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• Published: 24 November 2021

A study of awareness on HIV/AIDS among adolescents: A Longitudinal Study on UDAYA data

• Shobhit Srivastava   ORCID: orcid.org/0000-0002-7138-4916 1 ,
• Shekhar Chauhan   ORCID: orcid.org/0000-0002-6926-7649 2 ,
• Ratna Patel   ORCID: orcid.org/0000-0002-5371-7369 3 &
• Pradeep Kumar   ORCID: orcid.org/0000-0003-4259-820X 1  

Scientific Reports volume  11 , Article number:  22841 ( 2021 ) Cite this article

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Acquired Immunodeficiency Syndrome caused by Human Immunodeficiency Virus (HIV) poses a severe challenge to healthcare and is a significant public health issue worldwide. This study intends to examine the change in the awareness level of HIV among adolescents. Furthermore, this study examined the factors associated with the change in awareness level on HIV-related information among adolescents over the period. Data used for this study were drawn from Understanding the lives of adolescents and young adults, a longitudinal survey on adolescents aged 10–19 in Bihar and Uttar Pradesh. The present study utilized a sample of 4421 and 7587 unmarried adolescent boys and girls, respectively aged 10–19 years in wave-1 and wave-2. Descriptive analysis and t-test and proportion test were done to observe changes in certain selected variables from wave-1 (2015–2016) to wave-2 (2018–2019). Moreover, random effect regression analysis was used to estimate the association of change in HIV awareness among unmarried adolescents with household and individual factors. The percentage of adolescent boys who had awareness regarding HIV increased from 38.6% in wave-1 to 59.9% in wave-2. Among adolescent girls, the percentage increased from 30.2 to 39.1% between wave-1 & wave-2. With the increase in age and years of schooling, the HIV awareness increased among adolescent boys ([Coef: 0.05; p  < 0.01] and [Coef: 0.04; p  < 0.01]) and girls ([Coef: 0.03; p  < 0.01] and [Coef: 0.04; p  < 0.01]), respectively. The adolescent boys [Coef: 0.06; p  < 0.05] and girls [Coef: 0.03; p  < 0.05] who had any mass media exposure were more likely to have an awareness of HIV. Adolescent boys' paid work status was inversely associated with HIV awareness [Coef: − 0.01; p  < 0.10]. Use of internet among adolescent boys [Coef: 0.18; p  < 0.01] and girls [Coef: 0.14; p  < 0.01] was positively associated with HIV awareness with reference to their counterparts. There is a need to intensify efforts in ensuring that information regarding HIV should reach vulnerable sub-groups, as outlined in this study. It is important to mobilize the available resources to target the less educated and poor adolescents, focusing on rural adolescents.

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Introduction

Acquired Immunodeficiency Syndrome (AIDS) caused by Human Immunodeficiency Virus (HIV) poses a severe challenge to healthcare and is a significant public health issue worldwide. So far, HIV has claimed almost 33 million lives; however, off lately, increasing access to HIV prevention, diagnosis, treatment, and care has enabled people living with HIV to lead a long and healthy life 1 . By the end of 2019, an estimated 38 million people were living with HIV 1 . More so, new infections fell by 39 percent, and HIV-related deaths fell by almost 51 percent between 2000 and 2019 1 . Despite all the positive news related to HIV, the success story is not the same everywhere; HIV varies between region, country, and population, where not everyone is able to access HIV testing and treatment and care 1 . HIV/AIDS holds back economic growth by destroying human capital by predominantly affecting adolescents and young adults 2 .

There are nearly 1.2 billion adolescents (10–19 years) worldwide, which constitute 18 percent of the world’s population, and in some countries, adolescents make up as much as one-fourth of the population 3 . In India, adolescents comprise more than one-fifth (21.8%) of the total population 4 . Despite a decline projection for the adolescent population in India 5 , there is a critical need to hold adolescents as adolescence is characterized as a period when peer victimization/pressure on psychosocial development is noteworthy 6 . Peer victimization/pressure is further linked to risky sexual behaviours among adolescents 7 , 8 . A higher proportion of low literacy in the Indian population leads to a low level of awareness of HIV/AIDS 9 . Furthermore, the awareness of HIV among adolescents is quite alarming 10 , 11 , 12 .

Unfortunately, there is a shortage of evidence on what predicts awareness of HIV among adolescents. Almost all the research in India is based on beliefs, attitudes, and awareness of HIV among adolescents 2 , 12 . However, few other studies worldwide have examined mass media as a strong predictor of HIV awareness among adolescents 13 . Mass media is an effective channel to increase an individuals’ knowledge about sexual health and improve understanding of facilities related to HIV prevention 14 , 15 . Various studies have outlined other factors associated with the increasing awareness of HIV among adolescents, including; age 16 , 17 , 18 , occupation 18 , education 16 , 17 , 18 , 19 , sex 16 , place of residence 16 , marital status 16 , and household wealth index 16 .

Several community-based studies have examined awareness of HIV among Indian adolescents 2 , 10 , 12 , 20 , 21 , 22 . However, studies investigating awareness of HIV among adolescents in a larger sample size remained elusive to date, courtesy of the unavailability of relevant data. Furthermore, no study in India had ever examined awareness of HIV among adolescents utilizing information on longitudinal data. To the author’s best knowledge, this is the first study in the Indian context with a large sample size that examines awareness of HIV among adolescents and combines information from a longitudinal survey. Therefore, this study intends to examine the change in the awareness level of HIV among adolescents. Furthermore, this study examined the factors associated with a change in awareness level on HIV-related information among adolescents over the period.

Data and methods

Data used for this study were drawn from Understanding the lives of adolescents and young adults (UDAYA), a longitudinal survey on adolescents aged 10–19 in Bihar and Uttar Pradesh 23 . The first wave was conducted in 2015–2016, and the follow-up survey was conducted after three years in 2018–2019 23 . The survey provides the estimates for state and the sample of unmarried boys and girls aged 10–19 and married girls aged 15–19. The study adopted a systematic, multi-stage stratified sampling design to draw sample areas independently for rural and urban areas. 150 primary sampling units (PSUs)—villages in rural areas and census wards in urban areas—were selected in each state, using the 2011 census list of villages and wards as the sampling frame. In each primary sampling unit (PSU), households to be interviewed were selected by systematic sampling. More details about the study design and sampling procedure have been published elsewhere 23 . Written consent was obtained from the respondents in both waves. In wave 1 (2015–2016), 20,594 adolescents were interviewed using the structured questionnaire with a response rate of 92%.

Moreover, in wave 2 (2018–2019), the study interviewed the participants who were successfully interviewed in 2015–2016 and who consented to be re-interviewed 23 . Of the 20,594 eligible for the re-interview, the survey re-interviewed 4567 boys and 12,251 girls (married and unmarried). After excluding the respondents who gave an inconsistent response to age and education at the follow-up survey (3%), the final follow-up sample covered 4428 boys and 11,864 girls with the follow-up rate of 74% for boys and 81% for girls. The effective sample size for the present study was 4421 unmarried adolescent boys aged 10–19 years in wave-1 and wave-2. Additionally, 7587 unmarried adolescent girls aged 10–19 years were interviewed in wave-1 and wave-2 23 . The cases whose follow-up was lost were excluded from the sample to strongly balance the dataset and set it for longitudinal analysis using xtset command in STATA 15. The survey questionnaire is available at https://dataverse.harvard.edu/file.xhtml?fileId=4163718&version=2.0 & https://dataverse.harvard.edu/file.xhtml?fileId=4163720&version=2.0 .

Outcome variable

HIV awareness was the outcome variable for this study, which is dichotomous. The question was asked to the adolescents ‘Have you heard of HIV/AIDS?’ The response was recorded as yes and no.

Exposure variables

The predictors for this study were selected based on previous literature. These were age (10–19 years at wave 1, continuous variable), schooling (continuous), any mass media exposure (no and yes), paid work in the last 12 months (no and yes), internet use (no and yes), wealth index (poorest, poorer, middle, richer, and richest), religion (Hindu and Non-Hindu), caste (Scheduled Caste/Scheduled Tribe, Other Backward Class, and others), place of residence (urban and rural), and states (Uttar Pradesh and Bihar).

Exposure to mass media (how often they read newspapers, listened to the radio, and watched television; responses on the frequencies were: almost every day, at least once a week, at least once a month, rarely or not at all; adolescents were considered to have any exposure to mass media if they had exposure to any of these sources and as having no exposure if they responded with ‘not at all’ for all three sources of media) 24 . Household wealth index based on ownership of selected durable goods and amenities with possible scores ranging from 0 to 57; households were then divided into quintiles, with the first quintile representing households of the poorest wealth status and the fifth quintile representing households with the wealthiest status 25 .

Statistical analysis

Descriptive analysis was done to observe the characteristics of unmarried adolescent boys and girls at wave-1 (2015–2016). In addition, the changes in certain selected variables were observed from wave-1 (2015–2016) to wave-2 (2018–2019), and the significance was tested using t-test and proportion test 26 , 27 . Moreover, random effect regression analysis 28 , 29 was used to estimate the association of change in HIV awareness among unmarried adolescents with household factors and individual factors. The random effect model has a specific benefit for the present paper's analysis: its ability to estimate the effect of any variable that does not vary within clusters, which holds for household variables, e.g., wealth status, which is assumed to be constant for wave-1 and wave-2 30 .

Table 1 represents the socio-economic profile of adolescent boys and girls. The estimates are from the baseline dataset, and it was assumed that none of the household characteristics changed over time among adolescent boys and girls.

Figure  1 represents the change in HIV awareness among adolescent boys and girls. The percentage of adolescent boys who had awareness regarding HIV increased from 38.6% in wave-1 to 59.9% in wave-2. Among adolescent girls, the percentage increased from 30.2% in wave-1 to 39.1% in wave-2.

The percenate of HIV awareness among adolescent boys and girls, wave-1 (2015–2016) and wave-2 (2018–2019).

Table 2 represents the summary statistics for explanatory variables used in the analysis of UDAYA wave-1 and wave-2. The exposure to mass media is almost universal for adolescent boys, while for adolescent girls, it increases to 93% in wave-2 from 89.8% in wave-1. About 35.3% of adolescent boys were engaged in paid work during wave-1, whereas in wave-II, the share dropped to 33.5%, while in the case of adolescent girls, the estimates are almost unchanged. In wave-1, about 27.8% of adolescent boys were using the internet, while in wave-2, there is a steep increase of nearly 46.2%. Similarly, in adolescent girls, the use of the internet increased from 7.6% in wave-1 to 39.3% in wave-2.

