Editor-in-Chief Letter From Lauren Ho The Editor Senior Editors Mia Calzolaio Dear Reader, Charity Chu Destiney Green I am excited to release the third issue of Diagnosis, Horace Mann’s premier medical Johanna Scher journal! I am so proud to display the hard work of all of the writers and editors, and hope you enjoy reading this issue! Leah Sepiashvili

In this special issue focused on marginalized groups in medicine, you will find ar- Juliette Shang ticles on the dangers of race-based medical testing, the Guatemala syphilis exper- iments, healthcare discrimination against transgender people in the US, a variety of doctor profiles (quick reads!), and much more! There also is the second part of a Junior Editors two-part interview with Dr. Chidi Akusobi ‘08 on how race is utilized in diagnosing patients, the school-to-doctor pipeline, and the importance of confronting systemic Malcolm Furman racism in the healthcare system. I would like to extend special thanks to all of the Sammi Strasser writers and editors for all of the time and effort they have dedicated to this issue. I would also like to thank our faculty advisor, Mr. Epstein, for his constant support, Emily Salzhauer guidance, and advice. Lamia Chowdhury Ari Borut Sincerely, Bodhi Lavine Fair Use Notice Diagnosis is a student publication. The opinions represented are those of the writers. The Horace Mann School is not responsible for the accuracy and contents of Diagnosis, and is not liable for any claims based on the contents or views expressed herein. All Layout Editor editorial decisions regarding grammar, content, and layout are made by the Editorial Board. All queries and complaints should Lauren Ho be directed to the Editor-In-Chief. Emma Chan This publication contains or may contain copyrighted material, Editor-in-Chief the use of which has not always been specifically authorized by the copyright owner. We are making such material available Volume I, Issue III in our efforts to advance understanding of issues of scientific significance. We believe this constitutes a “fair use” of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, this publication is distributed without profit for research and ed- Faculty Advisor ucational purposes. If you wish to use copyrighted material from this publication for purposes of your own that go beyond “fair use,” you must obtain permission from the copyright owner. George Epstein

2 3 The Dangers of Race-Based Medical Testing Interview with Chidi Akusobi ‘08 6 Lamia Chowdhury 34 Lauren Ho Racial Discrimination in the Scientific HIV/AIDS Activist Gao Yaojie: Still Fighting Injustices in her 90s Community: The Tuskegee Syphillis Zahra Motwani 8 Experiment 38 Mia Calzolaio The Elderly and COVID-19 Vaccines: Prioritized Yet Vulnerable Malcolm Furman The Horrific Baltimore Paint Lead Study 40 Charity Chu 12 Lack of Diversity in Genetic Testing: A Cause for Misdiagnosis Susan La Flesche Picotte: The First Native Sammi Strasser American Female Doctor 42 Mira Bansal 14 The Consequences of Historical Female Exclusion from Clinical Trials Dasha Dolgonos The Mother of Modern Medicine 44 Lamia Chowdhury 16 The Revolutionary Life of Mary Putnam Jacobi Volume I, Issue 3 I, Volume Charity Chu Does Race Exist on a Genetic Level? 46 Myra Malik 20 Rising Mortality Rates for African Americans, Asians, and Hispanics Diagnosed with Melanoma Healthcare Discrimination Against Transgender Sophie Rukin Individuals in the US 48 22 Ari Borut The Underdiagnosis of Mental Disorders in Women Charles Drew: Racial Advocate and Inventor of Miller Harris 24 the Large-scale Blood Bank 50 Elise Kang David Ho: Contributions to AIDS Research and Treatment Contents Health Disparities in the LGBTQ+ Community 52 Bodhi Lavine Zahra Motwani 26 Genetic Diseases that Disproportionately Affect Ashkenazi Jews Carlos Juan Finlay: The Man who Saved 54 Emily Salzhauer Millions 30 William Bramwell

Inhumanity in the Guatemala Syphillis Experiments 32 Athena Rem

https://www.freepik.com/free-vector/medical-healthcare-concept-banner-blue-color_6922716.htm https://nysba.org/events/lets-talk-about-race-the-origins-of-systemic-racism-in-the-united-states-and-tips-for-dismantling-those-systems-by-being-actively-anti-racist/ research project that’s goal is to iden- system for kidney-disease diagnosis patients have higher muscle mass tify and map all of the genes in the which does not consider race a deter- when it has been concluded that race human genome. Further, she points mining factor. does not exist on the genetic level) out that the production of creatinine By acknowledging existing prac- so that medicine is able to serve all is influenced by factors other than tices that disproportionately harm people equally, no matter their race. muscle mass as well, such as diet and one group of people and promote With more and more technological The Dangers of medications. Eneanya calls for more misconceptions based on race and advances, it is likely that the scientif- and more institutions to take these attempting to change them, these so- ic community will be able to create facts into consideration and question cieties are challenging the status quo more just and accurate practices that the reliability of race-based testing to create a more equitable medical take into account all people, includ- Race-Based when it comes to kidney disease. world. It is essential to question older ing those with complicated identities, The example of Noah perfectly practices in the face of new research like our friend Noah. displays the issues with taking race (one example being that Black into consideration when calculating Medical Testing eGFR. The first problem is that there are no guidelines for determining the eGFR of mixed-race individuals, Lamia Chowdhury who, according to the 2010 census, make up about seven percent of the US population. Secondly, since Noah self-identified as Black, he will have to wait longer to get a kidney et me introduce you to primary test used to diagnose kidney cluded that race also plays a factor transplant. This is because a patient Noah. He has just moved disease is a measurement of one’s in creatinine production because of is not usually put onto the waitlist to the city and is filling estimated glomerular filtration rate a few studies determining that Black until their eGFR reaches about 20, out paperwork at his new (eGFR). To understand what this Americans tend to have a higher and Noah’s eGFR will always be a Ldoctor’s office. He has no trou- figure means, it is essential to un- muscle mass than their White coun- bit higher than a White patient’s as ble answering questions about his derstand the function of the kidneys. terparts. As a result, the equation also long as race is part of the equation. A personal information until the form These two bean-shaped organs serve has been adjusted so that the eGFR recent study suggests that if race was asks for his race. He is of Bosnian as the body’s filtering system; they of a Black patient is automatically not taken into consideration when and Sudanese descent, but there is no cleanse the blood of toxins which raised by more than 20% to account calculating eGFR, the condition of multiracial option. Since his African can be anything from a simple Advil for the extra muscle mass, which approximately one-third of Black features are far more prominent, to lots of alcohol. Creatinine, one continues to be in the equation today. patients would be reclassified as a he simply checks the box that says of these toxins, is easy to quantify But, muscle mass of a living human more severe stage of kidney disease, Black. Noah doesn’t think much through a blood or urine test. This can not directly be measured, only and they would thus be prioritized more of this because it is a routine number can be plugged into an equa- that of a cadaver, or dead person, for treatment options like transplant question on most questionnaires. tion in order to determine someone’s can. Instead, the conclusion that referrals and dialysis sessions. Evi- However, it turns out that Noah’s eGFR, a measure of how well their eGFR should be adjusted based on dently, Black patients are not receiv- selection will play a significant role kidneys are functioning. racial lines was drawn from differ- ing the potentially needed treatment later on in his life when his doc- There are a number of different ences observed in other factors such as quickly as they should, which can tor suspects that he needs a kidney elements that affect the relationship as body fat, potassium, calcium, and lead to a lower quality of life and transplant. In comparison to White between creatinine numbers and creatinine levels from three small higher risk of death. people, a disproportionate number of eGFR, though. Creatinine is pro- studies of only a few hundred Black Both the American Society of Black people are victims of kidney duced as a result of repeated wear and White patients. Nephrology (the study of kidneys) disease. In fact, a Black person is and tear on one’s muscles, so those Dr. Nwamaka Eneanya MPH, of and National Kidney Foundation about three times as likely to expe- with a higher muscle mass will the Hospital of the University of have worked to address this problem. rience kidney failure, yet far less naturally have more creatinine in Pennsylvania argues that race-based They have created a joint initiative likely to receive a transplant. their bloodstream. Because of this, kidney disease diagnoses should called the Task Force on Reassessing One important factor that causes adjustments are made in accordance not be contingent on these studies the Inclusion of Race in Diagnosing this disparity is the method through to gender and age, since women and because of their small scale, and Kidney Diseases, which, through which doctors determine who quali- older adults tend to have less muscle also because race does not exist on extensive research, analysis, and dis- cussion, has published a report that fies as a candidate for the transplant mass. However, in the late twentieth the genetic level, according to the https://www.34st.com/article/2020/07/penn-summer-course-race-gen- calls for the implementation of a new list in order to receive an organ. The century, a number of scientists con- Human Genome Project, a scientific der-racism-discrimination-public-health-healthcare

6 Diagnosis Summer 2021 7 sumed Black people were prone to syphilis who were observed for six however, the men were not to be venereal diseases, like syphilis, fur- months and had never received informed that their deaths would ther concluding that Black people treatment. However, after sending be deemed necessary for the study. could not be convinced to receive Dr. Raymond Vondehler to find Vondehler also decided to add a treatment for those illnesses. This subjects, the physicians found they control group of healthy men to the conclusion provided the physicians could only gain volunteers under study. If those men ever became with a stronger excuse and reason- the premise that these patients syphilitic, they would simply be ing to observe the syphilis of the would receive treatment. Also, the switched over into the test group, a test subjects in a so-called “natural” rate of syphilis in Macon County, stark contrast to standard research environment. once projected by the USPHS to be procedure. To continue the guise of In 1929, the USPHS performed 35%, was in reality near 20%, and providing treatment, the USPHS a study in the rural South on the a larger number of men had re- hired nurses to provide the men prevalence of syphilis in Black men ceived treatment for syphilis than with meals, transportation, and and the possibility of mass treat- previously thought, challenging more ineffective medication. When ment, finding Macon County, Al- the assumptions once conceived it became difficult to persuade the abama to have the highest syphilis by social Darwinists. When the men to come in for observation, rate amongst the areas surveyed. study officially began, the USPHS physicians offered to pay for their The study also found that there was did not inform the volunteers that burial expenses. In 1936, the first https://www.cdc.gov/tuskegee/timeline.htm a possibility for mass treatment— they were participating in an ex- paper published about the study mercury- and arsenic-based medi- periment, merely that they were concluded that latent syphilis of- cines were considered proper care being treated for “bad blood.” To ten largely increased the frequency at the time. However, these find- maintain both the false pretenses of the development of cardiovas- Racial Discrimination in the Scientific Community: ings were ignored. In 1932, Dr. and the subjects’ participation, the cular disease. The study also cited Taliaferro Clark decided to renew physicians would give patients in- that 16% of the subjects showed an experimental study in Macon effective medication, like mercurial no signs of morbidity compared The Tuskegee Syphilis Experiment County, citing its high rate of syph- ointments or inadequate doses of to 61% of the control group. Later ilis as an opportunity for a “study neoarsphenamine. articles and statements from physi- Mia Calzolaio in nature.” Essentially, Clark want- In 1933, the USPHS decided to cians regurgitated the same infor- ed to passively observe the course continue the study, despite their mation: dormant or latent syphilis of syphilis in Black men residing in initial assumptions about the com- has drastic negative impacts on the n 1932, a group of physicians their deaths. At the time, physi- that Black people in America were this area, as he believed that these pliant attitude towards syphilis in life expectancy of Black men. Yet under the US Public Health cians wanted to survey the impact undergoing a degenerative evolu- men would not receive treatment Macon County. During this time, throughout the experiment, sub- Service (USPHS) initiated of untreated syphilis and believed tionary process and that emanci- in their lifetime. The initial ex- physicians believed that autopsies jects never once received treatment an experiment titled “Tuske- that latent syphilis did not require pation had furthered their mental, periment, coordinated in 1932 by of the men involved in the experi- directly from the USPHS. Instead, Igee Study of Untreated Syphilis in treatment. According to an article moral, and physical degradation. Clark, was supposed to consist of a ment were the only way to scientif- the USPHS proactively worked to the Negro Male.” The experiment from McGill University, the physi- Furthermore, scientists perform- range of Black men with dormant ically prove the results of the study; ensure that the men would not re- consisted of 600 Black men, 399 of cians wished to observe the “natu- ing biased physical examinations which had latent syphilis, meaning ral progression of syphilis within concluded that Black people were they did not show symptoms of the a community that wouldn’t seek the lowest species in the Darwin- disease, and the remaining 201 of treatment.” ian hierarchy based on their set of which did not—the latter acted as To understand the Tuskegee ex- physical characteristics. These an- a control group. Over the course of periments, it is necessary to under- atomical differences centered on 40 years, the USPHS intentionally stand the medical context of the the sexual nature of the Black pop- provided these men with ineffec- times. In the early 20th century, a ulation, specifically Black men’s al- tive treatments—even after peni- rise in the popularity of social Dar- leged desire for white women. Phy- cillin was developed as a standard winism led to the fundamentally sicians believed that due to their cure—and repeatedly manipulated racist nature of the assumptions supposed physical and mental in- other health systems to ensure that that served as the basis for the feriority, Black men had underde- the test subjects could be observed, USPHS’s study. At the time, many veloped brains but overdeveloped unhindered by medicine, until scientists and physicians believed genitalia. Thus, the physicians as- https://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-research-black-experiences/487646/

