Navigating the sixth wave of COVID-19 as a person living with HIV

As a person living with HIV, I receive regular calls and messages from my peers with COVID-19 questions: “When I visit my family, should I wear a mask?” “Should I get a fourth shot, and when?” “How can mask mandates be lifted when we are in a sixth wave?”.

While Canada wades through the sixth wave of the COVID-19 pandemic and second boosters are being rolled out, public health measures such as mask mandates and crowd limits are disappearing. This odd mix of messages presents daily, stressful choices for people with HIV trying to protect their health and live their lives. I’ve gathered a few of their most common questions and posed them to an expert: Dr. Cecilia Costiniuk, an investigator with the CIHR Canadian HIV Trials Network (CTN) and an associate professor in the Division of Infectious Diseases at McGill University.

What are the criteria to be considered immune compromised in the context of COVID-19?

Healthcare providers tend to think of several groups of people as being immunocompromised, including people receiving chemotherapy or other drugs that suppress the immune system, or if they have a disease or disorder that affects immunity. People with HIV who are not on treatment or with a CD4 count below 200 cells/mm³ are considered immune compromised. Immunocompromised people are considered most at risk to develop severe disease if they get infected with COVID-19. However, other risk factors are also important (for example, people over 75 years, or with severe lung disease, or on dialysis). If a person has many of these risk factors combined, they may be at particular risk from COVID-19. Generally, the most important factors that increase risk of death from COVID-19 are old age, being an organ transplant recipient, or a recent diagnosis of a blood cancer such as leukemia or lymphoma.

Now that mask mandates are being lifted, should I still wear a mask?

Yes. COVID-19 is far from being a thing of the past. Although mask mandates in some settings are being lifted, we must remember that masks have benefits both at the individual and community level. SARS-CoV-2, the virus that causes COVID-19, is primarily spread by inhalation of respiratory droplets when people breathe, talk, cough or sneeze. Masks have benefits both for the wearer as well as for those around the person and the community by reducing the spread of virus-containing droplets. Mask use is especially helpful when people are asymptomatic or pre-symptomatic and who feel well, since these people may be unaware of their infectiousness to others (estimated to account for more than 50% of SARS-CoV-2 transmissions). Masks reduce the risk of the wearer spreading COVID-19 if they are infectious. They also reduce the risk of the wearer inhaling infected droplets. The effectiveness of this combination (source control and filtration for wearer protection) increases with more people using masks consistently and correctly. Mask wearing is especially helpful when physical distancing is not possible or unpredictable.

How accurate are at-home rapid tests? What if I am experiencing COVID-19 symptoms after a large gathering but my tests keep showing negative?

Home antigen tests are much less reliable than PCR (nucleic acid or molecular) tests and a negative home antigen test does not rule out an infection. Here are some examples:

• If you have a negative test but have symptoms of COVID-19, you may have tested before the virus was detectable or you may have another illness, such as the flu.
• If you do not have symptoms of COVID-19 but were a close contact of someone with COVID-19 and you tested negative five days after exposure, that means the virus was not detected by the test. You are likely not infected, but an infection cannot be completely ruled out.

In general, home self-tests can be interpreted as follows:

• Positive results from self-tests are highly reliable and you can consider yourself to have COVID-19.
• Negative results from self-tests do not rule out COVID-19 infection. A negative self-test result may not be reliable, especially if you have symptoms associated with COVID-19.
• Invalid results from self-tests mean the test did not work properly, and a new test is needed.

What are the criteria to get a COVID-19 test?

This varies based on the province you are in. Some places have programs in place that distribute free COVID-19 rapid test kits and some have extensive testing programs. Visit your provincial or territorial government website to find out. The links for the provincial websites are listed on the Health Canada website, and have information on where to get a PCR test and where to get rapid tests.

What treatments are available for people with HIV who have COVID-19? How can I access them?

Health Canada has authorized a number of COVID-19 treatments. These treatments are available for provinces and territories to use in their healthcare systems. Each province and territory decides about the appropriate administration of these drugs based on their needs. These drugs are either antivirals or monoclonal antibodies. Antivirals stop virus replication, whereas monoclonal antibodies act like substitutes for antibodies against COVID-19 when the body does not make sufficient levels of antibodies themselves. However, people should remember that no drug is a substitute for vaccination. Vaccination is the most important tool in preventing serious illness from COVID-19 infection.

