This is my last lecture in the series.<laugh>, um, welcome, uh, to, as I said, the last lecture in the series on a cultural history of disease. And it's nice to see some familiar, um, faces here. And today we're gonna look at, um, sickle cell disease. Um, I'm gonna start with love. It's always a good place to start, don't you think? Then I'm gonna move to the history of science and medicine, then racism and racialization, protest and activism. And I'm gonna conclude with a critique and actually a self-critique of that use of the, the word race in all of my lectures. But let's start with love. April, 1973, cinemas throughout America began screening what can only be described as a tear jerking love story, the plot of which revolved around sickle cell disease. A warm December, it's what it was called showcased, uh, Dr. Matt Younga played, um, yeah, and an African princess, um, called Katherine, um, which was played by Esther Anderson, who won some awards for it. She won the National Association for the Advancement of Colored People's Award Image Award for best actress for her role. And in the film, Matt is a charming doctor, father, recent widower who falls madly in love with the sensuous, yet mysterious Catherine. Matt observes that she is always being followed, um, by a couple of really shifty looking men. Her regular sudden disappearances fuel his infatuation. Eventually it's revealed that the men tailing her, tailing her, are monitoring her sickle cell condition and giving her blood transfusions to keep her alive. Catherine is in the December of her life. Let's see a clip from the film in it, Matt has finally uncovered Catherine's secrets, um, and he turns up uninvited, by the way. He assumes that, you know, he has entitlement here. He turns up uninvited to her home to ask permission from her uncle, an ambassador and her physician to take Catherine on vacation. Because of her health problems, Catherine is reluctant to burden him, but he asks her, how many times do you pass through? In other words, a veiled reminder of passing through life into death. He reminds her to bring warm clothes. Cold weather can spark an acute sickle cell episode and learns from her doctor that she needs regular blood transfusions and takes sedatives for her pain. One minute clip from the film to give you a sense of what it is about, Maybe have the phone number there, please, the event of emergency, You may not, you are an ambassador. Don't let there be an emergency Doctor. I'll need some information. Blood type B positive. In crisis, I've been using 5% glucose or saline. Does she take any sedatives? Rine, codeine, half a grain, but she won't tell you the truth about her pain. I find that I can fairly well determine how she's feeling by watching the contents of the bottle. May I have a copy of This, please? I'll have one for you in the morning. Thank you. Anything else? Only that you're making a big mistake. Must forgive Joseph's abruptness. He's been Catherine's physician for many years now, has developed a certain attachment. Yes, I can understand how a thing like that could happen. Goodnight. Goodnight. As you can gather, um, the film is definitely a weepie. Although Katherine is passionately in love with Matt, she turns down his marriage proposal because she wants to protect him and her, his young daughter from future distress. She says, goodbye my husband. Thank you for a warm December, which is a translation from a Swahili fra phase phrase. The film was panned by critics, but it's really important in the cultural history of the disease because it brought sickle cell disease to broader public awareness. Remember, this is 1973. It also bolstered political consciousness of blackness and healthcare disparities. So why is sickle cell important? Well, as we are gonna see, it enables us, I think, to reflect on race, and that's always in advert comments in my paper and the racialization of illness in ways that problemize problematize, sorry, how discussions about sickle cell disease are framed. This talk on sickle cell condition also serves, I think, as an internal critique of my own lectures in the series. So for those of you who've come to all the lectures or who've watched them online, um, it's a self internal critique, um, from of my own lectures. But first I'm gonna start by setting the scene by discussing some more, if you like, conventional aspects of the history of a condition, the condition known as sickle cell disease. Okay, so the blood condition known in medical techs as sickle cell disease is, um, not uncommon. One in 10 black Americans possess the sickle cell tray, and one in 375 develop the condition in England. It affects one out of every 2000 births, and one in 70 babies possess the gene. This makes sickle cell one of the most common recessive diseases. Crucially, it's in condition that's highly correlated with specific populations, as is TAs disease amongst people of Jewish descent and cystic fibrosis, um, amongst whites with ancestry from Northern Europe. Sickle cell disease is much more common in people whose ancestors are from sub-Saharan Africa, as well as people from Hispanic, Mediterranean, east Indian and Middle Eastern ancestry. Although the condition is not exclusive to such to people with such ancestry. However, since its foundational move, uh, moments, it has been a racialized disease. It's not surprising, therefore, that the condition was well-known. In ancient African folk tradition, the enslavement of people from the African continent brought awareness of this condition to white enslavers in popular, therefore, sickle cell is known as the black disease. Now, it's highly likely that all estimates of this disease, um, of its prevalence, sorry, are, um, huge underestimates. People with sickle cell gene as well as those with the disease often don't display obvious signs of it. Indeed, in the early years before the molecular structure was known, sickle cell condition was often mistaken for malaria. Since the symptoms sometimes mimicked that, um, that disease indeed before the 1950s, it's highly likely that many deaths from sickle cell disease were ascribed to other conditions, um, or to complications associated with, for example, pneumonia. This