8 Diagnosis 9 ceive treatment from anywhere else. questions, they did not consider a bers. The US government also es- In 1934, researchers provided doc- key point of the experiment—the tablished the Tuskegee Health Ben- tors in Macon Country with a list entire trial was based on observ- efit Program to provide this help. of men in the experiment that were ing the natural course of the dis- In 1997, President Bill Clinton not to be treated. In the early 1940s, ease, not treating it. In 1973, the apologized to eight of the survivors the USPHS did the same with the panel determined that the trial was on behalf of the nation. Following Alabama Health Department. In “ethically unjustified,” a seemingly these attempts to make amends, 1941, when the Army drafted sev- gross understatement considering the National Bureau of Economic eral of the men and asked that they that the men involved had never Research published a paper in 2016 begin antisyphilitic treatment, the once been informed they were par- that argued that the disclosure of USPHS provided the Army with a ticipating in a trial of such nature. the Tuskegee study in 1972 reduced list of names to be excluded from The final report stated that the men the life expectancy of Black men at treatment. In all of these instances, had not consented but instead vol- the age of 45 by 1.5 years. Howev- the physicians complied with the unteered for the experiment when er, not only did the study affect life manipulations of the USPHS. Even they had been informed that they expectancy; it also severely imped- in the early 1950s, when penicillin were receiving free treatment for ed Black people’s trust in the US was accepted as a standard treat- their syphilis, not that they were medical system. In retrospect, it is ment for syphilis, researchers did participating in an experiment. By crucial to acknowledge that racism not provide it. Around 30% of the the time that the experiment end- is not only pervasive in social as- subjects secured treatment else- ed, a mere 74 of the 600 test sub- pects of life and parts of legislative where on their own, but only 7.5% jects were alive. Among those dead, bodies but also largely impacts the received an effective dose. An ensu- 128 of the subjects died from syph- medical system in America and the ing report in 1955 concluded that ilis or syphilis-related diseases, and people it serves. the received treatments did not al- not only that, 40 wives and 19 chil- ter the validity of the experiment. dren of the subjects contracted the The USPHS repeatedly justified disease. the racial component of the ex- Eventually, the National Associ- periment. In a 1965 meeting, the ation for the Advancement of Col- Center for Disease Control de- ored People filed a lawsuit against termined that race did not affect the USPHS that was settled for 10 the study, saying that the subjects million dollars, which went towards were at a point where treatment the medical treatments of surviving could not help them and that “they subjects and infected family mem- [were] getting better medical care than they would under any other circumstances.” In 1969, the CDC again reaffirmed the experiment. It was not until 1972, when accounts of the experiments first appeared in the press, that the Department of Health, Education, and Welfare (HEW) created a panel to investi- gate and end the experiment. Yet, the injustice did not end there. The panel set out to investigate two main questions: did the subjects provide consent, and should pen- icillin have been provided when it became widely available as a cure? While the panel examined these https://en.wikipedia.org/wiki/Tuskegee_Syphilis_Study https://www.socialworker.com/feature-articles/ethics-articles/The_Tuskegee_Syphilis_Study_and_Its_Implications_for_the_21st_Century/

10 Diagnosis Summer 2021 11 repairs necessary since the house effect on the participants’ health, but treat their children’s conditions before was built after the nationwide ban of in this study, the experiment had det- the effects of lead poisoning were lead paint (group five). They studied rimental effects on the participants, irreversible. The Horrific Baltimore Paint Lead Study a total of 100 houses with 20 houses and the parents of these children felt Throughout a decade-long series of in each group. The KKI recruited exploited. The KKI believed that if lengthy court battles, the court set out Charity Chu families with small children that had there were zero risks required in pub- a number of rulings. The first claim already been living in these homes to lic health research, many problems said that, under federally regulated participate in the study, with a total of could not be effectively addressed, and established medical standards, 140 children across all groups. The re- resulting in a greater risk of leaving children should not have participated searchers were focused on how much the public in more danger. in the measurement of effective lead lead accumulated in young children Because of the detrimental effects abatement methods because the study when living in these homes. The fam- of the study on the participating was unethical. Their second claim ilies were paid for their participation children, many participants in the said that parents could not legally in the study, which included collect- study sued the KKI in a class-action consent to exposing their children ing dust, soil, water, and blood sam- lawsuit—a petition in which a large to a possible health risk, especially ples. The effectiveness of the different group of people are represented by when the trial did not have the best abatement methods was determined a select few members—for deliber- interest of the children in consider- by measuring how the children’s ate exposure and negligence. They ation. The court also said that it is up blood became contaminated with lead argued that the consent form signed to the researchers to protect child test while also comparing among the five by parents did not clearly disclose subjects from harm in nontherapeutic different groups. that their children might accumu- research studies. And in regards to the The takeaways of the experiment late hazardous levels of lead in their clarity of the consent forms, the court resulted in the understanding that blood as a result of participating in ruled that, since the KKI did not lead paint quality was more harmful the experiment, which led to a range effectively make the parents aware of https://www.wypr.org/show/future-city/2019-10-16/a-toxic-legacy-confronting-lead-poisoning-in-baltimore than the concentration of lead in of damage, including damage to the the potential harm to their children, paint due to the increased likelihood central nervous system and kidneys, the agreement was invalid. The court he scandal surrounding the lead to reduced cognitive functions African American families in low-in- of ingesting the paint or dust from de- to irreversible behavioral problems eventually found the KKI guilty of the Baltimore Lead Paint Study and behavioral disorders, especially come communities. An estimated caying lead paint. However, there was and, in the most extreme cases, even claims explained above. is a perfect example of the in children suffering from persistent 95% of low-income residences in a lot of criticism directed at the study. death. In addition, the parents argued The outcome of this entire study ways scientific research can exposure. Even in pregnant mothers, Baltimore had walls painted with lead Once the study concluded, many of that the KKI knew that the children and its aftermath highlights numerous Tgo against morals. The ethics behind developing babies can be exposed to paint. In houses with lead paint, as the African American children who were suffering from lead poisoning issues today. The families were taken research involving human subjects lead via the transfer of blood from the the walls begin to decay and the paint participated in the study were left as the researchers were observing the advantage of by an institution that did has been debated for a very long time. mother’s blood supply into the uterus, begins to crack, lead is subsequently with neurological disabilities. The re- increase of lead concentration in the not respect the lives of the children In a world where people of color which can result in premature birth. released into the air, which increas- sults of the study in no way benefited children’s blood. Rather than alerting they were using as guinea pigs. In ad- have been used for experimentation, Lead can disrupt several processes es the risk of lead indigestion. To the families besides a small amount the parents of this, which could have dition, it also highlights the ongoing including the syphilis experiments such as neurotransmitter release, syn- combat this, the government began of compensation given out during the given the parents time to catch their health crisis of low-income housing, during the 1930s and mass steriliza- apse formation, energy production, searching for methods of “lead paint study. In other medical research stud- child’s condition before it worsened, which disproportionately affects fam- tion in the 1900s, it is understand- and message transmission. As the abatement,” which is a process of ies, the participants would either re- the KKI collected and stored the in- ilies of color. able that there would be controversy lead inhibits these processes, symp- permanently eliminating lead-based ceive a developing cure to a condition formation as data. This negligence led surrounding the subject. The backlash toms such as reduced IQ, learning hazards—a very costly procedure or a placebo which would have no to the families not getting a chance to that was stimulated by the Paint Lead disabilities, decreased growth, and when enforced nationwide. Hoping to Study, a clinical study conducted in memory and concentration problems find a more inexpensive method, the https://studentaffairs.jhu.edu/life-design/news/kennedy-krieger-career-fair-17/ Baltimore by the Kennedy Krieger In- may affect the baby in childhood or Kennedy Krieger Institute began the stitute (KKI) branch of Johns Hopkins adolescence. Paint Lead Study. Hospital, further cemented widely felt Before 1978, a majority of houses in To compare the effectiveness of var- beliefs of the immoral actions con- the United States were covered with ious lead abatement techniques, the ducted by researchers during experi- lead paint. However, once the toxicity KKI observed five different groups. mentation with humans. of lead became more widely known, From level one to level five, the level Lead was used throughout history the use of lead paint was banned in of repair and maintenance increased, to increase paint’s durability and vi- 1978 nationwide. Baltimore was the from minimal repair and mainte- brancy. However, lead is an extremely first city to address the issue in 1951. nance (group one) to greater level of toxic substance that, when swallowed The city banned the use of lead paint repair and maintenance (group two) or inhaled frequently, can have detri- on new buildings. Despite this, prop- to more aggressive repairs (group mental effects on the human body, es- erties with lead paint still remained. three) to complete abatement of lead pecially the brain. Lead poisoning can These properties were often homes for paint (group four) and finally, no

12 Diagnosis Summer 2021 13 14 Susan La Flesche Picotte Diagnosis https://en.wikipedia.org/wiki/Susan_La_Flesche_Picotte O achieved much success inschool; women across country. the Picotte tion, Picotte standard anew set for norms and gaining acollege educa school. Byical going against gender forbacklash even applying to med inferior to men and received lots of weretime considered intellectually Women, evenwhite women, at this and received her degree in 1889. Medical of College Pennsylvania Picotte attended Women’s the crimination. negligent care due dis to racial such as woman, this received who therebecause were some people, livingeveryone on her reservation to provide proper access to medical cotte adoctor. became She wanted not discriminated against her, Pi have saved doctor been ifthe had death of woman this could who to treat woman. the Inspired by the white refused doctor who a local but only the physician available was would have most likely survived, received proper care, medical she her died. If village woman the had Picotte was achild, awoman in tive American female doctor. When Flesche Picotte first the became Na Omaha Native American, Susan La The FirstNativeAmerican Susan LaFleschePicotte: both awomanboth and an thatto fact the she was tion and adversity due vercoming discrimina Female Doctor ------58cf-580d-5ff9-a468-1b1d86ffca99.html https://journalstar.com/news/local/govt-and-politics/statue-of-la-flesche-picotte-first-native-doctor-to-find-home-on-centennial-mall/article_3c5d tients’ houses for appointments, her own. She would to pa walk attended to over 1,300people on For next the twenty-five years, she doctor within 1,350square miles. that he quit, leaving her as only the Picotteed instead of her colleague sick patients that came inrequest boarding many school. So of the inagovernment-fundedterpart worked with awhite coun male as adoctor to her reservation, she inneed.Whenthose she returned return to her reservation and help style, however, she instead chose to lived arelatively comfortable life andmedicine on Coast East the Picotte could have practiced early.year her class, but graduated she also a she not only graduated at top the of MiraBansal Summer 2021 - - - - gender or race. to care health regardless of their shouldeveryone allowed be access died, leaving amessage behind that Two years later, in1915,Picotte United inthe rallies States capital. of alcohol by leading charge the at proper hygiene and prohibition the advocated for education the of discrimination.racial Picotte also She treated patients without any firstthe one on her reservation. dream of opening her own hospital, In 1913,Picotte her life’s fulfilled care.medical from died who improperchildhood would dielike woman the from her patientsto those that so no one with her. Picotte dedicated her life her childrensometimes carrying 15 - is reproduced every 24 hours, versity became the first place to In the 1970s, Dr. Harald Zur and have proven versatile as well have HeLa cells, and now, they Hausen found HPV-18 in HeLa as extremely useful for biological are present in labs all around the cells. HPV is the most common The Mother of research. These cervical cancer world. sexually transmitted disease, and cells, named HeLa after the first In the years following, due to 80% of people will acquire it at two letters of Lacks’ name, are HeLa cells, the scientific com- some point in their life. Hausen Modern Medicine responsible for a number of the munity was able to better under- hypothesized that the virus had a Lamia Chowdhury most successful medical break- stand the effect of x-ray radiation direct link to cervical cancer. He throughs in modern history. on human health, see how space isolated different strains of HPV One of the first developments travel may affect astronauts, and concluded that HPV-16 and that stemmed from HeLa cells is develop methods to test for HPV-18 increased the risk of he is referred to as the the virtual eradication of polio. Salmonella, and for the first time developing cervical cancer. Sci- Mother of Modern Medi- In 1936, a polio epidemic spread explore how tuberculosis attacks entists have since deduced that cine, yet so few of us know through the Southeast. Unfortu- the body. Countless studies have about 92% of cancers are linked her name. She is referred nately, there were extreme racial used these cells, ranging from to the human papillomavirus. Sto as the Mother of Modern Med- disparities in the treatment of topics like lactose digestion to The HPV genome inserts itself icine, yet was not a doctor but patients with polio. The well-re- mosquito mating, and are cur- into the cell and then produces rather a patient. She is referred to sourced Warm Springs Founda- as the Mother of Modern Medi- tion in Georgia served as one of cine, yet was a poor, Black wom- the primary treatment locations an who died before the height of for white patients. On the other the Civil Rights Movement. Her hand, Black patients had little to name was Henrietta Lacks, and no access to therapeutics. This we owe her a whole lot of thanks resulted in the creation of the for the current understanding of Tuskegee Infantile Paralysis Cen- the human body and the devel- ter, dedicated to the treatment of opment of several therapeutics. Black people, which eventually In 1951, Lacks sought treat- led to the success of the polio ment for cervical cancer at vaccine. Baltimore’s John Hopkins Hospi- In order to successfully estab- https://sitn.hms.harvard.edu/flash/2020/vessels-for-collective-progress-the-use-of-hela-cells-in- covid-19-research/ tal, the only clinic that accepted lish a vaccine, it is essential to Black patients near her. Little did run trials. Scientists first chose to rently playing a large role in the a foreign protein that inactivates she know, her doctor, Dr. How- test vaccines on Rhesus monkey hunt for a cure to Parkinson’s. p53. p53 is a protein in the cell ard Jones, had taken a biopsy of cells, and analyze the number of Over 100,000 papers are based that prevents mutations and her tumor and then stored it in antibodies produced in response. in research using HeLa cells, and tumors from forming. This dis- laboratories of the hospital. Med- However, it soon became evident they have truly changed our un- covery subsequently led to de- ical researchers were astonished there was not a large enough derstanding of human health. veloping a vaccine for the virus. by the nature of these cells. Can- supply of Rhesus cells, and thus, Two of the most important According to a study published cerous cell samples had been col- researchers resorted to testing on advancements were uncovering in Lancet by Université Laval, lected before, but ceased dividing HeLa cells, which proved per- the link between the human pap- Harvard University and Cancer after a couple of days. Lacks’, fect for the job. The poliovirus illomavirus (HPV) and cervical Council New South Wales, if this however, did not stop. They are, easily infected these cells, which cancer, which won Dr. Harald vaccine is administered rapid- to this day, dividing, and thus allowed scientists to better un- Zur Hausen the Nobel Prize in ly in 78 developing countries in a sense, immortal. These cells derstand the disease’s progression Medicine in 2008, and discov- then 62 million deaths could be comprise what is known as the and how a vaccine would affect ering telomeres, which won Dr. prevented in the next 100 years. first “cell line,” a population of them. This was the first time that Elizabeth Blackburn, Dr. Carol Australia has implemented a cells that grow indefinitely in vi- the virus could be grown in a lab Greider, and Dr. Jack Szostak the strong vaccination and screening https://info.umkc.edu/womenc/2017/03/27/henrietta-lacks-and-the-hela-cells/ tro. An entire generation of cells on human cells. Tuskegee Uni- Nobel Prize in Medicine in 2009. effort and is on track to eradicate

