“You need to figure out who’s in it for the long haul.”

In this class, Dr. Gregg Gonsalves spoke to the challenges and nuances of public health activism. What I found particularly interesting was the discussion of the sustainability of these movements. Many efforts that groups like ACT UP make are on the local level, looking to support communities in tangible ways. But what happens when our local efforts are met with continuous push-back? How can we guarantee that our efforts are sustainable?

When I asked these questions, Dr. Gonsalves offered meaningful insight from his involvement with ACT UP. The lessons we learned about local advocacy from the HIV pandemic are applicable to COVID-19, so it is important that we reflect on what we have learned:

• First, we have to create a network of support and care. To do meaningful work, we have to do it together. Burnout impacts everyone, but when we create a team that supports each other, the burnout of one individual does not mean the collapse of an initiative. During the HIV pandemic, people could meet up and express their support for each other in physical and interpersonal ways, be it discussions over a meal or a march. This was not as possible during COVID-19, since seeing each other face-to-face was restricted. Still, we can create a network of care by checking in with each other through phone calls or letters.
• Second, we have to be in it for the long haul. We are not going to see the end of this fight any time soon, but we have to ensure that we will keep going. The social issues that we saw with the HIV pandemic re-emerged with COVID-19 and Monkeypox. But in response to this, activists re-emerged as well. Those in the AIDS generation found themselves working with young folk in the COVID-19 generation, teaching them how to be successful public health advocates.
• Third, we have to find individuals to pass along the torch to. As mentioned before, it is unlikely that any individual solves a crisis by the end of his lifetime in a sustainable matter. We must find people who will make sure that any established efforts are on-going.

Being a true advocate for public health means to support the health of others around us. We have to recognize that health is not individualized– it is crucial to monitor and maintain the health of our communities. This can be done with a dedicated team that is intergenerational and interdisciplinary. Our polarized political landscape has made it difficult for us to form these teams. But at the heart of public health is collaboration, so we must find a middleground and make compromises to support the health of all.

Thinking back to the COVID-19 pandemic, many of us– including myself– were guilty of saying the phrase “we are all in the same boat.” For me, the pandemic offered a common goal that united me with members of my community. Upon reading the Viral Underclass and speaking with author and journalist Steven Thrasher, I realized that my approach was more privileged than I ever thought before. While we were all in some boat, that does not mean we were all in the same one– some of us had yachts and others had driftwood. Rough seas did not affect us all the same.

HIV

The social treatment of an HIV positive individual depended on the social group they ascribed to. Steven Thrasher explained that if you were one of the three “H’s” (heterosexual, heroine user, or Haitian), then no one cared how HIV affected you. It is not dramatic to say that a vast proportion of these individuals were also poor, showing how wealth impacts the respect/grace that people receive when they fall sick. Wealth disparities were widened by the HIV pandemic, showing how poor people are treated with little respect– even when they are sick. Both wealth and health are moralized.

COVID-19

Many might remember a video released early into the COVID-19 pandemic when several celebrities recorded clips of them sitting in their multi-million dollar mansions singing “Imagine” — in different keys, I might add. Not only were they literally tone-deaf, but also vastly unaware of how the COVID-19 pandemic might be for people who weren’t as rich and fit as them.

A comment under the video by user Alexa Ofelia puts it well:

If these celebrities were to contract COVID-19, it would likely be nothing more that a cold and few days of sickness. For others not so fortunate, testing positive for COVID-19 could be devastating.

Overall, everyone should be more aware that we are not all in the same boat. When we continue to perpetuate the idea that health crises are “equalizers” that put us all on the same playing field, the struggles of those who are in disadvantaged social groups become invisible, and we fail to create solutions that help everyone.

In many early civilizations, health beliefs and practices where generated from religious or spiritual paradigms. While advances in biomedicine have allowed scientists to better explain the mechanisms of disease, the importance of religion in how we illness has remained. In her lecture, Musa Dube speaks to the influence of religious leaders as public health advocates.

Religion and HIV

Referencing her own experience during the HIV/AIDS epidemic, Musa Dube explained how she used Bible passages to show support for those with HIV. The social view of HIV at the time was that it was a “gay” disease that only affected men who had sex with men. Do to its perceived tied with homosexuality, many religious groups and organizations opposed those with HIV. Through religion, HIV was moralized in a way where those with the diagnosis were seen as evil or bad. It is clear that religion and spirituality are integral aspects of health and illness, especially during the HIV pandemic.

Religion and COVID-19

While religion was not used to blatantly discriminate against those with COVID-19 like seen during HIV, religion still played a huge role. According to results from the Pew Research Center, in 11 of 14 countries surveyed, the share who say their religious faith has strengthened is higher than the share who say it has weakened, including in the United States. During isolation or any time of health crisis, a connection to some community is integral. In this case, many found connection in religious or spiritual faith. Personally, I noticed that my own mother (who was previously not very spiritual) begin to do daily rituals connected to the Hindu faith. When I asked why, she said that these prayers and practices gave her a sense of routine in a time of limbo. Though she has begun to go back to the office again for work, my mother still continues to engage in these spiritual practices, as they make her feel more grounded.

