Vaccines, Treatments and Inequality

Will the Development of Treatments and Vaccines resolve our HealthCrisis?

STATS TRACKER FOR VACCINES AND TREATMENTS HERE

• Vaccines and Inequality
• Two functions of vaccines: they protect against infection, and reduce transmission
• Equitable vaccine distribution is essential to achieving herd immunity
• The development of candidates for Covid-19 vaccines is progressing faster than that for any other pathogen in history. According to the World Health Organization (WHO), there are already two clinical trials underway and more than 50 vaccine candidates in clinical evaluation. 
• Multilateral institutions funded by multiple governments, pharmaceutical companies, and philanthropists are all pouring hundreds of millions into the vaccine development effort, which has helped hasten discovery. 
• We also have vital international alliances such as the Coalition for Epidemic Preparedness Innovations (CEPI), which was set up in the aftermath of the Ebola crisis and is dedicated to financing and coordinating the development of vaccines and ensuring fair global access.
• Alongside the expedited discovery process, we need to plan for equally expedited distribution and delivery. 
• Those involved in investing and building delivery systems must work as quickly as those in the field of discovery to pave the way ahead and learn from prior vaccine delivery experiences.

One of the main concerns about a potential future vaccine is that it will only be available to the highest bidders – developed countries that have the financial resources to make bilateral deals with pharmaceutical companies to buy large amounts of doses once a vaccine is developed. This could prove problematic to achieve global herd immunity, since some populations will be more protected than others. 

• Historically, vaccines, once developed are distributed to wealthier nations first while the rest of the world's population waits DECADES (if ever) to get access. Will we repeat the mistakes of the past with the COVID-19 vaccine?
• Polio: Eradicated from the developed world in 1960s. It was not until August 2020, that the last case of polio was recorded on the African continent. Cases still exist in Afghanistan and Pakistan today.
• TB killed more than 1.4 million people last year, despite the fact that a vaccine was produced over a century ago
• Measles: in 2018, killed 140,000 children, 1 in 7 children worldwide do not receive the vaccine.
• Since COVID-19 is so highly infectious, the success of eradication will depend on the "weakest link" Unless the virus is eradicated in the poorest parts of the world, the virus will keep spreading and outbreaks will continue.
• xenophobia? Fear of immigrants with diseases, etc.
• Wealthier nations have currently "pre-purchased" massive quantities of promising vaccines to ensure they will be able to complete domestic vaccination. The US, UK, and EU have purchased FIVE TIMES the number of vaccines needed to immunized their entire populations.
• 50% of the vaccines expected in 2021 have already been bought up by the world’s wealthiest countries.
• Trump removed the US from the WHO who might ensure through funded programs the equitable distribution of the vaccine to poorer nations.
• Canada, UK, and others has joined a consortium, pledging to more equitably distribute the vaccine (COVAX), the US has not yet joined
•  the pandemic has pushed almost 37 million people into extreme poverty worldwide -limiting access to vaccines even more

• A vaccine for COVID-19 itself has become especially politicized

• Russia testing vaccines on scientists and China doing testing in the military-- Russia and China could use the distribution of a COVID-19 vaccine to poorer countries to try and sway political alignment. 
• Even in the extremely unlikely event that all five vaccines succeed, nearly two thirds (61 percent) of the world’s population will not have a vaccine until at least 2022. (OXFAM)
• “During a pandemic, vaccines and antivirals can’t simply be sold to the highest bidder. They should be available and affordable for people who are at the heart of the outbreak and in greatest need. Not only is such distribution the right thing to do, it’s also the right strategy for short-circuiting transmission and preventing future pandemics.”--Gates Foundation
• Gavi, the Vaccine Alliance, has been working since 2000 to address vaccine equity and helps vaccinate nearly half of the world’s children.While Gavi’s main focus is children, it has helped provide vaccines for people of all ages for epidemic-causing diseases such as yellow fever and meningitis. 
• Resolving these issues: (Harvard Business Review)
• Financing the purchase of vaccines
• One way to provide this financing is a bond structure backed by OECD countries that would allow the money to be raised in capital markets. 
• Supplemental donations by GAVI, OXFAM, BMGF and others
• Strengthening and protecting the health care workforce
• Some 1,700 health workers in Italy are known to have already been affected, decimating an overstretched health care workforce. 
• There are similar stories from Spain, and the same worrisome situation seems to be developing in New York City and other places in the United States. 
• Not only will this impede the treatment of patients inflicted with Covid-19, it will also affect the program to administer the eventual vaccine. 
• This could be an especially big problem in low- to middle-income countries, where the depletion of health care workers’ ranks could also weaken existing programs to vaccinate people against other diseases. 
•  Investment in personal protective equipment and testing capacity is needed to protect the global frontline workforce.
• Identifying residents of developing countries

• Around 1 billion people in the world — predominantly residents of developing countries — lack formal identities; many are mobile. 

• This presents a massive challenge for governments trying to reach a critical mass of dispersed people: Without reliable IDs, it’s difficult to know who has received vaccines. 

• The initial Covid-19 vaccine supply will be limited, so it will be essential to verify each dose reaches a real patient. 

• Corruption, leakage, and even accidental duplication waste precious supply and are deadly.

• biometric digital IDs can be a game changer. For example, Simprints has deployed biometric IDs on health and humanitarian projects across 12 countries, which have increased health care visits and quality while preventing fraud.
• Leveraging data to predict behavior
• need to understand risk of transmission at the hyperlocal level and the likelihood of adherence for specific geographies and sub-populations. 
• Establishing reliable supply chains

• need simple data-capture systems to understand the stock and flow of vaccines in the supply chain.