was why some physicians have called, called the disease the great masquerader. One of the earliest accounts in English language, um, was written by Dr. Robert Levy, Jr. A quarantine, Logan coincidence, a quarantine officer in, uh, South Carolina, and published in the Southern Journal of Medical Pharmacology. It was entitled, there's this lovely gentleman here. It was entitled, case of Absence of the Spleen, 1846, and Levy reported on an autopsy he carried out on an enslaved man who had been executed while attempting a, an escape. He had the, the patient had numerous leg ulcers and, um, fevers, and on autopsy he could find no spleen, although Levy did not diagnose it as such, this was probably sickle cell disease in which the spleen had ATR amplified due to blood supply being cut off a more scientific, so that's 46 18 46. The more scientific understanding of the condition was first identified by medical researchers in the November, 1910 issue of Archives of Internal Medicine when Chicago physician James Herrick, and by the way, his intern Ernest, um, ions, who by the way, did most of the work and was not credited in the published report, um, diagnosed the disease, um, in a 20 year old dental student called Walter Clement. Noel, Noel had huge lung symptoms. He had anemia. Um, but what intrigued Herrick, um, was Noel's unusual sickle shaped red blood cells. He hypothesized that these distorted shaped cells had difficulties passing through the blood vessels, eventually blocking the vessels, preventing oxygen from reaching tissues, et cetera. Her's report was followed just three months later by a paper written by a medical student, fourth year medical student, Benjamin Earl Washburn from the University of, of, uh, Virginia Hospital. In contrast to Noel, that first patient who had been born, in fact, into a very wealthy family, um, black family from Grard Walsh Burn's, patient was female and very poor indeed. We now know that this patient was a cook and a housemate named Ellen Anthony, descendant of a, um, enslaved family. Together, Walter Clement Noel Ellen Antony and their physicians transformed what we know about sickle cell disease less than four decades later, a chemist. It's a very male, um, uh, series of images I'm gonna be showing you today. I do apologize. Um, lesson than four decades earlier, chemist Linis, Carl Pauling, along with Harvey Tan, um, Seymour Singer and Albert Wells, discovered for the first time that the condition was caused by an abnormality in the hemoglobin molecule. Um, they, they said that, you know, in which the oxygen pressure is lowered, these cells change their form from the normal by coke cave disc to crescent and other forms. There was, they concluded, quote, a direct link between the existence of a defective hemoglobin molecules and the pathological consequences of sickle cell disease. The condition also they discovered had a genetic basis. It was recessive. That is, there's a difference between the sickle cell tray or possessing the sickle cell tray and having sickle cell disease or sickle cell anemia. Indeed, the sickle cell tray, as I've already mentioned, is very widespread and general, generally benign. To experience the devastating symptoms a person has to inherit the gene from both parents. In summary, then the condition known as sickle cell disease is by a mutation in the hemoglobin molecule whereby hemoglobin A in the red blood cell is replaced by hemoglobin S. As hemoglobin S releases oxygen, a hemoglobin polymers stretch the cells into the crescent shape of thele, and Pauling was the one who named this process sickling. So sickle cell disease became the first condition identified as being caused by an abnormality in a protein. By 1956, further research by molecular biologists, Vernon Engram and John Hunt, meant that sickle cell disease became the first genetic disorder whose molecule molecular basis was known. These were incredible findings for the new discipline, new at the time of molecular science holding out. They believed that basic science could cure disease as pauling himself, but it, I believe that chemistry can be applied effectively to medical problems, and that through this application, we may look forward to significant progress in the field of medicine as it is transformed from its present empirical form into the science of molecular medicine. So this is early days in molecular science of molecular medicine. By 1959, Pauline could even be heard contending that man is simply a collection of molecules and can be understood in terms of molecules. Now, these scientific BA breakthroughs were important contributions to our understanding about why sickle cell disease is so devastating for those who have the condition. Because the sickling of blood cells causes oxygen supplies to tissues and organs to be disrupted. It results in or can result, I should say, in delayed growth. And sexual maturation can cause lung complications, renal failure, bone and joint damage, cognitive difficulties, stroke and severe pain. To avoid having a stroke, people who develop sickle cell anemia often require frequent blood transfusions, as did Katherine in a warm December. Many require between 37 and 50 and 75 blood transfusions annually, despite the risk of iron overload, which of course can lead to liver and heart failure. The risk of stroke is significant from the beginning of such patients lives. Most stroke victims with sickle cell disease actually are aged between two and five years old. The central condition or central symptom of the condition, though, is pain between 70 and 90% of sickle cell related admissions to hospitals are due to painful crises. They require, on average patients require on average more than seven days in hospital. In half of these cases, the patient has to be readmitted within the month, and this is gonna be turn out to be important later in my my talk. Patients who survive into adulthood frequently, or typically die in their forties. Now, despite its prevalence, there is actually really, really little public awareness of the disease even within black communities. Until the 1970s and 1969 article published in public health reports found that only two of 10 black adults had