Among the vulnerable groups requiring extra precaution during the COVID-19 pandemic, people living with HIV face a wide range of potential risks and challenges. While the risk of COVID-19 infection in those on effective treatment is not believed to be greater than that of individuals without HIV, the risk for severe illness may be elevated in older people with HIV and those with a low CD4 cell count and certain comorbid conditions.1
In addition to these direct effects of COVID-19, emerging findings have demonstrated the numerous ways in which the current global crisis is affecting various facets of life for people living with HIV, including increased rates of mental health and substance abuse issues. Initial data from an ongoing survey of long-term HIV survivors showed that nearly one-half of participants experienced sleep impairment, more than one-half reported anxiety, and 22.9% indicated depressive symptoms.4
These individuals have also experienced substantial disruption in medication adherence, with 28.6% having missed a dose since the pandemic began, and 11.4% of respondents “reported skipping meals or reducing portions because they were worried they didn’t have enough money for food,” according to a paper published in May 2020 in AIDS and Behavior.4 People living with HIV may also experience greater social isolation during the pandemic compared to other groups.
To learn more about the multifaceted effects of the COVID-19 pandemic on people living with HIV and how clinicians can best support these patients, we interviewed the following experts who have co-authored recently published papers pertaining to this topic.2-4
Tiffany Chenneville, PhD, the Marie E. and E. Leslie Cole Endowed Chair in Ethics and professor and chair of psychology at the University of South Florida St. Petersburg Campus.
Stephanie Shiau, PhD, instructor in the department of biostatistics and epidemiology at Rutgers School of Public Health in in Piscataway, New Jersey.
Annie Lu Nguyen, PhD, MPH, assistant professor of family medicine at the Keck School of Medicine at the University of Southern California in Alhambra, and chair of the Aging and Public Health Section of the American Public Health Association.
What are the anticipated or observed effects — including on mental health — of the COVID-19 pandemic on people living with HIV, including long-term survivors?
Dr Chenneville: I cannot comment on observed effects because I have not yet conducted research on the impact of the COVID-19 pandemic on people living with HIV, although I am working on getting such a study up and running. Anticipated effects largely relate to the health disparities associated with COVID-19 given that HIV disproportionately affects members of marginalized communities.
Dr Shiau: The COVID-19 pandemic has had an enormous impact on physical health and psychological well-being in the United States. The pandemic has led to many changes, including social distancing and restricted movement, school closures, and loss of employment. People living with HIV may already be suffering from mental health issues such as depression or anxiety, and they may also be at increased risk of mental health effects of the COVID-19 pandemic. These conditions can be further affected by additional psychosocial stressors and burdens, such as stigma, loneliness, and medical mistrust.
Studies of psychosocial impacts of COVID-19 in people with HIV are ongoing. A cross-sectional survey conducted among people living with HIV reported that COVID-19 and restricted measures have negatively impacted the well-being and HIV care of people with HIV, particularly those in low income settings.5 It is important to note that response to social distancing can be different across populations, particularly for people with HIV. A recent study among people with HIV found that experiences of HIV microaggressions were related to decisions about social distancing behaviors and choices.6
Dr Nguyen: In our research, we are seeing the pandemic have psychological impacts on people living with HIV, including long-term survivors and older people living with HIV. Rates of compliance with physical distancing and use of face coverings is very high, but people are fearful of catching the virus. We are seeing high rates of self-reported frustration, anxiousness, loneliness, and boredom. The social isolation that can result from physically distancing for a long time is a real concern. People are also reporting disruptions in sleep patterns, which may be related to feelings of anxiety and frustration.
Earlier on in the pandemic when many outpatient clinics were closed, many people reported missing health care appointments. This may have abated as clinics have opened up and many have pivoted to telehealth, but it’s important to note that not everyone has reliable internet connection or feels comfortable with these modalities. We are seeing some financial impacts in terms of food insecurity and difficulty paying rent or utility bills. I suspect that these financial impacts will amplify the longer the pandemic continues because of the financial stresses that come with reduction in hours worked and layoffs.
What are the immediate implications for clinicians regarding how to address these issues in practice and advocate for these patients?
Dr Chenneville: I think that clinicians can expect to see an increase in the already high rates of mental health issues that exist among people living with HIV. For example, clinicians should monitor for symptoms of anxiety, depression, and posttraumatic stress, as such symptoms may worsen in response to the pandemic itself (for example, fear of COVID-19) and its impact (such as unemployment). Clinicians should be prepared to implement evidence-based interventions to address mental health symptoms related to, or worsened by, COVID-19. Advocating for mental health parity in the US has always been important but seems even more important now given the mental health impact of COVID-19.