During any crisis, a connection to community is critical. When individuals share any sort of belief or practice, it is easier to begin to work together to formulate solutions. As Musa Dube detailed in her lecture, religion can be a uniting force. So, during health crises like the HIV/AIDS and COVID-19 pandemic, we must consider religion and spirituality as a tool for connection.

During public health crises, the most important communications lie between health experts and the public. As Susan Channa discussed in her talk, a major pitfall of communication during the COVID-19 pandemic was that experts and organizations like the CDC failed to communicate information like number of cases and precautions early enough. As such, the public turned to either social media platforms or news sources for help. While some sources like the NYTimes COVID Tracker provided generally helpful and reliable data, other platforms spread misinformation. The communications of experts and organizations like the CDC are crucial to ensuring that false “truths” don not spread alongside illness. In the World Health Organization Bulletin, Rajiv N Rimal and Maria K Lapinski detail that there are three crucial considerations of health communications: first, that communications do not fall into a social vacuum; second, that messengers should expect discrepancies among the information disseminated by the source and received by the listener; and third, that the roles in communication are dynamic such that the source and receivers of information frequently switch positions. Given that pandemics introduce health crises to a large group of people, it is important to apply these considerations to health communications during HIV and COVID-19.

HIV

During the HIV pandemic, communications remained in a social vacuum and were not brought to the public until later into the crisis. In the beginning, most discussions around the virus occurred in LGBTQ+ spaces and among infectious disease specialists. However, through protests and campaigns, activists were able to bring the issue into the public sphere. As Ms. Thurman mentioned in her talk last week, these messengers were vital in bringing the discussion to the table. However, misinformation about HIV/AIDS was rampant, with individuals believing you could contract the virus from a toilet seat or even by touching an “infected” surface. These myths about HIV made public health communications even more difficult.

COVID-19

Similar to the HIV pandemic, we saw myths about the nature of COVID-19 enter into the public sphere. This time, however, social media was the main culprit. Instead of misinformation being spread face-to-face as seen for HIV, misinformed posts were shared screen-to-screen.To combat this, the CDC worked with platforms to create notifications that the information in the Tweet or post might not be “reliable” and that updates could be found on the CDC website. However, it may have been better if the information in each post could be reviewed and “debunked.” Working with communication scientists, computer programmers, and health experts, an algorithm or system could have been created to do this. For the future, health experts should collaborate more with communication scientists to track the spread of misinformation.

During the 15th century, the Western world saw a widespread outbreak of syphilis. The Germans called it the “French disease,” the French called it the “Italian disease,” Italians called it the “Russian disease,” Russians called it the “Polish disease,” and the Polish called it the “German disease.” Though syphilis has no way of knowing someone’s nationality, it seems that, on the societal level, we have a tendency to alienate the sick and to deem infected individuals as “other.”

Though we have certainly changed our response to public health crises since the 15th century, our instinct to “otherize” diseases has remained. This instinct extends to some of our highest societal systems, including our governing bodies. As such, we see that disease is a social justice issue just as much as it is a health one.

Similarities with government response to HIV/AIDS and COVID-19

In both the HIV/AIDS and COVID-19 pandemic, government leaders tried to convince the nation that the disease was not an “us” problem, but a “them problem.” During her lecture, Sandra Thurman described government officials like Jesse Helms who, due to “religious” beliefs, refused to even mention homosexuality to the public. This posed a dangerous issue in which gay/bisexual men who were at the greatest risk for being exposed to HIV at the time did not obtain health knowledge on the disease. This stigma around sexuality and HIV/AIDS showed that homophobia and bias affected how our government responded to the virus.

Bias infected our response to COVID-19 as well. Frequently, former President Trump would refer to COVID-19 as a “Chinese virus” in the attempts to distance the disease from Americans. Through this racist rhetoric, he shifted the blame onto China. However, blaming another nation for a particular disease does not prevent United States citizens from dying from it.

The biased rhetoric of our government leaders in both the HIV/AIDS and COVID-19 pandemic slowed the spread of much-needed surveillance, prevention, treatment, and information to the nation while the spread of diseases accelerated. The sick– not the sickness– became the enemy.

Differences with government response to HIV/AIDS and COVID-19

While bias in the rhetoric of government officials were present in both pandemics, the timeline of response differs. Former President Reagan did not even reference HIV/AIDS in a speech until 4 years into the crisis. On the other hand, government officials and organizations like the CDC referred to COVID-19 as early as 2019. This is partly due to advents in communication. For example, platforms like Twitter made it easier for government officials to address their constituents. The response to the COVID-19 pandemic occurred closer to recognition of the disease than the response to HIV/AIDS pandemic.