Table 3 represents the estimates from random effects for awareness of HIV among adolescent boys and girls. It was found that with the increases in age and years of schooling the HIV awareness increased among adolescent boys ([Coef: 0.05; p  < 0.01] and [Coef: 0.04; p  < 0.01]) and girls ([Coef: 0.03; p  < 0.01] and [Coef: 0.04; p  < 0.01]), respectively. The adolescent boys [Coef: 0.06; p  < 0.05] and girls [Coef: 0.03; p  < 0.05] who had any mass media exposure were more likely to have an awareness of HIV in comparison to those who had no exposure to mass media. Adolescent boys' paid work status was inversely associated with HIV awareness about adolescent boys who did not do paid work [Coef: − 0.01; p  < 0.10]. Use of the internet among adolescent boys [Coef: 0.18; p  < 0.01] and girls [Coef: 0.14; p  < 0.01] was positively associated with HIV awareness in reference to their counterparts.

The awareness regarding HIV increases with the increase in household wealth index among both adolescent boys and girls. The adolescent girls from the non-Hindu household had a lower likelihood to be aware of HIV in reference to adolescent girls from Hindu households [Coef: − 0.09; p  < 0.01]. Adolescent girls from non-SC/ST households had a higher likelihood of being aware of HIV in reference to adolescent girls from other caste households [Coef: 0.04; p  < 0.01]. Adolescent boys [Coef: − 0.03; p  < 0.01] and girls [Coef: − 0.09; p  < 0.01] from a rural place of residence had a lower likelihood to be aware about HIV in reference to those from the urban place of residence. Adolescent boys [Coef: 0.04; p  < 0.01] and girls [Coef: 0.02; p  < 0.01] from Bihar had a higher likelihood to be aware about HIV in reference to those from Uttar Pradesh.

This is the first study of its kind to address awareness of HIV among adolescents utilizing longitudinal data in two indian states. Our study demonstrated that the awareness of HIV has increased over the period; however, it was more prominent among adolescent boys than in adolescent girls. Overall, the knowledge on HIV was relatively low, even during wave-II. Almost three-fifths (59.9%) of the boys and two-fifths (39.1%) of the girls were aware of HIV. The prevalence of awareness on HIV among adolescents in this study was lower than almost all of the community-based studies conducted in India 10 , 11 , 22 . A study conducted in slums in Delhi has found almost similar prevalence (40% compared to 39.1% during wave-II in this study) of awareness of HIV among adolescent girls 31 . The difference in prevalence could be attributed to the difference in methodology, study population, and study area.

The study found that the awareness of HIV among adolescent boys has increased from 38.6 percent in wave-I to 59.9 percent in wave-II; similarly, only 30.2 percent of the girls had an awareness of HIV during wave-I, which had increased to 39.1 percent. Several previous studies corroborated the finding and noticed a higher prevalence of awareness on HIV among adolescent boys than in adolescent girls 16 , 32 , 33 , 34 . However, a study conducted in a different setting noticed a higher awareness among girls than in boys 35 . Also, a study in the Indian context failed to notice any statistical differences in HIV knowledge between boys and girls 18 . Gender seems to be one of the significant determinants of comprehensive knowledge of HIV among adolescents. There is a wide gap in educational attainment among male and female adolescents, which could be attributed to lower awareness of HIV among girls in this study. Higher peer victimization among adolescent boys could be another reason for higher awareness of HIV among them 36 . Also, cultural double standards placed on males and females that encourage males to discuss HIV/AIDS and related sexual matters more openly and discourage or even restrict females from discussing sexual-related issues could be another pertinent factor of higher awareness among male adolescents 33 . Behavioural interventions among girls could be an effective way to improving knowledge HIV related information, as seen in previous study 37 . Furthermore, strengthening school-community accountability for girls' education would augment school retention among girls and deliver HIV awareness to girls 38 .

Similar to other studies 2 , 10 , 17 , 18 , 39 , 40 , 41 , age was another significant determinant observed in this study. Increasing age could be attributed to higher education which could explain better awareness with increasing age. As in other studies 18 , 39 , 41 , 42 , 43 , 44 , 45 , 46 , education was noted as a significant driver of awareness of HIV among adolescents in this study. Higher education might be associated with increased probability of mass media and internet exposure leading to higher awareness of HIV among adolescents. A study noted that school is one of the important factors in raising the awareness of HIV among adolescents, which could be linked to higher awareness among those with higher education 47 , 48 . Also, schooling provides adolescents an opportunity to improve their social capital, leading to increased awareness of HIV.

Following previous studies 18 , 40 , 46 , the current study also outlines a higher awareness among urban adolescents than their rural counterparts. One plausible reason for lower awareness among adolescents in rural areas could be limited access to HIV prevention information 16 . Moreover, rural–urban differences in awareness of HIV could also be due to differences in schooling, exposure to mass media, and wealth 44 , 45 . The household's wealth status was also noted as a significant predictor of awareness of HIV among adolescents. Corroborating with previous findings 16 , 33 , 42 , 49 , this study reported a higher awareness among adolescents from richer households than their counterparts from poor households. This could be because wealthier families can afford mass-media items like televisions and radios for their children, which, in turn, improves awareness of HIV among adolescents 33 .

Exposure to mass media and internet access were also significant predictors of higher awareness of HIV among adolescents. This finding agrees with several previous research, and almost all the research found a positive relationship between mass-media exposure and awareness of HIV among adolescents 10 . Mass media addresses such topics more openly and in a way that could attract adolescents’ attention is the plausible reason for higher awareness of HIV among those having access to mass media and the internet 33 . Improving mass media and internet usage, specifically among rural and uneducated masses, would bring required changes. Integrating sexual education into school curricula would be an important means of imparting awareness on HIV among adolescents; however, this is debatable as to which standard to include the required sexual education in the Indian schooling system. Glick (2009) thinks that the syllabus on sexual education might be included during secondary schooling 44 . Another study in the Indian context confirms the need for sex education for adolescents 50 , 51 .

Limitations and strengths of the study

The study has several limitations. At first, the awareness of HIV was measured with one question only. Given that no study has examined awareness of HIV among adolescents using longitudinal data, this limitation is not a concern. Second, the study findings cannot be generalized to the whole Indian population as the study was conducted in only two states of India. However, the two states selected in this study (Uttar Pradesh and Bihar) constitute almost one-fourth of India’s total population. Thirdly, the estimates were provided separately for boys and girls and could not be presented combined. However, the data is designed to provide estimates separately for girls and boys. The data had information on unmarried boys and girls and married girls; however, data did not collect information on married boys. Fourthly, the study estimates might have been affected by the recall bias. Since HIV is a sensitive topic, the possibility of respondents modifying their responses could not be ruled out. Hawthorne effect, respondents, modifying aspect of their behaviour in response, has a role to play in HIV related study 52 . Despite several limitations, the study has specific strengths too. This is the first study examining awareness of HIV among adolescent boys and girls utilizing longitudinal data. The study was conducted with a large sample size as several previous studies were conducted in a community setting with a minimal sample size 10 , 12 , 18 , 20 , 53 .

The study noted a higher awareness among adolescent boys than in adolescent girls. Specific predictors of high awareness were also noted in the study, including; higher age, higher education, exposure to mass media, internet use, household wealth, and urban residence. Based on the study findings, this study has specific suggestions to improve awareness of HIV among adolescents. There is a need to intensify efforts in ensuring that information regarding HIV should reach vulnerable sub-groups as outlined in this study. It is important to mobilize the available resources to target the less educated and poor adolescents, focusing on rural adolescents. Investment in education will help, but it would be a long-term solution; therefore, public information campaigns could be more useful in the short term.

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This paper was written using data collected as part of Population Council’s UDAYA study, which is funded by the Bill and Melinda Gates Foundation and the David and Lucile Packard Foundation. No additional funds were received for the preparation of the paper.

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Contributions

Conception and design of the study: S.S. and P.K.; analysis and/or interpretation of data: P.K. and S.S.; drafting the manuscript: S.C., and R.P.; reading and approving the manuscript: S.S., P.K., S.C. and R.P.

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Srivastava, S., Chauhan, S., Patel, R. et al. A study of awareness on HIV/AIDS among adolescents: A Longitudinal Study on UDAYA data. Sci Rep 11 , 22841 (2021). https://doi.org/10.1038/s41598-021-02090-9

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CDC provides national leadership for HIV prevention research, including the development and evaluation of HIV biomedical and behavioral interventions to prevent HIV transmission and reduce HIV disease progression in the United States and internationally. CDC’s research efforts also include identifying those scientifically proven, cost-effective, and scalable interventions and prevention strategies to be implemented as part of a high-impact prevention approach for maximal impact on the HIV epidemic.

The AIDS epidemic, although first recognized only 20 years ago, has had a profound impact in communities throughout the United States.

The Serostatus Approach to Fighting the HIV Epidemic: Prevention Strategies for Infected Individuals R. S. Janssen, D. R. Holtgrave, and K. M. De Cock led the writing of this commentary. R. O. Valdiserri, M. Shepherd, and H. D. Gayle contributed ideas and helped with writing and reviewing the manuscript.

CDC has provided funding to HIV partners to help implement programs that will help curb the increase of HIV infections. These programs facilitated with our partners and grantees are critical in the goal of eliminating HIV infection in the United States.

CDC has researched several HIV prevention interventions that have proven effective in helping to prevent HIV infection in certain populations and communities.

CDC has worked with key cities to create effective policies and programs to curb the tide of HIV infections in those cities. These cities have higher rates of HIV due to a number of factors therefore making them key locations for studies.

The Medical Monitoring Project (MMP) is a surveillance system designed to learn more about the experiences and needs of people who are living with HIV. It is supported by several government agencies and conducted by state and local health departments along with the Centers for Disease Control and Prevention.

• Assessment of 2010 CDC-funded Health Department HIV Testing Spending and Outcomes pdf icon [PDF – 359 KB]
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• HIV Prevention Funding Allocations at CDC-Funded State and Local Health Departments, 2010 pdf icon [PDF – 792 KB]

Cost-effectiveness of HIV Prevention

• The cost-effectiveness of HIV prevention efforts has long been a criterion in setting program priorities. The basic principle is straightforward: choose those options that provide the greatest outcome for the least cost.
• The fact sheet Projecting Possible Future Courses of the HIV Epidemic in the United States pdf icon compares the cost-effectiveness of three different prevention investment scenarios.

The HIV/AIDS Prevention Research Synthesis (PRS) Project identifies evidence-based HIV behavioral interventions (EBIs) listed in the Compendium of Evidence-Based HIV Behavioral Interventions to help HIV prevention planners and providers in the United States choose the interventions most appropriate for their communities.

• On January 1, 2012, CDC began a new 5-year HIV prevention funding cycle with health departments, awarding $339 million annually.
• The STD/HIV National Network of Prevention Training Centers provides training for health departments and CBOs on the HIV prevention interventions.
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Research & training, advances in hiv/aids research.

