Lessons from HIV, Ebola can help mitigate COVID-19 stigma
Gitanjali Pai, MD, AAHIVS, has devised a way to shield patients from the stigma of an HIV diagnosis and encourage them to continue to seek care.
“At the end of the visit, I provide patients with bags from the local grocery store so that neighbors or anybody in the community would simply think that the patient had been out grocery shopping, rather than at the HIV clinic,” said Pai, an Infectious Disease News Editorial Board Member and infectious disease physician at Memorial Hospital and Physicians’ Clinic in Stilwell, Oklahoma.
Stigma has long been a barrier to care for patients with HIV, Ebola and other infectious diseases, which “often lead to some form of disaffection with the infected persons,” Pai said.
“The mildest word we have today is ‘quarantine.’ Earlier, we had ostracizing and cruel phenomena like branding,” Pai said. “Diseases like leprosy and smallpox were dreaded because of the physical disfigurement that remained even after a person was cured. We saw the extreme form of stigmatization in the case of HIV. The perceived amoral behavior attributed to HIV infection — and the gossip and taunts that can follow patients with HIV — naturally make people sad, helpless and anxious about the future. The discrimination, which unfortunately persists even almost 40 years after HIV was discovered, may lead to depression.”
Patients who have recovered from Ebola also may face discrimination, primarily due to fear, ignorance and anxiety because “everyone” is susceptible to this illness, Pai said. A similar stigmatization of COVID-19 survivors is beginning to emerge for the same reason, she added.
Infectious Disease News spoke with Pai and other infectious disease experts about the stigma faced by patients with HIV, Ebola and COVID-19 — including health care workers (HCWs) — and the steps that can be taken to reduce it.
Decades later, HIV stigma remains
The early days of the HIV/AIDS epidemic were associated with a significant amount of stigma based on the many unknowns about the disease, including how it was spread and the fact that it was, initially, largely fatal. AIDS was characterized as “a gay man’s disease,” because the majority of the earliest cases of AIDS were identified in men who have sex with men (MSM), according to experts.
Decades later, mechanisms of transmission are well known, effective treatment allows patients to live nearly as long as those without HIV, and strategies to prevent HIV, including pre-exposure prophylaxis (PrEP), are numerous. However, HIV stigma persists.
Data presented at the 2011 International AIDS Society Conference outlined HIV-related stigma and reported experiences with discrimination using pooled survey data from 900 participants living with HIV/AIDS. Results demonstrated that greater economic need (OR = 1.82; 95% CI, 1.3-2.5), having ever exchanged sex for money (OR = 2.4; 95% CI, 1.4-4.2), lower acceptance of HIV diagnosis (OR = 4.7; 95% CI, 3.4-6.5) and being nonwhite (OR = 1.6; 95% CI, 1.12-2.28) all correlated with HIV stigma and discrimination.
“I think, at first, the stigma was related to not knowing much about the communities at highest risk for AIDS — members of the gay community and injection drug users,” said Paul A. Volberding, MD, Chief Medical Editor of Infectious Disease News and professor of medicine and director of the AIDS Research Institute at the University of California, San Francisco. “I think that’s been corrected, though more in the case of MSM than injection drug users. I think people still have a lot of stigma about injection drug use.”
Despite the availability of transportation to health care providers and access to free or low-cost care, many people with HIV in Pai’s practice put off HIV care because of stigma. She explained that these services can lead to questions from neighbors, putting the patient at risk for being “discovered.”
“They feel they would be ostracized by society if their HIV status was known,” Pai said. “Of course, this is highly detrimental not only to the patient, but their families as well as the community. Stigma is a real and concrete barrier to seeking health care.”
Patients going untreated because of stigma fuels further transmission and creates HIV hotspots, Pai said.
“Once I listened to all my patients and noted this pattern, I was aghast at the extreme lengths people go to in order to conceal their diagnoses — even at the cost of their health and lives,” she said.
Pai said patients are grateful that she addresses their concerns about stigma. She has noticed improvements in patients’ participation in HIV care and compliance with treatment as a result of these measures.
Studies have shown what Pai has experienced to be true. Findings in the Journal of Clinical and Translational Science showed that patients who receive HIV care at clinics that offer text message appointment reminders and stigma support services, including mental health providers and onsite social workers, are approximately 10% more likely to be retained in care than patients who use clinics that do not offer these services.
Stigma can also prevent people from protecting themselves against HIV. According to the CDC, PrEP reduces the risk for HIV by almost 100% when taken daily, but uptake among at-risk populations remains an issue and stigma is widely seen as a barrier to using the medication.
‘A bewitched disease’
Misconceptions and a lack of knowledge about transmission can also lead to the stigmatization of Ebola survivors.
