The topic of death and dying is something I’ve researched before and take great interest in. The topic of death is so complex and mentally draining that talking about it makes me go through emotions. Last year, I took a course on this topic and gained much newfound knowledge, specifically regarding the dying process. In a way, death and grief are a cycle that we all experience, and this pandemic highlighted that.
As COVID has gone on, we have become desensitized to death. Every life has become a statistic, with countries being in a pseudo-composition for who has the highest number of deaths. I think that the HIV/AIDS epidemic differs from COVID-19 in that people have less incentive to know the deaths and impact of the disease; specifically, with CIVID, anyone and everyone can become infected. With HIV/AIDS, only those who are exposed to it through sexual activity really focused and cared about the numbers and deaths.
I think a significant component of death is within the time range. Those with a life-ending diagnosis will have to grieve for a stretched-out period compared to someone who dies from an illness within minutes or days. Those who have to grieve for an extended period tend to go through (and possibly complete) the cycle of grief, which in itself is torture. Accepting that you are dying is not an easy pill to swallow. But in the end, we all technically know we will die. It creates the philosophical question, “If I’m going to die regardless, how does a life-ending diagnosis make me grieve my death more?” “Is it better to know when you’ll die or have it happen at any moment without knowledge?”
During week 10, Dr. Raper really sat down with the class and unpacked mental health, and reached into those taboo topics. One topic we covered that stood out to me was the idea of helplessness.
I will say that the feeling of helplessness is the feeling I loathe the most. Helplessness is something I definitely felt during the pandemic. Coming from an immigrant family and being the eldest child & daughter, the responsibility of being a parent for my siblings fell on me pretty early in life. I used school and extracurriculars as a way to be independent and free. However, when this was taken away from me during the pandemic, that feeling of helplessness set on me. In a way, that helplessness turned into dependency, which again is something I despise for myself. Discussing the feeling of helplessness during class made me tap into that period of my life again, and I found myself feeling those same feelings during the lecture.
Mental health is such a taboo topic, especially in the Somali community that I come from. Like me, many people try to get help for mental health outside their communities because their own community will dismiss their concerns or invalidate them. I remember feeling extremely helpless and borderline depressed when I discovered my graduation was canceled. I voiced these concerns to my mother, but they were dismissed, and I was told to be grateful that I was alive while many others were dying. To me, that was soul-crushing, mainly because I am first-generation, and graduating high school would’ve been a significant accomplishment. For mental health to become a stigma is terrifying because we all experience times when things get rough or might need a little help. I hope that in the future, if we are put into another situation where we need to lock down (hopefully we don’t, knock on wood), mental health will become less of a taboo and that people will receive the support they deserve.
During Week 9, we had the Emory Outbreak Response Team and Dr. Melanie Thompson present on community engagement during the COVID-19 pandemic. I believe that without public engagement and awareness of the COVID-19 Pandemic and HIV/AIDs Epidemic, we would not have been as successful as we are today.
With HIV/AIDS, the importance of education and prevention through affected communities made it possible to slow down the spread. Communicating with the public through commercials, videos, social media, newsletters, and other forms of media made knowledge much more accessible; this is done through community engagement. I feel like this generation is much more open to discussing topics deemed as ‘taboo,’ such as sex and STIs/STDs, which has been the most influential thing. The first time I heard and learned about HIV/AIDs was seeing a safe-sex condom commercial warning about HIV by Charlie Sheen. I remember googling what HIV/AIDS was, but still confused, I asked my mother what it was. This promoted a long conversation between us where I was told lots of misinformation. Even though pubic engagement is a tremendous positive for providing knowledge and spreading information, it is also a double-edged sword.
The spread of misinformation can be detrimental to communities because it significantly influences how communities engage and react. With HIV/AIDS, misinformation containing homophobia, racism, and incorrect information has debilitated those affected and has made the topic more taboo. With COVID-19, misinformation spread through the community through public figures, specialists, and other influencers have made the public uncertain or believe misinformation about the pandemic, causing more deaths and illnesses.
During COVID-19, so many myths and misinformation were spread that most people believed something incorrect. I remember hearing conspiracy theories about the vaccine, such as it having chips put in by the government, the vaccine itself giving someone COVID, the vaccine as a form of population control, etc. Some are definitely more ridiculous than others, but with the help of people who debunk the myths and provide accurate facts and data, their ability to spread this info was successful. Through partnership and public engagement, the death and infection rates have decreased, and society has had the ability to shift to an in-person world.