For an update on what medical science is doing to fight the global HIV/AIDS pandemic, read a Parade article by NIH Director Francis S. Collins and NIAID Director Anthony S. Fauci, AIDS in 2010: How We're Living with HIV .

Over the past several decades, researchers have learned a lot about the human immunodeficiency virus (HIV) and the disease it causes, acquired immunodeficiency syndrome (AIDS). But still more research is needed to help the millions of people whose health continues to be threatened by the global HIV/AIDS pandemic.

At the National Institutes of Health, the HIV/AIDS research effort is led by the National Institute of Allergy and Infectious Diseases (NIAID). A vast network of NIAID-supported scientists, located on the NIH campus in Bethesda, Maryland, and at research centers around the globe, are exploring new ways to prevent and treat HIV infection, as well as to better understand the virus with the goal of finding a cure. For example, in recent months, NIAID and its partners made progress toward finding a vaccine to prevent HIV infection. Check out other promising areas of NIAID-funded research on HIV/AIDS at http://www.niaid.nih.gov/topics/hivaids/Pages/Default.aspx .

Other NIH institutes, including the Eunice Kennedy Shriver National Institute of Child Health and Human Development and National Institute on Alcohol Abuse and Alcoholism, also support research to better control and ultimately end the HIV/AIDS pandemic. Some of these researchers have found a simple, cost-effective way to cut HIV transmission from infected mothers to their breastfed infants. Others have developed an index to help measure the role of alcohol consumption in illness and death of people with HIV/AIDS.

Find out more about these discoveries and what they mean for improving the health of people in the United States and all around the globe.

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The HIV/AIDS Epidemic: Revisiting the Early Days of a Global Health Crisis

By Skylar Hughes

On February 20, 2024

In Global Health , History , Medicine

On June 5, 1981, the Centers for Disease Control and Prevention reported the first cases of a mysterious disease afflicting young, otherwise healthy men in a tiny suburb of Los Angeles, California. The disease, now known as AIDS , would go on to infect 85.6 million people around the world, sparking an epidemic that persists to this day.

On February 6, 2024, Duke’s Global Health Institute hosted a conversation with Dr. James Curran and Dr. Kevin M. De Cock , both former leaders at the CDC, about their experiences on the frontlines of the AIDS crisis in the earliest days of this epidemic. The conversation was moderated by Dr. Chris Beyrer and Dr. Nwora Lance Okeke , two Duke researchers in infectious disease.

Pictured from left to right: Dr. James Curran and Dr. Kevin M. De Cock

The Origin of the Epidemic

The first cases of AIDS were reported by Dr. Michael Gottlieb , a young immunologist from UCLA. His groundbreaking findings, published in the CDC’s Morbidity and Mortality Weekly Report, described “previously healthy gay men from Los Angeles, San Francisco, and New York, who presented with rare opportunistic infections,” said De Cock. These infections, known as PCP (Pneumocystis carinii pneumonia) and KS (Kaposi’s sarcoma), were extremely rare. Upon observation, Gottlieb identified a startling commonality among the cases: they were all sexually active gay men.

These findings “didn’t fit into any organizational unit at the CDC,” so a multispecialty task force was formed. Led by Curran, it recruited experts in STIs, parasitology, virology, cancer, and more.

Tracking the Epidemic

At the start of the epidemic, cases were phoned into the CDC by individual doctors. But this quickly became inadequate . The epidemic was growing fast, and CDC phone lines could not keep up. “The CDC, therefore, developed a surveillance case definition for the syndrome,” De Cock explained. “Cases meeting this definition were reported through health departments to the CDC.”

“I think we were able with the case definition for surveillance, to take advantage of the fact that all of these conditions were very serious and so unusual that the physician would say ‘I’ve never seen anything like it,’…,” Curran said. “The other conditions were far less specific and far less useful for tracking the disease.”

In October 1981, these tracking protocols helped identify AIDS as a sexually transmitted disease. A national case-control study found that sexual activity was a leading risk factor, and a cluster of cases in 10 US cities linked via sexual contact was discovered. “People just didn’t want to believe it,” Curran said. “They wanted to believe that it wasn’t something transmissible.” 

Expanding Epidemic

Over the next year, the epidemic expanded to include injection drug users, heterosexual partners of bisexual men, people of Haitian descent, and infants. But perhaps most surprising was the transmission occurring through blood transfusion. In December 1982, a case of AIDS-like illness was reported in a 20-month-old infant after receiving blood from a donor who later developed the virus.

“Until that December report of the infant, the mainstream media had actually paid very little attention to AIDS. But that suddenly changed,” said De Cock. “While AIDS was seen as a problem of marginalized groups… it was easy to ignore. But anyone might need a blood transfusion.”

In the following years, rumors surrounding transmission and contact sparked nationwide panic. Fear of contracting the disease caused AIDS patients to lose their jobs and housing. Although the CDC provided up-to-date information on the nature of the virus, quelling public fear was extremely difficult. “AIDS proved that you can’t separate prevention and treatment,” Curran explained.

Modern AIDS Era

As we get close… to 100 million HIV infections since the epidemic began- have we done as well as we should have?” Dr. Kevin M. De Cock

In 1991, researchers successfully identified HIV (Human immunodeficiency virus) as the underlying cause of AIDS. Since then, scientific understanding of the disease has greatly improved. “Our success has made AIDS more normal, which has robbed the disease of some of its mystique,” De Cock expressed. However, there is still no known cure for AIDS. The disease is a lifelong battle that wreaks havoc on the people it infects.

De Cock and Curran’s contributions to the AIDS epidemic fundamentally shaped our understanding of the virus. Their work shines a light on the importance of frontline research and support. Their book, entitled ‘Dispatches from the AIDS Pandemic: A Public Health Story,’ is available to read here .

Written by Skylar Hughes, Class of 2025

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History of AIDS

By: History.com Editors

Updated: February 21, 2021 | Original: July 13, 2017

In the 1980s and early 1990s, the outbreak of HIV and AIDS swept across the United States and rest of the world, though the disease originated decades earlier. Today, more than 70 million people have been infected with HIV and about 35 million have died from AIDS since the start of the pandemic, according to the World Health Organization  (WHO).

READ MORE: AIDS Crisis Timeline

What is HIV?

The human immunodeficiency virus, or HIV, is a virus that attacks the immune system, specifically CD4 cells (or T cells).

The virus is transmitted through bodily fluids such as blood, semen, vaginal fluids, anal fluids, and breast milk. Historically, HIV has most often been spread through unprotected sex, the sharing of needles for drug use, and through birth.

Over time, HIV can destroy so many CD4 cells that the body can’t fight infections and diseases, eventually leading to the most severe form of an HIV infection: acquired immunodeficiency syndrome, or AIDS. A person with AIDS is very vulnerable to cancer and to life-threatening infections, such as pneumonia.

Though there is no cure for HIV or AIDS, a person with HIV who receives treatment early can live nearly as long as someone without the virus. And a study in 2019 in the medical journal, Lancet , showed that an anti-viral treatment effectively halted the spread of HIV.

Where Did AIDS Come From?

Scientists have traced the origin of HIV back to chimpanzees and simian immunodeficiency virus (SIV), an HIV-like virus that attacks the immune system of monkeys and apes.

In 1999, researchers identified a strain of chimpanzee SIV called SIVcpz, which was nearly identical to HIV. Chimps, the scientist later discovered, hunt and eat two smaller species of monkeys—red-capped mangabeys and greater spot-nosed monkeys—that carry and infect the chimps with two strains of SIV. These two strains likely combined to form SIVcpz, which can spread between chimpanzees and humans.

SIVcpz likely jumped to humans when hunters in Africa ate infected chimps, or the chimps’ infected blood got into the cuts or wounds of hunters. Researchers believe the first transmission of SIV to HIV in humans that then led to the global pandemic occurred in 1920 in Kinshasa, the capital and largest city in the Democratic Republic of Congo.

The virus spread may have spread from Kinshasa along infrastructure routes (roads, railways, and rivers) via migrants and the sex trade.

In the 1960s, HIV spread from Africa to Haiti and the Caribbean when Haitian professionals in the colonial Democratic Republic of Congo returned home. The virus then moved from the Caribbean to New York City around 1970 and then to San Francisco later in the decade.

International travel from the United States helped the virus spread across the rest of the globe.

READ MORE: Pandemics That Changed History: A Timeline

The AIDS Epidemic Arises

Though HIV arrived in the United States around 1970, it didn’t come to the public’s attention until the early 1980s.

In 1981, the Centers for Disease Control and Prevention (CDC) published a report about five previously healthy homosexual men becoming infected with Pneumocystis pneumonia , which is caused by the normally harmless fungus Pneumocystis jirovecii. This type of pneumonia, the CDC noted, almost never affects people with uncompromised immune systems.

The following year, The New York Times published an alarming article about the new immune system disorder, which, by that time, had affected 335 people, killing 136 of them. Because the disease appeared to affect mostly homosexual men, officials initially called it gay-related immune deficiency, or GRID.

Though the CDC discovered all major routes of the disease’s transmission—as well as that female partners of AIDS-positive men could be infected—in 1983, the public considered AIDS a gay disease. It was even called the “gay plague” for many years after.

In September of 1982, the CDC used the term AIDS to describe the disease for the first time. By the end of the year, AIDS cases were also reported in a number of European countries.

READ MORE: Pandemics that Changed History

The HIV Test Arrives

In 1984, researchers finally identified the cause of AIDS—the HIV virus—and the Food and Drug Administration (FDA) licensed the first commercial blood test for HIV in 1985.

Today, numerous tests can detect HIV, most of which work by detecting HIV antibodies. The tests can be done on blood, saliva, or urine, though the blood tests detect HIV sooner after exposure due to higher levels of antibodies.

In 1985, actor Rock Hudson became the first high-profile fatality from AIDS. In fear of HIV making it into blood banks, the FDA also enacted regulations that ban gay men from donating blood. The FDA would revise its rules in 2015 to allow gay men to give blood if they’ve been celibate for a year, though blood banks routinely test blood for HIV.

By the end of 1985, there were more than 20,000 reported cases of AIDS, with at least one case in every region of the world.

AZT is Developed

In 1987, the first antiretroviral medication for HIV, azidothymidine (AZT), became available.

Numerous other medications for HIV are now available, and are typically used together in what’s known as antiretroviral therapy (ART) or highly active antiretroviral treatment (HAART).

The regimes work by preventing the virus from multiplying, giving the immune system a chance to recover and fight off infections and HIV-related cancers. The therapy also helps reduce the risk of HIV transmission, including between an infected mother and her unborn child.