even heard of the disease. Another study this time of black families in Boston who had undergone, um, genetic screening for sickle cell disease, found that fewer than half were aware that the condition were aware of the condition, and none realized that it was hereditary. This is in the seventies, 1981, a survey of nurses and health visitors in London in Brent Kensington, Chelsea, and Westminster, where there were large, um, ethnic minority communities found that 72% did not know that sickle cell disease was not a form of cancer, and only 14% knew that the main treatment was analgesics as late as 2006. In the uk there were no nationwide clinical standards for the disease. Given such high levels of ignorance, it's hardly surprising that misinformation was rife with patients warned, you know, you cannot travel on a plane, you cannot go to hot countries and you are not to exercise. Those are three most common, um, things clinically, the disease was also neglected. A 1984 survey, um, by the Roma Me Trust British Organization exploring issues relating to racial inequalities, found that only a few, very few health districts, um, provided any services dedicated to people with the condition. Even districts were more than one third of residents with bme. Almost none employed any medical professionals or counselors for people with sickle cell. The most damning account was made by leading British sickle cell hematologist, Melissa, um, Milika, sorry, Avi and Nurse Elizabeth Anou in 1984. And these are the great heroes or heroines of, of the story in the British context. Um, they observed that around one third of adults with sickle cell disease have a severe debilitating disease and require much effort and time in both inpatient and outpatient care. Yet they went on Management of these patients was haphazard with poor interdisciplinary cooperation and little or no coordination of action, medical action. Um, they contended that the situation was comparable to that of hemophilias three decades earlier. Now, treatment or even cure of this chronic condition has been slow as well. 1984, first successful cure of the disease, um, by bone marrow transplant was carried out. The transplant, of course, involved destroying the patient's bone marrow and replacing it with a bone marrow from a normal genetically matched sibling. Many people, of course, who have the disease, um, um, have no such donors. Similarly, cell transplant, cell stem cell transplant used as secure, but of course extremely expensive Only in 1995, there was a randomized double-blind placebo controlled trial, um, which showed that hydroxyurea could prevent a painful crisis for of sickle cell, uh, patients. And this was the first drug approved to actually work. Its effectiveness was due to the fact that it increases the synthesis of fetal hemoglobin and was the result of a pediatrician called Janet Watson, who simply observed that newborn babies with sickle cell anemia were symptomless, um, because the fetal hemoglobin protected them. Even today, however, most patients continue to be treated with pain management, hydration, oxygen, anti, um, antibiotics. Now, part of the neglect of sickle cell, um, sufferers is due to the fact that most are from minoritized BME communities and poor sufferers, in other words, lack the media clout of many other desperately sick people. They are often unassured, uninsured, and so are not profitable for pharmaceutical companies. This is the American context. A study in 20 19 20 19 found that sickle cell disease received significantly less funding than other diseases. For example, although, um, cystic fibrosis affects fewer than one third of the number of people, it receives 3.5 times the amount of funding from the National Institutes of Health. And 440 times the num, the funding from national foundations generally, in the words of Gary Dawson actually, uh, writing in 1977, if the children of company directors mps and disc jockeys died horribly of sickle cell anemia, it would be a more popular cause than polio and cys, uh, cystic fibrosis research funds put together. Um, in reality, sufferers often turn to prayer in their attempts to deal with pain and survive. This is not surprising. Um, uh, 95% of adults in the US say they believe in God. 88% pray to God regularly, and 72% claim that organized religion is the single most important coping mechanism in their lives. Black churches also have played important roles in supporting their communities, including, of course, promoting physical as well as spiritual wellbeing. Second to God, the other technique used to cope with the agonizing pain of sickle cell disease has been dubbed John Henryism, named after the black laborer who worked so hard that he defeated a mechanical steel drill, but of course, shortly afterwards died, um, from mental and physical exhaustion. So in other words, it's shorthand for a coping style, demanding hard work determination against all odds and whatever the cost. Now, as already mentioned, the most central aspect of the disease is pain, which is caused when the sickle shaped cells block veins starving organs of oxygen and leading to oxygen deprivation. As I showed in my book, the story of pain from prayer to painkillers, pain is a political and cultural problem as much as a medical one In the 1970s and the mid 19, 1960s, our mid and two, the mid 1970s, physicians increasingly became aware of the differences between chronic and acute pain. The two required very different treatments. This is sixties, 1960s to mid 1970s. Um, in many jurisdictions, chronic pain specialists established multidisciplinary teams to deal with the chronicity of diseases such as sickle cell. This meant the coordination of mental health provi professionals alongside gps, pharmacologists surgeons, and anesthetists. By the 1990s, however, this approach to pain had fallen out of favor in part of due to its costs, but also due to a greater suspicion of patients. People suffering sickle cell disease were increasingly believed to be seeking drugs, especially if male and black, because they built up tolerance for analgesics. They were regarded as particularly suspect. In other words, no win situation. This was due to what Carolyn