It’s been more than four decades since the first major headline about a new infectious disease appeared in the news in July 1981. At the time, doctors still didn’t know about HIV and characterized the infection as a “rare and often rapidly fatal form of cancer” diagnosed in 41 gay men in New York and California.
By the end of 1981, 42,000 people were living with diagnosed or undiagnosed HIV in the U.S., according to Centers for Disease Control and Prevention estimates. There were 20,000 new HIV diagnoses that year. In 1992, AIDS became the number one cause of death among young men in the United States. The epidemic reached its peak in 1995, when more than 45,000 people died from the infection.
The number of people infected with HIV has declined over the years and far fewer people die of AIDS as more people are receiving appropriate treatment. HIV/AIDS was the eighth leading cause of death worldwide in 2010 and dropped to 14th in 2019. But despite progress toward treating and prevention, HIV remains a major public health concern. And as with many other health issues, there are racial, gender and geographic disparities in HIV care continuum. It’s important for journalists to keep covering this ongoing epidemic locally, nationally and internationally.
Recent disruptions in treatment and prevention
There’s still no cure for HIV infection, nor a vaccine against it.
But there is effective treatment. HIV medicine is called antiretroviral therapy, or ART, and is prescribed as a single pill or combination of medications from several drug classes. HIV medicine reduces the amount of HIV in the body to very low levels, helping the immune system prevent illness.
There is also pre-exposure prophylaxis, or PrEP, a group of medications in pill or injection form to prevent HIV infection. PrEP is for people who don’t have HIV but are at risk of getting it through sex or injection drug use. It was approved for use in the U.S. in 2012.
However, the COVID-19 pandemic disrupted HIV services, including testing and access to care.
Moreover, on March 30, Reed O’Connor, a federal judge in Texas, blocked a requirement under the Affordable Care Act that covered preventive health services at no cost to patients, including cancer screenings, routine screening for sexually transmitted infections, and PrEP.
“If the plaintiffs prevail on either the constitutional or the religious claims, the government’s ability to require insurance plans to cover evidence-based preventive services without cost-sharing may be limited,” write Laurie Sobel and colleagues in an explainer for the Kaiser Family Foundation.
While following the case, health reporters should also look into local HIV data kept by state health departments, and speak with local HIV testing and advocacy groups about disparities, availability of services such as testing, and access to care.
“The fundamentals of the HIV care continuum are first testing and identifying the people who are living with it — and there’s a dearth of testing,” says Jona Tanguay, a health care provider and HIV specialist at Whitman-Walker Health, a nonprofit community health center in Washington, D.C.
If someone is diagnosed with HIV, then it’s a matter of having access to care and people who can help them navigate the health care system. This is especially true for people who are under-insured and have high-deductible insurance plans, says Tanguay, who is also vice president for education at GLMA, previously known as the Gay & Lesbian Medical Association.
Some key stats: disparities in the prevalence of HIV
Worldwide, about 0.7% of adults between 15 and 49 years old — 38.4 million people — lived with HIV in 2021, according to the World Health Organization.
About 1.2 million people in the U.S. lived with an HIV infection and there were 34,800 new cases in 2019, which is the latest available year for U.S. HIV data, according to the CDC.
In 2019, the majority of new HIV infections in the U.S. occurred in the South — Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia and West Virginia.
The highest rate of new infections were among Black Americans (42.1%), followed by Hispanic and Latino people (21.7%) and multiracial people (18.4%), according to the CDC. In the U.S., gay, bisexual, and other men who report male-to-male sexual contact are disproportionately affected by HIV. About 70% of new HIV infections in 2019 were among gay and bisexual men, according to the CDC.
Globally, about one in six people with HIV don’t know that they are infected. Two-thirds of all people living with HIV are in Sub-Saharan Africa, followed by Asia and the Pacific. In eastern and southern Africa, 79% of new HIV infections were among girls between 10 and 19 years old in 2017, according to UNAIDS, a leading global effort to end AIDS as a public health threat by 2030.
It’s important for journalists to let their audiences know that HIV can affect anyone regardless of sexual orientation, race, ethnicity, gender or age. But certain groups are at higher risk for HIV because of particular factors.
Some of the main drivers behind the disparities are social and structural issues, such as stigma around HIV, homophobia, discrimination, poverty and limited access to high-quality health care.
“The most important thing for journalists to talk about is about basic health education and why people aren’t getting tested,” Tanguay said. “Why don’t people know where the testing centers are? And what’s stopping people from understanding how to take charge of their sexual health in their community, because that’s the very first step in that continuum and that’s the easiest step to solve. It’s the cheapest step to solve and we haven’t fully invested in solving that problem.”
Below, we’ve highlighted several studies on HIV and PrEP to help journalists bolster their reporting.