The World Health Organization (WHO), in 1988, declared December 1st to be World AIDS Day. By the end of the decade, there were at least 100,000 reported cases of AIDS in the United States and WHO estimated 400,000 AIDS cases worldwide.

HIV/AIDS in the 1990s and 2000s

In 1991, the red ribbon became an international symbol of AIDS awareness.

In that year, basketball player Magic Johnson announced he had HIV, helping to further bring awareness to the issue and dispel the stereotype of it being a gay disease. Soon after, Freddie Mercury —lead singer of the band Queen—announced he had AIDS and died a day later.

In 1994, the FDA approved the first oral (and non-blood) HIV test. Two years later, it approved the first home testing kit and the first urine test.

AIDS-related deaths and hospitalizations in developed countries began to decline sharply in 1995 thanks to new medications and the introduction of HAART. Still, by 1999, AIDS was the fourth biggest cause of death in the world and the leading cause of death in Africa.

HIV Treatment Progresses

WATCH: 30 Years of AIDs Research

In 2001, generic drug manufacturers began selling discounted copies of patented HIV drugs to developing countries, leading to several major pharmaceutical manufacturers slashing prices on their HIV drugs. The following year, the Joint United Nations Programme on HIV/AIDS (UNAIDS) reported that AIDS was by far the leading cause of death in sub-Saharan Africa.

In 2009, President Barack Obama lifted a 1987 U.S. ban that prevented HIV-positive people from entering the country.

The FDA approved pre-exposure prophylaxis, or PrEP, for HIV-negative people in 2012. When taken daily, PrEP can reduce the risk of HIV from sex by more than 90 percent and from intravenous drug use by 70 percent, according to the CDC. A major study completed in 2019 showed that over 750 gay men on an anti-viral treatment did not transmit the virus to their partners. "Our findings provide conclusive evidence that the risk of HIV transmission through anal sex when HIV viral load is suppressed is effectively zero," the paper, published in Lancet, stated .

At the end of 2019, some 38 million people were living with HIV/AIDS worldwide, and 940,000 people died from AIDS-related illnesses that year, according to WHO . Sub-Saharan Africa remains the most severely affected region, accounting for nearly two-thirds of the world’s current HIV cases.

Origin of HIV and AIDS: AVERT . HIV Originated With Monkeys, Not Chimps, Study Finds: National Geographic . HIV pandemic originated in Kinshasa in the 1920s, say scientists: The Guardian . America’s HIV outbreak started in this city, 10 years before anyone noticed: PBS . HIV Testing: CDC . About HIV/AIDS: CDC . How HIV spread across the West: CNN . Obama Lifts a Ban on Entry Into U.S. by H.I.V.-Positive People: The New York Times . Global Health Observatory (GHO) data: World Health Organization .

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NIH Ending the HIV Epidemic Projects Bridge Gaps Between HIV Research and Public Health Practice (VIDEO)

The National Institutes of Health recently issued $26M in  awards  to HIV research institutions in its fifth year supporting implementation science under the  Ending the HIV Epidemic in the U.S.  (EHE)  initiative. These awards are the latest investments in a program that is rapidly and rigorously generating evidence to inform the unified domestic HIV response by agencies in the Department of Health and Human Services. 

The EHE initiative aims to achieve a 90% reduction in the number of new HIV infections in the United States by 2030. Since the initiative was announced in 2019, NIH has contributed by supporting implementation science projects through its network of  Centers for AIDS Research (CFAR)  and the National Institute of Mental Health (NIMH)  AIDS Research Centers (ARC) .

CFARs are co-funded by 11 NIH institutes and centers (ICs), including the National Institute of Allergy and Infectious Diseases (NIAID). NIH ICs provide scientific stewardship to participating institutions in collaboration with the  Fogarty International Center  and the  NIH Office of AIDS Research , which coordinates the NIH HIV research program across the agency. CFAR and ARC-affiliated investigators conduct research in jurisdictions that are disproportionately affected by HIV, and many of the CFAR and ARC member institutions are based in these communities.

Dr. Jeanne Marrazzo, director of the National Institute of Allergy and Infectious Diseases, describes the Ending the HIV Epidemic in the U.S. (EHE) initiative, which seeks to combat the HIV epidemic by supporting implementation science. See below:

Read how the Harvard CFAR, which is based in the high-priority jurisdiction of Suffolk County, has launched an EHE Steering Committee to support local and national EHE efforts .

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Re-Centering the Narrative: A Brief History of the HIV/AIDS Epidemic

On June 5, 1981, the Centers for Disease Control and Prevention reported on cases of Pneumocystis pneumonia that afflicted  “5 young men, all active homosexuals,” in Los Angeles. This report marked the beginning of public knowledge about the AIDS epidemic. What the report didn’t include was two other cases of the mysterious pneumonia –  the first afflicting a gay African-American man, the other, a heterosexual Haitian man . This early omission of race was reflected throughout reporting during the HIV/AIDS crisis; historically the narrative focus has been on how the HIV/AIDS epidemic affected gay white men, while the experiences of American black and brown people with HIV/AIDS have been under documented, ignored, or written out of history.

In fact, the  first case of HIV/AIDS discovered in the United States  was  Robert Rayford, a 16 year old black teenager from St. Louis, Missouri who died in 1969 . The story of his sickness and  death, reported on in 1987, was eclipsed by the now disproven “Patient Zero” narrative that French-Canadian flight attendant, Gaëtan Dugas was the first person to bring HIV into the United States.

The time of mass HIV/AIDS deaths in the United States is largely behind us. A combination drug treatment, known as the AIDS cocktail, was discovered, leading to dramatic improvement in managing in HIV infection. After the introduction of the cocktail, the  number of new AIDS-related deaths began to drop, starting in 1997 . Today, HIV is a chronic condition for those with access to highly active antiretroviral therapy.

Quinn, Robert John, “Robert John Quinn’s Memorial Books, Volume A,” Documented | Digital Collections of The History Project

Despite the discovery of the cocktail more than 20 years ago, HIV/AIDS continues to disproportionately affect African American and Latino men. According to the CDC, in 2016,  African Americans accounted for 44% of HIV diagnoses , while  Latinx people accounted for 26% of HIV diagnoses . Among Latino men, 85% of diagnosed HIV infections were attributed to male-to-male sexual contact, while more than half of African Americans (58%) who received an HIV diagnoses identified as gay or bisexual.  The higher levels of HIV infection in black and brown communities of color is attributable to systemic bias, discrimination, structural racism, and lack of access to education and care.  To face this ongoing crisis, we must acknowledge history and stories that have been hidden, and discuss how these histories can inform our current responses.

One of those stories is of  Wilfred Colon Augusto , a Countway Library employee who died on September 17, 1991. Wilfred was a graduate of the State University of New York at Oswego, employed at Harvard Medical School, and by telephone company Nynex. He was active in the Latino Health Network. Wilfred’s obituary details:

Diagnosed with AIDS in 1985, Wilfred continued to live his life to its fullest. His great sense of humor and admiration for living allowed Wilfred to deal with the many challenges and the changing circumstances precipitated by AIDS. He enjoyed traveling, especially to his native Puerto Rico, and spending summers in Provincetown as well as dining out.

Today we remember Wilfred Colon Augusto, a member of the Harvard Medical School community, and a person whose story and experience should not be lost to history.

The Center for the History of Medicine in the Countway Library holds several collections related to the history of HIV/AIDS in Massachusetts and around the world, including the papers of:

• Max Essex, Mary Woodard Lasker Professor of Health Sciences in the Department of Immunology and Infectious Diseases, Harvard T.H. Chan School of Public Health
• Steven L. Gortmaker, Professor of the Practice of Health Sociology in the Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health
• Stephen Lagakos, Professor of Biostatistics, Harvard T.H. Chan School of Public Health
• Richard G. Marlink, Bruce A. Beal, Robert L. Beal, and Alexander S. Beal Professor of the Practice of Public Health in the Department of Immunology and Infectious Diseases at Harvard T.H. Chan School of Public Health
• 13 series of the Records of the Harvard AIDS Institute

The Center also holds oral history interviews and transcripts with  hemophiliac men who were patients at the Boston Hemophilia Center, available on OnView .

This content was authored by Joan Ilacqua, former Archivist for Diversity and Inclusion, and was originally published on the Center for the History of Medicine's blog (now defun ct).  If you have additional questions or comments, please reach out to the  Harvard Chan Archivist . 

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Challenges of Non-AIDS-Defining Diseases in People Living with HIV

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In the early stages of the HIV epidemic, AIDS-defining illnesses (ADIs) were the most significant health concerns for people living with HIV. ADIs included opportunistic infections and cancers that typically only occurred in people with severely weakened immune systems due to HIV. However, highly effective ...

Keywords : HIV, Non-AIDS-defining diseases, Cardiovascular diseases, Renal diseases, Liver diseases, Neurological diseases, Cancer, Mental health disorders

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At-Home HIV Testing Program Surpasses Expected Reach

  Photo courtesy of the Centers for Disease Control and Prevention 

When   Together TakeMeHome   launched in March 2023, the ambitious goal for the initiative—the largest self-testing program in the United States to date—was to distribute 1 million self-tests in five years, or approximately 200,000 per year.

The program surpassed 444,000 tests ordered in less than a year.

While this tremendous response is certainly a cause for celebration for Together TakeMeHome— which provides free HIV self-tests by mail to residents of all 50 states and Puerto Rico—this milestone is only one indicator of how the program effectively addresses stigma by removing barriers and empowering people to learn more about their own health.

Additional Together TakeMeHome highlights include:

26%   of those who provided information on prior testing history, had not previously tested for HIV. Another quarter (27%) had not tested within the last year.

72%   of those who provided information on sex at birth, gender identity and race, were from communities disproportionately impacted by HIV - gay and bisexual men, cisgender Black women, and transgender women.

65%   of people who provided information on their race or ethnicity were from racial and ethnic minority populations—31% Hispanic, 24% Black, and 10% who selected “other.”

9 of the top 10   U.S. jurisdictions with most orders per capita were in the U.S. South, a region with   higher rates of people living   with HIV.

50%   of orders from within geographic areas prioritized by the federal   Ending the HIV Epidemic in the U.S. initiative.

Nearly   70%    of orders came through dating apps.

“Accessing health care can be difficult for many people and even then, talking about sensitive health issues, such as the need for HIV testing, with their doctor can sometimes be tough. Together TakeMeHome is really filling a need for people who want that privacy and opportunity to check their HIV status at home and it’s free,” says Patrick Sullivan, PhD, the project’s lead scientist and professor of epidemiology and global health at Emory University’s Rollins School of Public Health.

Together TakeMeHome is funded by CDC under award number 1NU62PS924790 and is implemented through partnership and collaboration with Emory University, Building Healthy Online Communities (BHOC), NASTAD, Signal Group, and OraSure Technologies.