Ross called the hyper surveillance of sickle cell patients, primarily because they're black, they're routinely disparaged by medical professionals as frequent flyers as Dr. Holl Holly, uh, Christopher Lewis. Um, public health activist complained in pediatrics Sickle cell patients often get the antibodies, checkups, preventive, preventative care that they need. But when a black man turns 18, he can't go to the children's hospital anymore. In an adult hospital, he gets labeled a frequent flyer, an addict, all these other connotations, and that's what complicates their access to care and hastens and early deaths. There were disparaging comments about minoritized people having low pain thresholds. Their chronic condition often means that they take time off work, thus finding it hard to hold down a job. They're routinely denied health or life insurance. They're, um, or offered, um, it at such a huge cost. Many people with sickle cell conditions stop seeking pain relief because of internalized shame about not being able to manage their own pain or not being sufficiently stoical. As a result, patient exper patients experience much higher levels of pain than most other chronic pain. Um, patients, good patients, of course, are stoical ones. As we saw in the the lecture, um, on polio earlier in the series. Treatment resources are poor. There continues to be a serious, um, shortage of specialists in, um, these, um, in this disease, especially in low income communities. In 2010, a study of over 21,000 people with sickle cell conditions found that although 77% had been hospitalized and 94% had gone to an emergency department, where waiting times of course are very long, 60% were using Medicare or Medicaid as their primary payer. This is in contrast to between one quarter and one third of patients with, um, hemophilia and other diseases. Screening was a highly politicized and also racialized act. Carrier status is key to discrimination. It's marketed as important in reproductive decision making in which for physicians choice is always good and knowledge is power, but that was not how it was necessarily experienced. Uh, for couples in which both were carriers, the knowledge that there was a one in four chance that their child would would have sickle cell disease and not be simply a healthy carrier, is simply an abstract decontextualized knowledge. Furthermore, as we have seen throughout the series, there are in fact numerous reasons for black communities to be suspicious of white physicians and geneticists, um, who were establishing these screening programs. Now, disregarding the health of minoritized people is of course not a u phenomenon, um, as we have seen in all these lectures. Um, indeed, we, you know, in the late 1980s, a very respectable scientist even, um, proposed tattooing a person's sickle cell carrier status. Um, on the bodies of of sufferers, there was a formidable, and for those of you who came to the AIDS lecture, that should ring some bells. The age aids lecture I gave, um, two days ago. There's a formidable historical literature documenting racist assumptions about black bodies. For example, sickle cell disease has been used time and again, um, to, um, as evidence of black physiological, um, inferiority. Some commentators even point to the condition as indicative of multiple evolutionary origins of human populations. Indeed, the idea that black blood is different from white blood, um, has a surprisingly long life, even after blood types could be categorized as abo o not only segregationist, but medical professionals too. And the two, of course, are not mutually exclusive. Um, were determined to link blood types to racial classification systems. There was a lot at stake in such categorizations. It enabled people to politicize the migration of different populations into the city, into cities. It was a key plank in arguments about what has been derogatory labeled mis nation or interracial relationships. These debates wrongly assume that certain populations are biologically discreet homogeneous, especially when sickle cell disease was believed to be inherited. If only one parent possessed the tray, which is not correct, it requires both there were exaggerated fears that the white population was going to be in jeopardy. As historian Carolyn Ross explains, and all these references you can get from the, the, the, the, the written version of this, um, which is on the website, but also you'll be given it when you leave today, it's a longer version. Um, historian Carolyn Ross explains, in the 1920s, the presumption that sickle cell disease was a dominant tray meant that intermarriage marks the beginning of a rapid spread of the disease into white populations for many, um, sickle cell, um, for many sickle cell disease proved that anti miscegenation laws were not simply quaint, custom, but necessary for survival, by which they mean white people's survival. When sickle cell disease was found to be more prevalent in African Americans than Africans in the African continent, um, the explanation was said to be due to higher levels of racial mixing in the us. As Melbourne Taper explained in this wonderful book in the Blood Sickle Cell Anemia and the Politics of Race, the greater prevalence of the disease in North America was said to be proof of the dis uh, disen effects of race mixing. Similar. Similarly, prior to the 1940s, when physicians found the disease in patients they assumed were white, they responded by seeking out black blood in their white patients. Were they truly white? Were people of Mediterranean ancestral, um, uh, origins, white or not linking sickle cell conditions with black blood enabled commentators to correlate alleged biological unfitness with social, economic and political inferiority? Now, of course, this doesn't go un doesn't go uncontested. In the 19th and early 20th centuries, black sbl spokespeople could be heard loudly critiquing assumptions embedded in this medical, um, theorizing. Uh, most famously, um, w e b Dewar was one of many leaders who insisted that one of the most severe forms of injustice was the unequal burden of ill health. He was particularly scathing about the work of people like O Hoffman. In his book entitled