• Most vaccines need to be kept between two and eight degrees Celsius. 

• In many low- and middle-income countries, electricity sources are unreliable. New technologies can help. 
• Solar direct drive refrigerators, as well as efficient new ice-lined refrigerator technology, has revolutionized the cold chain in developing countries.  

To achieve all the things we have described, global coordination will be required. At least for the first eight to 12 months after the Covid-19 vaccine becomes available, it is likely that there will be only a limited supply to meet global demand. 

• There needs to be a global agreement on allocating stocks to countries around the world. If that doesn’t happen, the result will be political tensions like those we are currently experiencing over the allocation of personal protective equipment, ventilators, and test kits.
• Although the poorest countries have in place systems that have been well honed over 20 years through the Vaccine Alliance, middle-income countries ineligible for Gavi’s assistance do not.  We need to decide how to support them — whether to extend Gavi assistance to them or provide other mechanisms.

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Treatments, Drug Development and Inequality

• “Covid is all about privilege. The more privilege you have, the more you can ignore some of the rules of Covid. Where one person would need to be in the hospital, another person can have the hospital come to them. That’s privilege,” said Lakshman Swamy, an ICU physician at Cambridge Health Alliance in Massachusetts.
• The president’s privileged treatment is understandable given his prominence, (got treatment only 10 people have had access to).
• but the contrast is no less stark for millions of Americans who have faced down Covid-19 in their homes or local hospitals, where barriers to cutting-edge care do not simply melt at the mere mention of their names or job titles.
• “A portion of the people who are severely symptomatic don’t have access to health care … and they are the population that is just being decimated by this.”
• High-profile individuals — in particular, professional athletes — have had frequent access to testing with fast-turnaround results. For much of the rest of the population, however, confirming a case of Covid-19 has meant waiting in line for a test, and waiting even longer for results.
• Many patients are worried about losing their jobs because of a positive test, or afraid to go into the hospital because no one else will be available to care for their children if they’re admitted. So they stay home and try to ride it out.
• For ordinary patients, there is no such thing as a precautionary hospitalization. Unlike the president, they would not be admitted based on concerns about what could happen if they are not in close proximity to doctors and state-of-the art equipment. They are only hospitalized if signs of severe infection emerge.
• Data collected on Covid-19 cases have turned up significant disparities in who is infected — and who dies from an infection.
• Death rate is more than twice as high for Black patients, and nearly twice as high among patients identified as Native American or Alaska Natives. 
• The data also show that people with lower incomes are much more likely to become seriously ill. 
• About 35% of patients with household income under $15,000 became seriously ill, compared to just 16% of patients with income over $50,000.
• ordinary patients don’t necessarily get the everything-but the-kitchen sink care received by the president. 
• In addition to remdesivir and the antibody cocktail, the president’s physicians have also said he was given the steroid dexamethasone after a temporary drop in his oxygen levels. 
• getting access to Regeneron’s experimental drug, a cocktail of two monoclonal antibodies which has not yet been authorized by the FDA, is harder still. 
• Bateman-House said the bigger problem is that the process itself is not based on need. “We know who gets access to investigational medicine is not a random cross section of the American population,” she said, adding that many patients do not even know there is a way to apply. “This particular case of Trump just makes it real for people.”

Drugs (all gotten by Trump)

• Monoclonal Antibodies: 
• The treatment, called bamlanivimab, has been approved to treat non-hospitalized adults and children over age 12 with mild to moderate symptoms who have recently tested positive for COVID-19, and who are at risk for developing severe COVID-19 or being hospitalized for it.
• This includes people over 65, people with obesity, and those with certain chronic medical conditions. 
• The single-dose treatment must be given intravenously and within 10 days of developing symptoms.
• Monoclonal antibodies are manmade versions of the antibodies that our bodies naturally make to fight invaders, such as the SARS-CoV-2 virus. Bamlanivimab attacks the coronavirus's spike protein, making it more difficult for the virus to attach to and enter human cells.
• This treatment is not authorized for hospitalized COVID-19 patients or those receiving oxygen therapy. (could make them worse)
• Convalescent Plasma:
• Convalescent plasma — literally plasma from recovered patients — has been used for more than 100 years to treat a variety of illnesses from measles to polio, chickenpox, and SARS.
• antibody-containing plasma from a recovered patient is given by transfusion to a patient who is suffering from COVID-19. 
• The donor antibodies may help the patient fight the illness, possibly shortening the length or reducing the severity of the disease.
• patients with (or at risk of) severe COVID-19 who received convalescent plasma within three days of diagnosis were less likely to die than patients who received convalescent plasma later in their illness.
• In order to donate plasma, a person must meet several criteria. 
• They have to have tested positive for COVID-19, recovered, have no symptoms for 14 days, currently test negative for COVID-19, and have high enough antibody levels in their plasma. A donor and patient must also have compatible blood types. 
• Once plasma is donated, it is screened for other infectious diseases, such as HIV.
• Each donor produces enough plasma to treat one to three patients. 
• Anti-Viral Treatments
• remdesivir --The drug may be used to treat adults and children ages 12 and older and weighing at least 88 pounds, who have been hospitalized for COVID-19. 
• Clinical trials suggest that in these patients, remdesivir may modestly speed up recovery time.
• HIV protease inhibitors lopinavir and ritonavir, and lopinavir and ritonavir in combination with the immunomodulatory agent interferon beta-1a. (still experimental and not utilized)
• Steroid Treatments:
• dexamethazone -- the corticosteroid drug decreased the risk of dying in very ill hospitalized COVID-19 patients. 
• patients who have developed a hyper-immune response (a cytokine storm) to the viral infection--it is the immune system's overreaction that is damaging the lungs and other organs, and too often leading to death.
• when should it be started? 
• If you start too soon you blunt the body's natural defense system, and that could allow the virus to thrive. 
• Ibuprofen--Is it safe?
• Some French doctors advise against using ibuprofen (Motrin, Advil, many generic versions) for COVID-19 symptoms based on reports of otherwise healthy people with confirmed COVID-19 who were taking an NSAID for symptom relief and developed a severe illness, especially pneumonia. 
• These are only observations and not based on scientific studies. (anecdotal)
• Chloroquine, hydrochloraquine, and azithromycin
• patients with severe symptoms of COVID-19 improved more quickly when given chloroquine or hydroxychloroquine. 
• The jury is still out regarding whether these drugs, alone or in combination, can treat COVID-19 viral infection. 
• While recent human studies suggest no benefit and possibly a higher risk of death due to lethal heart rhythm abnormalities, two studies supporting these conclusions have been retracted by the authors because of irregularities in how results were collected and analyzed.
• Vitamin D

