical professor of psychiatry in the Department of Psychiatry and Biobehavioral Sciences at UCLA, HIV-related stigma has been associated with emotional and mental distress, higher rates of depression, lower physical health and quality of life, lower access and usage of health services, and lower adherence to antiretroviral medications.
Lower levels of adherence to medications are more likely to occur when there is an extended period of time between when someone first learns of their condition and when they receive treatment. That delay in seeking treatment is often due to stress caused by stigma.
Nina Harawa, PhD, MPH, professor at the David Geffen School of Medicine at UCLA and Charles R. Drew University of Medicine and Science, says a variety of social and environmental stressors intensify stigma and thus, impact treatment. Such stressors include racism, homophobia, economic stress, substance disorders, mental illness, homelessness, incarceration, and now the COVID-19 pandemic.
For instance, about 60% of non-elderly people receiving care for HIV fall into the lowest of income brackets. “You have people asking themselves if it’s worth taking off work to get medical care,” Dr. Harawa says. “Because more often than not, taking off work means not getting paid.”
Even once people seek out treatment, Dr. Harawa says that stigma makes it challenging for them to comfortably take their medication in front of others, to explain why they need a ride to the clinic, or why they visit the doctor every few months.
Stigma associated with homophobia and addiction may also lead positive patients to be fearful of discussing their HIV status. “From early on, HIV, gay men and drug use were essentially linked in many, if not every, narrative that was out there,” says Dr. Ito.
To challenge stigma is to challenge the narratives that get retold.
Addressing stigmas before they begin
A health care provider may be the only person to whom a patient is able to disclose their diagnosis and behaviors. Maintaining a trusted relationship with patients can make all the difference in their outlook and ability to adhere to treatment.
“I try to normalize HIV testing with all my patients,” Dr. Takada says. She follows recommendations by the CDC on testing for HIV all individuals between the ages of 15 and 65 at least once, as part of routine health care.
The goal for health care providers – aside from a cure – is to discuss prevention early and often, diagnose as early as possible, treat effectively and prevent new transmissions by using interventions like PrEP and PEP.
Dr. Moe says that what sets UCLA Health apart from other providers is that patients have access to the latest clinical trials in groundbreaking HIV research.
“It’s what got us funded in the 1980s,” she says, referring to the birth of what is now the CARE Center in 1981. Interdisciplinary teams of clinicians and researchers across the UCLA Health network have been dedicated to furthering work on HIV – for a cure and to end stigma – for decades, and their work continues today.
“I’m always reminded how important our role can be for each individual,” Dr. Harawa says. “We can’t forget our impact.”