The Philadelphia Negro 1899, um, dubois made the case that so-called scientific evidence for the poor health of black Americans was actually due to prejudice. Although he did not deny totally that there may be some hereditary predis predisposition for higher morbidity and mortality. He made the case that the most important explanation for ill health amongst black populations was not their physiological constitution, but poverty, ignorance, and general social deprivation. This was hardly surprising. He argued, remember, this is 1899. This is not surprising he continued, given that the majority were forced to live in the most unhealthy parts of town. He also noted that the situation was not helped by the reluctance of, uh, black people to seek help from physicians and medical professionals because they had very rational reasons for avoiding, um, hospitals. Um, he expected commentators who believed that the the race, he means the black race is doomed to early extinction. Didn't conclude that there was little left to do, but to moralize this had to be resisted. Oi called for increased effort and sound upbringing rather than passive indifference and increased discrimination. Now, throughout the century, his insights were taken up has been echoed by other black leaders. Important supplement to his argument was made by black physician, um, Julian Herman Lewis, 1942. So 40 years after Dubar was writing, he published the Biology of the Negro, in which he introduced the term anthro pathology or comparative racial pathology. Lewis's writings were a trenchant refutation of scientific racism, um, that insinuated that people with darker skins were somehow different. Scientific writings were biased. He observed since they assumed that white patients were the normal and therefore race did not need to be mentioned. While when scientists conducted tests on black subjects, race became the notable, um, um, feature. Similar refutations were made by physician Charles Roman in his book, American Civilization in the Negro 1916, who maintained that although all kinds of varieties are found in races, nevertheless, all men are equal physiologically at their birth and never cease to be so until they die. Um, the difficulties though in getting this message across was identified in a 1948 editorial of the, uh, journal of the National Medical Association. A journal of the National Medical Association, incidentally, is a medical journal, um, edited by and dedicated to the health of African Americans. And in the 1948 editorial, it warned that little is known about sickle cell disease, but they phonically noted that nearly all the information that we have about the condition has been obtained by scientists of other races by which they meant white scientists. Now, of course, racism and scientific biases were not the only reason for the relative neglect of, um, research into sickle cell disease. Even black physicians admitted that there might be more urgent, um, diseases affecting black communities tb, for example, as we saw in an early lecture of the series, um, sickle cell conditions also had no cure in this period. It was not, therefore, it was not irrational. Therefore, for minoritized physicians, medical officials and community workers to focus scientific and medical energies on public health initiatives that could be effective. The civil rights movement of the 1960s changed everything along with every other aspect of Black Lives Disease was politicized. Black civil rights leaders and revolutionary political parties saw in sickle cell anemia a symbol of discrimination, okay? Um, as well as a way to mobilize black aspirations for better lives. For the Black Panther Party for Self-Defense founded in 1966, the failures of government to governments to address sickle cell disease was simply another example of disdain for black lives. They instigated major public health programs, eventually shifting their ideas from self-defense to those of self-help their clinics encouraged black people or educated black people about sickle cell disease, provided genetic screening and spread the view that the politics of sickle cell was the politics of institutional racism. That was their chief message. Now, federal and local politicians began to take notice. They began to listen. At the very least, they actually had a lot to gain, um, electorally for by alien, um, aligning themselves with strictly limited, um, aspects of the civil rights movement. Even President Nixon recognized the political value of drawing attention to sickle cell, um, disease as signaling signaling his support for black causes. 18th of February, 1971, he mentioned the disease in his health address to Congress. Year later, the Sickle National Sickle Cell Anemia Control Act was passed, providing funds for research into the disease. Ironically, hmm, um, no surprise here. Nixon initiated these measures at the same time. He introduced other laws that aversely affected black and other minoritized communities. Increased funding though for sickle cell research was well-meaning, but was effortlessly co co-opted, if you like, into a politics of pity and the politics of electoral ego to egoism rather than anything more substantive. Now, the resurgence though of interest in sickle cell disease lasted less than two decades. By the 1990s, the condition had not only fallen once again into obscurity, taken over by more white afflictions, such as breast cancer aids, dementia, as we've seen in other lectures in this series, but had arguably become more stigmatized. So it arguably became more stigmatized, um, than it had been prior to the 1960s. Um, after all, Carolyn RAs has observed in her book, uncertain Suffering, racial Healthcare Disparities and Sickle Cell Disease. The US was substan substantially closer to racial equality in life expectancy in 1945 than it was by the end of the century. Sickle cell neglect is part of this rising inequality in healthcare. The increasing from 1990s, the increasing stigmatization of the disease was the result of this huge conservative backlash focusing on welfare malingering, um, drug addiction. The war on drugs was incredibly damaging for sufferers of sickle cell conditions. Not only did sickle cell patients find themselves increasingly labeled druggies, but its racialized aspects or racialized elements meant that they were also accused of dealing in drugs and faking sickle cell anemia crises in order to defraud health systems and insurers. 