Progress Toward Eliminating HIV as a Global Public Health Threat Through Scale-Up of Antiretroviral Therapy and Health System Strengthening Supported by the U.S. President’s Emergency Plan for AIDS Relief — Worldwide, 2004–2022
Helen Chun, et al. CDC’s Morbidity and Mortality Weekly Report, March 2023.
The study: In 2004, The U.S. President’s Emergency Plan for AIDS Relief, or PEPFAR, began providing HIV antiretroviral therapy globally. President George W. Bush announced the effort during his 2003 State of the Union. PEPFAR is the largest commitment by any nation to address a single disease, the authors write. The report investigates the program’s impact by analyzing data from all PEPFAR programs in additional to six countries that have conducted HIV impact assessment surveys.
The findings: As of September 2022, about 20.2 million people with HIV in 54 countries were receiving PEPFAR-supported antiretroviral therapy, a 300-fold increase from the 66,550 reported in September 2004. In 2022, the PEPFAR-supported workforce included 371,760 health care workers in 70,000 communities, clinics and elsewhere. Researchers identified gaps in viral load coverage in certain groups, including children younger than 10, men, pregnant women, men who have sex with men, people in prisons and transgender people.
Viral load coverage is the proportion of eligible people with HIV infection who get tested to monitor the amount of HIV in their blood.
The overall viral load coverage rate was 80%. It was 79% for children younger than 10; 78% for men; 31% for pregnant women; 78% for men who have sex with men; 57% for people in prisons; and 67% for transgender people.
The authors write: “Despite these achievements, 10 million persons with HIV infection worldwide (in countries with and without PEPFAR support) were not receiving ART in 2021, and gaps exist among certain subpopulations. Global HIV control cannot be achieved without prioritizing health equity.”
HIV Pre-Exposure Prophylaxis Use on a Global Scale Among Men Who Have Sex with Men: A Systematic Review and Meta-Analysis
Yiting Huang, et al. AIDS Patient Care and STDs, April 2023.
The study: The authors sifted through several research databases including PubMed, Embase and Web of Science and included 147 studies that reported on the use of HIV pre-exposure prophylaxis, or PrEP among men who have sex with men before April 2022. Their goal was to summarize the proportion and trends in use of PrEP around the world. They focused on men who have sex with men, or MSM, because they are 26 times more likely to be infected with HIV than the general population, making prevention a key tool to stop the spread of the virus. By 2019, 44 countries had approved the use of PrEP for HIV prevention, but awareness about the medications remain low and uptake is still moderate.
The findings: In total, one in nine men who have sex with men had a history of using PrEP. Among those who were eligible for PrEP, one in six had used it. The analysis also showed that each year, more men in this group reported a history of using PrEP. Factors associated with using PrEP among MSM are higher socioeconomic status, full-time employment or higher education, health insurance and regular medical providers. Deterrents for PrEP include stigma, such as concerns about being perceived as promiscuous.. In 2020, about 25% of the 1.2 million people eligible for PrEP were prescribed it, compared to only about 3% in 2015, CDC data shows.
The authors write: “We observed that the number of new HIV diagnoses among MSM per year in some countries decreased after PrEP use was approved, underscoring the importance for all countries to approve the use of PrEP. Second, our findings emphasized the importance of formulating better policies to promote PrEP use, especially reducing the financial burden for PrEP users to access medication and services.”
“Why You Putting This Drug in Your Body to Fight off Something that You Don’t Have?” Perceptions About PrEP Use Among Black and Latino Men Who Have Sex with Men in the U.S. South
Deborah Gelaude and Damian Denson. Journal of Homosexuality, December 2021.
The study: Researchers look back at the results of a 2016 study of 99 Black and 51 Latino men who have sex with men, located in Atlanta; Baton Rouge and New Orleans, Louisiana; Jackson, Mississippi; and Miami, Florida. The original study is based on one-hour interviews, conducted between July and September 2016. This study specifically looks at what the men shared about their perception of PrEP for HIV prevention. Although PrEP use has increased in recent years, its uptake has been slow and uneven, especially in the South. Factors impacting PrEP uptake include willingness of providers to prescribe PrEP, cost and accessibility, concern over side effects, perception of having a low-risk of HIV infection, and stigma related to perceived increased risk behavior. Also, disparities in access to medical services and mistrust of the medical providers and pharmaceutical companies play a role.
The findings: Of all the participants, 15% used PrEP, 55% said they were aware of it and 30% had never heard of it. Those who used PrEP were more likely to have education beyond high school, be employed, have health insurance and stable housing and be tested for HIV every 3 to 6 months. Among those who were aware of PrEP, 66% were Black and 34% were Latino. Among those who said they were previous or current PrEP users, 82% were Black and 18% were Latino.
The study also quotes several participants on the reasons why they do or don’t use PrEP.