16 Diagnosis Summer 2021 17 apoptosis (cell death) and won did. As a result of Skloot’s work, three doctors the 2009 Nobel the views of Lacks’ children were Prize in Medicine. voiced. The book commemorated While this immortal cell line Henrietta for the red-nail polish has been used extensively in loving mother that she was, and biological research and has led to painted her as much more than so many important discoveries, a biomedical resource. In 2013, there are ethical concerns that the National Institute for Health come with their usage. In 1951 (NIH) made a deal with her de- when Jones had taken a piece of scendants. Now, two members of Henrietta Lacks’ tumor, it was an her family are part of the board unconsented biopsy. Neither she to review any application to use nor her offspring knew that these HeLa cells, and all researchers cells were taken, and they did not must put the names of Lacks’ realize to what extent they had family in their acknowledgments. benefited the medical communi- The family has also been granted ty. Within a few decades, research reparations by several medical using her cells had generated research companies and private billions of dollars, yet her de- donors as well. scendants were living in poverty, The issue of HeLa cells displays many lacking health insurance, how science is never an issue never notified of what their fore- solely isolated in just a lab, but https://www.microscopyu.com/gallery-imag- mother had contributed to med- rather extends to a social issue. es/hela-cell-culture icine. It was not until 1971 when, The cells of Henrietta Lacks were cervical cancer soon. with no explanation, researchers derived without her consent, yet The fact that HeLa cells are came to collect their blood—two they have led to over a dozen sig- immortal is very unusual. For decades after the establishment nificant scientific developments, one, they are cancer cells, and as of Henrietta’s cell line, that they and are used for research in opposed to the usual 46 chromo- became aware of its existence. labs worldwide. Fortunately, the somes a human cell possesses, In 2010, Rebecca Skloot pub- scientific community has strived these cells have around 80 highly lished the New York Times to compensate her family for mutated chromosomes. Even so, bestseller, The Immortal Life of the decades they were left in the cancer cells are expected to stop Henrietta Lacks, which brought darkness. While change is grad- dividing and die eventually. HeLa attention to the ethics concern- ual, we must still grapple with cells have not, though. Research- ing HeLa cells. It was not until who gets credit for innovation ers have uncovered that this was 1991 that the Common Rule and who is left in the shadows. because of the telomerase en- was established, which dictated For now, one thing is clear: we all zyme. In a healthy human cell, that doctors must inform pa- ought to show some gratitude to telomeres, caps at the tips of all tients if their information will be Henrietta Lacks, the Mother of chromosomes, gradually shorten used for research, and patients Modern Medicine. until they can no longer divide will subsequently sign explicit any further. However, HeLa cells consent forms. This means the contain an overactive telomerase law did not require doctors to enzyme, which means that the ask for Henrietta’s permission telomeres are indefinitely replen- to use her cells in lab research. ished, making the cells immortal. This leads one to wonder how This has dramatically shaped different the course of medical https://www.microscopyu.com/gallery-images/hela-cell-culture our understanding of aging and history may have been if they

18 Diagnosis Summer 2021 19 ments, and lack of access to health- care all increase the risks of the aforementioned diseases, and there- Does Race Exist at the fore make it more likely for them to be passed on genetically. Another prevalent example of medical racism is the infant mortality rate, which is Genetic Level? two times higher in African Ameri- cans than in White Americans. How- ever, a 1992 study from the American Journal of Diseases of Children re- Myra Malik vealed that, at the same military hos- pital, infant mortality rate lowered significantly for African Americans and became much closer to the rates of White Americans. Additionally, children’s skin rash diseases, such as Kawasaki disease, are often misdiag- nosed in darker-skinned children as medical textbooks typically only use depictions on light skin. These re- sults support that the main cause of high infant mortality is not genetic or biologically race-based, it is much more dependent on access to health- care. This holds true even through adulthood, as Black Americans are less likely to be treated for pain than White Americans and receive less https://www.mcgill.ca/oss/article/health-general-science/are-you-there-race-its-me-dna pain medication. Furthermore, race has many impli- ebates of race and racism gions, and almost 50% were found Thus, in a medical sense, knowing https://sitn.hms.harvard.edu/flash/2017/science-genetics-reshaping-race-debate-21st-century/ have run through Amer- in all geographic regions. This evi- one’s geographic ancestry is much cations in society. The racial group- ican history since its con- dence demonstrates a fundamental more important than knowing one’s ing system in America has gone Asian Hate” or “Black Lives Matter” and training must eliminate teaching ception. But what is race, similarity among all people instead race. through many changes, so while are also centered around race, while false information, such as that Black biologically? How does the answer to of marked genetic differences within While race does not exist biolog- someone from Ireland would now be acknowledging that race divides are people are less sensitive or that Asian D considered as “White,” a century ago, unscientific and unfactual. While people are less likely to experience that question reframe our thinking socially constructed racial groups. ically, it certainly has real-world ef- about race? Since the five-group theory has fects in both medical and social fields. “Irish” was considered its own race. race continues to draw barriers and mental illness. As people become The typical understanding of race been proven false, why do certain Although genetic risks for medical Knowing racial groups are merely perpetuate injustice in American so- more educated on race and its rela- is composed of the “five races”: Af- ethnic groups have different pheno- conditions are determined by geo- a social construct and that they are ciety, one can both acknowledge the tion to biology, social change against rican, European, Asian, Oceania, types, like different skin and hair? graphic ancestry, treatment and prone to change, what is their use- lack of basis for race while realizing racism will subsequently arrive. and Native American. Many legal How do DNA test kits identify your preemptive care is largely based on fulness and impact in society? While its effects in the real world. While race has been proven not to systems, including the United States’, heritage? The answers lie within race. Medical racism has a long and race has no grounds in biology, its Abolishing race as a social con- exist at the genetic level, geographic use this classification in legislation. race’s more biologically useful coun- well-documented history in Ameri- firm place in American law and so- struct is neither an easy undertaking, ancestry and local populations do According to popular belief, people terpart, local populations. Studying can healthcare. African-Americans ciety has made it a nearly unshakable nor will it be fast. However, doing so affect a person’s phenotype and gen- within each of these five groups are local populations is important for are disproportionately affected by institution in the country. Therefore, is necessary to highlight the genetic otype minimally. However, medical more genetically similar to those in many reasons, such as investigating hypertension, obesity, and diabetes the lived experience of Americans in similarity among all people, effec- racism and societal prejudice still their group and more distant from specific risks for certain diseases in compared to White Americans. But, different racial groups can often have tively eliminating any scientific justi- reinforce the idea of race. It is im- those outside of it. However, a 2002 specific groups of people. For exam- it is not due to genetics, as Sub-Saha- many overlaps. For example, I can fications for racism. The first chang- portant to recognize that while race Stanford study found that only 7.4% ple, people of Sub-Saharan African ran Africans experience lower rates relate to other Asian people through es must come through education. is not scientifically real, it produces of alleles were clustered in specific or Northern European descent are of hypertension than both White and shared experiences in American History classes should teach race as consequential real-world effects in geographic regions. Over 92% of al- more at risk for cystic fibrosis—a he- African Americans. Rather, factors society, but less so through culture a social construct as opposed to a our society. leles were found in two or more re- reditary disease that clogs the lungs. such as poverty, poor living environ- or language. Movements like “Stop biological fact. Medical textbooks

20 Diagnosis Summer 2021 21 https://www.commonwealthfund.org/publications/podcast/2020/jul/transgender-americans-just-lost-health-protections-now-what the Affordable Care Act says, “health surgeries. The Governor of Arkansas, of April 2021, following Arkansas’ plans aren’t allowed to exclude transi- Asa Hutchinson, vetoed this bill, yet passing of House Bill 1570, fourteen tion-related care, and healthcare pro- the Arkansas House overturned his other states have introduced similar viders are required to treat [patients] veto in a vote of 71–24 and Senate bills that would restrict trans youths’ with respect and according to [their] vote of 25–8. Hutchinson believed access to treatments and reassign- gender identity,” transgender people that the bill would be a “vast gov- ment surgeries. are still faced with discrimination. ernment overreach,” even though he Being denied health care can have a Transgender individuals, especial- signed bills that targeted transgender severe impact on an individual’s men- ly transgender women of color, often individuals in the previous month. tal health. Jami Clare, a transgender face difficulty accessing healthcare; In response to the bill’s passing, the woman, described how after she was they are at a higher risk of develop- American Civil Liberties Union stat- told that her health insurance would ing mental health issues, addictions, ed that they are preparing litigation, not cover her hormone treatments, and sexually transmitted diseases. their executive director saying that she fell into a deep depression and 20% of Black transgender women are attempted suicide three times. Later HIV positive, compared to the gener- ‘‘[a]ttempting to block trans youth on, she and two other transgender al population –with an HIV positivity from the care they need simply people filed against two state - agen rate of 3%. Factors such as homeless- because of who they are is not only cies and Jami’s employer for discrim- ness and unemployment, which are wrong, it’s also illegal, and we will inating against transgender people more common in the trans communi- be filing a lawsuit to challenge this and explicitly excluding coverage for ty due to discrimination, impact their law in court.” services to meet their medical needs. access to healthcare. Stories like Jami’s demonstrate how For transgender individuals, it is Arkansas is the first state to ban gen- being denied healthcare can detri- more difficult to receive medical der-affirming treatments for people mentally impact someone’s life and coverage because it is more difficult under the age of 18, regardless of why it is essential that changes within to get jobs. The unemployment rate whether they have their parent’s con- the healthcare system and legislature for transgender people in the US is sent to undergo treatments. Prior to are made. three times the unemployment rate passing the bill, Arkansas had passed Discrimination’s presence in the of non-transgender people, with 15% a bill that gives doctors “the right healthcare system against transgen- Healthcare Discrimination of the transgender community report- [not to] participate in non-emergen- der people is severely detrimental to ed as unemployed, compared to the cy treatments that violate their con- their health and identity. Lawmak- 3% unemployment rate for cis-gen- science.” This law would allow doc- ers are allowing doctors to use reli- Against Transgender dered people. Homelessness among tors to turn away transgender patients gious exemptions to decide who to transgender people is significantly due to their own religious or moral treat. Furthermore, some insurance higher because many transgender in- beliefs, further adding obstacles for companies will not cover transgen- dividuals leave home at a young age, transgender people to face when try- der-related treatments. Obstacles like Individuals in the US whether by force or choice. Nearly ing to receive health treatments. As these create an environment in which two-thirds of transgender people do a transgender person will most likely Ari Borut not live in traditional housing or shel- feel unsafe or that their needs are not ters, which has more recently risen to considered within the healthcare sys- ut of the 1.6 million trans- natory behavior. Similarly, a sepa- and that, even with insurance, their 88%. This high rate of homelessness tem. They make something as routine gender individuals in the rate poll conducted by NPR reported hormonal treatments or surgeries among transgender people prevents as a doctor’s checkup a nerve-rack- US, nearly one-third of that 22% of the transgender people may not be covered. Someone who those affected from accessing routine ing experience. With an increasing them have been refused surveyed said they avoided going to is transgender may want to receive medical care. More recently, trans- number of states trying to limit youth Omedical care due to their identity. A doctors in fear of being discriminat- hormone replacement treatments or gender youth rights are being targeted trans individuals’ ability to receive 2015 survey conducted by the Na- ed against. This theme of associating have a surgical transition but cannot by legislatures across the US, limit- treatments, the future for transgender tional Center for Transgender Equal- fear with accessing healthcare is con- receive these treatments because of ing their access to treatments and sur- youths’ rights is at risk of being fur- ity (NCTE) asked over 27,000 trans- sistent among the trans community, the cost and likelihood that insurance geries. ther limited by legislatures. gender people across the US about as demonstrated by the polls and sta- will not cover the cost. Of the individ- On April 6, 2021, Arkansas passed their experience with healthcare. tistics that illustrate the health dispar- uals in the survey, a quarter of them House Bill 1570, also called the The survey reported that a quarter ities present in the United States. reported being denied coverage for “Save Adolescents From Experimen- of transgender people do not go to The NCTE survey found that one- their hormone treatments, and over tation Act,” which prohibits trans- the doctor due to the fear of being third of the participants reported half of them were denied coverage gender youth from receiving any hor- harassed or experiencing discrimi- not getting medical care due to cost for transition surgeries. Even though monal treatment or transition-related https://www.vpr.org/post/evolution-gender-affirm- ing-health-care-trans-and-nonbinary-vermonters#stream/0