• There is some evidence to suggest that vitamin D might help protect against becoming infected with, and developing serious symptoms of, COVID-19.

• it may help boost our bodies' natural defense against viruses and bacteria. Second, it may help prevent an exaggerated inflammatory response, which has been shown to contribute to severe illness in some people with COVID-19. 
• people with low vitamin D levels may be more susceptible to upper respiratory tract infections. 
• Vitamin C
• No evidence it prevents COVID infection
• IV infusion may decrease death rate, but studies have not been conducted
• Zinc
• Helps the immune system fight off bacterial and viral infections
• Fatotidine
• The generic name for Pepcid, famotidine is commonly used to treat ulcers, heartburn, indigestion and reduces the amount of acid in the stomach. A clinical trial testing the drug in hospitalized COVID-19 patients in New York wasn't able to recruit enough patients to properly evaluate its impact
• Melatonin
• Commonly used to treat insomnia, some studies have suggested that melatonin could also help COVID-19 patients with diabetes and obesity
• Aspirin
• Commonly given to older patients to prevent heart disease, aspirin is also a popular painkiller. It can reduce the risk of blood-clotting, and evidence has shown COVID-19 can trigger blood clots in some patients. 

Testing:

• Seriologic Antibody Testing
• A serologic test is a blood test that looks for antibodies created by your immune system. There are many reasons you might make antibodies, the most important of which is to help fight infections. The serologic test for COVID-19 specifically looks for antibodies against the COVID-19 virus.
• Your body takes at least five to 10 days after you have acquired the infection to develop antibodies to this virus. For this reason, serologic tests are not sensitive enough to accurately diagnose an active COVID-19 infection, even in people with symptoms.
• good to find those who have been infected in the past and recovered
• Your body takes at least five to 10 days after you have acquired the infection to develop antibodies to this virus. For this reason, serologic tests are not sensitive enough to accurately diagnose an active COVID-19 infection, even in people with symptoms.

Drug Development and the Economics of Inequality

• “During a crisis, some people will go out of their way to sacrifice their lives, and others will hoard medicines and be complete jerks. On institutional levels, we have the same span of good actors and bad actors”
• in the absence of comprehensive trial coordination mechanisms, signs of disarray are emerging. 
• “The scale of these trials is too small, and the variation in terms of how they are being run is too large”, says John-Arne Røttingen, chief executive of the Research Council of Norway and proponent of a more collaborative approach. 
• “These trials aren't really designed to answer the questions that need to be answered.” 
• Clinical trial literature, moreover, is riddled with drugs that looked promising in small trials only to prove ineffective in bigger, more rigorous studies.
• Nine repurposed drugs, should they demonstrate efficacy against the coronavirus, could be manufactured profitably at very low costs, for much less than the current list prices.
• But: A course of sofosbuvir, a medication by pharmaceutical company Gilead Sciences that is currently used to treat hepatitis C, costs around US$5 to make, but the current list price in the US is US$18,610, as cited by The Guardian.
• “That’s been extremely common with infectious disease medications in the past, like hepatitis and HIV, and we can’t let it happen with medications for Covid-19. 
• Otherwise, hundreds of thousands of preventable deaths would occur and health care inequality amongst the poor will worsen,” said Dr Jacob Levi, one of the study’s authors
• Intellectual property policies in the U.S., Canada and other research powerhouse nations have prompted concerns over price gouging, geographic discrimination and other strategies that can lead to profit at the expense of affordable medicines. 
• While manufacturing a drug is generally cheap, the process of research and development costs much more. Various estimates place the cost anywhere between $300 million and $2.6 billion (though the higher figures are often disputed) per drug brought to market, and companies expect sufficient intellectual property protection on their marketed drugs to recoup these development costs. 
• This isn’t unreasonable to ask, and governments are happy to restrict competition for these companies as long as development and production of novel medicines continues. 
• Pharmaceutical companies are part of an industry that enjoys the largest profit margin compared to any other private industry, even surpassing oil and gas. 
• The ratio of revenue spent on promotion and marketing – upwards of 25 percent – compared to the 1.3 percent devoted to discovering new molecules is striking. 
• The pharmaceutical industry, in both domestic policies and under potential trade agreements like the TPP, is granted exclusive power over the market; companies rationally use this power to make as much profit as possible before their exclusive rights expire. 
•  Ten million people die each year due to a lack of access to essential medicines, and nearly three billion worldwide are at risk from diseases that lack market incentives for drug development. 
• The Commission on Health Research for Development found that less than 10 percent of worldwide resources devoted to health research were put towards health in low and middle income countries, where over 90 percent of all preventable deaths worldwide occurred.
• Although high drug prices as a result of the intellectual property system have long been identified primarily as a problem for developing countries, they are becoming a growing concern even for industrialized nations. 
• Pharmaceutical patents and exclusivity reduce access to lifesaving drugs, and allow technologies developed with public funding to be purchased and monetized by private entities in developed nations. 
• Taxpayer-sourced research funding from governmental organizations like the Canadian Institutes of Health Research or the National Institutes of Health is a major component of the R&D landscape. 
• Between one fourth and one third of new drugs originate on public university campuses, but are then bought out by the industry to be monetized. Though development costs are borne by the taxpayer, the benefits of the research are mostly enjoyed by private parties.