According to an article written in the Bulletin of the World Health Organization about the West African Ebola epidemic, survivors “experience psychosocial consequences due to feelings of shame or guilt ... and stigmatization of blame from their communities.”
“Fear and stigma of Ebola are contributed to by cultural beliefs (eg, being a bewitched disease with those affected at fault or deserving their illness), widespread fears due to high infection risk, lack of information and misinformation,” the researchers wrote.
Contacts of patients infected with Ebola also experience stigma, as do HCWs returning from affected countries, the researchers wrote.
“Stigma is context dependent, meaning that the experience of stigma is going to vary from province to province, country to country, and even in the same place at a different time as beliefs, knowledge and attitudes change, so it’s difficult to define the scope of the problem as a whole,” Kevin M. De Cock, MD, special advisor to the Center for Global Health at Dartmouth College, told Infectious Disease News. “However, we know that stigma is a common experience among Ebola survivors when they return home, which is why, during Ebola responses, there are great efforts to educate communities about survivors and encourage them to welcome them home after treatment.”
De Cock explained that one of the challenges is the sensitivity needed to communicate with communities about sexual transmission.
“Although sexual transmission of Ebola is rare, it is possible, and therefore, it’s important to provide accurate and timely information to survivors and communities about how to protect themselves and their partners,” De Cock said. “This not only reduces risk of transmission if preventive actions are taken but also avoids the spreading of misinformation that can lead to stigmatization.”
WHO released interim guidelines in 2015 that suggested male Ebola survivors be offered semen testing for Ebola virus RNA in addition to receiving condoms and sexual risk reduction counseling at the time of discharge from an Ebola treatment center. In response to these recommendations, Liberia launched the Men’s Health Screening Program. The program was open to all male survivors of Ebola aged at least 15 years of age and provided regular semen testing, safe sex counseling, condoms and referrals to health care services. Data from the program showed that 11% of the 228 participants enrolled at the 6-month mark had produced at least one positive sample. Only four participants had recorded two consecutive negative samples.
A later study from 2019 demonstrated the long-term presence of Ebola RNA in breast milk and semen samples from survivors of the West African epidemic, including almost 10% of male survivors who tested positive in at least one semen sample. Researchers calculated the probability of semen remaining positive for Ebola to be 93.02% and 60.12% after 3 and 6 months, respectively. They also identified Ebola RNA in the breast milk of two of 168 survivors who were tested. Ebola RNA was detectable in breast milk from a woman 1 month after she gave birth, which was 500 days after she was discharged from the Ebola treatment unit.
Concerns about hospital infection during and after the West African epidemic led to a 30% decline in facility-based deliveries among women in one rural Liberian county that was attributed to the stigma associated with Ebola. According to the adjusted results of a household survey, 56% of women believed health facilities to be a source of Ebola transmission. Survey respondents were 41% less likely have a facility-based delivery during the epidemic after similar adjustments were accounted for, whereas those who were not concerned with hospital transmission were 10% less likely to do so.
“Whether someone is an Ebola survivor or facing stigma as a result of another disease, rejection, judgment or suspicion about different treatments by one’s community can take a toll on the mental health of a survivor,” De Cock said. “It may also impact their ability to live and work in a community if they are barred from their homes, markets or workplaces despite posing no health risk to people at these locations, with the exception of the possibility of sexual transmission with partners. In some cases, they may even be at higher risk for physical violence.”
‘It’s happening right now with COVID-19’
Like HIV and Ebola, the many unknowns associated with the COVID-19 pandemic may result in a stigmatization of patients who survive the new illness, according to Pai.
Questions persist about the number of people who have been infected, hospitalized with and died from COVID-19, the main drivers of mortality and whether antibodies prevent reinfection — and, if so, for how long, she said. The role of seasonality is uncertain, there are no definitive treatments and the long-term consequences for survivors also remain unclear.
“The surge in the number of people contracting and dying from COVID-19 has led people to form a negative association with the patients,” she said. “Add to that the fear of the unknown, with so many aspects of this disease still unclear, and you can see the beginning of stigmatization.”
Pai believes that patients who have recovered from COVID-19 will be stigmatized — not physically but mentally — after experiencing an illness that spreads easily and quickly and can cause a rapid decline in health. Because of this, she said, it is not surprising that patients and survivors experience anxiety, paranoia and potentially depression.
Stigma related to surviving COVID-19 may be compounded by ageism for some patients, according to Volberding.
“Some people have said, ‘Let the virus circulate through the population. So what if old people die?’ This is from the misperception that young people are somehow not at risk for COVID-19,” he said.
De Cock said stigmatization associated with COVID-19 emerged early on and was focused on individuals perceived to be of Chinese descent and those who were sick or at risk for the virus.
“Much of the stigmatization we’ve seen around COVID-19 has been toward people of Chinese origin or people who are perceived to be of Chinese origin,” he said. “However, people of Asian descent, including Chinese people, are not more likely to get the new coronavirus than anyone else.”