22 Diagnosis Summer 2021 23 Charles Drew: Racial Advocate and Inventor of the Large-scale Bloodbank Elise Kang Charles Drew

espite the challenges of preservation. His primary project with was separated from that of whites. being a Black man in the John Scudder, a blood transfusion spe- Drew challenged these policies for be- 20th century, Charles cialist and developer of the Plasma for ing unscientific and insulting to Afri- Drew organized the first Britain program during WWII, was can Americans, resigning as director. Dlarge-scale blood bank. However, the an experimental blood bank that they Drew later became the first African blood bank was not enough to stop opened at the hospital in 1939. Drew American appointed as an examiner racist policies in his new system. returned to Howard University after under the American Board of Surgery. As a young Black man, Drew had his fellowship only to be recalled to He raised standards in Black medical limited options in medical schools. New York City in September 1940 for education and fought against the ex- Prominent schools like Harvard Uni- the Blood for Britain Project because clusion of Black students in medical versity accepted few people of color. they needed blood to treat their sol- societies. He received various awards More often, aspiring physicians of diers and civilians during the start of and honors for his work, including color attended predominantly Black World War II (WWII). nominations to the International Col- schools such as Howard University In August of 1940, New York-Pres- lege of Surgeons in 1946 and the and Meharry Medical College. While byterian Hospital alongside five other American-Soviet Committee on Sci- Howard University rejected Drew New York hospitals began gathering ence. Although Drew passed away on for his lack of college English cred- and sending plasma to Britain. As April 1, 1950, his work of resisting ra- its, Harvard accepted him under the medical director, Drew implemented cial prejudice and directly aiding thou- condition he delay his enrollment by standardized procedures and require- sands in need during WWII continues a year. In order to continue his educa- ments for blood collection, something to help and inspire people today. tion as soon as possible, he attended never done before. At the program’s McGill University Faculty of Medi- termination in 1941, Drew became cine in Montréal. assistant director for a national blood https://www.etaomegachapter.com/2016/02/ At McGill, Drew researched trans- banking system sponsored by the charles-r-drew-memorial-sculpture-dedica- fusion to treat shock with professor National Research Council and the tion/ John Beatie. After university, Drew American Red Cross. He invented hoped to complete a residency at the “bloodmobile,” a breakthrough Mayo Clinic in the US, despite the automobile equipped to collect blood fact they rarely took Black residents donations. One bloodmobile can col- since patients often refused treatment lect 100,000 pints of blood, saving from people of color. He eventually 300,000 lives over its lifetime. trained at Howard’s expanding pro- Initially, the US military denied grams for Black physicians for three blood donations from African-Ameri- years, learning from Allen O’Whipple cans in preparation for WWII. Though at New York-Presbyterian Hospital. biological blood discrepancies be- Ultimately, he earned a doctorate from tween races are nonexistent, social be- Colombia in Science in Surgery. liefs did not reflect this. The military At New York-Presbyterian Hospi- caved to racial discrimination under tal, Drew continued to study transfu- political pressure, and later, the policy sions, shock, fluid balance, and blood evolved so that Black people’s blood https://www.sciencehistory.org/historical-profile/charles-richard-drew 24 Diagnosis Summer 2021 25 many healthcare providers are un- informed about LGBTQ+ identi- ties and experiences, which means Health Disparaties many patients need to educate their doctors, a detail that straight pa- tients do not have to worry about. within the LBGTQ+ Kristen Martinez, a psychotherapist from Pacific NorthWell—a private practice that provides therapy— discussed this challenge: “If you Community have to teach your health care pro- viders about the lived experience of Zahra Motwani being trans and/or queer, that is a burden that should not be on your shoulders but often is, on top of accessing care, having resources to pay for care, and more.” From this https://www.psychologytoday.com/us/blog/all-things-lgbtq/201711/the-t-in-lgbtq https://www.digitalhealth.net/2021/03/national-call-for-innovations-to-tackle-lgbt-health-inequalities/ quote, it is clear that going to the doctor is a strenuous situation of rom discriminatory social services and culturally com- miss screenings and end up with potentially harmful interactions for However, anti-LGBTQ+ senti- stayed celibate for twelve months laws to street harass- petent providers.” Sydney Brodeur more severe conditions due to a LGBTQ+ people. Viewing the ele- ments within the medical system prior. Despite the fact that HIV/ ment to increased rates McDonald from Veritas Collabo- lack of early intervention. Even if vated rates of various diseases and are not limited to individual doc- AIDS can be found in people of all of youth homelessness, rative, a treatment center for eating they go to a physician, there is no conditions through the lens of dis- tors; there is plenty of systemic sexual orientations and all blood the LGBTQ+ community deals disorders, offered further explana- guarantee that they will receive criminatory behavior adds nuance prejudice as well. A prime exam- donations are tested for HIV/AIDS F ple of systemic homophobia is the before being administered to a pa- with oppression each day. Similar tion for these disparities: acceptable care. In a national Cen- to what could otherwise be simply inequalities are also evident within ter for American Progress survey a list of statistics. LGBTQ+ people strict restriction of blood dona- tient, this ban has persisted for de- the healthcare system, and in order “In comparison to their straight from 2017 about queer experienc- are not inherently more susceptible tions from gay and bisexual men. cades. The FDA specifically said to fully understand them, health- peers, LGBTQ+ individuals es—excluding those of transgender to illness; they are disproportion- Until an emergency change due to that they “recommended that blood care professionals and the general experience unique stressors such people—at the doctor, 8% of those ately subjected to discrimination, COVID-19, blood donations from establishments indefinitely defer public need to take social determi- as bullying, harassment, fear of surveyed reported being refused harassment, and worse treatment, gay men were not allowed at all male donors who have had sex with nants of health into consideration. rejection, internalized homopho- to be seen by a doctor, 9% said the factors that create situations that blood donation sites throughout another male.” Additionally, many Examining statistics on disease bia, body image distress, barriers doctor used abusive language with lead to adverse health outcomes. the nation unless the patient had people are hesitant to donate blood and medical conditions is the first to accessing medical and mental them, and 7% said that the doctor step in understanding the LGBTQ+ health treatment, and violence.” harassed them. The same survey community’s health challenges. As was conducted with transgender a whole, the LGBTQ+ community Obesity is more likely to affect bi- people with similar findings—29% has elevated rates of HPV (human sexual and lesbian women, and of those surveyed were refused papillomavirus) infection, heart gay and bisexual men are more care, 23% were misgendered inten- disease, substance abuse disor- likely to experience eating disor- tionally, 21% said the doctor used ders, and mental illness. 20% of ders than their straight constitu- abusive language with them, and LGBTQ+ adults smoke compared ents. LGBTQ+ people are more 29% said the doctor harassed them. to 15% of straight people, which likely to be uninsured due to un- This widespread harassment and can cause heart and lung disease. In employment and/or denied insur- medical discrimination leads to in- 2018, gay and bisexual men made ance coverage by their employers creased anxiety in LGBTQ+ people up 69% of HIV cases. Social factors due to their identity. Additionally, about visiting the doctor and often also have an impact on health out- LGBTQ+ people who do have the leads people to hide their identities comes, as stated by HealthyPeople. means to visit the doctor’s office do from their medical providers out of gov: “Elderly LGBT individuals not go as often as recommended fear. face additional barriers to health because they fear hostile healthcare Even when doctors are not open- because of isolation and a lack of officials, which means they may ly homophobic or transphobic, https://hriainstitute.org/blog/228-lgbtq-health-awareness

26 Diagnosis Summer 2021 27 gay men had been diagnosed with and it took until 1987 for the first AIDS, one in fifteen had died, and medicine Azidothymidine (AZT) 10% of the 1,600,000 men aged 25- for HIV to be released. Didanosine 44 who identified as gay had died.” (ddI) and zalcitabine (ddC), re- The lack of serious governmental verse transcriptase inhibitors, were response was a large part of why the next treatments to come out for the victim count of the epidemic HIV. Using these medicines along reached such drastic numbers, and with AZT proved to be successful the memory of this callous disre- in treating HIV, but this was still gard has become a root for medi- not a cure. In 1995, a more effec- https://healthyfuturega.org/2014/09/04/new- cal mistrust within the LGBTQ+ tive medication, HAART, a highly resources-on-lgbt-health/ community. HIV was not seen as active antiretroviral therapy, came a pressing public health issue and out, but it was prohibitively expen- because of COVID-19, causing a was regarded as a “gay plague” be- sive, preventing low-income people blood shortage in the United States. cause it was first discovered in clus- from accessing it. Given the dispro- Even with the blood shortage, ters of gay men and more prevalent portionate amount of LGBTQ+ healthy blood is still being turned in the gay male population, people people that live in poverty, this was away. Although the rule was modi- who were not a priority in the eyes a dire obstacle. The HIV/AIDS epi- fied in 2020, there is still a required of the government. The LGBTQ+ demic and response of the US gov- celibacy duration of 3 months for community as well as local activ- ernment is an example of systemic gay and bisexual men that donate ist groups protested for nationwide discrimination and how various blood, regardless of their HIV sta- treatment of HIV, but they were social factors can intersect to cre- tus, relationship status, or history ignored. President Ronald Rea- ate a massive health disparity for a of behavior because the Center for gan’s administration was known marginalized community. Disease Control is concerned about to openly downplay the severity of Health disparities in the HIV/AIDS transmission. Identi- the situation. When Reagan’s press LGBTQ+ community do not even fying as gay or bisexual is not syn- secretary Larry Speakes was asked begin to scratch the surface of what onymous with having HIV— risky in a press conference if any action the community experiences on behavior such as having unprotect- was going to be taken about the a day-to-day basis. Additionally, ed sex, having multiple partners epidemic, Speakes and everyone these disparities are not the same without STD testing, and sharing else in the room burst into laugh- for the whole community because needles when using intravenous ter, as if the thousands of victims of experiences vary along the lines drugs are the main contributors to the deadly disease were humorous. of race, class, gender, documen- HIV infection. Throughout the rest of the confer- tation status, disability, and more. ence, Speakes and the other people In attempting to understand and “Framing the risk of the disease as in the room made many jokes, and alleviate health disparities for the exclusive to gay and bisexual men Speakes at one point directly stat- LGBTQ+ community, an intersec- is a relic of long-standing dis- ed, “I haven’t heard him express tional lens is crucial. The LGBTQ+ criminatory practices against the concern,” referring to President community should not have to LGBTQ+ community and echoes Reagan. In response to this apa- struggle to obtain healthcare when the history of the HIV/AIDS thy, activist groups like ACT UP it is the homophobia of many med- epidemic and the government’s (AIDS Coalition To Unleash Pow- ical professionals and government lackluster response. “ er) put significant pressure on the officials that is barricading them government as well as the phar- from equality. The HIV/AIDS epidemic swept maceutical industry to roll out a the country from the 1970s to the treatment quicker, staging protests 2000s, disproportionately affect- despite arrests and police brutality. ing the LGBTQ+ community. The Even with these efforts, it was not British Academy’s data states, “In until 1985 that Reagan began pub- the USA, by 1995, one in nine licly speaking about the epidemic, https://www.americanprogress.org/issues/lgbtq-rights/reports/2018/03/07/447414/acas-lgbtq-nondiscrimination-regulations-prove-crucial/