Dr Shiau: Innovative approaches are needed to consistently provide medications and psychosocial support to people living with HIV amidst current and future infectious disease outbreaks. These could include telemedicine approaches. However, it is important to be aware of the digital divide, as many populations — including the elderly, low-income populations, and populations in rural areas — may not have stable internet access. In addition, it will be important to consider the multiple health burdens faced by people with HIV, including structural barriers that can interact to exacerbate disease.
Dr Nguyen: One thing we asked on 2 surveys that we’ve conducted with older adults living with HIV is around taking medications, and we are seeing more than one-fourth of older adults living with HIV say that they’ve skipped a dose of their HIV medications during the pandemic. We don’t know how frequently they are skipping, but it’s worth noting to clinicians that anything they can do to support HIV medication adherence will be important — particularly because we know that the CDC has said HIV by itself is not a risk factor for serious complications related to COVID-19, but that’s with the caveat that it is well-controlled.
We also know that older adults living with HIV are at higher risk for underlying conditions that do increase risk for serious complications from COVID-19, so we want to make sure people are on top of their HIV medications to reduce these risks as much as possible. Screening for depression and anxiety, providing tips for self-care, and addressing psychological distress is also important.
What are additional needs in this area in terms of future planning and ensuring access to resources?
Dr Chenneville: Given the flood of resources directed toward COVID-19, which is completely understandable, mental health and other health care providers should be prepared for the inevitable outcomes associated with decreased funding for HIV prevention and treatment to include possibly an uptick in HIV rates and difficulties related to poor HIV disease management. Novel solutions are likely to be required to address the needs of people at risk for or living with HIV.
The provision of services via telehealth is likely to continue even once we are past the pandemic, so training on telehealth best practices will be important, especially given the stigma associated with HIV and resulting concerns about privacy and confidentiality. Best practices for telehealth in integrated care settings will be particularly important for infectious disease clinics using an integrated care model.
Dr Shiau: Internet access issues are critically important for telehealth to succeed. Social distancing campaigns need to consider COVID-19 related discrimination that can arise in public health messaging and interventions should consider psychosocial burdens and stressors for people with HIV.
Dr Nguyen: The long-term financial impacts are concerning to me because of the stress that comes with worrying about housing or being able to afford nutritious food. Health is so connected to all these things, not just taking medications and going to health care appointments, so I think providers may need to increase their index of curiosity about these things when encountering clients and patients. Be aware of local resources they might be able to provide to patients, and consider how these challenges might be the root cause of mental or psychological distress that may emerge later.
I also think this upscaling that we’re seeing with telehealth could be here to stay, and we’ll need to really think about how to makes this accessible to everyone. The social isolation piece is also something that deserves long-term attention because, although it is accentuated by the pandemic, social isolation is not a new issue for older adults in general. Creative ways to build social connectedness in local neighborhoods and within communities deserve attention.
What are other key points regarding this topic that you would like to note for clinicians?
Dr Chenneville: Although COVID-19 affects everyone, people of color and other marginalized communities are disproportionately affected. People living with HIV are particularly vulnerable to the negative impact of health disparities. This was true before the pandemic but is now amplified. Addressing health disparities at a systemic level will benefit not only people living with HIV but many others who experience stigma, discrimination, and limited access to healthcare services as a result of their intersecting and stigmatized identities (eg, race, ethnicity, gender identity, sexual orientation, disability).
2. Chenneville T, Gabbidon K, Hanson P, Holyfield C. The impact of COVID-19 on HIV treatment and research: A call to action. Int J Environ Res Public Health. 2020;17(12):4548. doi:10.3390/ijerph17124548
3. Shiau S, Krause KD, Valera P, Swaminathan S, Halkitis PN. The burden of COVID-19 in people living with HIV: A syndemic perspective. AIDS Behav. 2020;24(8):2244-2249. doi:10.1007/s10461-020-02871-9
4. Nguyen AL, Christensen C, Taylor J, Brown B. Leaning on community-based participatory research to respond during COVID-19. AIDS Behav. 2020;24(10):2773-2775. doi:10.1007/s10461-020-02922-1
5. Siewe Fodjo JN, Villela EFM, Van Hees S, et al. The Centers for Disease Control and Prevention. Impact of the COVID-19 pandemic on the medical follow-up and psychosocial well-being of people living with HIV: a cross-sectional survey. J Acquir Immune Defic Syndr. 2020;85(3):257-262. doi:10.1097/QAI.0000000000002468
6. Berman M, Eaton LA, Watson RJ, Andrepont JL, Kalichman S. Social distancing to mitigate COVID-19 risks is associated with COVID-19 discriminatory attitudes among people living with HIV. Ann Behav Med. 2020;54(10):728-737. doi:10.1093/abm/kaaa074