Has public health failed us? Or have we failed public health?
These two questions are the subtitle for Gregg Gonsalves’ newly published article in The Nation (Pandemic Year 3: Who’s Got the Power?). In addition to being an eye-catching subtitle, these two questions perfectly encapsulate how the politicization of public health (and almost anything that potentially restricts personal autonomy) has led to our current state— 1,085,150 dead and counting.
Both Dr. Gonsalves’ lecture and article have allowed for personal reflection. I have a vivid recollection of the first few months of the Covid-19 pandemic. But when I try to recall the later months of 2020 and 2021, I come up short. I don’t know when the weeks began to bleed together, no longer holding frequent, impactful memories that would never leave. I think this is the case for most people. It’s also what I think has strengthened the ability to change the narrative and politicize this pandemic.
Masking is a great example where the societal ‘we’ have asked public health to defend their actions instead of setting the agenda. The mask fatigue and calls from some of our most vocal political leaders must have been a huge reason why the CDC changed their masking guidelines a couple of months ago. Scientific data and common sense took a back seat. I mentioned this in class so I do apologize for the repetition, but this infuriated me. Not because I knew it would lead to increased Covid-19 spread and infection (though that is still incredibly important), but because this decision was released right at the start of respiratory season, when healthcare systems were already reporting higher rates of flu and RSV infections and admissions than normally expected for this time of year. Unlike Covid-19, these viruses are transmitted through droplets. Therefore, simple surgical masks are very effective. As hospitals, including even non-pediatric beds, reach full capacity, I wonder how many infections could have been avoided if the masking guidelines and requirements were still in place?
Dr. Gonsalves writes, until we address “sovereign state actors, who are openly antagonistic toward science and public health, and other entities with vested interests that disseminate false information,” public health will not hold the power to set the policies and practices. Until this no longer remains the case, we will keep adding more lives to the 1,085,150 who have died from Covid-19.
To understand how the US budget process disincentivizes long term public health investment it is important to first know the 4 types of spending.
Spend Now Benefit Now
Spend Now Benefit Later
Spend Later Benefit Now
Spend Later Benefit Later
Based on our political process the spend later benefit now approach is highly incentivized. This entails adding to the national debt for a current benefit. Politicians are driven to give their electors promises of services without added taxes in order to get and stay elected. The issue with this infrastructure is that it disincentives long term investments such as preventative public health measures and burdens future generations with costs they don’t benefit from.
I am currently also in a federal and state budget seminar at the law school (taught by Professor Lawrence, head of the health law program) and we have discussed this issue a lot. One of the solutions we keep coming back to is setting legislation to take affect around 10 years in the future surrounding reducing deficit spending or investments. This method allows for whatever party is in power to not tie the decision to their political capital. One hurdle with this is an issue called entrenchment, which is basically taking decision making out of the hand of future officials.
I’d be interested to hear about approaches to solve this issue from a public health perspective. As we saw with the COVID-19 pandemic underinvestment in public health measures is a huge issue and due to that we are further burdening future generations with the debt that resulted from expenditures.
In his discussion, Dr. Gonsalves showed maps of social geography that demonstrated how political determinants of health contribute to discrepancies in public health. His example visually demonstrated how counties with lower life expectancies correlate with the counties where there were the most slaves present (through the “black belt”). I have always been attracted to maps as a form of learning about the world. I loved geography growing up and was obsessed with memorizing all the states, countries, capitals, seas, etc on the globe. Fast forward to my time in college at Emory, and I have been shown maps in very new perspectives. As an anthropology student, I see how boundaries marking state and country borders are arbitrary and invented rather than indisputably natural. However, as a public health student, I see how these abstract lines are extremely powerful in dictating why some people experience different health outcomes than others.
Here is another set of maps:
They also show how the black belt corresponds to heightened public issues – in this case, greater rates of deaths from HIV and tuberculosis (in 1994).
Health geography is an important and powerful tool in visualizing how place, environment, and politics can directly impact one’s resources and outcomes related to health. However, it is also important to note the limitations that maps present: they can be heavily biased, and they can contribute towards the reduction of public health issues to stats and numbers rather than impacts on individuals.