28 Diagnosis Summer 2021 29 30 Carlos Juan Finlay https://en.wikipedia.org/wiki/Carlos_Finlay Diagnosis C cepted by scientific the community, been predominantlyhad Theory ac ference in1881,by Germ time which ing at International the Con Sanitary amonga disease a population. Speak ganism that transmission fuels the of mission necessitated a vector, an or concluded that pestilence’s the trans work,this Finlay and his colleagues study causes the of yellow fever. From American mission sent to Cuba to In 1879, Finlay worked with an century. mid-19th the of parts by Caribbean the ic incertain had become an virus deadly epidem first encountered yellow fever,the as trips wherethese Finlay most likely toica treat patients. It was during quently traveling around South Amer father for next the twenty years, fre to Cuba. There, Finlay workedwith his York City, but Finlay instead returned for Hispanic the community inNew Finlay to establish facility amedical Mitchell invain, to tried, convince yellow fever. to formulateTheory his hypothesis on Finlayillness. would later Germ use concept that microorganisms caused well-accepted but controversial then proponent Theory, of Germ the now physician John Mitchell, an outspoken in 1855.In Philadelphia, Finlay met son Medical inPhiladelphia College receiving degree from amedical Jeffer France and England for school before plantation in Cuba, Finlay traveled to in1833on hisBorn father’s coffee nature of yellow fever’s transmission. The ManwhoSavedMillions breaking discoveries on the ologist made who ground ban physician and epidemi arlos Juan Finlay was aCu Carlos JuanFinlay: William Bramwell ------Health inCuba to apply it through prompted policy this of USChief the from army facilities. The success of for extermination the of mosquitoes tle. To combat crisis,Finlay this called diers of died yellow fever than inbat War in1898,during more which sol army during Spanish-American the Finlay worked as a doctor US in the recognized.would fully be Finlay’s death that his achievements time, and it would not until be after work was largely discredited at the However, disease. the Finlay’s vaccine immunity from future infections of of yellow fever, providing also while produced amuch more version mild single inoculation from a mosquito hypothesis. Finlay found also that a fever shortly after, validating Finlay’s of volunteers these contracted yellow same mosquitoes to volunteers. Most fever patients. He those exposed then captivity to them yellow and exposed colony of Aedes mosquitoes in aegypti iments later that year. He oversaw a his theory, Finlay exper ran several vectorthis was mosquitoes. To prove Finlay convinced audience the that https://www.cubanculturalcenter.org/events/2020/04/personalidades-destacadas-en-la-medicina-cubana/ Summer 2021 - - - - lives on today. cause of yellow fever, and his legacy through adversity in discovering the ic experimentation and persevered less lives through his daring scientif na. Carlos Juan Finlay saved count inHavaIn peacefully 1915, he died for aNobel Prize inMedicine in1905. laureate Ronald Ross nominated him ter of Health in 1902, and Nobel the Tomás Palma, proclaimed himMinis formed newly the Republic of Cuba, Later inFinlay’s life, President the of ly it ravages still some areas of Africa. Americas, thoughin the unfortunate cines, today, yellow rare fever is very quito extermination and policies vac plummeted. As aresult of mos both reduced, and deaths from disease the scope The of yellow greatlyfever was including Panama and Caribbean. the out other areas America, inCentral 31 ------

for the lack of consent and a pledge to never let any similar event occur in the Inhumanity in the Guatemala future. Secretary of State Hillary Clin- ton called Guatemalan President Álva- ro Colom to explain what had actually happened from 1946 to 1948. A few Syphilis Experiments days later President Obama also called to give a personal apology. While the US government was appropriate in ac- Athena Rem knowledging this grave error, it took no further action. In 2012, a lawsuit against the gov- ernment by the survivors of the exper- iment resulted in dismissal when the court deemed the case more appropri- ate for other more political branches of the government. Despite this lack of legal acknowledgment, just one day later, the Department of Health and Human Services issued just under $2 million for Guatemala to work on STD prevention and conducted a study on the ethics of these experiments. In ad- dition, the Commission for the Study of Bioethical Issues published two studies in September 2011, both of which condemned the US for its lack http://www.slate.com/articles/health_and_science/cover_story/2017/02/guatemala_syphilis_experiments_worse_than_tuskegee.html of ethics in the experiments. Guatema- la also conducted its own study, which he Guatemala Syphilis Ex- ers actually knew very little about how died and only 700 received treatment. found racism present throughout the periments were blatant vio- the drugs work in treating STDs. This The details of what happened during study, and thus the Guatemalan gov- lations of human rights and curiosity and confusion prompted sci- the experiment and how many people ernment declared the experiments a a clear crime against human- entists to research about treatment, in- were infected and treated were un- crime against humanity. Notably, this http://www.slate.com/articles/health_and_science/cover_story/2017/02/ Tity. The experiments (1946–1948) in- cluding the range of STDs penicillin known until after Cutler’s death when report also demanded reimbursement guatemala_syphilis_experiments_worse_than_tuskegee.html volved approximately 5,500 uncon- could treat, whether or not it actually medical historian Susan Reverby dis- for the victims, however, the US gov- senting and uninformed Guatemalans treats the disease rather than just the covered the files in 2010. The lack of ernment largely ignored this report. 74 participants. The Tuskegee victims Syphilis Experiments. These exper- and infected 1,300 of them with sex- symptoms, and how effective it is. publication of the experiments indi- There are very few victims left, yet and their children were given a total of iments go against the medical stan- ually transmitted disease (STD) bac- John Cutler sought to answer these cates that the experiment failed to an- they still have not received treatment, $10 million in monetary reparations, dard our country has cultivated over teria in an attempt to test how well a questions by starting the Guatemala swer any of the questions people had nor have they and their families re- yet the Terre Haute and Guatema- time, yet there is a lack of discussion variety of medicines treat common Syphilis Experiments. Cutler was an about penicillin as an STD treatment. ceived financial compensation. la victims were given nothing. Terre of these events. Even though there is STDs. Specifically, soldiers in World American scientist who moved the The reason this inhumanity ran ram- Unfortunately, this was not the only Haute, Tuskegee, and the Guatemala some media coverage, victims and War II (WWII) used penicillin to treat study to Guatemala to avoid stricter pant for over half a century was that experiment of its kind. The Guatema- Syphilis Experiments show a trend their families are still without aid and gonorrhea and syphilis, but it was still ethics laws in the United States. In it was performed privately until Susan la Syphilis Experiments were inspired of racism and inhumanity throughout there have been no consequences for unclear how well it worked. Not only these experiments, unconsenting sub- Reverby uncovered the story while by the Terre Haute study (1943–1944), medical history because they targeted those who let the experiments happen. were these experiments inhumane, but jects contracted STDs in three ways: searching Cutler’s files after his death which also targeted the containment of and took advantage of people of color. The unchecked racism and inhumani- they also did not produce any of the using a vaccine-like prick with a nee- in 2003. She was shocked by what she STDs, specifically gonorrhea, but end- The Guatemalan experiments demon- ty of the Guatemala Syphilis Experi- desired results. dle, taking an oral pill, or engaging found, taking note of the failure to get ed shortly after it began due to the in- strate another atrocity, with lessened ments cannot be forgotten. The purpose of the Guatemala in sexual activities with prostitutes consent and properly explain to the ability to infect the subjects adequate- government action and a lack of any Syphilis Experiments was to deal with carrying the STD. After infection, the subjects what their participation would ly. Cutler played a role in this study monetary reparations, in addition to the crisis of the spread of STDs from experimenters tried various medicines entail, including becoming infected. too, as well as in the Tuskegee study of the inhumane treatment of people. prostitutes to soldiers during WWII. to see how the subjects would react Little happened regarding the experi- 1932–1972, which targeted 600 Afri- Today, laws and government agen- The use of penicillin grew in popular- to determine the exact role the drugs ments until 2010, when the US gov- can American males to see the impact cies ensure that medical experiments ity to target the symptoms of common play in treating STDs. Throughout ernment openly released the details of of untreated syphilis. The Tuskegee are conducted in a more ethical man- STDs, mainly syphilis, among sol- the entirety of the experiments, out of the experiment. This prompted Presi- study ended with the death of all but ner. Clearly, this standard was not the diers. Despite this “quick fix,” the us- the 1,300 infected, at least 83 people dent Obama to issue a public apology case during the time of the Guatemala 32 Diagnosis Summer 2021 33 Interview with Chidi Akusobi ‘08 Interviewed by Lauren Ho

hidi Akusobi was born in Brown. Why must health profes- they take shortcuts, and they’re Nigeria and grew up in The sionals confront police violence not fully comprehensive in how Bronx, NY. He participat- and institutionalized racism, they’re analyzing a patient. Over Ced in Prep for Prep and graduated and how does institutionalized time, that can lead to disparities. from Horace Mann, Class of 2008. racism manifest itself in hospi- Sometimes the system can also He next attended Yale University tals and medical schools? lead people to have these dispar- where he majored in Biology and Dr. Chidi Akusobi: The reason ities. For instance, a lot of black graduated Phi Beta Kappa. After why healthcare professionals and brown patients work as es- Yale, Dr. Akusobi was awarded a must be confronted is because sential workers in jobs in which Gates-Cambridge scholarship to people are disproportionately dy- they cannot sit at home and pursue an MPhil in Biochemis- ing from COVID and other health work on their computers, or they try from the University of Cam- issues that affect black and brown live in places where they have bridge in 2013. Currently, Chidi is patients. If you go into healthcare lots of family members because a seventh-year MD-PhD student in order to alleviate the suffering it’s cheaper. They cannot keep at Harvard Medical School. He of all mankind, and you see that themselves as safe as white-col- completed his PhD in infectious one group is disproportionately lar workers, for instance. In that disease in June 2020 and is cur- suffering, not because of any fault case, you’re going to be more ex- rently finishing his MD studies. As of their own, but because of the posed to the virus. And then if a future physician-scientist, Chidi systems that society has built to that’s the case, you’re going to see hopes to combine clinical practice, put them in situations that make more infection, and then more teaching, and conducting pioneer- them sicker, then it’s up to us to death. So that’s a systemic issue. ing research that contributes to the rectify that injustice. As health- Another issue is housing. Many better treatment of infectious dis- care professionals who care about black and brown people live in eases. improving the human condition, neighborhoods that are incredi- this is on us to step up and say, bly dense, places that have lots of “This is not right.” And we have public housing. So you see these Lauren Ho: You have advocated the tools to improve people’s lives apartment buildings that have for a variety of issues, especially in this regard. For me, it’s a mor- 50 families on one floor, which those dealing with racial equal- al issue. When it comes to how it is a very different COVID risk ity and diversity in medicine. manifests in a hospital, it mani- than an apartment building that As a member of WhiteCoat- fests in a lot of ways; sometimes has four families on one floor, 4BlackLives, you helped orga- it’s subtle and implicit, where or the suburbs. The pandem- nize the WhiteCoat4BlackLives people aren’t actively thinking ic also has affected genders very movement on Harvard Medical that they will provide someone differently, as women are more School’s campus to commem- subpar care, but just because likely to be working in essential orate Eric Garner and Michael of how they were acculturated, jobs, like nurses or teachers or https://twitter.com/chidiakusobi/status/1311764560714575873 34 Diagnosis Summer 2021 35 in supermarkets, and thus have are genetic diseases that are more https://whitecoats4blacklives.org/about/ a Black or brown child in Amer- is good. Finally, by the time been disproportionately affected prevalent in certain ethnicities ica, and you think about what it you get to professional school, by the economic impacts of this than others. So if a white child means to be a scientist and who schools are now really good at pandemic. That’s not to say that comes in and has many cases of is a scientist, when you look at providing mentors and financial every physician that sees a black pneumonia and mucus in their popular media, there are not a lot resources to retain students. It’s or brown patient or sees a female lungs, you’re more likely to test of people that look like you, and a complex issue, but it goes from patient is actively being racist, for cystic fibrosis than if it was you can’t be what you can’t see. elementary school and role mod- but that they are working in a a child from South America. It’s The only reason I felt comfortable els, to providing good schooling, system that has placed people in important to have epidemiolog- going down this path is because all the way up to retaining people situations that are more danger- ical data when thinking about when I was a freshman in college, in graduate school. ous, where they’re more exposed these diseases. It’s also important my mentor was an older gradu- to the virus. Sometimes, patients for doctors to not automatically ate student, a Black man who had This is Part 2 of a two-part in- also get worse care because of assume that one symptom plus a an MD and PhD. And it sounds terview with Dr. Akusobi. Part 1, doctors’ implicit biases too, such certain race equals a certain dis- weird to say, but it clicked in my which discussed Akusobi’s back- as where doctors may think that ease, because this also happens mind that, “Oh, I can be an MD- ground as well as his day-to-day black patients are less likely to frequently. Doctors miss diag- PhD.” That internal belief that you life, among other topics, was re- feel pain. Doctors also can be less nosing asthma in an Asian child can do something is huge. An- leased in Issue 2. likely to understand a patient’s because they think asthma is other issue is the way the Amer- symptoms or what they’re say- only a disease you see in Latino ican education system is set up. ing because of a cultural barrier and Black populations from ur- If you look at where the majority or language barrier. So this is an ban areas. The repercussions of of Black and brown students are area of study that is fascinating, having such narrow thinking can getting educated in America, it’s but also has real impacts on peo- actually be devastating, which is mainly in subpar public schools. ple’s lives. Thankfully, more and why it’s important for doctors to If you’re not as well prepared for more physicians, young students, have epidemiological data. Those college, especially when it comes and trainees are understanding are examples that are very con- to science and math, then you’re how this interfaces with their crete and are based on lots of less likely to do science and math care and their decision-making. data, but unfortunately, what also in college. And when you get to happens in medicine is that some human beings are far more alike barriers? college, there’s a whole host of LH: How is race utilized in med- race-based information was built than they are different. To me, it’s CA: This is something that’s near reasons that people drop out of icine? on faulty data or built on biases only the genetic diseases where and dear to my heart. There’s a lot the pipeline. Colleges are trying CA: I love that question because from decades past that now get we know that there are clear as- of work that people are doing to to do a better job of providing it’s something you learn in med- propagated over time. For exam- sociations with ethnicities. Oth- increase the amount of Black and mentoring services, first-genera- ical school and have to deal with ple, there’s this myth that black erwise, it’s very important to be brown scientists in America, and tion services, programs that pro- in medicine all the time. So yes, patients’ kidney filtration rate is open to diseases being part of any many are focusing on getting peo- vide welcoming spaces. Creating you do consider [race] when somehow different than white population. ple into medical school or other spaces where people feel more there’s epidemiological data for patients’. So because of that, the professional schools, but by that welcomed is important. Also, it’s it. There are certain diseases that way that drugs are dosed in black LH: You have a leadership role time you actually miss so many important to provide resources are more prevalent in certain eth- populations with kidney disease at the Student National Medical people who dropped out of the to make it easier to go into pro- nicities than others. For instance, in comparison to white people Association, which seeks to en- pipeline much earlier. So in order fessions like medicine, which re- cystic fibrosis is more common with kidney disease is different, courage minority involvement to tackle this problem and actual- quire a big upfront investment. in White populations, Kawasa- even though there are many stud- in the medical field. What bar- ly solve it, you have to be thinking For many, taking another job ki disease is more common in ies and papers finding that there riers are currently in place pre- about the pipeline from elemen- makes more sense financially. Asian and Asian American pop- is no difference in the kidney venting minorities from getting tary school all the way to college. Everything from providing fee ulations, and sickle cell disease is function of Black people versus involved in medicine, and what Some of the barriers that come waivers to people’s applications more common in Black and Afri- White people. So it’s important can healthcare and learning in- up include the lack of role mod- to better loan programs to entice can American populations. There to also question the data, because stitutions do to take down these els and representation. If you are people to go to graduate schools