1997, a survey of American medical practitioners found that 53% of emergency department physicians remember this is where most patients go, emergency department physicians, and nearly one quarter of, um, hematologists believed that more than a fifth of the adult suffering an acute sickle cell episode were addicted to pain relieving drugs. Even children were being labeled addicts according to between one fifth and one quarter of these physicians for patients in the midst of an excruciating sickle cell crisis. This was devastating since emergency department physicians were their primary carers. In reality, their situation was even worse. After all, most emergency department physicians only saw patients once. So in other words, they got no insight into how a patient's pain progressed. Waned, flared up again, this meant that they tended to discharge patients from the ward with an inadequate supply of analgesics, which of course increased the risk of the patient having to return and consequently to be regarded as either, um, addicted or attention seeking, or both. Now, one of the most insightful insights, um, into this process is that of Keith Welo. And if you're gonna read one book on this, um, this is, this is the one I would recommend, um, called Dying in the City of Blues Sickle Cell Anemia, and the Politics of Race and Death. Hulu argues that sickle cell disease and syphilis were the main illnesses used to denigrate, um, both the biological and social standing of African Americans. For welo diseases are commodities. They have, in his words, they have a place in a network of exchange relationships where much like any other object, the disease concept and the illness experience acquired value and could leverage resources, money, or condition or concessions, although similar so far, this has really been focusing very much on this, on America, similar dynamics, um, were observed, um, in Britain there were also other factors that dominated the British scene, including empire decolonization and migration. The best analysis, um, is that of Grace Redhead in an article, which I hope, I hope she's gonna become a book, um, entitled, A British Problem Affecting British People, sickle Cell Anemia, medical activism, and Race in the National Health Service. 1975 to 1973 reads, redhead's arguments are subtle and they're complex, so apologies for, um, dubbing them down right now, but please read her. It's all online, free online, um, incredible articles and blogs. I mean, I really recommend them. One of the chief points she makes is that it's this kind of irony that of the fact that migrants from the former British Empire made the welfare state possible and shaped its forms of assistance in myriad ways. Yet the same people were accused of being welfare parasites when they used it. By the end of the 1960s, nearly one third of nurse patient nurse pupil vacancies were being filled by commonwealth migrants. By the mid 1970s, between 18 and 32% of people working in hospitals were born outside of Britain. Yet these were the workers who were being reproached for bringing black blood diseases into White England. Migrant nurses and other N NHS workers were even accused of spreading the condition throughout the wards impossible. In Britain as in the us neither racism nor neglect went uncontested. So local hematologists, nurses, patients, rights activists began organizing. And there's a huge, um, um, section on this in the written copy of my, my talk. In my final reflections, though, I wanna turn just briefly, um, four or five minutes to a problem that's pervasive in too much of the debates about sickle cell, and I'm including my own work here. Particular ideological dis discourses, specifically medical sciences and anthropology, have historically claimed that there is a link between sickle cell and race or racial distinctiveness. By identifying as an indicator for diseases such as sickle cell anemia, we risk cementing the false idea that racial groups are biologically determined rather than simply an arbitrary way of distinguishing different populations. There is more variation within groups bundled into races than the, than between them. In other words, the racialization of diseases such as sickle cell reinforces the ideas that there is immutable, biological, and genetic properties. It ignores the insight that race itself is a social construct. This point was made really forcibly by the American Association of Biological Anthropologists. In this statement of 2019. They explain that race does not provide an accurate representation of human biological variation. It was never accurate in the past, and it remains inaccurate when referencing contemporary human populations. Humans are not divided biologically, inter distinctive, uh, um, continental types or racial genetic clusters. Instead, the western concept of race must be understood as a classification system that emerged from and so in support of European colonialism, oppression and discrimination. So in other words, race is a way of sorting individuals and populations into units based on historical contexts and social cultural, political motives. Now it's real to the extent to, to the extent to which it affects our biology, health, and our wellbeing. In other words, while race is not a scientifically accurate biological concept, it has important biological consequences because of the effects of racism. And the association, um, encourages us to use the word populations, um, instead. So in conclusion, diseases of course are enmeshed, um, meshed in social worlds. Medical and insurance cultures matter. Worlds are changed, defending defend depending on funding of the NHS or Medicare. It matters how genetic counseling is conducted, as we have seen in this lecture, but also in the entire series of six lectures. The role of activists have been absolutely central to the politics of, um, of illness. But although more research into sickle cell disease and improved healthcare