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COVID-19 and HIV: Improving Patient Education During and After the Pandemic

Sharon L. Walmsley, MSc, MD, FRCPC

University Health Network
University of Toronto
Toronto, Ontario


Sharon Walmsley, CM, MD, MSc, FRCPC, has disclosed that she has served as an advisor or consultant for Gilead Sciences, Janssen, Merck, and ViiV Healthcare; has served as a speaker or member of a speakers’ bureau for Gilead Sciences, Merck, and ViiV Healthcare; and has received funds for research support from Gilead Sciences, Merck, and ViiV Healthcare.


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Released: September 22, 2021

Among the many medical care challenges brought about by or underscored by the COVID-19 pandemic, patient education continues to be at the forefront, particularly for our patients with HIV (PWH). During the pandemic, there have been and continue to be many COVID-19–related concerns among PWH as well as considerable mistrust of information provided by the lay media. In particular, PWH worry that information for the general public may not be applicable specifically to them. Some of the questions that we have regularly addressed include:

  • Do PWH have an increased risk of acquiring COVID-19?
  • Do PWH have a greater risk of dying from COVID-19?
  • Is risk of COVID-19 acquisition and/or disease severity associated with CD4+ cell counts or HIV-1 RNA levels, or is it more likely to be associated with older age and/or underlying comorbidities? 

By contrast with concerns regarding increased risk, many persons had heard that their HIV drugs might protect them against COVID-19 and, therefore, believed that they did not need to be as concerned about exposure to others who may have COVID-19.

Delivering Timely, Reliable Patient Information During a Pandemic
Recognizing the need for PWH to have these questions answered by a trusted source, our clinic took the following actions: We posted frequently asked questions with detailed answers on the clinic website and we prepared standardized answers so that all of our staff were consistent in their responses when speaking with patients. We explained that many of the vulnerabilities associated with increased susceptibility to COVID-19, such as crowding living quarters, food insecurity, poverty, and frontline work, were overrepresented among PWH. We reinforced that they needed to adhere to public health advice for the general population and that although their HIV drugs did not have activity against the SARS-CoV-2 virus, being adherent to their antiretroviral therapy and maintaining viral suppression was an optimal approach for maintaining overall health. Our pharmacy arranged to courier their medications free of charge to prevent missed dosing, and we encouraged regular CD4+ cell count and HIV-1 RNA testing despite the pandemic restrictions.

Addressing Vaccine Concerns
When the COVID-19 vaccines became available, many more concerns arose:

  • Is the vaccine safe for me?
  • I heard PWH had more adverse events, is that true?
  • I heard that the vaccine will make my CD4+ cell count go down, is that true?
  • Will the vaccine work for me?

With the return of patients to the clinic, we were amazed at how many had not yet registered to receive a COVID-19 vaccine. It was not that they were anti-vaxxers, but rather that they wanted to discuss their questions and concerns with someone they could trust and someone who understood HIV.  

These types of conversations do not work well with bad cell phone connections, lack of privacy over video calls, and inability to ask all the questions that arise, so they were not able to obtain the information needed while in-person restrictions were in place. Thus, we began a second campaign of education—this time, face to face. We tried to explain that the number of PWH in the clinical trials of the vaccines was small, but that if their HIV was well controlled, the vaccine should be effective.

We explained that even if their immune responses were somewhat less robust than the general population, it nonetheless should protect them from becoming severely ill if they got COVID-19. We offered to help them register for vaccination, as many lacked the technology or English language skills to do so. We also offered them the option to participate in a clinical study in which we are evaluating immune responses (antibody and cellular) to the COVID-19 vaccine. The ability to contribute to our understanding of the vaccines specifically in PWH can be empowering for patients who feel hesitant in the absence of that information. We also assured them that there are no data demonstrating that the vaccine accelerates HIV disease or has more adverse events in PWH.

In the initial period after COVID-19 vaccines became available, many of our patients had the option to receive the AstraZeneca vaccine immediately or to wait for an mRNA vaccine, which brought on more questions. We did have some concerns about the possible increased risk of blood clots given the higher rate of thrombosis in PWH in general and the possible lower efficacy relative to the mRNA vaccines, but these concerns had to be weighed on an individual basis and balanced with the risk of COVID-19 exposure if vaccination were delayed.  

Pregnancy Concerns
Finally, many women with HIV in our care had concerns related to how they should deal with a potential pregnancy. Again, we reinforced the importance of good obstetric and HIV follow-up, despite the pandemic challenges. We have a trusted obstetrical partner with whom we kept in regular communication to address these concerns. We also ensured that antiretroviral therapy options were a part of the discussion. There is some evidence that COVID-19 infection during pregnancy may be associated with preterm birth, but the COVID-19 vaccines appear to be safe and effective in pregnant women, despite limited data. Therefore, we recommended COVID-19 vaccination as the best protection for pregnant women with HIV as well.

Final Thoughts
The COVID-19 pandemic is ongoing, and if or when a time comes that it can be considered formally over, the questions (eg, how do I know if I this is long-haul COVID-19? Do PWH need booster vaccines more frequently?), the uncertainty, and the longer-term physical and psychological effects of living through this time will continue to require healthcare professionals to serve as their patients’ most trusted source for reliable and straightforward information on what it all means for them. As such, we should continue to prioritize this important aspect of medical care and to think creatively about how best to meet this ongoing need.

Your Thoughts?
Do you feel confident answering your patients’ questions about COVID-19 and COVID-19 vaccines? Answer the polling question and join the conversation by posting in the discussion section.

Provided by Clinical Care Options, LLC

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This program is supported by an educational grant from
Gilead Sciences, Inc.
Janssen Therapeutics, Division of Janssen Products, LP
Merck Sharp & Dohme Corp.

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