The HIV self-tests are the FDA-approved OraQuick ®   In-Home HIV Test (OraSure Technologies, Inc.) that use mouth swabs and take only 20 minutes to get a result. Interested participants can enroll through the program’s website:   together.takemehome.org .

Multiple studies  have demonstrated the value of self-testing for increasing the frequency of HIV testing, identifying new diagnoses and reaching people who reported they have never previously tested for HIV. Delayed diagnoses can lead to poor health outcomes and increased HIV transmission. 

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A qualitative insight of HIV / AIDS patients' perspective on disease and disclosure

Imran ahmed syed.

1 School of Pharmaceutical Sciences, Universiti Sains Malaysia (USM), Penang, Malaysia

2 School of Pharmacy, International Medical University, Kuala Lumpur, Malaysia

Syed Azhar Syed Sulaiman

Mohammad azmi hassali, kaeshalya thiruchelvum, christopher k.c. lee.

3 Department of Medicine, Hospital Sungai Buloh, Selangor, Malaysia

Understanding patients' knowledge and belief towards disease could play a vital role from an outcome perspective of disease management and HIV / AIDS patients are not exception to that.

Qualitative methodology was used to explore Malaysian HIV / AIDS patients' perspectives on disease and status disclosure. A semi structured interview guide was used to interview the patients and a saturation point was reached after the 13th interview. All interviews were audio‐recorded and subjected to a standard content analysis framework.

Understandings and beliefs towards HIV / AIDS and Perspective on disease disclosures were two main themes derived from patients' data. Beliefs towards causes and cure emerged as sub‐themes under disease understandings while reasons for disclosure and non‐disclosure were resulted as main sub‐themes under disease disclosure. Majority of patients apprehended HIV / AIDS and its causes to acceptable extent, there were elements of spirituality and lack of education involved with such understandings. Though beliefs existed that knowing status is better than being ignorant, fear of stigma and discrimination, social consequences and family emotions were found important elements linked to disease non‐disclosure.

Conclusions

The outcomes provided basic information about patients' perceptions towards disease and status disclosure among HIV / AIDS patients which can help in the designing and improvising existing strategies to enhance disease awareness and acceptance and will also serve as baseline data for future research further focusing on this subject.

Introduction

Although globally the number of people newly infected with HIV/AIDS is declining, national epidemics continue to expand in many parts of the world. 1 Even though much has been achieved in terms of treatment outcomes due to the global solidarity in the AIDS response during the past decade, 2 the chronicity of HIV/AIDS still poses challenges to the patients' life. 3 Therefore, until the day HIV/AIDS cure will be possible, delay in HIV/AIDS‐related mortality and related complications with improve quality of life (QoL) will remain as main outcomes of the treatment and to achieve this, equal and active participation of patient in the whole process of treatment is imperative. This accentuates on assessment of patients' perspective and understanding towards disease and its management. 4 Patients with chronic diseases might be expected to encounter increasingly complex barriers given the need for long‐term care and treatment, and it is clear that these barriers can have very serious consequences in terms of delayed treatment, inappropriate healthcare‐seeking behaviours, poor adherence to treatment regimens or even a decision to forego treatment. 5

HIV/AIDS is widely recognized as a chronic illness within HIV care, but is often excluded from chronic disease lists outside the field. Patient‐related principle elements of chronic disease management such as understanding illness and wellness, health promoting behaviours, preventing transmission are some of the essential elements in the integrated framework of chronic HIV care. 6 Therefore, exploring such elements can help improvising existing HIV/AIDS treatment program by incorporating patients' perspectives into it as such perceptions influences their health‐seeking behaviour and can complicate their treatment outcomes. 5 This in turn can help in optimizing patient care as well as dealing issues of non‐compliance, delay in treatment, screening refusal etc.

Even though the regional prevalence of HIV infection is nearly 25 times higher in sub‐Saharan Africa than in Asia, almost 5 million people are living with HIV in South, South‐East and East Asia combined. 2 Many factors contribute to this high prevalence, from low levels testing and linkage to care and prevention, to poor retention in care and adherence to antiretroviral treatment. 7 Malaysia is a country with extensive cultural and ethnic diversities with range of spiritual traditions and believes, 8 , 9 , 10 and the epidemic in this country is still concentrated within most‐at‐risk populations (MARPS) especially among IDU (Injecting Drug Users), sex workers and transgender population with a decline in annually reported new cases. 11 Currently Malaysian HIV/AIDS care strategies are focused on reduction in transmission, improvement in quality of care, alleviation of socio‐economic and human impact among PLWHA (People living with HIV and AIDS), reduction in stigma and discrimination with improvement in disease awareness among general population. 10 Therefore, a strong reason for the need of such explorations is the fact that studies have found deficits in the spectrum of engagement in HIV care including late HIV diagnosis, suboptimal linkage to and retention in HIV care, insufficient use of antiretroviral therapy, and suboptimal adherence to therapy, which pose significant barriers to achieving optimal treatment outcomes. 12 This study therefore aimed to explore disease perspectives of Malaysian patients with HIV/AIDS, which to the best of our understandings were never investigated before.

Qualitative methodology

The use of qualitative methods is becoming more common in medical research in general and HIV/AIDS in particular. 13 , 14 , 15 Indeed, some have suggested that qualitative research is pivotal to our understanding of the socio‐behavioural aspects of HIV disease. 16 Such studies in different parts of the world have revealed poor patient understanding and beliefs towards HIV/AIDS and its transmission 17 , 18 , 19 as well as spirituality linked to such believes; 20 however, only limited data are available as many of them focuses particular aspects in HIV care, contextualized to particular setting. Studies have also found fear of stigma resulting in refusal for HIV testing 21 and reasons for non‐disclosure. 22 , 23

Design and setting

The study was conducted according to the principles expressed in Helsinki Declaration, and was approved by the Medical Research & Ethics Committee (MREC) and Clinical Research center (CRC), Ministry of Health Malaysia. The study was also registered with National Medical Research Registry (NMRR) database. Little has been known about Malaysian perceptions of patients' with HIV/AIDS on subject matter; therefore, qualitative research was adopted to explore the issue. The study was conducted at Hospital Sungai Buloh, the largest referral centre for infectious diseases in the country. All interviews were conducted in closed counselling room especially arranged for the study.

The participants

Participants were selected from the outpatient infectious disease clinics between January and May 2013 with the help of convenience sampling method. Malaysian patients, 18 years of age or older, diagnosed with HIV/AIDS attending outpatient infectious disease clinics at Hospital Sungai Buloh were approached personally by principal investigator to participate in this study. Consulting medical doctors also helped in briefly informing the patients about the objective of the study while patients were having their appointments; however, participation was entirely on voluntarily basis therefore no financial or other forms of incentives were given upon study participation. Study information sheets in Malay and English languages were provided, and patients were also given verbal information on the research. Both written and verbal consents were obtained prior to data collection. A total of 15 patients were approached; however, a saturation point was reached at 13th interview and no new information was obtained from the subsequent interviews.

A semi‐structured interview guide was used for the purpose of data collection. The interview guide was developed after extensive literature review, where list of possible questions to assess the patients' perspective on HIV/AIDS and status disclosure were identified. Open‐ended questions were created so that it can provide interviewees with a maximum opportunity to express their views. The initial version of draft interview guide was discussed among the authors (pharmacists and medical doctor) and was modified after a few rounds of discussion. Later this modified version of interview guide was subjected to review by medically qualified professionals, having experience in qualitative research. In addition to check whether particular given set of questions were useful in the retrieval of objective information, a pre‐testing of the interview guide was carried out by conducting pilot interviews with patients with HIV/AIDS. Finally, specific probes identified during pilot interviews were added to the interview guide. However, these findings of pre‐testing interviews were excluded from data presented.

The interviewers

Interviews were conducted by principal investigator (Pharmacist/Lecturer) in the English language as majority of participants were comfortable with it; however, Malay language (national language of Malaysia) was also used for patients who preferred to communicate in it, for which a research assistant (Final year pharmacy student) was appointed to help. The research assistant was briefed about the study objectives, scope and procedure and had attended (shadowed) interview sessions with principal investigator prior to the conduction of any interviews.

Interview process and procedure

Each interview lasted for approximately 25–65 min. All interviews were audio‐recorded and the principal investigator attended all interviews with the research assistant to take field notes and facilitate the interview process. The interviews were mainly focused on study objectives, and probing questions were also used where necessary to get a more thorough understanding of the issue involved. Each transcribed interview verbatim was then sent to the study participants for their approval. Patients' demographics along with relevant disease and treatment‐related data were also obtained prior to interviews.

The Interviews in Malay language were transcribed and translated into English by the research assistant, while the principal investigator transcribed and coded all interviews, and related themes were developed. All transcribed interviews were later subjected to thematic content analysis, and the transcripts were analysed for relevant content to identify the emerging categories. 24 For validation purpose, all analyses were reviewed by a medical doctor and an experienced pharmacy practice lecturer.

A total of thirteen patients (PT1–PT13) with a mean age of 34.4 years were interviewed for data generation. Majority (61.54%) of the patients were Malay, male (92.31%), unmarried (84.62%) and from age group 18–30 years (46.15%). Almost all the patients had at least completed secondary education with one patient having postgraduate education. Most (53.85%) of the participants were working in private sector while only 23.08% were unemployed. Of these thirteen patients with HIV/AIDS, 10 (76.92%) patients were receiving antiretroviral treatment. Patients' detailed demographic characteristics are provided below in Table  1 .

Socio‐demographics of the study participants ( N  = 13)

During the analysis, important themes were discovered in relation to patients' understanding towards HIV/AIDS and status disclosure, which elucidate their stance on subject matter. These include understanding and belief towards HIV/AIDS and perspective towards disease disclosure.

Understanding and belief towards HIV/AIDS

When patients were asked about their understanding and belief towards HIV/AIDS, following sub themes emerged.

Belief towards the causes of HIV/AIDS

Virus causes weaken immune system.

Majority of the patients were aware that HIV is caused by a virus and it can leads to a weakened immune status, that is AIDS. Another important aspect of patients' understanding was their understanding towards the most common routes of HIV transmission, also the belief that both male and female carry equal risk to acquire this disease. Patients' generally regarded HIV/AIDS as dangerous disease which once acquired can lead to many diseases, which may indicate the fear of HIV/AIDS that they were living with.