36 Diagnosis Summer 2021 37 39 Gao Yaojie Summer 2021 https://www.vitalvoices.org/people/dr-gao-yaojie/ - retired from medical practice and retired from medical practice and America. She uses all her lives in award money to buy and donate her books to continue spreading awareness. She has spoken about AIDS publicly and has said that, I can only treat at “As a doctor, most dozens of patients a day— AIDS preven but as an activist of tion, every day I can educate at least hundreds of people so as to Yaojie save even more lives.” Gao is honored and respected for her continuous activism and nonstop aid towards those in need, even when her work demanded intense personal sacrifice. oned for three years for simply oned for three years her. being related to in After her husband died 2006, Gao left China in 2009 so she could write her memoir and several other books about the Gao is epidemic in China. Now, - - - Diagnosis https://hollywoodhealthandsociety.org/sites/default/files/attachments/newsletter/reel_winter2014.pdf Furthermore, her son was impris adequate safety measures were through opening, spreading HIV transfusions. Gao was harassed, stalked, and surveilled because she refused to be silent about this public health crisis. She was also placed on house arrest in her home in Zhengzhou on February 1, 2007 so she would not be able to go to the US and accept the Global for her work. Award Leadership officials who wanted to ignore the officials who wanted to ignore the epidemic, and her insistence on the truth was also at odds with the of profiteering behavior of health backlash the to contributing ficials, Liu Guanxi, the head against her. of the Henan Health Department, wanted farmers to sell their blood because the plasma market was expanding. Blood stations without However, her work was un However, government popular among many Zahra Motwani Zahra ------HIV/AIDS Activist Activist HIV/AIDS Injustice in her 90s in her Injustice Gao Yaojie: Still Fighting Fighting Still Yaojie: Gao ao Yaojie, previously a previously Yaojie, ao now a gynecologist, is AIDS activist famous who works to spread

38 were an important factor contrib uting to the spread. sively through sexual activity, but sively through sexual activity, Gao convinced the vice premier, blood transfusions that Yi, Wu Many people believed the epidem ic in China was spreading exclu villages with farmers suffering villages with farmers suffering and gave them medi from HIV AIDS. cine and information about 70-year-old. Additionally, she used Additionally, 70-year-old. her own money from her pension to spread awareness. She went to AIDS program, worked to edu AIDS as a cate, prevent, and treat getting infected with HIV. The epidemic was spreading and Gao, through her new rapidly, blood bank that was distributing blood throughout the area, mean ing that hundreds of people were She also found that the blood the She also found that the blood the patient had received came from a that the patient had gotten sick from contaminated blood from a blood transfusion during surgery. treated a woman who had HIV in treated a woman who had HIV 1996, but at the time did not know Gao found the patient had HIV. HIV epidemic in Zhengzhou, HIV China, in the Henan province. She awareness about and treat HIV/ AIDS. Gao first encountered the G https://healthcare.utah.edu/healthfeed/postings/2021/01/vaccine-old- Health. In Connecticut, the United lapses in their healthcare when they er-adults.php Way of Connecticut, a charity de- need it most. These are the same peo- The Elderly and COVID-19 voted to the health needs of its state’s ple who are left out of other services, citizens, set up a vaccine appointment such as online grocery shopping. Su- assistance line for those who are un- san Nash of the Stanford Center on Vaccines: Prioritized Yet able to use a computer or website. But Longevity said that this entire popu- still, these alternative methods are not lation has been left behind as so many flawless; when vaccines first became parts of society move online. available, they were getting massive The need for speed, efficiency, and Vulnerable amounts of calls each day. safety during the pandemic has dis- AARP, a non-profit organization proportionately affected the elderly Malcolm Furman dedicated to caring for those over the population. Whether it be in vaccine age of 50, outlined steps that lawmak- appointments, wellness visits, or gen- hen it comes to vac- vaccines, with the elderly being a top healthcare system. ers can take to lessen the burden on eral social services, complex websites cine appointments, priority. Wallace says there is a false For example, one family in Stevens senior citizens when making appoint- and ineffective methods of care have ments for vaccines. They suggest that unfortunately failed the senior citi- the most vulnerable sense of accomplishment when it Point, Wisconsin tried to sign up for Mary Christian made an appointment states make toll-free 800 numbers zens of America. Everyday people, es- face the most strug- comes to these sites. “We can easily vaccinations, but unfortunately, faced online; however, the vaccination loca- that are staffed with qualified repre- pecially those of color, are struggling gles and barriers. As COVID-19 vac- lose sight of how thin people’s compe- difficulties. Alan and Vicki Potter tion is at least an hour away from her W sentatives, to allow people to sched- and need help in the wake of new cines roll out, senior citizens across tencies are,” Wallace said. “We put ev- are both 73; Alan has a neuromus- home. Mary has diabetes and lives in ule appointments, and ensure that all vaccine rollouts and developments. the country are unable to sign up erything on the website and can say, cular disorder and Vicki has multi- a rural area where 77.5% of residents customers can find these numbers But still, the advances that have been for vaccine appointments because of great; we’re done. While it is a miracle ple myeloma. Since they don’t have a are Black and half of the population and where the sites are located. In the made in vaccine distribution, such as complicated appointment websites. that vaccines are available about one computer or smartphone, they were lives below the poverty line. Unfortu- letter, they explained that the demand walk-in vaccination sites, suggest a Not only are these websites hard to year after the first COVID-19 case in unable to schedule an appointment nately, in conjunction with her race for vaccines far exceeds the supply. brighter future for the country. navigate, but appointments are re- the US, they do no good if the people through their state’s website. “We’re and location of residence, Mary’s age During the week of January 4th, more served within minutes of becoming who need them most don’t have ac- old-school. We’ve got a landline and made the travel to her appointment than one million people went on the available. Reserving an appointment cess to them.” that’s it. It’s very frustrating,” Alan very difficult. appointment website, while only on a complicated website can be dif- According to the US Census Bu- said. However, some states have im- 6,000 appointments were scheduled. ficult, if not impossible, for someone reau, 9.5 million seniors lack inter- Cindy Piotrowski, Director of the plemented other ways for people to In addition to vaccine appointments, unfamiliar with modern-day technol- net access. Elderly adults of color are Aging & Disability Resource Cen- schedule appointments. For exam- the elderly have been having issues ogy. particularly impacted by this, with ter of Portage County in Wisconsin, ple, in Vermont, 12,000 of 26,500 ap- scheduling and doing telehealth and Part of the problem stems from un- more than 25% of Black people, 21% said the disparities and ageism that pointments for residents age 75 and online doctor visits. Again, the people derfunded health departments, said of Hispanic people, and 28% of Na- the elderly face is more pronounced up have been made through a new who need these health services most Charles Wallace, an associate profes- tive Americans over the age of 65 not now than ever before. Especially in phone-call system. In Minnesota, se- during the pandemic are having the sor of computer science at Michigan having access to the internet. This is rural areas where internet access can, nior citizens who only have a landline hardest time. Those without internet Technological University. Especially substantially higher than the 15.5% of at times, not be reliable, navigating a and have registered for a vaccine will – who tend to be low income and non- in rural areas, health departments white seniors that don’t. These figures website and scheduling an appoint- be randomly selected for an appoint- white – are less likely to schedule and have been scrambling to set up work- further show the inequalities that ex- ment can be close to impossible. In ment from a vaccination registry, ac- attend virtual doctor visits, leading to ing systems to equitably distribute ist in our society that seep into the McComb, Mississippi, 71-year-old cording to the state Department of

https://covid19vaccine.health.ny.gov/frequently-asked-questions-0

40 Diagnosis Summer 2021 41 The Lack of Diversity in Genetic Testing: A Cause for Misdiagnosis

Sammi Strasser https://weedmaps.com/news/2019/03/dna-may-show-how-marijuanas-effects-on-consumers-are-all-in-the-genes/

