Based on an article by Matt Schur from the AMT Pulse, Fall 2023.
First, the good. Because there’s a whole lot of it.
HIV, the virus that causes AIDS, was once a death sentence. Before treatment efficacy took off in the mid-’90s, the average lifespan for a person diagnosed with AIDS was 18 months. For people with HIV who take treatment today, life expectancy is in the mid- to late-70s, a few years lower than the general population, according to a 2023 report in The Lancet. In just the last decade, the average lifespan for someone with HIV has increased by roughly seven years.
Building this foundation required a perfect confluence of factors in the 1980s and 1990s, says Steven Deeks, MD, Professor of Medicine in Residence at the University of California, San Francisco (UCSF) and a faculty member in the Division of HIV, Infectious Diseases and Global Medicine at Zuckerberg San Francisco General Hospital. “Everybody came to the table at the same time: Activists were highly engaged and effective; funding was pouring in from the National Institutes of Health and other countries; a friendly regulatory environment emerged that encouraged pharmaceutical companies to discover drugs; and a public health system to deliver these drugs was rapidly built. All of a sudden, the disease went from fatal to treatable in literally years. It was dramatic—miraculous.”
Medical progress continues. For instance, people taking a daily pre-exposure prophylaxis (PrEP) pill are almost 100% protected against contracting HIV through sex. When taken as prescribed, antiretroviral drugs can suppress the virus in individuals who have HIV to the point where their sexual partners don’t have to worry about transmission. Plus, there are only a few cases of mother-to-infant HIV transmissions every year in the U.S. due to medical advances.
But the world spends less today fighting HIV and AIDS than it did a decade ago. Roughly 1.2 million people have HIV in the U.S., with 13% unaware of their status. In 2021, 36,136 people in the country were diagnosed with HIV.
The race for a vaccine or cure remains distant. Medical advances will certainly help and continue—daily pills might turn into monthly pills; monthly injections might become annual. But getting across the finish line will likely require human intervention, not just medical.
“There is a lot of work to be done because there are still a lot of new diagnoses and infections every year, and we have the tools to prevent them,” says Marshall Glesby, MD, PhD, Associate Chief of the Division of Infectious Diseases and Director of the Cornell HIV Clinical Trials Unit at Weill Cornell Medicine. “The easiest part, in a way, is having treatment be effective. The bigger challenge is getting all the people diagnosed that need to be diagnosed, getting them care and keeping them on treatment. We need better implementation and accessibility.”
Most At Risk
New infection rates remain stubbornly high. In 2019, the U.S. Department of Health and Human Services launched the “Ending the HIV Epidemic in the U.S.” program, which sought to reduce infections by 75% by 2025 and 90% by 2030; recent data shows the country is unlikely to hit either target.
“The largest unmet need is that some people cannot access and adhere to our otherwise highly effective prevention and treatment options,” Dr. Deeks says. “In the U.S., much of this is due to socioeconomic barriers, particularly in marginalized communities, such as those who are unhoused or homeless, have substance abuse issues or are facing lots of stigma. There are a lot of major social determinants that are having an impact on certain populations, and we need to figure out how to best get these people across the finish line.”
HIV remains especially concentrated in specific at-risk groups. In the U.S., 52% percent of all HIV cases are in the South, according to the CDC. The West (21%), Midwest (14%), and Northeast (14%) pale in comparison. Rural areas, too, are hit hard. “The reason that HIV is rising in the South and Southeast is if you look at a map of poverty in the United States, it almost exactly overlays with our percentage of new HIV infections,” says Monica Gandhi, MD, MPH, Infectious Diseases Doctor, Professor of Medicine, Associate Chief in the Division of HIV, Infectious Diseases and Global Medicine at UCSF. She is also the Director of the UCSF Center for AIDS Research and the Medical Director of the HIV Clinic (“Ward 86”) at San Francisco General Hospital.
Men made up 79% of new infections in 2021. Race and ethnicity are major factors, too: 40% of new diagnoses are among people who are Black/African American, followed by 29% Hispanic/Latino, 25% White, 3% multiracial and 2% Asian. “Poverty, marginalization, being stigmatized, these have always been risk factors for HIV,” Dr. Gandhi says.
A few medications are currently approved as PrEP: Three pills (Truvada, Descovy, a generic Truvada) and Apretude, an injection. PrEP is intended to be taken before someone comes into contact with HIV. While extremely effective when taken as prescribed, many at-risk people can’t or don’t take necessary precautions. For instance, Black and Latino men who have sex with men on average take PrEP less than their peers.
A simple increased awareness of PrEP in at-risk communities can help, Dr. Gandhi says. “Not only among patients but among providers, too. There have been surveys that track uptake in the South and Southeast, and it shows that not only do people not know about PrEP, but some providers aren’t offering PrEP, are not comfortable with PrEP and have not prescribed a lot of PrEP. We need more community and provider awareness.”