facilities for minoritized communities are urgently required, if a real difference is to be made for people who suffer this condition, more attention needs to be paid two ways of tackling inequalities at every, um, single level. Thanks very much. Thank you very much Professor Burke. Um, wonderful lecture as usual. I I I'm gonna ask questions come in from outside, um, which is, do you think the civil rights movement in the United States or later developments through charities mm-hmm <affirmative> had the greater impact? In other words, is this a sort of social political movement or one which is disease based changed in the way you think? Yeah, I don't think the two can be easily separated. I think that the, the, the, the, um, the civil rights and the charities are actually often in often the same people <laugh>, um, and if they're not the same people, their own dialogue with each other. So I think that in order the important breakthroughs that we have in sickle cell, um, disease understanding, but also in all the other diseases that I've been talking about, um, require both of those things to happen. It requires activism and it also requires, um, institutional, um, change. And getting those two in dialogue is what makes effective change. Um, and I think that that is what is really important. Now, you could, the person then could ask, well, what, what is coming first? What is driving it? Um, and I think that's a difficult question to answer categorically in the, and, and I think it differs for the different illnesses that I look at in these, the series. I think in terms of sickle cell, if I was to say which came first, um, what was pushing it forward first, I actually probably would say civil rights and an activism more generally because, um, so many of the, the charities that were dealing with these patients prior to that period were extremely white dominated, um, and, and had great prejudices against their own patients. Um, and as I say, there is, um, a kind of, um, wave-like thing. It's not that it was always bad, um, I think there were periods of good things happening and then bad happening. Um, uh, neglect happening's, what I mean by bad. So, uh, certainly sixties and early seven to mid seventies, I would say. It's driven by the civil rights and it's driven by black activists, um, who then are affecting the institutional support systems that are, that are coming up. Hello. Um, my name's Michelle Soto. I'm actually the chair of the Sickle Cell Society. And just to echo what you've said about charities and activism mm-hmm.<affirmative>, um, so we, um, basically the support the sickle cell thalassemia or party parliamentary group. Okay. Um, and through that, the report no one's listening was, um, basically it took lots of witness statements around people's direct experience, particularly around emergency care and basically echoing everything you've covered today, but we're using that, um, political tool when no one's listening report to force change top down from the Department of Health, um, into the nhs. So they are absolutely, although we're a charity activism plays a large role Of, of what we do, um, and couldn't do it without them. Great. And look, we just say, firstly, I'm an historian, so basically I kind of stop <laugh> at some period. I'd love to talk to you about what's happening right now in terms of, in terms of the politics of this, this disease, because it's, it's really, really interesting. So I'd love to talk to you, but just then, you know, to echo and something that I didn't touch on in, in this talk, but, um, but you've given me an opportunity to say it now, and that is one of the things I've kind of left out in this talk is the patience, um, um, verbalizing and protesting. I mean, I doubt here with, um, you know, activists, people who are, you know, involved in, um, established political organizations and, and radical groups. But of course patients themselves also were protesting, I mean, people as individuals, um, telling their experience, getting the, the, the word out, um, um, forcing, uh, particularly their own families and immediate communities to listen. And then their sort of language is being taken up by the more, um, politicized, if you like, activists. Um, so there's also that aspect, which is really very, very interesting. Yeah. But I'd love to talk to you about the present <laugh>. Sorry, there's one question just over here. Thank you very much for your lecture. Um, one thing you didn't touch upon, and this might be a bit out of it, is, um, people who are responding to someone with a crisis, the ambulance I'm talking about Yeah. That they would turn up and say, well, there's nothing wrong with you. I mean, I'm a nurse. So, you know, listening to that was very, very traumatic for me. And we've tried to talk to LS to inform them and also the ambulance crew. Yeah. That when they go that they can recognize the crisis system. Before you answer that, Jenny, I think I'm, I'm a medic during my training, the quality of my education. I'm an old guy now, but they, but they didn't really tell us those things. And I think maybe an open question to the floor and to anyone who can answer here is, how good do we think the education is of the circuit of people engage in the surface? And what can we do to improve? Would you like to commit, contribute, run, drive, and run?<laugh>? Hi. Hi. Hi. So I'm a pharmacy student and I've just finished my studies and in my second year of study we only covered sickle cell once, and that's now. So I'm sure that things haven't really changed and we haven't really grasped the fuller understanding. We covered thalassemia in my fourth year of study, so that's when we were coming to our end of our study. So, um, when it comes to blood diseases and, um, certain groups that are really affected by it, were not, the emphasis is not there. Yeah. Even in my institute, and that's our, um, Kings College. So it's, I think it's quite pervasive, the lack of awareness really. Yeah. Yeah. I mean, I'm just gonna echo what, what both of you're saying. I mean, in my book, the story of pain, which does actually go up to the present, um, you know, the, the poor medical education about pain is a very, very striking, uh, thing within medical education. Um, that the, you know, most people or large proportion of people go to seek medical help because they're in pain. And yet medical professionals are given very little education about pain and particularly invisible kinds of pain. Um, ones that, um, that you can't see, like you can see a lesion or, or something like that. Um, so echoing what, what both of you have said very much, Hello? Hi, I got a quick question. So I just wanna know why they particularly focus on the sickle cell disease. There's not really much research on the sickle cell trait. I suffer with the sickle cell trait, and I also had complications during my pregnancy. Mm-hmm.