- A Latino man from Miami, Florida, considered PrEP part of a larger conspiracy to infect men with HIV: “It is convenient for them that people get sick … there is no cure for AIDS … it is convenient for the pharmaceutical industry to become millionaires.”
- A Black man from Jackson, Mississippi, was among those who cited access and cost as barriers: “I would love to get on PrEP, you know, but I don’t have insurance. I honestly would. I don’t have the funds.”
- A Black man from New Orleans, Louisiana, was among those who considered PrEP as an insurance policy: “I love to be protected. I know that I’m conscientious most of the time of what’s going on in my life and my surroundings. But I know there are times where I’m not. And I think that that’s like … the security camera.”
- Many also mentioned stigma attached to PrEP, creating a perception of someone who’s more likely to engage in risky sexual behaviors. A Latino man from Miami said: “I think a lot of people go on it seem to increase their sexual activity because they have that peace of mind because they think that taking the PrEP and you know, might have a psychological reverse effect there.”
The authors write: “Our findings also suggest that mistrust of the medical establishment disrupts the potential impact of PrEP among Black and Latino MSM in the South. Mistrust is an efficient vehicle for spreading misinformation and can be addressed directly by providers and public health agencies, alongside acknowledgment of its historical context and current lived experience.”
Training Obstetrician Gynecologists in HIV PrEP (pre-exposure prophylaxis): A 2-year Experience
Francesca Silvestri, et al. Sexually Transmitted Infections, April 2023.
The study: Researchers evaluate the efficacy of PrEP training session for 63 Ob-Gyns in an academic medical center in New York City from 2019 to 2021. The 1-hour training sessions were conducted by HIV specialists during in-person or online lectures. Participants were then surveyed after the training about their PrEP knowledge and comfort with prescribing and managing patients. Between 2015 and 2019, 18% of new HIV diagnoses in the U.S. were among women. Ob-Gyns are uniquely positioned to prescribe PrEP to women, the authors write.
The findings: Of the 63 participants, 13% had ever prescribed PrEP, even though 95% were aware of it. After the training, the majority of the respondents reporting feeling ‘comfortable’ or ‘very comfortable’ in determining who would be eligible for PrEP, prescribing the medication and following up with the patients.
The authors write: “Although this 1-hour training was enough to make the majority of providers comfortable in prescribing PrEP, not 100% of them were. Perhaps additional trainings or other modalities are needed in order to increase this proportion. Other work has identified clinic structural barriers to implementation of PrEP services such as provider time constraints, reluctance to prescribe PrEP and discomfort with counseling. This highlights the need for increased staff and leadership support and alignment of PrEP services with organizational missions as aspects to consider when structuring implementation guidelines.”
“HIV Pre-Exposure Prophylaxis in the Emergency Department: A Systematic Review,” Mirinda Ann Gormley, et al. Annals of Emergency Medicine, April 2023.
“Ending the HIV Epidemic PrEP Equity Recommendations From a Rapid Ethnographic Assessment of Multilevel PrEP Use Determinants Among Young Black Gay and Bisexual Men in Atlanta, GA,” Miranda Hill, et al. PLOS One, March 2023.
“Changes in cost and insurance challenges to cover PrEP between 2019 and 2021,” Alexa D’Angelo, et al. Journal of Acquired Immune Deficiency Syndromes, March 2023.
“The Pre-Exposure Prophylaxis (PrEP) Care Continuum among English-Speaking Latino Sexual Minority Men in the United States (2014-2020),” Jane J. Lee, et al. Journal of Acquired Immune Deficiency Syndromes, March 2023.
“Prediction of Sex and the Potential Use of On-Demand PrEP Among Young Men Who Have Sex With Men in the U.S.,” Bryce Stamp, et al. Journal of Acquired Immune Deficiency Syndromes, March 2023.
“Willingness to Use and Preferences for Long-Acting Injectable PrEP Among Sexual and Gender Minority Populations in the Southern United States, 2021–2022: Cross-Sectional Study,” Paige Schoenberg, et al. Journal of the International AIDS Society, March 2023.
“National HIV/AIDS Strategy for the United States 2022-2025,” The White House, 2021.
“Donor Government Funding for HIV in Low- and Middle-Income Countries in 2021,” Kaiser Family Foundation, July 2022.
“Global AIDS Strategy 2021-2026. End Inequalities. End AIDS,” UNAIDS, March 2021.
“The U.S. Ending the HIV Epidemic (EHE) Initiative: What You Need to Know,” Kaiser Family Foundation, February 2021.
“The Ryan White HIV/AIDS Program: The Basics,” Kaiser Family Foundation, November 2022.
“Medicaid and People with HIV,” Kaiser Family Foundation, March 2023.
“AIDS Drug Assistance Programs (ADAPs),” Kaiser Family Foundation, August 2017.
“Housing Opportunities for Persons with AIDS Program (HOPWA),” U.S. Department of Housing and Urban Development.