enetic testing is a medi- al stress, but it has led to people mak- an increasingly prominent part of ear- linked to the illness when they were for a certain disease. In previous ge- ing a specific population of interest. cal tool that helps identify ing decisions not to have children in ly diagnosis, doctors have used genetic actually a result of racial differenc- nome-wide association studies, scien- In this scenario, race needed to be whether one is at high risk order to avoid passing genetic diseases testing to identify whether or not fam- es between the groups and nothing tists identified “more than 100 single specified and singled out in analy- for a particular disease. down, quitting professional sports to ily members of those previously diag- to do with HCM. Unfortunately, the nucleotide polymorphisms (SNPs—a sis to uncover mutations linked to GBy comparing specific mutations or avoid health risks, and losing some of nosed have the disease. However, the lack of diversity in these trials caused type of genetic mutation that occurs the disease. By doing so there was no abnormalities in a sick population’s the most important parts of their lives, studies done to identify HCM-linked misdiagnosis in a large population of in a single nucleotide) associated with concern of race-specific genetic mu- genes to a healthy control group, sci- like hobbies or jobs. mutations avoided considering race in African Americans. Dr. Isaac Kohane prostate cancer.” However, these stud- tations causing misdiagnosis. With entists can reveal whether one is like- The misdiagnosis of hypertrophic their trials. Their inability to consider led the study revealing how the iden- ies were primarily conducted with HCM, those who analyzed the issues ly to develop the disease later in life. cardiomyopathy (HCM) in African the significance of race in genetic mu- tified mutations in African American white men. In this case, the knowledge with the research found that a more It has been found that certain genetic American patients, for example, re- tations and possible links to disease people that were said to lead to HCM of links to the disease was limited to diverse trial would have avoided the disorders, as well as specific mutations, veals the prejudice in the world of caused misdiagnosis. were actually harmless. He explained one specific race, rather than a split glaring error. So, when considering are more likely to occur among people medical testing. HCM is a thickening Researchers around the world have that the researchers could have avoid- between the experimental and con- diversity in genetic trials, the specific whose ancestors come from particular of the heart wall that causes abnor- conducted studies to help determine ed the entire problem by adding even trol groups like with HCM. Hence, diseases and mutations can help deter- geographic areas. Shared genes passed mal rhythms and sometimes sudden the specific mutations that cause four or five African Americans to the when Chinese males’ genetic risk mine the types of testing that need to down through certain ethnic groups death. As constant intensive activity HCM. In the studies most prominent- control group which was somewhere scores were assessed, these mutations be conducted. The population, specif- could contain mutations, resulting in can trigger arrhythmias, HCM is es- ly used by doctors worldwide, the re- between 85–100 people (considerably were mostly absent. So, doctors would ically whether the location the testing particular genetic disorders appearing pecially dangerous for athletes, lead- searchers compared healthy controls small). However, by not diversifying identify them as less likely to develop is happening in is more diverse or con- more frequently among them. How- ing to a much higher chance of death. to people with diagnosed HCM. The their control group, doctors today who prostate cancer when they actually had tains a larger population of one race, is ever, it is essential to remember that Affecting one in 500 people in the healthy comparison group was al- have yet to be informed about these different mutations that could have led also a large contributing factor to the these disorders can occur in anyone. United States, the disease is constant- most entirely White, whereas some of incorrect genetic links have contin- to identification of the same problem. types of trials. It is most important to So, when it comes to understanding ly looked out for by doctors and has the people in the studies with HCM ued to misdiagnose African American Thus, when these scientists compared acknowledge race in each specific sce- these mutations and disorders, we must been linked to over 1,000 genetic mu- had African ancestry. This resulted in patients with the mutations linked to a genetic risk score calculated in terms nario whether concerning a diverse consider these questions: does the lack tations. With genetic testing becoming some gene variants being flagged as the disease, causing both emotional of an East-Asian specific encounter group of trial subjects or one specific of diversity in medical research cause and economic distress among families. with prostate cancer compared to one group of people, and understand how misdiagnosis of certain minorities? In the future, it is crucial to ensure all that did not take race or geological it could and does affect certain dis- Is there a lack of diversity in medical genetic trials not only consider race background into account, they found ease-causing genes. research in the first place? The answer when evaluating certain genetic condi- that a race-specific genetic risk score is yes. Unfortunately, through multi- tions and indications, but also encour- is more accurate than a non-race-spe- ple studies in genetic research, such age diversity during the trial process to cific genetic risk score for assessing as analyzing the mutations linked to guarantee an outcome that focuses on one’s risk of developing prostate can- hypertrophic cardiomyopathy, the ex- the individual with the condition. cer. Calculating a more accurate ge- perimental groups whose genetic mu- However, this does not mean that netic risk score helps families organize tations were analyzed have not been race is not a contributing factor to for potential diseases and understand diverse enough to get an accurate re- genetic risk. For example, scientists the risks of passing diseases onto their sult. Certain genes linked to race were found that race-specific risk scores children. Hence, only SNPs that have determined by researchers to be muta- were more accurate in determining been previously confirmed in a specif- tions linked to high-risk diseases. Not one’s risk for prostate cancer when ic racial group should be used when only has this caused extreme emotion- https://www.mobihealthnews.com/content/how-improve-adoption-genetic-testing-provider-workflow?page=0%2C1 calculating one’s genetic risk score calculating genetic risk score concern-

42 Diagnosis Summer 2021 43 https://www.gethealthystayhealthy.com/articles/women-and-minorities-in-clinical-trials-1 ers to include women and other es in the United States that include adequate care because of the gender minorities in their trials. In 1988, the demographics for all clinical trials bias in clinical trials. FDA recommended that researchers combined, so it is almost impossible Additionally, women and men specify and examine the effectiveness to see how the inclusion of women respond differently to the same and safety of drugs especially within is implemented today. Although medications, so having a lack of data minority groups, such as by examin- women’s exclusion is now prohibited, on the different reactions means it is ing the results by gender, which was past involvement in clinical trials still harder for women to be treated and outlined in a Non-Disclosure Agree- causes them to be left out of studies properly diagnosed. The inclusion ment. or force them to participate in small- of women in non-gender-specific In 1989, the NIH announced that er amounts. Many diseases affect clinical trials would allow for differ- scientists should include all genders men and women differently, so only ences in the treatment. Once the data and races in their trials, and any researching the disease in one gender is analyzed and scientists understand exclusions had to be justified due would create a lack of results for the varied reactions women and men to ethical or scientific reasoning. treating the other gender, meaning have to medications, drugs can be However, in 1990, the Government fewer successful cures for women. adjusted to fit both genders’ needs. Accountability Office investigated Women are more likely to get sev- Those differences would help provide the implementation of these new eral types of cancers such as breast adequate care for everyone. Today, policies and found that women and cancer, and women who smoke are the FDA Office of Women’s Health minorities were still excluded in more likely to get lung cancer when (OWH) is conducting studies on actual studies. Even when trials in- compared to men who smoke. Wom- and advocating for the inclusion of The Consequences of Historical cluded a diverse group, most results en also show different symptoms for women in clinical trials. Even with were analyzed together instead of by some diseases such as cardiovascular the work the OWH is doing, the gender, thus rendering it difficult to disease and sexually transmitted in- exclusion of women in clinical trials Female Exclusion from examine the differences in reactions fections. This means that there is no historically still affects the clinical between males and females. Finally, uniform way to diagnose and treat studies done today and creates unfair in 1993, it became law to require the those types of cancers. If testing were advantages, such as greater access to Clinical Trials inclusion of women and minorities to only be done on men, there would proper medication and treatments in clinical trials. be a medication that might suit for men in the health care system. Dasha Dolgonos Today, many more women are them and be expected to help cure or decades, men’s health was banned women of child-bearing age HIV drugs. Women believed that included in clinical studies, but there cancer in women. Still, since women prioritized over women’s from participating in early stages of they should have the right to choose are few studies done as to whether react differently to the disease, the health by the government, clinical trials. In the 1970s, drugs whether they wanted to participate women and men are equally included treatment might not work for them, demonstrated through like thalidomide did not undergo in clinical trials and believed it was in those trials. There are no databas- and those women would not receive Fwomen’s exclusion in clinical stud- preclinical testing for reproductive unethical for the FDA to decide on ies. Since the 1970s, women have toxicology; instead, the FDA believed their behalf. Furthermore, many been excluded from clinical trials women should be excluded from argued that the ban not only prevent- out of fear that the drugs tested those clinical trials. In addition, it ed women from participating in the could potentially harm any children was unknown whether drugs affected earliest stages of drug testing, it also they would have in the future. This women differently than men, and made it more difficult for a woman to exclusion created biased results that this ban furthered the lack of data to enter the clinical trial at a later stage. affected the success of the drugs discover the similarities and differ- Additionally, even though women and treatments being tested once ences in those effects. Thus, since the with life-threatening diseases were they were out on the market. In the ban led to a lack of drug testing on exempt from the ban, they were still 1970s, very few women worked in women, drugs were only considered excluded in most cases and could not medicine and science, and women’s effective on men without knowing find adequate medication for those healthcare needs were not a priority how the female body would react. In diseases. in the medical research fields. In addition to simply not serving their In 1985, the Public Health Service 1977, after clinical studies on thalid- intended purpose, the drugs also had Task Force recommended doing omide—a drug that was supposed to harmful side effects in women that long-term research on how different be used to cure morning sickness in were not noticeable in men. factors such as behavior and biology pregnant women—caused congenital The exclusion led many women affect women’s health. A year later, disabilities in the children of wom- to fight for their rights to partici- the National Institutes of Health https://www.google.com/search?q=clinical%20trials&tbm=isch&hl=en&tbs=rimg:CUACFRyNAyHDYZhT5GncD5aT&rlz=1C5CHFA_enUS828US828&sa=X- en who took those drugs, the FDA pate in clinical studies, such as for (NIH) started encouraging research- &ved=0CBsQuIIBahcKEwjI-qzm8e3wAhUAAAAAHQAAAAAQBg&biw=1138&bih=717#imgrc=lmPhujfYXM4dzM

44 Diagnosis Summer 2021 45 46 Mary Putnam Jacobi https://www.britannica.com/biography/Mary-Putnam-Jacobi Diagnosis B later graduated from École the established universities could. She samethe level of education that women’s colleges didnot provide for co-education, that believing her. She passionately advocated Jacobi never lether gender restrain However, throughout her career, sidering that she was awoman. cine), aventure unheard of, con de Médecine of School (the Medi sought admission into École the knowledge. Subsequently, she did not satiate her hunger for Studies) at University the of Paris of School Advanced Practical (the attended at École the Pratique clinics, lectures, and classes she Universitythe of Paris. The many training her medical atto further Children, Jacobi ventured to Paris England Hospital for Women and ly working inBoston at New the would not end there. After brief However, her eagerness to learn Medical of College Pennsylvania). go on known to be as Woman’s the there college in1864(the would Pennsylvania, receiving her MD and Female the Medical of College Newthe York of College Pharmacy career inmedicine. She studied at on timely the path to pursue a Jacobi’s passion for her set science era. Growing up inNew York, woman doctors of her one of most the premier PutnamMary Jacobi was orn on August 31,1842, The RevolutionaryLifeof Mary PutnamJacobi - - - Charity Chu at St. the Mark’s Hospital. ously working as avisiting doctor simultane papers,medical while Infirmary, authoring over 100 a children’s ward at New the York graduate Medical School, opening atdiseases New the York Post Mount Sinai Hospital, lecturing on children’s at the service dispensary years to follow, such as opening a numerous achievements inthe City. She went on to accomplish Medical Association of New York on known to be as Women’s the Women would in1872,which go ment of Medical Education of Associationthe for Advance the As aresult, she organized and led to pursue acareer inmedicine. cation available to women aiming to Jacobi lack the of quality edu knowledge, it was made apparent to achieve something as simple as Through her strenuousjourney to raise educational standards. lecturer and aprofessor, she strove for Women and Children. As a ofCollege New York Infirmary and teach at Woman’s the Medical icine to open her own practice her vastused knowledge of med returned to New York. There, she In 1871,Jacobi left Paris and her. forced school’s the to faculty admit ministerthe of education, which receive directive from asecured persistent effortsallowed her to de Médecine in1871,after her Summer 2021 - - - - - male-doctor/ https://massivesci.com/articles/mary-putnam-jacobi-sufragette-fe women as physicians. and createfalsehoods aspace for Jacobi worked to disprove these place for field, medical inthe them women and ill that there was no educationmedical would make it was commonly that believed medicine. where atime During lable impression world inthe of Putnam Jacobi made an incalcu research, and Mary activism, to world literary the of medicine, City. With her many contributions of 63,Jacobi inNew died York OnJune 1906,at 10th, age the - - 47 than the mortality rate for Caucasians. ucation, inadequate healthcare, and answer as to why this disparity is oc- According to a study conducted by lack of melanoma knowledge. These curring. Peoples’ lack of education on oncologist Janice N. Cormier of the factors all contribute to a delayed diag- the issues makes it difficult to solve the Rising Mortality Rates for University of Texas titled “Ethnic Dif- nosis, which raises the mortality rate higher mortality rates of melanoma in ferences Among Patients With Cuta- by creating a higher risk of metastasis, minority groups. neous Melanoma,” where Surveillance, which is when cancer spreads to other As more research is conducted, it Epidemiology, and End Result (SEER) parts of the body, or advanced stag- is evident that the healthcare system African Americans, data was used to study melanoma sur- es of cancer where it is much harder fails minority groups in protecting, vival rates, the researchers found that to treat. It is necessary that informa- detecting, and treating melanoma there was a five-year melanoma sur- tion about melanoma becomes more while favoring non-minority counter- vival rate of 89.6% in Caucasians with widely available to both medical pro- parts. While it may not be easy, action Asians, and Hispanics only a 72.2%–81.1% survival rate in fessionals and the general population must be taken to ensure that the gaps other minority groups. Furthermore, so that the disproportionate mortality between different races are closed, the study showed that minority groups rate of melanoma in minorities can be which begins at the health level, and have a much higher chance of dis- lowered. more specifically, the health care sys- Diagnosed with Melanoma ease-specific mortality, with a rate of Along with the diagnosis, mela- tem taking a stand to fix melanoma 3.01 times greater risk, compared to noma treatment has shown to have a racial injustice. Researchers are still the Caucasian rate of 1.96 times great- lower success rate in Black patients in working, and hopefully, solutions will er risk. Cormier additionally found comparison to Caucasians and other begin to appear. The primary concern Sophie Rukin that Hispanics, Native Americans, races. A study focusing on the success we face is a lack of education, which African Americans, and Asians were of surgery on melanoma patients led we must prioritize in creating change. more likely to contract stage IV of the by Karen Kadela Collins found that Both medical employees and the US cancer, with a likelihood of 3.6%, 3.4%, the 10-year survival rate post-surgery population as a whole need to become 4.2%, and 2.4%, respectively. On a was much lower in African Americans more aware of how to both treat and stage-specific, risk-adjusted basis, the than in Caucasians and other races. identify Melanoma, regardless of race study revealed that African Americans The survival rate was 88% for Cauca- or ethnicity. Foundations such as the have a 1.48 higher mortality rate than sians, 85% for other races, and only Melanoma Education Foundation are Caucasians. The higher mortality rate 73% for African Americans. Further working hard to help spread awareness in minority groups can be attributed research discovered that any African and knowledge to the people in our to many factors, but the most critical American who had a biopsy, wide ex- country who need it most. It is each factor is a lack of early diagnosis in mi- cision, or surgery was automatically at and every person’s job to help create norities with melanoma. a higher risk of post-surgery compli- more equity in the world of melano- According to a study conducted by cations than a White person with the ma. Isabell Kolm, a German researcher, same operation. The research on this “early detection is the most important is not yet conclusive, and there is no step to improve prognosis.” For mi- nority patients, doctors often detect melanoma in the later stages due to a series of hurdles, one of them being that melanoma in darker-skinned pa- tients is often located on parts of the body that do not have regular UV https://www.kgw.com/article/news/local/systemic-racism-explained-the-four-dimensions-of-racism-and-how-we-can-all-be-part-of-the-solution/283-fbc489ea-bbb1-4e49-b319-9deb5d01519b exposure, such as the palms or the soles of feet, making it harder to de- elanoma is a form of of skin cancer, it is one of the most ing this form of cancer. Statistics show tect. There are also less frequent skin skin cancer affecting fatal, with an average five-year surviv- that on average, out of 100,000, 18.4 checks performed on people of color, over 200,000 people in al rate of anywhere from 99% to 27% Caucasians, 2.3 Hispanics, 1.6 Native either independently or by medical the US per year. The depending on the severity. It is unclear Americans, 1.0 Asians, and 0.8 African professionals, due to a lack of concern, Mcancer forms in melanin-producing, what causes melanoma, but sun expo- Americans contract melanoma in the given it is less likely for darker-skinned or pigment-producing cells, known as sure, an abundance of moles, fair skin, United States annually. Yet, despite the people to develop melanoma. Another melanocytes, beginning when these and family history are all risk factors. lower likelihood of people with dark- possible factor could be the social de- melanocyte cells begin to divide and Consequently, researchers have found er skin contracting melanoma, the terminants of health created by social, mutate uncontrollably. While mela- that people with darker skin tones mortality rate for African Americans, economic, and cultural roadblocks. These roadblocks include a lack of ed- noma is not the most common form have a lower likelihood of contract- Hispanics, and Blacks is much higher https://www.fajarmag.com/deadly-symbols-of-skin-cancer-you-must-spot-early/melanoma-skin-cancer-blood-test/