… HIV is a virus that leads to AIDS. … AIDS is a deficiency syndrome it affects the immunity of the body. Well it's a virus and we're not really sure where the virus is come from, well it definitely gets passed on through sex, through drug user among, from mother to child, through the milk. (PT1)

It's a kind of virus infection which causes deficiency in immune system of a person. (PT2)

If you're, if you're having one monogamous relationship, the risk for you to get this is much less, than again if you're having, having, how to say, multi‐partner, there might be a risk for you to get the disease is much higher… (PT5)

it's very dangerous, and because of your immune system going to be low, weak and easy for you to get many diseases, and be infected with any viruses. (PT10)

The virus is not discriminating anyone, if female and male… (PT6)

Spiritual attributes (divine punishment)

A handful number of patients linked HIV/AIDS and its cause to a form of divine punishment or as a curse due to human sins or unacceptable deeds of morality, as explained by their faiths. In addition, they were also of an opinion that disbelievers or people who do not follow religious way of life are more susceptible to acquire this disease; hence, there is a close link between HIV/AIDS and religious norms, adhering to these would help one protecting him from this. However, it was also found that some patient disregarded HIV as a divine punishment rather a disease that requires a better understanding from every one.

I come from a very strong catholic family, so I think people do think to a certain extent that if you're homosexual, and you know, God will give you HIV as a punishment for being homosexual… (PT1)

Yes for me yes, it is related to lifestyle. Is a, me as a Muslim, when you are not taking care of yourself, you can get… About your sex life, about the forbidden things… (PT4)

If you have a strong religious… maybe you are protected, you are protected… if we have HIV lah, compared to others like who are not strong with religious maybe (PT11)

However, a few did not believe having any links between HIV/AIDS and spirituality.

HIV is a disease, is not the punishment from the God… So, is, the, the virus is not discriminating; everyone can get HIV. (PT6)

Lack of awareness leads to HIV

Most of the study participants generally agreed that ‘lack of HIV awareness’ among general population and teenagers in particular is a major contributing factor to growing HIV epidemics. They were also of view that they could have prevented themselves from HIV, provided they were given right information at right time. Patients also viewed lack of education from parents or elders in family, on sexual aspects of life and teenage issues directly linked to increase in risk of getting HIV. A few of them believed that cultural norms are important barriers, why such educations are not provided to young ones.

I haven't seen my mother or my father, or my relatives talking about sex, you know. They were very… I don't know is it shy, is it respect, not really sure. But if they give me a right information on the right time, maybe in… secondary school‐ during that time… maybe I have a knowledge, you see. (PT6)

This is very dangerous disease, what you call, spread among teenagers I can say that, and a lot of people need to know about HIV and how, and you still have a chance actually, which is… with a proper medication (PT10)

Life style as a cause of HIV

Interestingly, a number of patients linked life style as a risk of acquiring HIV/AIDS; when they quoted that being involved in bad habits like drug addiction or having multiple sex partners or mingling people with other bad habits can increase risk of getting HIV/AIDS. In other words, prevention from these and living within good environments will eventually decrease risk being infected with this disease.

If we don't get addicted to drugs, surely we wouldn't be drawn to the disease. Our risks to get the disease is not high… and it's the same if we do not do random sex, it means that our risk of getting HIV is very low (PT7)

… for example your surroundings, your environment, what type of people you are mingle around… if you are mingle around with positive people, with good and have a positive values… (PT11)

Belief towards the cure of the disease

Differences on patients' understandings towards cure of HIV/AIDS were noted; when a few viewed it is curable/treatable or otherwise. Interestingly another important aspect of disease understanding was highlighted when few patients claimed that their understating regarding HIV and its cure was different before they got infected which highlighted lack of general public awareness about the disease which could also be accountable for growing epidemics.

Before I got infected, I have this idea about HIV where, ok HIV is just a disease and disease is a disease. It probably sooner or later will cure… (PT2)

I think HIV and AIDS is a two different things; HIV is something like we can still do, I mean, we can still, you know, manage to treat, ok. We can do the treatment, But AIDS I think, is hard to do the treatment. (PT3)

Participants regarded AIDS as the final stage in HIV disease process that leads to death. They considered AIDS similar to cancer and other non‐curable diseases for which hopes were high that 1 day a cure can be found. Interestingly some patients highlighted an important aspect where some people claim that HIV/AIDS is curable and they have solutions for it, such misleading information also highlighted cultural beliefs towards diseases and cure.

AIDS is similar like the critical process of HIV which is the last part …I mean it is hard to be made better, is considered final part of life (PT11)

AIDS still uncurable, AIDS is like cancer, like other disease that will make people die. (PT9)

Overall patients' had acceptable conceptions towards HIV/AIDS and its causes while accepting it as a disease that they have to live with for the whole life. To them it is a life changing disease therefore having a positive mindset will help dealing issues with HIV/AIDS.

Perspective on disease disclosure

As expected almost all patients were of opinion that they should keep their disease status to themselves. Lack of disease understanding among general public, deficiencies of social support system, fear of social consequences and family emotions were found main reasons of non‐disclosure. Most of them feel that disclosure generates stigma although a few thought that family should be the one, if it is ever to be disclosed.

Reasons for non‐disclosure

Family emotions.

Most of the HIV patients were keen to keep their status to themselves or not to be revealed to their family, friends etc. Majority of them ranked family emotions as one of the most important reasons for non‐disclosure and believed that such disclosure will only result in hurting family emotions, while they were also afraid that this may also revealed them their high‐risk behaviours, for example homosexuality, drug abuse etc.

It would be a bit difficult telling them (family) I'm positive. I think I've, I've no intentions of telling them… I was joking about it the other day and told the doctor that it will be easier to tell them I have cancer, or tuberculosis or if I was in a car accident and I lost a leg, that would have been easy. But I think there is a certain stigma around HIV that would be really difficult for me to tell my family, although they are very, very supportive. (PT1)

So far just hospital and some other HIV patient know my status. And my family and err my, my colleague they don't know my status, because at this moment I still scare to let people now I'm HIV (PT9)

Lack of community awareness

Lack of general awareness regarding HIV/AIDS was also highlighted as an important contributing factor to non‐disclosing behaviour as most of the patients were afraid that this lack of disease understanding could create greater issues of stigma and social discriminations once their status is revealed.

Not much, I mean, I never tell my family. I think they won't understand… Just between good friends, just friends… Because I think they lack of knowledge about HIV, so when I tell them that I'm diagnosed, so I don't think they want to accept it (PT3)

Because still have a lot of people don't know what is a HIV and AIDS. I, I scared err, I mean when they know I'm have HIV, I think they will scare. But for family, because hmm my parents don't know I'm homosexual and then I don't want to them, worry about that; so I decided not to tell them. (PT9)

Fear of losing job

A few participants also feared that status disclosure could result in losing their jobs, which in turn can make their life more miserable.

People would want my job, and they might use this against me, or if I'm sick and they'll say I can't do my job very well, etc. But because I run my own business, it's not so bad… (PT1)

Some of the employer put in the application form you have HIV? that one is stigma for us, in order for us to apply for the job, or the positions. Then we need to hide something, some information… I did, and I need to hide the information (PT11)

While some had fear of losing job a few had also shared the consequences of disclosure in form of lost job and employment, highlighting one of the most terrible social difficulties resulted with status disclosure.

I was sacked from my job because I was on leave; I was in the ward for more than a month, 2 months… (PT13)

Fear of stigma and discrimination

One of the most important reasons for non‐disclosures highlighted by almost all participants was fear of being stigmatized and discriminated upon status disclosure. They believed that peoples' behaviour is not going to be the same once they knew our status and have shared their experiences when they were marginalized both by public and authorities. They unanimously asked public for an equal treatment, similar to those without HIV/AIDS.

This is very subjective… once they know your status, even though they don't said it, you will know it, you will understand the service, the way of speaking, the way of relationships, will be different… It will never be the same. (PT2)

… As human being when someone call you, ‘Hey HIV guys, come here’… (PT4)

No, no for me I'm HIV, then I'm HIV. So don't treat me in special. I'm a like others, you know, treat me as a human, that's all. I don't want as…any special…what… treated, I don't want that. (PT6)

The discrimination issues I have received, I am speaking from experience… discrimination and stigma issues when I was in police captivity lah Ok, usually when we are in police captivity and the police know that we are HIV positive, they, first of all they wouldn't look at us decently… (PT7)

Reasons for disclosure

Positive support from friends and family.

Some of the participants were in favour of sharing their status for which they have reasons and had shared their experiences as well. For those who shared their HIV status although the initial responses were not good, however, lately they found support by family and friends. Most of them regarded family and close friends as the only group of individuals with whom they were comfortable disclosing disease status.

No, they (family) were quite shocked about it, but after I explained to them about, what is HIV… there is medications on it, and they, they understand. (PT5)

My workplace, they really understand. I think because I am a manager, so no one can be discriminate me, except me, I am going to discriminate them. (PT6)

Family is the only, based on my experience, family, my family is supportive lah, compared to my friends. I, I will not tell my friend, about this disease, because they will spread out the stories and everything; you know the Malay culture and whatsoever, their mouth can be saying bad, hah. (PT11)

To the best of our knowledge this will be the first ever published qualitative study in the Malaysian context exploring patients' with HIV/AIDS believes and understanding which will help in better understanding patients' point of view and clarify their belief and perceptions, through a number of important themes identified. Living with HIV/AIDS poses dual challenges to the affected patients: both from disease as well as a continuous struggle in dealing challenges faced in day to day life. In the history of modern medicine, there has not been any other illness that is so entwined with moral, religiosity, social and existential values as HIV and AIDS. 9

Our study revealed that Malaysian patients with HIV/AIDS had better understandings towards HIV/AIDS, its cause and transmission, where patients knew that it is caused by a virus mainly transmitted via sexual relationship, illicit injectable drug use and from infected mother to child. Hutchinson et al . in their study also found quiet similar basic understanding towards HIV and AIDS; 21 however, a study in France has shown patients considered sexual contacts as the only route of HIV transmission while patients' beliefs and perceptions regarding HIV/AIDS, the fear to be screened and difficulties to talk about sexuality were found as important barriers towards HIV screening. 19 Interestingly, study participants related HIV/AIDS to other non‐curable diseases particularly ‘cancers’ and believed that HIV is curable but not AIDS. Another important aspect of their understanding was linking HIV/AIDS as a form of divine punishment, where patients' believe that careless and sinful lifestyle is the reason why people get this disease. This signifies the religiosity and spirituality linked to HIV/AIDS which was found in various cultures and believes and explored by a number of studies around the world. 19 , 20 , 25 Malaysia is a multiethnic and multicultural society where people live with various religious backgrounds; however, Muslims are the majority in this country. In the perception of some Muslim locals, PLWHA are considered to be living the punishment of their sinful activities like drug misuse and prostitution. Being infected with HIV is possibly, and probably, perceived as having weakness in character and being sinful. 9 Islamic teachings and values portrays sex outside of marriage as sinful, often believed to contribute to HIV transmission among those reject safe‐sex practices. 26 Hence, religious leaders could play an important role in controlling disease epidemics, 26 , 27 in view of which in the year 2001. The Malaysian department of religious affairs, JAKIM (Jabatan Kemajuan Islam Malaysia) had introduced a gradual state by state mandatory premarital HIV screening program for prospective Muslim couples in the country to help in curbing growing epidemics. 8 Similarly, a French study also revealed that people believed that religion (Catholicism) was supposed to protect patients from high‐risk relations, 19 this trend is further confirmed in a South African study which found various strong aspects of spirituality among PLWHA and implicated that such believes should always be contextualized to HIV/AIDS care by health‐care professionals. 20