He said other people, including those who have been quarantined, HCWs and emergency responders, may also be stigmatized.
Although there are no data on the prevalence of stigma among COVID-19 survivors, patients who have COVID-19 — or have recovered from it — are already being stigmatized in several ways, said Infectious Disease News Editorial Board Member Peter Chin-Hong, MD, professor of medicine and director of the transplant infectious disease program at the University of California, San Francisco.
“People in the community tend to avoid them, ignore them or spread misinformation about them. But that is really driven by lack of knowledge,” Chin-Hong told Infectious Disease News. “There is also mixed messaging coming from the government.”
The experts who spoke with Infectious Disease News agreed that the best way to prevent stigma is through education.
“We must strive, as a society, to be mature enough and not show any unfairness in our behavior,” Pai said. “This can be achieved by rigorous public awareness campaigns to dispel myths about COVID-19.”
Pai said that ramping up testing capabilities, containing the spread and developing both curative and preventive treatments are also important.
Chin-Hong suggested that, moving forward, clinicians use lessons learned from the HIV epidemic to help patients with COVID-19 who may experience similar discrimination. The first step is arming patients with science and facts — something that has not been easy considering there is no central voice of science for the U.S. epidemic, Chin-Hong said — and educating the community about transmission and personal safety and prevention.
Taking generalized messages and tips and making them more specific for a certain culture or group also can be helpful. Chin-Hong used the grocery store as an example.
“How can you stay 6 feet away from each other if you work in a grocery store or if you are an essential worker in a warehouse? You have to help people make modifications in those instances,” he said. “In this scenario, community masking is important.”
He also encouraged those who are in a position to do so to correct others who are sharing false information or rumors. Finally, he hopes that individuals who have experienced COVID-19 firsthand share their story to demystify it and ease others’ anxieties and fears.
“Fear is generally what drives stigma,” Chin-Hong said. “We’ve seen that play out time and time again, and it’s happening right now with COVID-19.”
HCWs and stigma
A lack of understanding about how certain diseases are transmitted also has fueled stigma among HCWs who treat these patients.
“We know that some HCWs who treat patients with infectious diseases like HIV and Ebola face stigma from their communities. Sometimes the stigma stems from their risk for infection and therefore the potential threat they are believed to pose to the community, but it can also be tied to other concerns a community has,” De Cock said. “For example, in an environment where there is a lot of mistrust in the local government, a community might extend that mistrust and stigmatize HCWs employed by a government-run health facility.”
Volberding said some HCWs treating patients with COVID-19 are concerned about spreading the infection to their families when they go home, causing them to isolate themselves or go through “extreme disinfection rituals.”
“Those are completely understandable, especially given how little we know about this virus,” Volberding said. “I would guess that some of these people are feeling the same kind of fear with COVID-19 that we saw with HIV, which is part of stigma.”
According to Pai, frontline workers who have been exposed to the virus have experienced mental stigma and social boycotting — especially in rural communities where lack of knowledge is high.
“I am aware of an example where EMTs were asked to isolate themselves and stay outside of town,” she said. “We have to remember that HCWs are also human beings and they are susceptible to all human emotions.”
She said it is “natural” for people to think HCWs are a conduit for transmission because of their association with infected people.
“Many times, people know that they are being unfair, but their survival instinct gets the better of them and they start discriminating against HCWs,” she said.
However, Chin-Hong said that he has not experienced that degree of discrimination.
“I haven’t really experienced [stigma] myself in the U.S. except in sort of a mild way, when somebody sees you in scrubs going to the grocery store — they think you might be contaminated. But I have been impressed by the U.S. response because it is actually the opposite,” he said. “I feel a sense of something like pride and inspiration.”
He acknowledged that the same cannot be said in other countries, noting that there have been many instances where HCWs were attacked or even killed because they were thought to be contaminated.
As more becomes known about COVID-19, “saner voices have started prevailing,” Pai said. “Even small gestures such as clapping in honor of HCWs boosts their morale.”
Chin-Hong said there is a lot to be learned from previous epidemics to help understand — and eliminate — stigma related to COVID-19.
“Rather than reinventing the wheel, of course, we have to think about what is specific to COVID-19. Now is the time to have those conversations, because things will only get worse as more and more people become sick,” he said, adding that people who are supportive and understand the disease and the science behind it can come together to help each other.
Pai agreed, noting that lessening the stigma surrounding COVID-19 will require effort from “every single person” who interacts with patients.
“The path to normalcy is not easy,” Pai said. “Fear must be countered with facts.” – by Caitlyn Stulpin
Click here to read the At issue from Raghavendra Tirupathi, MD, FACP.
Click here to read the At issue from Wiley D. Jenkins, PhD, MPH, FACE.
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