Antiretroviral therapy (ART), meanwhile, is used to treat people who have HIV. Treatment can be in the form of a pill or shot and can help control HIV in an individual and prevent the spread to others. ART’s main goal is to reduce a person’s viral load to an undetectable level, meaning the amount of HIV in a person’s blood is too low to be detected by a viral load test, according to the NIH. In 2019, the CDC said: “For persons who achieve and maintain viral suppression, there is effectively no risk of transmitting HIV to their HIV-negative sexual partner.”
Long-acting ART injectables that are administered every four to eight weeks were recently approved. Going into clinics less frequently could substantially increase adherence for at-risk groups. “I’m so excited about the long-acting antiretrovirals,” Dr. Gandhi says. “We’re in a great time in HIV medicine to have these new agents.”
However, the drugs can carry serious side effects and be prohibitively expensive. But Medicaid, Dr. Gandhi says, is “amazing in terms of approving all HIV medications. The states that have approved Medicaid expansion have allowed people to access much-needed HIV prevention and treatment modalities.”
Dr. Gandhi goes on to say: “The combination of treatment and prevention could absolutely end the HIV epidemic.”
One of the biggest barriers to ending the epidemic is the stigma surrounding HIV, particularly with the LGBTQ+ community. For instance, threats of violence against LGBTQ+ individuals are on the rise and intensifying, according to the Department of Homeland Security.
“It kind of feels like we’re going backward to the stigmatization that was around in the 1980s and early 1990s,” Dr. Gandhi says. “When you don’t affirm people’s identity, affirm people by their nature, it’s stigmatizing. It forces people to hide, putting them more at risk for HIV.”
She says such stigma “plays a huge role in racial and ethnic minority communities because if the community itself is not supportive of being gay, you’re essentially not coming out to your family, you’re not accessing healthcare, you’re not going to bring PrEP home. There’s been study after study that shows that disclosing you’re at risk for HIV or have HIV is really helpful to be able to maintain adherence. Even if it’s just disclosing that information to friends and family.”
The more HIV is stigmatized, the worse healthcare becomes. Dr. Deeks points to Uganda, where the president in May signed one of the world’s harshest anti-LGBTQ+ laws, including the death penalty for people with HIV who repeatedly have same-sex relations. “This is forcing those who are most at risk for HIV to go underground, to basically hide from society. People are not going to be able to access prevention or treatment, and HIV is just going to spread dramatically in those communities. These rollbacks in terms of acceptance of people at risk for HIV seems to be happening everywhere now.”
It’s not just societal or family pressures that stigmatize the disease, either. “A lot of people with HIV have internalized stigma, which can really affect their behaviors, engagement with care and ultimately their health outcomes,” Dr. Glesby says.
Ending the epidemic will likely require a combination of prevention and treatment funding, medical breakthroughs and overall political will. But until larger forces move in that direction, more immediate action can be taken and effective on a daily, person to person basis, especially with healthcare providers reducing HIV stigma.
“We, as healthcare workers, need to come together to take action,” says Tia Johnson, MSHS, MLS (AMT), CIC, LSSYB, Director of Infection Prevention, JPS Health Network. She also led the creation of AMT’s new “HIV Explained” course. “We can lead the movement to end the stigma.”
After all, many allied healthcare professionals spend tons of time with people with HIV and AIDS. “Allied healthcare professionals are really the key people to get someone to relax, get them engaged and make sure they know why they’re getting care,” Dr. Deeks says.
It’s critical to create a welcoming environment regardless of a person’s sexual orientation or gender identity, Dr. Glesby says. That includes using person-first language—in essence, using the phrase “person with HIV” and not “HIV-infected person” or even “person living with HIV,” which he says can also carry negative connotations. Dr. Glesby continues: “It may seem silly to focus on language, but language is really important. It affects how they might feel, and it might even affect how we treat them.”
Healthcare professionals should be aware of their body language, too. “It’s important to realize how you address people, how you make eye contact and to create an environment where everyone wants to come back,” Dr. Glesby says.
Johnson adds: “Patients want you to build a relationship. They want to feel like they have a safe place.”
Allied healthcare professionals should understand what prevention looks like, how the disease works, what treatment options are available and be able to educate patients on that, Johnson says. “We know how devastating it can be for a person or their family when there is a diagnosis,” she says. “Healthcare workers should be well-educated on HIV and capable of squashing the biases associated with a diagnosis. This is key for having those difficult conversations with patients and their families. It’s incumbent on us as healthcare workers to be educated and also to educate. That’s how we can really slow the spread.”
AMT’s HIV Resources
In May, AMT launched the interactive e-learning course “HIV Explained,” which covers an overview of HIV, transmission stages, tests and strategies to prevent the spread, and ideas about ending the epidemic.