As expected most of the participants believed lack of HIV/AIDS‐related education and awareness in the society is the major cause of HIV epidemics. They perceived if they would have been educated on the issues related to various aspects of attitude and behaviours leading to HIV, the situation could have been different. Most of these patients regarded teenage as the most vulnerable to get involved with risky behaviours like intravenous drug use etc. Of course, there is no doubt about the need of education‐based interventions especially for teenagers to minimize the risky HIV behaviours; however, the effectiveness of such interventions and programs greatly depends on how well cultural, religious, political, individual, societal, legal and resources‐based barriers are addressed in any contextualized setting. 28 Although there are clear evidences that education can avert HIV through the application of effective school‐based interventions and also mitigate the impact of the pandemic, there are several challenges to be overcome. 29

Disease status disclosure was found as another important aspect among people living with HIV/AIDS (PLWHA) in Malaysia, where they linked many reasons with non‐disclosure including, lack of disease understanding among general public, deficiencies of social support system, fear of stigma and social consequences, including respecting family emotions. This non‐disclosure could be a contributing element in growing epidemics in the country as it was quoted in a Malaysian study that increasing number of HIV infections in females may indicate unsafe sex or failure of infected husbands to disclose their HIV status to their spouses. 9 The relationship between ART and status disclosure to partner(s), family and community is also poorly understood, with the majority of evidence coming from high income settings; 30 however, data from some of the developing countries suggested a distinctive pattern of disclosure that relies on third parties and intermediaries, especially religious leaders, as instruments of disclosure. 23 Fear of discrimination can be further defined as fear of social discrimination leading to social isolation and lack of support and fear of socio‐economic discrimination which may lead to problems with jobs, housing, insurance and other practical socio‐economic considerations. 31 Socio‐economic factors could also be playing an important role in non‐disclosing attitude among Malaysian PLWHA, as younger peoples are known to have more fears of job‐related consequences, when compared to older HIV patients. 32

The psychosocial challenges faced by PLWHA range from being exposed to stigma and discrimination to dealing with the anger and fear of living with a serious health problem. 33 PLWHA face stigma in part because infection with HIV is associated with moral failures and a breach of social norms and taboos, 34 this may had some influence on PLWHA, and they may have carried on with their lives in denial. 9 Stigma has been identified as one of the most poorly understood aspects of the HIV epidemic, 35 a South African study has suggested that stigma experiences were intertwined with other daily conflicts and together created tensions, particularly in gender relations, which interfered with attempts to regain normality. 36 Therefore, there is a strong need to understand stigma and discrimination‐related issues and intensify stigma reduction with in local context because eventually the disclosure and linkage to care experience is crucial in forming patient attitudes towards HIV and HIV care. 37

Study strengths

One of the strengths of this study is the qualitative nature as well as the first of its type in the country. Also, the interviewers involved were having no direct connections to the particular care facility; hence, we believe it could had minimal influence on participants views; however, knowing this patients may not be explicit in explaining their perspectives although they might viewed this as an opportunity to share their concerns and views.

Limitations

Interviews were carried out in a hospital setting when the patients' were there to receive treatment; this may perhaps influenced their belief and attitudes. In addition, the study sample consisted of patients already receiving care from the hospital; therefore, it may not reflect opinions of those who opt not to receive any treatment. Similarly, due to its qualitative nature it may not be reflective of all patients with HIV/AIDS in the country.

Given the unique nature of illness, HIV/AIDS care requires greater involvement of patients into their treatment plans and strategies, for which understanding patients' perspective is imperative. Patients' believes and understanding towards disease, and issues faced in daily life definitely influence their decisions on treatment compliance and adherence which in turns affects the usefulness of HIV control program. More cultural specific educational programs for both patients and public can help in improvising their understanding towards disease which may also benefit in minimizing stigma and discrimination issues and at the same time improve health‐seeking behaviour among PLWHA.

Implications to practice and future directions

Patients' understanding is a key factor in engaging them into any HIV care program because disengaged individuals continue to contribute to the ongoing transmission of infection; therefore, engagement of HIV‐infected individuals in care will be critical for individual health and the prevention of HIV transmission to others. 38 More qualitative studies are needed alongside quantitative findings in cultural and belief context to help better understand and manage HIV/AIDS globally. Some practical implications of our findings could include community‐based interventions to reduce stigma and discriminations, strategies to overcome challenges and barriers to disclosure in order to promote health‐seeking behaviour while strengthening social support for PLWHA. In addition, quantitative findings based on present study results as well as future researches by engaging HIV‐infected patients not receiving any care and treatment would be helpful in better understanding the scope of the issues involved.

Acknowledgement

We would like to thank to the Director General of Health Malaysia for permission to publish this paper.

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Vital Perspectives on Healthcare and Science: Whitney Strub

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Description

Whitney Strub , editor of the anthology Queer Newark (Rutgers Press, 2024), will be in conversation with Jason Chernesky as part of the Vital Perspectives on Healthcare and Science series.

Join this evening of scholarship made accessible, opening conversation around this book. Histories of gay and lesbian urban life typically focus on major metropolitan areas like San Francisco and New York, opportunity-filled destinations for LGBTQ migrants from across the country. Yet there are many other queer communities in economically depressed cities with majority Black and Hispanic populations that receive far less attention. Though just a few miles from New York, Newark is one of these cities, and its queer histories have been neglected—until now. Queer Newark reveals a new side of New Jersey's largest city while rewriting the history of LGBTQ life in America.

About the Series

Formerly the Future of Healthcare Series, Vital Perspectives on Healthcare and Science engages with some of the most pressing public health issues of our time, in a regular public forum catalyzed by a book. The series is sponsored by the Medicine, Science, and the Humanities Major .

About the Speakers

Whitney Strub writes about political, legal, and cultural battles over obscenity and pornography. He situates these social struggles in various contexts, particularly modern feminism, LGBT history, the rise of the New Right, and the sexual revolution. His first book, Perversion for Profit: The Politics of Pornography and the Rise of the New Right , was published in 2011, and his next book, Obscenity Rules: Roth v. United States and the Long Struggle over Sexual Expression , was published September 2013.

Jason Chernesky earned his Bachelor of Arts in history from Rutgers University-New Brunswick and his Master of Arts in history from Rutgers/NIJT-Newark. He recently earned his doctorate in the history and sociology of science from the University of Pennsylvania. As a historian of 20th-century medicine, health care, public health, and environments in the U.S., Chernesky's research examines race-based health inequities among American children and their families in the context of the built environments in which they lived. Chernesky's research interests also include histories epidemic disease, drug use, biomedical technologies, and nursing. Based on his doctoral dissertation, "'The Littlest Victims': Pediatric AIDS and the Urban Ecologies of Health in the Late-Twentieth-Century United States," Chernesky is working on a book proposal that examines the ways in which the AIDS pandemic affected Black and Latinx children and their families in the U.S. Chernesky contributed a chapter to Queer Newark titled "Project Fire: AIDS, Erasure, and Black Queer Organizing in Newark." Chernesky is also interested in public history and has helped create public history events on topics related to the history of medicine and public health. As the Council on Library and Information Resources opioid industry research postdoctoral fellow, Chernesky is involved in the stewardship of public access and engaged research into this growing digital archive co-curated by Johns Hopkins and the University of California, San Francisco.

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There is no loneliness epidemic

Everyone from the surgeon general to mental-health startups have misdiagnosed America's problem.

You might call US Surgeon General Vivek Murthy Dr. Loneliness. Since 2017, he has made what he's diagnosed as America's "loneliness epidemic" the center of his public-health agenda, writing several op-eds and a best-selling book and appearing on dozens of news shows and podcasts to issue dire warnings about this deadly scourge. 

Last May, Murthy delivered his most urgent cri de coeur to date, an official advisory titled "Our Epidemic of Loneliness and Isolation." Over 80 pages, Murthy unspools the extent of this disease's spread and the need to stop it. "If we fail to do so," he writes, "we will continue to splinter and divide until we can no longer stand as a community or a country."

With the report, a steady trickle of headlines about the epidemic turned into a firehose: "Loneliness is at epidemic levels and it's killing Americans" (USA Today); "This Epidemic of Isolation Is as Harmful as Smoking" (Bloomberg); "America's Loneliness Epidemic Comes for the Restaurant" (The Atlantic). Business Insider published a series of stories last year about "modern loneliness" framed around the epidemic designation, including one I wrote about third places. 

In recent months, several high-profile names have branded themselves crusaders against the loneliness outbreak. Hillary Clinton argued that it has made American voters more vulnerable to political extremism and played a role in her loss to Donald Trump. Sen. Chris Murphy of Connecticut introduced a bill to create a "national strategy to combat loneliness." The legendary sex therapist Dr. Ruth, at 95, was appointed New York State's first "loneliness ambassador."

And a cottage industry of venture-capital-backed startups has swooped in to save the day.  These apps and experiences range from international group travel for high-achieving millennial women to a Brooklyn-based "2.0 community center" with group meditation and movement exercises. 

There's one problem: The loneliness epidemic doesn't exist.

"Epidemic" describes a disease that's spreading, often over a short period of time. It suggests that something is acutely worse today than it was in the past. While it's clear that millions of Americans are lonely and isolated, it's far from clear that the country is lonelier now than it used to be. A 2021 meta-analysis — cited in Murthy's advisory — did find that self-reported rates of loneliness among young adults have steadily ticked up since the 1970s. But how that loneliness has been measured over time has been both inconsistent and mushy. Even the authors caution in their meta-analysis that "the frequently used term 'loneliness epidemic' seems exaggerated." We simply don't know enough about loneliness to call it an epidemic.

For many Americans, loneliness may actually be decreasing. A recent peer-reviewed study found that middle-aged Americans report being less lonely than they were 20 years ago. "Despite media and public dialog portraying loneliness as a worsening problem, little is known about how the prevalence of loneliness has changed over time," the researchers wrote. A 2023 Gallup survey found that rates of loneliness in the US have been steadily declining since the height of the pandemic. A study from the University of Michigan — also released months before Murthy's advisory — similarly found that Americans between 50 and 80 years old are far less likely to report feeling lonely than they were in 2020. 