In conversation with Dr. Gonzales, Audrika asked him a question that I have been wondering throughout this entire course: “If the system is irreparably broken, as we have shown time and time again, what can we do to fix it?” If I were to have asked the question, I likely would have added, “And if you’re working in such a broken system day in and day out, how do you keep any sort of passion? How do you not just constantly feel like you’re screaming into the void?”
Although I did not ask the second part of the question–it was not phrased the way that I would have phrased it–someone did ask Dr. Gonzales a question of the same sentiment as what I would have asked. He answered both questions in a similar manner, which is that the best way to make actionable changes in the world of public health is through supporting small causes. Every city likely has grassroots harm reduction centers and organizations, and you will be able to see and feel the effects of the work that you do in those organizations. Above all, passion is something that absolutely must be present to find any satisfaction in the world of public health.
With every public health leader that has come to speak with us, I have either asked them or heavily considered asking them the exact same questions. They are what I’ve been considering throughout this entire course.
Dr. Gonzales also discussed something at length that I have heard–and thought–a plethora of time: “During Covid, ‘public health’ failed us.” He argued that that is an entirely unfair sentiment, by quoting an essay that he’d recently read: “Who has the power?” How is it fair to say that public health failed during Covid when epidemiologists are not the ones making decisions about how to lead a country through a pandemic? How can a career so underfunded and disregarded be said to fail when they weren’t even involved in the process?
The idea of public health “failing” is one of the reasons that I am a bit apprehensive to enter the field. I don’t want a repeat of the past 2 years, but with me being at the head of a sinking ship with nothing other than a bucket. I don’t know how I’ll be able to find my inner passion in the face of a system that seems rigged against the work that I’m trying to give to the world.
But then… I think about the stories that we’ve heard this past semester. I think about the young doctor that had Thanksgiving dinner with Dr. Del Rio. I think about the millions of lives that were lost to so many pandemics–the millions of lives that were lost inequitably in so many pandemics–and I think that doing nothing in this field would leave me far less satisfied.
The politicization of Medicine is hard to watch. I’m sure there’s a more sophisticated way to say that, but that’s the truth. Most of my close family members work in Medicine. 4 doctors, a 4.0 premed student, and a couple more nurses and pharmacists. They went into it with an understanding they’d hold a place of trust in their community, and that’s dissipating before their eyes.
I’m a lawyer, I went into this business knowing plenty of people wouldn’t like what I do. But I know it’s not what Medicine wants. I think some healthy distance between Medicine and politics ought to be maintained. It’s not just the doctors’ wishes; that trust in Medicine is too important to society. It needs to be built up.
Dr. Gonsalves mentioned a few different way to accomplish that today. I wanted to throw one more. Some of the speakers over the semester mentioned how hard it is to keep everyone’s messaging on the same page. Political figures have to work to keep their jobs, and they’ll take recommendations and get creative in how they interpret them. There may need to be some courage to straighten out the record when recommendations get turned around—like a game of telephone. I think we started to see that a bit as the Covid Pandemic went on. More of it might benefit everyone and go toward building back that trust.
The conversation with Gregg Gonsalves was truly fascinating because it emphasized just how much health and politics intertwine. During the conversation, Dr. Gonsalves stressed that both the social determinants of health and also political determinants influence health. What I found striking is that so many life or death decisions are made by people in power (such as policy makers) who are likely not fully in touch with the issues that they decide on. It is the people—who see, live, and are affected by issues—that are truly aware of the topics that policy makers decide on (and the impact that certain decisions may have). The people are the true experts of so many issues and therefore, the public’s voice and perspective should be prioritized when decisions are made by people in power so that the proper and beneficial actions can be taken and so harmful policies are not enacted. A perfect example of the importance of the community’s voice when it comes to policy—as discussed by Dr. Gonsalves—is Act Up. Act Up, an HIV/AIDS advocacy group has helped to speed up HIV/AIDS drug approval, encourage further HIV/AIDS research at the NIH, and worked toward policy to end the HIV/AIDS pandemic through politics. In short, the public, their passion, and commitment are all critical and can influence politics which is important so that policy makers are less likely to implement and/or perpetuate regulations/practices that cause more harm than good. Dr. Gonsalves also mentioned during the discussion how political agendas can—at times—outweigh population health which made me curious about something; why is it that public health (findings, recommendations, etc.) is oftentimes not held at a higher regard? Any thoughts?
“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.