Comics and the Pandemic

 

--PLEASE READ THE FOLLOWING NARRATIVES ON THIS PAGE 

--AND THIS PODCAST: HERE

ILLNESS NARRATIVES: in Healthcare

The first classification, Arthur Frank:  Professor Frank classifies stories into three common story types: restitution, chaos and quest. 

• Restitution narrative: this is the story most favored by physicians and other medical professionals and poses the emphasis on restoring health. These narratives often have three moments: 
• they start with physical misery and social default, 
• continue with the remedy (what needs to be undertaken) and 
• finish with the moment in which remedy is taken; 
• moreover, the narrator describes how physical comfort and social duties are restored. 
• These are often stories told about patients rather than by patients, also because they give little agency to the narrator: patients simply have to ‘take the medicine’ and get well. 
• Chaos narrative, which is really a nonstory: there is little narrative drive or sequence, just a list of negative things that will never improve and by which the narrator is almost overwhelmed. 
• The story signals a loss or lack of control, and medicine cannot do anything. 
• Quest narrative: this is the teller’s story, where the teller is in control of things. Narrators tell how they met the illness ‘head on’ and sought to use it, to gain something from the experience; 
• the story is a kind of journey, with a recognized departure, an initiation (the mental, physical and social suffering that people have experienced) and a return (the narrator is no longer ill but is still marked by the experience).

The second classification, Arthur Kleinmann: , The concept trilogy of ‘illness’, ‘disease’ and ‘sickness’ has been used to capture different aspects of ill health. 

• Disease is defined as a condition that is diagnosed by a physician or other medical expert, and it is considered as alterations or dysfunction in biological and/or psychological process, a deviation from the recognized ‘normal’ state, an isolated malfunction of a body part; 
• ideally, this would include a specific diagnosis according to standardized and systematic diagnostic codes. 
• This also means that the clinical specific condition has a known biomedical cause and often known treatments and cures. 
• On the other hand, illness is defined as the ill health the person identifies themselves with, often based on self-reported mental or physical symptoms. 
• It refers to the lived experience, to how the ill person and the members of the family or wider social network perceive, live with and respond to symptoms and disability;
• it is something being lived through the body and can have many types of meanings, in different contexts, to different people. 
• Lastly, Kleinman introduces a third term, sickness. Sickness describes a disorder in a generic sense as applied to a population or group. It is related to a different phenomenon, namely, the social role a person with illness or sickness takes or is given in society, in different arenas of life, often used to measure social consequences for the person of ill health.

The third classification, Mike Bury: This type of classification foresees that analysis must consider three types of narrative forms: contingent, moral and core narratives. 

• contingent narratives are concerned with those aspects of the patient’s story that deal with beliefs and knowledge about factors that influence the start of disorder. 
• If this kind of narratives describes events, their proximate causes and their unfolding effects in relation to the performative of everyday life, moral narratives provide accounts of changes between the person, the illness and social identity and help to (re)establish the moral status of the individual or help maintain social distance, introducing an evaluative dimension into the links between the personal and the social. 
• Core narratives reveal connections between the person’s experiences and deeper cultural levels of meaning linked to suffering and illness.

The fourth classification, John Launer: Stories can be divided into three types: progressive, regressive and stable one. 

• Progressive narratives move towards the personally valued goals; 
• regressive narratives move away from such valued goals; and 
• stable narratives sustain the same position in relation to the valued goals throughout the narrative sequence. 
• This last kind of narrative could be seen as less engaging than others, because it tends to relate a sequence of events without great drama—a form of storytelling that goes under the heading of the so-called contingent narratives. 
• The use of a progressive, regressive and stable framework allows an analysis that safeguards against over-interpreting the range reserved of meanings conveyed by patients’ accounts. 
• whatever narrative form may be identified in analysis, many accounts move from one to another, for example, from regressive to stable. 
• Consistency in narrative accounts may be achieved or sought by patients, but it may not: much depends on the context in which narratives are constructed and presented and on the intentional acts which they help constitute. 
• This classification is very useful to focus on the coping strategies acted by patients: if regressive or stable narrative may show no positive engagement and if narratives are progressive, this may represent an evolving positively situation.