Paxlovid is the first oral and at-home COVID-19 treatment approved in Canada. It consists of two antiviral drugs, nirmatrelvir and ritonavir, and is used to treat symptomatic adults with mild to moderate COVID-19 who are at high risk of serious illness, including hospitalization or death. If you get COVID-19, you would need to discuss with your doctor whether you are a candidate for Paxlovid. It has many drug interactions, so it is important to ensure it is safe for you to take Paxlovid.

Evusheld, a combination of monoclonal antibodies, is an option for people who are immunocompromised and whose immune systems are unable to respond adequately to COVID‐19 vaccination, or for people who can’t get vaccinated. 

Remdesivir, an antiviral, is now also approved for treating COVID-19 at home. When administered within seven days of symptom onset, remdesivir reduces the need to hospitalizations in people at risk of developing severe COVID-19.

How do I manage going to a workplace or other environments that don’t have a mask mandate? Will I be singled out or stigmatized if I wear a mask?

Continuing to wear a mask should not put a person at risk of being singled out or stigmatized, since there remain benefits of continuing to wear a mask for both the individual and the community. However, stigma and misinformation remain, both of which are things that people living with HIV have unfortunately needed to face. One way to help stop stigma related to COVID-19, or any issue, is to know the facts and to share them with others. These are some suggestions from the U.S. Centers for Disease Control and Prevention to help reduce stigma:

How does “long COVID” affect people with HIV?

Most people with mild or moderate COVID-19 infection will have symptoms for about two weeks. However, some people will have persistent symptoms that linger for weeks or months (also known as long COVID or long-haulers). So far, there are only a few studies that have looked at long COVID in people with HIV. One study from a private clinic in India screened 94 people living with HIV for long COVID — 10 people (11%) had persistent symptoms at a median of 109 days since symptom onset. Another study in Italy included 123 people living with HIV and reported that the risk of developing long COVID was driven by similar factors as observed in the general population, including severity of COVID-19 infection and polypharmacy (more than two non-antiretroviral drugs per day, considered a proxy for having multiple morbidities). More information will likely emerge with more time. At the moment, there are not enough data available to say how long COVID may affect people with HIV compared to people without HIV.

The most common lasting symptoms are fatigue, shortness of breath, cough, joint pain and chest pain. Other symptoms are also sometimes reported, including cognitive problems, difficulty concentrating, depression, muscle pain, headache, rapid heartbeat and intermittent fever. The reason why long COVID develops in some people is still unclear.

Are people with HIV at greater risk for severe outcomes?

We don’t know. We still do not have enough information to answer this question confidently as we are still learning about how COVID-19 affects people living with HIV. A challenge with answering this question relates to the fact that almost half of people in North America with HIV are above 50 years old and have high rates of multimorbidity, like cardiovascular disease and cancer. Older age and multimorbidity are both risk factors for becoming very ill from COVID. Therefore, it can become complicated to tease out the relative effect of HIV infection versus other risk factors such as older age and multimorbidity. Furthermore, we are learning that the social determinants of health (the circumstances in which people are born, grow up, live, work and age, and the systems put in place to deal with illness) seem to play a major role in affecting disease outcome.

People living with HIV who have underlying health conditions such as obesity, poorly controlled diabetes, chronic kidney disease and high blood pressure appear to be at higher risk of serious illness if they contract COVID-19. Having a lower CD4 count (<200 cells/mm³), a detectable viral load, or not being on antiretrovirals are also risk factors for worse outcomes. These people also tend to have blunted response to many vaccinations, including COVID-19 vaccinations. Therefore, it is very important for people living with HIV to maintain excellent adherence to antiretrovirals and a healthy overall lifestyle. People should also ensure their other vaccinations are up-to-date, such as influenza and pneumococcal vaccines.

Shari Margolese has been an active advocate for people living with HIV since shortly after her own diagnosis in 1993. Shari currently serves as the community co-lead for Community Engagement Teams of the CIHR Canadian HIV Trials Network (CTN) and is the co-chair of the Canadian Cure Enterprise (CanCURE) community advisory committee. Shari lives in rural southwestern Ontario. 

Dr. Cecilia Costiniuk is an associate professor in the Division of Infectious Diseases at McGill University and an associate investigator in the Infectious Diseases and Immunity in Global Health Program at the McGill University Health Centre. She recently became co-lead of the Vaccines and Immunotherapies Core of the CIHR Canadian HIV Trials Network (CTN). Dr. Costiniuk is currently leading a study to understand the effectiveness of COVID-19 vaccination in people living with HIV (CTN 328). This study will help to determine the relative contribution of HIV infection to COVID-19 vaccine immune response compared to other risk factors such as older age and multimorbidity.