Eric Klinenberg, a professor of sociology at New York University, finds it "baffling" that public-health leaders like Murthy aren't "publicly celebrating the improvement" and studying how and why it happened. "Imagine you're a public leader and you're dealing with the AIDS epidemic and you saw a 20, 25% decline in the prevalence of AIDS in a two-year period," he said "Wouldn't you call attention to the success of the project and try to really explain how we brought numbers down?"

Julianne Holt-Lunstad, a professor of psychology at Brigham Young University who served as the lead science editor of the advisory, says that loneliness is pervasive enough to be a major concern. But even she admits that it's not clear whether loneliness is getting worse. "We can debate what that exact prevalence rate is and whether it's going up or not," she says. 

Some of the adverse health outcomes the report warns about are questionable. "The surgeon general has rung an alarm bell that is not as clearly causal as the report shows," says Dave Sbarra, a professor of psychology at the University of Arizona whose research the surgeon general cites in his advisory. "Some of the conclusions go beyond the extant data." In particular, the claim in one chart in the advisory that "lacking social connection is as dangerous as smoking 15 cigarettes a day," he says, is "terribly misleading." 

Murthy declined to speak with me for this story. His office said they stand by the advisory, and that it followed the CDC's definition of an epidemic. Still, just four years ago, Murthy himself recognized the uncertainty around health outcomes. He told the Freakonomics podcast that just how loneliness impacts our health is "still in the very early stages of being understood." While we have data that show association, we have fewer studies that prove causation, he added.

The bigger worry is that misdiagnosing loneliness may lead to the wrong treatments.

Most of the solutions proposed by Murthy, politicians, influencers, and startups tend to focus on one person's behavior. "Answer that phone call from a friend," Murthy writes in the report. "Express yourself authentically." But many experts argue that loneliness and social disconnection are symptoms of deep societal problems, including poverty and inadequate healthcare. Calling it a "loneliness epidemic," then, may be a bit like calling COVID a "sneezing pandemic." Holt-Lunstad worries that working to eliminate loneliness is "kind of like getting rid of pain without actually addressing the source of the pain." As we exaggerate or misunderstand loneliness, it will be harder to find solutions that actually help those who are most vulnerable. 

L oneliness is a modern condition in human history, and it remains ill-defined and poorly measured.

Before about 1800, "loneliness" was barely used in the English language. It evolved from the word "oneliness," which just meant "alone" and didn't carry the same emotional baggage. Many early Americans embraced being alone as a way to be closer to God . 

As Western industrialization and secularism emphasized the individual, society began to view loneliness as distinct from solitude — and as a loathsome experience to be avoided at all costs . Soon marketers began touting technology as a means to alleviate it; a 1912 Bell Telephone ad bragged that the telephone "banishes loneliness." By the mid-20th century, dissecting loneliness was en vogue among everyone from The Beatles to the famed sociologist David Riesman . And in 1978, psychologists at the University of California Los Angeles released a set of survey questions called the Loneliness Scale, which nearly 50 years later remains the closest thing we have to a standardized metric in America. 

It's like we have one word for 'snow' and we need to find the Eskimos of loneliness. Eric Klinenberg

Like any subjective experience, loneliness is tricky to measure. And it's often conflated with being socially isolated, which means having few social relationships and interactions and can be measured more objectively. "You can be isolated and not lonely, you can be lonely and not isolated," Holt-Lunstad says. The public uses loneliness as "a catch-all," she says, to describe a slew of other phenomena, including poor-quality relationships. The Chamber of Commerce recently named Washington, DC, the loneliest city in America simply because it has the highest proportion of one-person households, despite research that suggests people who live alone actually socialize more than their married counterparts. 

The standard 20-question UCLA Loneliness Scale asks participants to rate their relationships and feelings of connectedness, including "How often do you feel part of a group of friends?"  and "How often do you feel that no one really knows you well?" I've answered the survey multiple times. While I've consistently gotten a low score — indicating I'm not particularly lonely — I've noticed that my answers depend somewhat on how I'm feeling that day. I'm more likely to say I feel isolated from others "sometimes" if I've worked long hours from my apartment and not the office that week.

While the scale is intended to measure how people feel in general, not in the moment, there's no universally agreed-upon way to use it. Many surveys, in fact, use an abridged version that asks only three questions. "The problem is that we have different studies that will either be using a different form of the UCLA Loneliness Scale or they will score it differently," Holt-Lunstad says.

The scale determines whether someone has a low, moderate, moderately high, or high degree of loneliness. Some studies count both moderate and severe — resulting in studies that show more than half the population is lonely — while others focus just on severe cases . Other studies — not referenced in the surgeon general's report but widely cited in media — abandon any kind of standard. "There are many, many surveys that are just making up questions about loneliness and are not using the UCLA Loneliness Scale or some other validated loneliness scale," she says.

Another complicating factor: Not all loneliness is bad. Many psychologists see what they call transient loneliness as a healthy type of biological alarm system that, like hunger or thirst, prompts someone to reconnect when they find themselves on the social periphery.

What's actually harmful, researchers believe, is chronic loneliness, which tends to be self-perpetuating and destructive. Regularly feeling lonely is "a form of negative information bias, where people tend to look for confirming evidence that they are on the social periphery, pay attention to negative information, and get stuck in this sort of loop," Sbarra says.

But chronic and transient loneliness also aren't clearly quantified. The surgeon general's report doesn't explain the difference between the two or offer any measure of either. As Klinenberg puts it, "It's like we have one word for 'snow' and we need to find the Eskimos of loneliness." 

While the "loneliness epidemic" may be an exaggeration, it's one we're overwhelmingly convinced is real — partly because we're very eager to believe that things have changed for the worse. The social psychologist Adam Mastroianni has found that the belief in moral decline over time is a timeless feature of human psychology. We're both biased toward latching on to the negative news we hear today and more likely to remember happy memories from yesterday. Public intellectuals and politicians perennially argue, baselessly, that Americans are meaner and sadder than ever before. 

"They see things that have definitely changed — like people didn't used to have smartphones and now they do — and assume that they know what those changes mean for the human experience," Mastroianni says. "Part of that is underestimating the extent to which people adapt to changes in their environment."

If people believe something has recently gotten worse, they're more likely to believe it can be fixed. So framing loneliness as a modern epidemic makes sense, Mastroianni says, if the goal is to get the public to care about an age-old problem. "Newer problems seem more urgent. There's a very low threshold for people to claim a crisis."

Loneliness is also an attractive, easily understood, widely relatable issue, and it's largely apolitical. Both Republican and Democratic politicians say they care about social disconnection, despite using it to explain different social phenomena and prescribing different solutions. The Biden administration isn't facing the kind of political backlash it has when addressing other public-health issues, such as gun violence or COVID-19.

Beyond semantics, muddying the problem of loneliness and isolation does a disservice to deeper societal issues. 

As Jill Lepore has written , Murthy tends to point to loneliness as the root of all mental, physical, and social defects. His "everything-can-be-reduced-to-loneliness argument" suggests that the solution to social disconnection is a fundamental shift in how Americans live, rather than a set of concrete solutions to issues like poverty and discrimination. "That's not a policy agenda. That's an indictment of modern life," she writes.

Though he does outline a few policy fixes for loneliness in his report — investing in social infrastructure like libraries and funding more scientific research on loneliness — Murthy is consumed with changing individual behavior. When he speaks publicly, he advises doing acts of service, calling our friends instead of passively scrolling social media, and leaving voicemails instead of sending texts. He talks about creating a movement to prioritize social connection and a " connection challenge " in which Americans measure their social interactions like steps on a Fitbit.

"Investing in libraries and in accessible parks and gardens and senior centers — that's going to be much more powerful than answering the phone when your friend calls."

Last October, Eric Klinenberg asked Murthy to describe what collective, rather than individual, solutions would alleviate loneliness. But the surgeon general doubled down on his list of intangibles: kindness, generosity, service, and friendship were his primary fixes. 

"The movement to rebuild connection is not first and foremost about policies, and it's not even about programs. It's about a fundamental moral choice that we have to make about what kind of society we want to live in," Murthy said.

The surgeon general is right that American life has become far more atomized and asocial , but urging people to put away their phones at dinner isn't the kind of structural fix Americans look to public-health officials for, nor does it address why people are lonely in the first place. "These are great things to do for relationships — they would definitely help people feel more connected to those around them," Klinenberg says. "But this is not 'invest in a better healthcare system so that people know that they're gonna be taken care of if they're sick.'"

Attention and resources in the world of public health are finite, and overstating the pervasiveness of loneliness could distract from more profound political problems — like failures in the healthcare system, student debt, and struggling schools — that feed loneliness and sow distrust in institutions. Unsurprisingly, the most marginalized groups in society — people with low incomes, those who are sick, people of color, and queer people — are the most at risk for being lonely, research shows . Rebuilding the social safety net and expanding access to public centers of community are key solutions to what Klinenberg calls not a loneliness epidemic, but "structural isolation."

"It feels to me like a bit of a political dodge," Klinenberg says. "Really investing in libraries and in accessible parks and gardens and senior centers and athletic facilities and public plazas that work as gathering places — that's going to be much more powerful than answering the phone when your friend calls."

There's also a risk that alarmism or conflating guidance about loneliness will dilute the influence of public-health officials' warnings. In 2020, Jerome Adams, the surgeon general at the time, infamously told Americans to stop buying masks because they weren't effective in stopping the spread of COVID-19. Later, of course, we knew better, but the damage had been done.

For all the attention he's drawn to loneliness and isolation in America, to cure the problem, Dr. Loneliness needs a second opinion.

Eliza Relman  is a policy correspondent focused on housing, transportation, and infrastructure on Insider's economy team.

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Wednesday, April 10 marks National Youth HIV & AIDS Awareness Day (NYHAAD). It has been commemorated annually since 2013 and is directed by Advocates for Youth Exit Disclaimer , an organization that partners with young people and their adult allies to promote effective adolescent reproductive and sexual health programs and policies. NYHAAD is a day to educate and urge policymakers and the public to act regarding the impact of HIV on young people, as well as highlight the HIV prevention, treatment, and care campaigns for this community.

According to the CDC, youth between the ages of  13 to 24 made up 19% of all new HIV diagnoses  in the United States in 2021. The CDC also reports that they are the least likely of any age group to be aware of their HIV infection. Thus, it is key for youth to have access to and receive HIV education, prevention, and testing, as, per the CDC, in 2021 only 6% of high school students have ever been tested for HIV (PDF, 9.88MB). NYHAAD is a crucial part of ongoing efforts to end the HIV epidemic and provides the opportunity to raise awareness about the impact of HIV and AIDS on youth and share important resources that can help combat the HIV epidemic. Please use the resources below to support the ongoing efforts to reduce HIV and AIDS in this community.

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