The fifth classification, factual language and symbolic language

• Factual language: digits, facts, visits, number of healed people, contaminated people, of deaths. Mechanism of action by the COVID-19. Rules, countries, decisions made, who visited whom, who was the patient 0, people seen by patient 1, dates of the outbreak, age by mortality rate, gender by mortality rate, immune children, number of available beds by Region, days of isolations- 14 and/or longer, number of potential contaminated people by one asymptomatic carrier, number of masks available, number of ambulances in the streets, spread and fall of the stock market value, number of closed activities, number of online new services, number of days spent in home working, volumes of purrell sold, potential time to vaccines,  and so on….
• Metaphoric language: try just to see on the screen shot the numbers of healed and deaths and contaminated as they are in the Frankfurt, Paris, New York London stock-exchange market by analogy
• Sontag argues, obscures illness within dramatic narratives, meant to rouse and inspire…through vigilance and alarm. The problem with stories, of course, is that the action only unfolds through the choices and responses of characters – that is, us – which in turn evokes assumptions about moral values and responsibility…about blame.If the disease wins the battle – does that mean the physician didn’t fight hard enough? that the patient didn’t have enough will to victory? or that, perhaps, the patient might even have inadvertently sabotaged her own defences, through insufficient vigilance, or morally lax behavior? And if contagion spreads, infecting, corrupting…whose unclean habits are to blame? who is the source of the pollution? Sontag makes the connections: our metaphors of illness tell stories of passive weakness, of malicious vice, of threat and danger, which we then use against one another. Never mind this pathogen, that imbalance of brain chemistry, this insufficiency of antibodies, that excess of cellular activity: we have others to blame (and “they” are always “other), others who can be the target of our shame, helplessness, fear, hatred. It might be a natural, human, impulse to use stories to give shape and meaning to otherwise arbitrary, uncontrollable phenomena; the danger is that the metaphorical thinking that we use to build those stories for our individual comfort then takes on a life of its own. The metaphors are especially vulnerable to ideological use, not at the level of the individual body, but of the body politic – the metaphors of invasion, pollution, sickness are used to justify the marginalization and separation of whole populations: Jews in 1930s Germany; gay men in 1980s America; immigrants, refugees, “aliens” (and their children) who threaten us with the infection of difference
• In addition, -the plague and plague spreaders. The cancer metaphor of the society has quietly faded away: now the new words are “infodemia”, “the viral decisions of politicians”.

• Albert Camus the plague: 

  “Flagella, indeed, are a common thing, but flagella are hardly believed to be when they fall upon your head. In the world there have been, in equal numbers, plagues and wars; and yet plagues and wars catch men always unprepared. (…) Stupidity always insists, we would notice if we didn’t always think of ourselves. In this regard, our fellow citizens were like everyone else, they thought of themselves, the scourge is not commensurate with man, we are therefore told that the scourge is unreal, it is a bad dream that will pass.”

The sixth classification, Plutchik emotions: Plutchik proposed that eight ‘basic’ emotions are biologically primitive joy, fear, anger, disgust, sadness, (the same as Inside Out) plus trust, surprise and anticipation. 

• Plutchik argued for the primacy of these emotions by showing each to be the trigger of behavior with high survival value, such as the way fear inspires the fight-or-flight response.
• Plutchik’s psycho-evolutionary theory of basic emotions has these main postulates: 
• 1. The concept of emotion is applicable to all evolutionary levels and applies to all animals, including humans. 
• 2. Emotions have an evolutionary history and have evolved various forms of expression in different species. 
• 3. There are a small number of basic, primary or prototype emotions. 
• 4. All other emotions are mixed or derivative states; that is, they occur as combinations, mixtures or compounds of the primary emotions. 
• 5. Each emotion can exist in varying degrees of intensity or levels of arousal. 

The moment that I was informed that we had become a COVID-19 department, I was devastated. This coronavirus is so frightening, and I knew that I could die from it. I am a person who needs to be in control, and I had lost control, I was so frightened. This entire new situation was scary—a situation of life or death. Moreover, I was in it. At the level of the team, we did not know what to expect, personally and collectively, as a department. I did not know what was expected from me as a social worker and what were the guidelines; everything was new. We created everything from the beginning, and I was scared.

Emma, a social worker in the hospital’s Corona Department

 “In our country, we know what a war is, and in the healthcare system we know how to function in the hospital during times of war, but still, this is a new war, a war that we have never handled, an invisible enemy, and it is frightening all of us.” In similar vein, Doron said: “to be significant, to be at the front is important. Before it was the army that was at the front, now it is the turn of the healthcare system to be at the front.” Sara, nurse

“In the Internal Medicine Department, I have been working for the past 18 years with my team, physicians, nurses, secretary—we have a common language. I felt especially secure in those days. How I will be able to use, in an efficient way, a new situation and new staff? This is ridiculous.” Dikla a nurse

“This will increase the feeling of insecurity…think that the entire situation is new and scary; so, what will I do without my friends who I have been working with for years?” In particular, the need to be protected during shifts was pronounced. As Sara told us: “In order to continue to come here, I need to feel that someone is taking care of me. I do not care who in charge of that in the hospital, but I need to feel safe; it is essential for me.” Tania, a social worker

“I cannot believe it… because of the workload… it is only because of the workload… I have to tell you that I haven’t eaten for whole days…I grab something. It is not that there isn’t any food, but we don’t have the time and the needs of the staff draw you and you can’t ignore them; you need to respond to each one. At other times its different, of course. Here you can’t say anything to them. It’s the mask; it creates wounds on their noses, so I brought them cream. This kind of mask or any other; so, I saw masks in the grocery store and I bought them pink surgical masks so they would feel joy. Every day I am bringing something to make them happy. All the time. Yes, the protective equipment is a problematic issue by itself… I understand since I am involved in that; it depends on the equipment that comes to Israel, but it is not always suitable… this equipment is insane.” -Julie, a nurse in the ICU

Julie’s “I Poem” I cannot believe I have to tell I haven’t eaten I grab something [to eat] I brought them cream I saw face masks I bought them masks I am taking out [something to make them happy] I understand I am involved