<affirmative>. So every time I try to research, they always, um, tell you about the sickle cell disease mm-hmm.<affirmative>, but there's not much research on the sickle cell trait. Mm-hmm.<affirmative> and sickle cell trait is literally the root cause of the illnesses. It takes two parents to make a full-blown sickle cell disease. And there need to be a lot of more research on the sickle cell trait because I suffered with, um, a lot of difficulties that I can't really, I don't wanna explain right now, it's very personal to myself, but if there was more research on it, it would help a lot of people. Mm-hmm.<affirmative>, a lot of people. There's, there was a footballer that literally passed away a few years ago. He blacked out on the pitch. Mm-hmm.<affirmative>, like even with myself, I can't do extreme sports mm-hmm.<affirmative> because of my own crisis with the sickle cell trait. So if there's any more research on that, that'll be helpful. Yeah. Um, yeah, exactly. And you know, as I said, um, in, in the paper, the research on sickle cell tray and sickle cell disease is, is really very, it's very low compared to other forms of oth other diseases, other similar diseases, other genetic diseases like for example. Um, so agree. Totally. Yeah. But I mean, this is why I think we need to be talking more about it. Absolutely. Thank you. Uh, hello. Thank you for the, the, um, lecture. Thank you very much. Um, I noticed that during your lecture, no fault of your own, a lot of statistics were based on American findings. Yeah. Um, we do, and I know this personally have a large, there is enough of us here, by us I mean sufferers of sickle cell disease and sickle cell trait, you're looking at two of them here right now. Mm-hmm.<affirmative>. Um, so what do we do to, um, I wonder what other people's thoughts are, what do we do to encourage more research here in the uk? Yeah. That we have more statistics that are closer aligned with our, um, African British, Afro-Caribbean, British, um, populations. Yeah. Um, uh, yeah, that's Basically, yeah. Great. I'd Love, I'd love to see what I, I've done, I've tried to find a lot of paper. I've read lots of papers myself. It's all about, you know, studies in Delaware or New York state Yeah. Or places, places like that. What's going on here in London and across the, the uk I wonder? Yeah, Absolutely. I mean, when I started researching sickle cell, um, it was in the American context. Um, so apologies for that, but that's kind of my area when it comes to sickle cell disease. And there is so much less research, as you say, less research done in the British context. There is some great research, um, redhead for example, um, you know, read her blogs. She's the best in the British context, um, least that I know of. Um, so, so there is a growing interest here, but I think you're really right in identifying that it's a problem that so much of what we know about sickle cell is coming from a, from the states. Um, and there are things that are specific to the British context, which I did try to allude to. I think there are differences, um, but we need more research done on that. And if, you know, if you're gonna ask what can we do here in this room to help that happen, I would say join charities, get involved in in charities like that, you know, lobby your mps, talk to your physicians, um, and try and get the message up that we actually need this kind of research, um, at every single level at medical school level, but also at academic level. Um, I mean, I've been trying to get ma students of mine and even BA students of mine to write dissertations on this topic, um, because there's so much more that we can learn, um, about it in the British context. It's a really great point. Your question's going To be the last one. Okay. Um, it's a bit of a three parter though. So, um, just firstly, I'm curious to find out what happened with this sort of the enthusiasm for molecular medicine. Mm-hmm.<affirmative>, um, did that just fall off or has it just not transpired in when it comes to sickle cell? Um, I was also curious to know how much, um, you know, this, uh, perpetuation of black blurt and especially sickle cell reinforcing that kind of fed into this whole one drop rule in America. And finally, um, I mean clearly across the uk there is this sort of postcode lottery when it comes to healthcare. And when we are specifically looking at communities, you know, class quote unquote ba, um, I just wondered whether there is a tendency within the health provisions in those communities that there is a preference to provide healthcare or better healthcare for the bay members that aren't black. So for exam, well, I think, you know what I mean, um, is that a real thing that's going on? Is that part of this institutionalized racism? Is that something we need to be speaking out against, bearing in mind, you know, the, the condition level NHS at the moment and across the board. Yeah. Um, firstly, I think we need more research and we need that research has to be based on local areas. I mean, you talk about the postcode lottery, but also in, you know, different things are happening in different parts of the country. I don't think there's a single answer for that. And just very, very briefly, cuz I know we're well over time now, molecular medicine is alive and well. Um, and thank goodness, um, for that, I mean my own, my own university and, and your own university, your molecular medicine is making huge strides, um, in terms of our understanding of disease processes. Um, so.