“I love my job, and I love the feeling of contributing. People around me, outside the hospital, talk about us [the HCWs]. I am in the frontline. It is pleasant and heartwarming.” -Michal, a nurse

Michal’s “I Poem”
I love [my job]
I love [the feeling of contributing]
I am [in the frontline]

“I believe this will continue …. I discovered the richness of family and personal life, which reinforced things that I knew about myself and my [hospital] family—we are sturdy and dedicated and we cope well. I am filled with appreciation for the Infection Management Department that created a safe environment.” --Dina, nurse

Dina’s “I Poem” I believe I discovered I knew [about myself] I am filled [with appreciation]

Themes: Trauma and Stress

A deceased is a deceased but the separation from the family is extremely difficult, the wrapping process is a different from what you normally do in the internal ward. In addition to the regular wrap we put them in a nylon wrap and that is horrifying. A really unpleasant sight. It is like you put your patients in a plastic bag and you close it with a zipper. And then you cover with another bag but from the opposite side. An unpleasant wrapping of a patient since it is supposed to be isolated.--Golda, nurse

Look, the coronavirus is something completely new. A whole new disease that we do not have a clue how to treat, how to behave with it … and the craziest thing [is] that no-one in the world has the knowledge how to treat this disease, no knowledge-based expertise, no medical literature. So, you are constantly calling your colleagues in the country and around the world. Then, you are planning how you will cope with your first coronavirus patient. And then you are planning your second patient and the third. The decisions [as the head of the ICU] are just on your shoulders. They said to me: you are crazy … you are crazy; what are you doing? But I had to listen to myself, my instincts, and I said I have to go with my feelings and intuition. The decision is all yours. And what is most crazy is that you do not know what will happen next. Now it [the patient’s condition] is fine and five minutes later the patient can die and there is no-one to consult with because no-one knows [anything] about COVID-19.--ICU Physician Marina

Themes: Security and Knowledge

At the beginning of the corona outbreak, there was a lack of food, protective gear, and clothes and shielding eyeglasses to protect ourselves. We had to shower between the shifts, and there was a shortage of showers in the hospital, and we had to fight for the basic needs to be protected, especially during the weekends. It was horrible. Everyone was terrified. There was a lack of food in the Corona Department. At the beginning, I did not have what to eat during the day. I felt broken and choked …. There were shifts that I did not eat for almost 12 h.--Orr, nurse

I did not have a life except the work at the hospital these past few weeks. I did not have a private life at all. I did not meet my family. I am tired all the time, I just want to sleep like a human being, to eat, to be away from the hospital and from the Corona that is all over; these 12-h shifts killed me. I am a single mother and I have a daughter. My daughter was all by herself at our house. It is unbearable; she was all by herself for all those days of the corona, and I was here taking care of other people.--Sara, nurse

There was constant anxiety and fear that we would infect others; we [at the Corona Department] felt like lepers … and then the isolation from my family since I was so afraid that I would infect them. I was isolated like a leper. My children could not go out to play with other children because I was terrified that I would infect my children and that they would infect their friends with coronavirus. At the beginning of the coronavirus, my daughter was so stressed out from this crazy situation.--Dorit, nurse

“The Head of the Department is constantly updating us … I do not feel detached … I feel secure, knowing where I stand.” --Dan

“ … a lack of communication and information about what is happening at the hospital at the general level and not at the sector level bothers me. I am worried.” Avi, administrator

“Uncertainty concerns me—assessments of the situation and updates by my immediate supervisor would help me.”  “I feel like I’m in the dark and don’t know what’s going on.”--Ruth

Theme: Need for Belonging

We were all a big family helping each other. I felt so close to all my peers; working together in such a tough time was different from what I had known in the last 26 years that I have been working in the hospital. As a team, we have become closer to each other, and I have discovered additional angels in my team …. In our department there is a sense of “togetherness” and comradery. Professionally, there will be changes; there are thoughts about modifying procedures in light of the current pandemic …. Relating to each other, currently feeling that we are a united and cohesive group.---Vicki, administrator

This period is a mixture of emotions. The reality is that everything is so new and unfamiliar. Nevertheless, the staff are so devoted to each other and struggling to do their best to help each other and changing shifts due to the lack of nurses. Sometimes they asked about treatment and I did not have an adequate answer. How I will say it? This is the period that we are re-inventing the protocols and rules of treatment. I am telling them that I am so sorry but there are no guidelines yet.--Pam, ICU nurse

“A good word, a compliment, and a positive attitude made me feel valued and…reassured.” “A kind word makes my day …. It is essential for me to get feedback on my work and to know that I am doing my job well.”--Lori, nurse

“The presence of management in all departments and during all shifts made the staff aware that there was someone with them.” She added: “Personal appreciation by the management increases motivation and reduces concern….I would like to see more direct communication with management… in my team, I feel appreciated. I don’t feel I’m getting feedback from management.” --Alma

Management worked well during the crisis; I want to thank the management for the adaptions that were made by mobilization of staff and change of policies and for taking the time to listen; and in my opinion, the hospital and management are doing well.--Dan, assistant nurse

Theme: Meaningfulness

“Patients with coronavirus helped me to feel valued and meaningful, [especially] the conversations with the patients and the phone conversations with their families out there in their homes, so worried about their loved ones. I was there for the patients and their families, and it allowed me to feel meaningful and to want to continue treating patients.”--Carol, nurse

Go to:

Illness Narrative #3: essential Workers

DUE NOVEMBER 19th

For this illness narrative you will be interviewing essential/frontline workers. These are people which deal directly with the impact of COVID-19 in our communities. Though essential workers are found in many sectors, the richest stories can be found from those who work in the healthcare sector (for example)

• doctors
• nurses
• therapists (variety)
• home healthcare 
• nursing home workers
• chaplains
• funeral homes
• hospital workers
• morgues
• police and firemen
• EMT

To complete this narrative you will interview 3 essential workers and present their stories considering the physical and psychological impact that their work has had on them since March, 2020. In doing so, you should elicit "stories" that they have which illustrate their experience. Some useful questions:

• What kind of work do you do?
• can you describe a typical day now?
• "what has changed"?
• what was the most trying incident?
• What surprises you the most?
• How has this affected you and your family?
• etc.?

Narratives should contain these stories with minimal introduction (your voice). Please look to the examples on the blog post. The interviewers voice is absent for the greatest impact. If you can see the person, make sure you record their demeanor (body language, appearance, etc.) without drawing conclusions (simply be descriptive) This plays well in a narrative, and adds to its evocative impact.

Minimum of 5 pages in length.

Narratives From the Front Lines: First Responders

chaplain illness narrative HERE

doctor ER HERE

Front Line Workers in Italy HERE

Illness Narratives and Political Systems-international

GUATEMALA

• Miasmatism, claimed that diseases were transmitted by poisonous vapors stemming from putrid organic matter, originating from contaminated environments.
• These competing views are sometimes framed in terms of the binary contagionism/anti-contagionism when one looks at the longer history of theories of disease transmission
• Contagion held that disease is spread by direct contact with the body of an affected person, advising measures aimed at repelling the causes of the disease, emphasizing quarantines, segregation and sanitary cordons. 
• Infection held that disease is spread through the air or other distant means like objects, dust and water, leading to measures aimed at removing causes of insalubrity. 
• The nature of COVID-19 seems so abstract and hard to do something about that people needing to take practical measures will find ways of deciding, by recurring to notions of disease transmission drawn from their experience and which resemble those of nineteenth century contagionism and infectionism. 

But why sanitary cordons? 

• Here is where narratives with militaristic overtones blend in with notions of disease transmission to inform control measures. 
• Between mid-March and mid-May the Guatemalan government’s narrative about COVID-19 was one of defending the country from an external threat, that the country was at war and the virus was the enemy to defeat. 
• people returning from Europe or the United States became the source of the virus that had to be kept away, but as it became evident that the virus was circulating in the country, community leaders adopted the same logic to protect their communities with the implementation of their own version of a sanitary cordon, and adding more people to the list of suspects.

• global health’s emphasis on biosecurity have led to our current obsession with sanitary measures, losing sight of 150 years of advances in epidemiology and public health that had shown us that the object of epidemiology is people’s health, and its objective is to contribute to its improvement.  

HOMELESS in California

• As growing fears of coronavirus contagion became more prevalent, it fell to officialdom to focus on demographics deemed particularly “at-risk” to assuage public concerns. Sensibly, the project aims to secure 15,000 hotel rooms for “homeless candidates” deemed particularly vulnerable to the virus.
• sufferers become objects, death and illness become statistics, lives become measurable and so the categorization of lives is (re)established. 
• That is to say, the logic of Project Roomkey distinguishes the (hapless) lives to be saved from those who are able to save, setting in place the respective values of said lives.
• The most at-risk individuals include those already suffering from health problems which disproportionately affect those experiencing homelessness
• the present emergency-focus has meant authorities have avoided discussion of long-term solutions to homelessness. 
• By temporarily “sweeping away” urban street dwellers from public areas into confinement, public concerns have been prioritized over efforts to effectively remedy homelessness.  
• slogans such as “Stay at home” and, “Keep your distance” are behavioral luxuries that poorer communities and those experiencing homelessness can seldom afford
• The economics of homelessness
• Homelessness has served a necessary capitalist function beginning with the ‘wandering men’ – a mobile source of labour in the industrial city
• “Skid row” – with its Single Room Occupancy units (SROs) and cheap lodging – reflected US economic trends, shrinking in times of abundance and expanding in times of economic hardship
• Two Factors Changed this
• deindustrialisation. 
• This marked the end of associating Skid row inhabitants with their reserve labour --Instead, the mostly single, white male occupants became only known for their failure to observe social norms or their duty to fulfill social, political, or community roles. 
• their dwelling place directly implicated their personhood; their character, status, and value. Skid row and ghetto inhabitants were judged by where they lived, not who they were; the social imaginary of the “homeless” as a person, not an experience.
• deinstitutionalisation 
• over the course of the 1970’s. Those suffering from acute mental illness were forced from state-funded facilities without sufficient housing or medical provisions, tripling the homeless population throughout many US cities.
• Negative effects from policies accelerated under Reagan’s administration during the 1980’s, when minimal welfare benefits under the New Deal and Great Society initiatives were abolished in favor of capital-first mandates. 
• Public housing and SROs were sold and destroyed to make way for more profitable real-estate construction, forcing thousands onto the street. 
• Class distinction increased and the poor who could no longer access low-cost housing options became increasingly marginalized to the point of invisibility. 
• Government and public attitudes towards the resulting increase in Californian homelessness remained confined to this discourse of homelessness by “personal choice” and was addressed through punitive measures 
• criminalisation of the poor 
• is the product of the same discourse that implies poverty as matter of choice and continues to ignore evidence to the contrary. 
• It ignores structural failures throughout the mental and physical healthcare services and the effects of stigma and social classification which this unchecked discourse recreates. 
• Research quantifiably points to public medical failures leading to homelessness --Inability to work due to injury or illness and the expiration of personal resources to cope (e.g, limited insurance or family support) often ends in some form of homelessness. 
• Physical conditions like tuberculosis, HIV/AIDS, hepatitis, hypertension, vascular disease, seizures, and most other infectious and chronic conditions affect transient residents over their domiciled counterparts by factors ranging from two to twenty
• the lack of having basic storage for medicines means diabetes, asthma, and high blood pressure patients suffer the effects of these illnesses more acutely. 
• individuals experiencing homelessness have a higher frequency of post-traumatic disorders, but homelessness itself is produces symptoms of psychological trauma 
• homeless individuals have and do exercise agency by giving life to various communal spaces within the urban landscape; places which are synonymous with relationship, compassion and care. 
• Project Roomkey’s Fallibilities
• 15,000 is only a scratch on the 150,000 surface of people experiencing homelessness in California. 
•  only one-fifth of the hotel rooms secured for the project have been filled as of July 19, 2020
• disaster capitalism?--the project is set to benefit hoteliers more than those from the homeless communities it ostensibly assists. 
• COVID-19 has brought a sudden halt to travel and in lieu of tourism, state funds directed to Project Roomkey support these businesses in a time of economic decline 
• This is ALSO evident on the Los Angeles Homeless Services Authority (LAHSA)
• It covers the conditions for the temporary lodging scheme on issues concerning hoteliers specifically: the strict guidelines for eligibility, the extent of time the project would run for (three month term from when the hotel decided to open their doors, not when the pandemic subsided nor when it was safe for the new tenant to leave) and the assurance of twenty-four hour, on-site security, and of police readiness-to-respond.
• The contrast in motives behind fiscally driven “relief efforts” with the motives of service-provider agencies produces two very different and distinct outcomes. 
• The former deems the temporary hotel occupant as a commodity – a rather objectifying approach. 
• non-government organizations and non-profit volunteers are more effective in providing care for those in need. 
• They identify problems with state-aid dependency under the disaster capitalism paradigm explaining: “Chronic disaster syndrome… [should] be used to refer not just to the individual diseases associated with the stress of disruption that manifest in individual bodies but also to the social conditions that produce distress, tied in nonspecific ways to larger political and economic arrangements that generate belief in, but ultimately prevent, recovery from disasters.” 
• Denied essential political life, individuals experiencing homelessness are stripped to bare life; to be separated, regulated, and erased as officialdom sees fit. 
• The relocation of those more vulnerable individuals to places for isolation has also generated stigma and negative attitudes (not in my backyard)

• $150 million, could make a significant contribution towards long-term housing solutions or the establishment of medical healthcare facilities to provide preventative care for poorer populations.

• Acceptance into the project also demands hotel residents abide by strict rules and curfew regulations, crediting the revanchist notion that “unknowables” should remain invisible and away from the public eye. The denial of agency and separation from one’s familiar local community is a high price to pay for the brief comforts of a stock standard interior of a hotel room. 

• does nothing to protect future sufferers of homelessness from the next pandemic – as history should inform us this will not be the last international pandemic.

Risk Perception and Political Division

• The increasing political divide in the U.S., and its reflection in where and how individuals consume news and, correspondingly, interpret facts 
• different news sources may present different interpretations of factual data, instilling different perceptions of risk in their viewers—who may in turn respond differently to information provision or suggested social distancing choices. 
• individuals have an increased tendency to view the world through a “partisan perceptual screen,” whereby their assessment of economic conditions and policies depend on whether their party of preference is currently in power 
• Measuring Risk: Two streams of data
• Google health search: 
• The higher the search share in a particular location and time period, the higher the perceived risk among that population. 
• search share for unemployment-related terms (benefits, insurance, etc.), capturing individual’s perceptions of the economic risk of the pandemic. 
• Cell Phone and Travel
• change in average daily distance traveled from the pre-pandemic period. 
• distance traveled in the county relative to the average for the same day of the week from the beginning of the year up to March 8th (the “pre-COVID period”). 
• the percent change in visits to non-essential retail and services from the average for the same day of the week during the preCOVID-19 period. 
• Essential locations include venues such as food stores, pet store and pharmacies. 
• Non-essential retail and services include, but are not limited to, restaurants and bars, clothing stores, consumer electronics stores, cinemas and theaters, spas and hair salons, office supply store, gyms, car dealerships, hotels, hobby shops and so forth. 
• both measures follow expected patterns, decreasing sharply as the case load in the U.S. increases. 
• Risk perceptions and political partisanship
• We document a muted response to preliminary cases in high Trump VS areas—even as state governments imposed a variety of school and business closures and stay-at-home recommendations—with a catch-up in attention only after prominent Republican figures were quarantined following the announcement of COVID-19 exposure at the annual CPAC meeting. 
• As countries across the world struggle to flatten the curve of the pandemic and lessen the possibility of significant deaths and prolonged economic contraction, understanding how individuals and households react to information treatments and voluntary compliance measures becomes of ever more importance to the ultimate resolution of the current crisis.
• Our findings suggest that risk perceptions and—consequently—behavioral choices, may be shaped through the lens of politics, rendering certain types of interventions that rely on uniform interpretation of the risk associated with the outbreak less effective.  

 

Pandemics and Protests: The Politics of Illness Narratives

Read This Article HERE Sanitary Cordons and COVI-19 in Guatemala

Read This Article HERE Homelessness in California during COVID-19

Read This Article HERE Risk Perception and Political Discourse