48 Diagnosis Summer 2021 49 cause women are able to mask their nosed before the age of six, while only with ADHD make friends. One study symptoms better than men, it makes 8% of girls with autism are diagnosed found that young girls ages six to ten medical professionals less likely to di- by that age, and 50% of boys with au- with ADHD have more trouble with agnose autism in women. tism are diagnosed before the age of interpersonal relationships, such as Recently, a new study of autism in 11, while 20% of girls with autism friendships, than young boys of the the United Kingdom using a test tai- are diagnosed by the same age. This same age. Also, women are better lored to women’s symptoms was con- difference can be attributed to the dif- at masking their ADHD symptoms ducted. Since only men were thought ference in how boys and girls display when compared to men, which can to have autism, the tests are tailored symptoms of autism: boys behave also lead to difficulties diagnosing to men’s symptoms, and because of more recklessly while girls are more women. the difference in how autism displays anxious. There is a need to look at patient itself in men and women, women end Attention Deficit Hyperactivity history when diagnosing women up being underdiagnosed because the Disorder (ADHD) is another mental with ADHD since women who have The Underdiagnosis of Mental tests do not recognize women’s symp- disorder that displays itself different- anxiety or depression in conjunction toms. This study found that Asperger’s ly in women. Similar to how women with ADHD can have their ADHD Syndrome, a form of autism without with autism do not outwardly show symptoms overlooked and mistaken Disorders in Women intellectual impairments, is present at their symptoms, women with ADHD for their anxiety or depression symp- a ratio of three men to one woman, often do not show their symptoms toms, leading to their ADHD being Miller Harris while the previous ratio was thought externally, but rather internalize their undiagnosed. Similar to the diagno- to be ten men to one woman, demon- symptoms. Females who have ADHD sis of autism, the ratio of men with https://www.inc.com/workpop/the-gender-gap-is-narrowing-but-gender-intelligence-is-still-lacking.html strating the immense underdiagnosis will experience more inattentiveness, ADHD to women with ADHD has in the past. In addition, autism is also while males with ADHD will expe- changed over the past twenty years. In diagnosed at a younger age for boys rience more impulsiveness and hy- the 1990s, it was believed that ADHD t is always important to know the tal disorder has been traced back to a “wandering womb” to being a psy- than girls; a different study found that peractivity. Also, there is a social dif- was nine times more common in state of your wellbeing, especial- ancient Egypt in 1900 BCE, and the chological one. This shift led to many 25% of boys with autism are diag- ference in how young boys and girls men than in women. As of 2020, that ly when it comes to your mental causes were thought to be abnor- women being misdiagnosed with hys- number has dropped to only 2.5 times health. But what if you were not mal movements of the uterus. The teria instead of other mental disor- more common in men, although Iable to receive a proper diagnosis for term “hysteria” originates in ancient ders. In the mid-20th century, scien- there is no evidence that ADHD is a mental disorder? You would then Greece, where Hippocrates named tists noticed a decrease in diagnosed becoming more common in women. not have access to the necessary ac- the illness after the Greek word for cases of hysteria by two-thirds, while Although the diagnoses of mental commodations or medications that uterus because he, and many others, also observing an increase in anxiety disorders have been proportionally come with a diagnosis. Unfortunate- believed that uteruses caused this and depression, alluding to the mis- low for women, there are strides be- ly, there is a group of people who are disorder. These beliefs had been ex- diagnosis of hysteria instead of these ing made in the scientific communi- constantly overlooked when it comes panded upon until the 20th century, mental illnesses. ty to try and fix this. Happé received to proper diagnoses of mental disor- with many scientists adding on their Currently, mental disorders simply £500,000 for further research in gen- ders: women. own hypotheses regarding the causes go undiagnosed at a higher rate for der differences on the autism spec- Historically, women’s mental ill- of hysteria and how it could be cured. women than men. Autism is a prime trum. With her research, she has been nesses have been dismissed as “hyste- One of the most famous of these sci- example of a disorder that is un- able to create tests to detect autism ria,” a term used to describe an exclu- entists was Sigmund Freud, who hy- der-diagnosed in women due to the specifically in women since the tests sively female mental disorder caused pothesized that hysteria was an illness fact that women exhibit symptoms are tailored to how autism portrays simply by the fact that the person was that could be obtained by both men of autism differently than men. The itself in women. a woman. Although hysteria is no and women, but it was innately fem- difference is so great that many scien- As research continues, more in- longer diagnosed, some doctors still inine and caused by trauma. He be- tists used to believe that autism was formation about how women display describe some women’s behavior as lieved that the reason many women not present in women at all, and when symptoms of various mental disor- hysterical when they ask for proper had experienced hysteria was because it was, it was caused by too much tes- ders comes to light. This allows for medical assistance. In addition, many of their trauma from the realization tosterone in the brain. According to tests to be altered and new tests to be modern tests that diagnose mental that they did not have a penis and had Francesca Happé, Director of the So- created, allowing women to receive a disorders are tailored to men’s symp- been castrated, and he thought hyste- cial, Genetic, and Psychiatry Center fair and equitable diagnosis of mental toms, and women may portray differ- ria could be remedied by getting mar- at King’s College, women are better at disorders. ent symptoms than men for the same ried and having sex. masking one’s symptoms, and they are mental disorder, leading to a lack of Although Freud’s theory was wildly able to do such things as maintaining diagnosis. misguided, it shifted the view of hys- eye contact in a conversation, which The idea of a female-specific men- teria from being a physical ailment of could be a difficult feat for others. -Be https://learnbay.wordpress.com/2020/06/22/data-science-and-mental-health-awareness/

50 Diagnosis Summer 2021 51 52 David Ho http://www.antimicrobe.org/authors/david_ho.asp Diagnosis D https://magazine.columbia.edu/article/pandemic-highlights-urgent-need-long-term-vaccine-development University. Ho has created both and AIDS Research Center at Columbia Directorthe of Aaron the Diamond search for 20years and is currently Ho involved has been in AIDS re and infectious diseases. to 1985and studied internal medicine chusetts Hospital General from 1982 icine from 1978to 1982and Massa he trained at of School Med UCLA in 1978,receiving his MDAfterward, vard Medical and School graduated after,1974. Soon Ho attended Har InstituteCalifornia of Technology in Bachelor from of in Biology Science ing from school, Ho high his earned up Angeles. inLos Aftergraduat he when wasCalifornia 12and grew 1952 in Taiwan. He immigrated to David Ho wason born November 3, havoc on late USinthe the 1900s. tating HIV/AIDS epidemic wreaked Contributions toAIDSResearch influentialthe devas as HIV/AIDS was massively to improve treatment of avid Ho’s influential work and Treatment ------ings and treatments him Time earned innovative and groundbreaking find to one day put an His end to virus. the and research HIV and AIDS in order tients. Ho continues to more learn replicationthe of inpa virus the and therapy process controls which scientists have created atreatment of discovery, this Because illness. the altered previous the understanding of HIV replicates inpatients has which Research Center has unpacked how team at Aaron the Diamond AIDS and AIDSpatients worldwide. Ho’s that people understand and treat HIV and discoveries have changed way the Ho’svirus. groundbreaking findings ly 1.1million people living with the 700,000 lives. Also, there are current ic in started 1981 and has cost over system. The HIV/AIDS epidem thata virus damages one’s immune Immunodeficiency (HIV) is Virus at of beginning the 1980s.Human the ments sinceof start the epidemic the improved existing HIV/AIDS treat David Ho: Bodhi Lavine Summer 2021

- - - - - worldwide. help people with infectious diseases that positively will and impact society his future findings and discoveries his research. We can forward look to as demonstrated past inthe through same the carecan expect for humanity profession holds. Moving forward, we it of care and selflessness a medical pandemic,al Ho exemplifiesthe spir old research to fitthe globneeds of a to HIV/AIDSand now adaptation of Through his attempts cureto find a antibodies inorder to fight thevirus. team looked into isolating and using and avaccine for COVID-19. Ho’s develop testing treatments, methods, fight inthe of diseases to viral quickly ter applied extensive their knowledge Aaron Diamond AIDSResearch Cen tostarted people, infect Ho and the In late 2019,as novel the coronavirus Medal in2001. as well as aUnited States Presidential Magazine’s Man of Year the in1996 53 - - - Genetic Diseases that Disproportionately Affect Ashkenazi Jews Emily Salzhauer

ave you ever wondered Overall, most genetic diseases affect red spots in the middle layers of their why some ethnic groups certain ethnic groups more than oth- eyes and a slow loss of vision and hear- are more likely to get cer- ers, so for Ashkenazi Jews with a fam- ing. They also may experience mus- https://health.clevelandclinic.org/should-you-get-the-genetic-test-for-alzheimers-disease-risk/ tain diseases than others? ily history of any of these diseases, it is cle stiffness which leads to restricted the spleen, bone marrow, and liver, type and severity of the symptoms vary For certain genetic diseases, some are important to be checked to see if you movements and eventually paralysis. CYSTIC FIBROSIS H leading to inflammation and dysfunc- from person to person. Also, there are more likely to get it because it is quite are a carrier as well. Some other examples of symptoms for Cystic Fibrosis (CF) is a genetic dis- tion of the organ. many factors, including age of diag- literally in their DNA. Tay Sachs are dementia and seizures. order that progresses over a patient’s There are three different types of nosis, that will affect the course of the Some examples include Tay-Sachs The most common form of Tay-Sachs lifetime and leads to lung infection TAY-SACHS DISEASE Gaucher disease, and they are catego- disease and a patient’s health. disease, Gaucher disease, and Cystic Tay-Sachs disease is a rare disorder begins during infancy and usually be- and difficulty breathing. It also affects rized by whether or not there is ear- Treatment plans for most CF patients Fibrosis, all of which affect Ashkenazi that leads to dysfunction and destruc- comes fatal during early childhood. Ashkenazi Jews at a higher rate than ly-onset brain involvement. mostly consist of the same therapies, Jews at higher rates than any other eth- tion of the central nervous system. It is Juvenile and adult forms of Tay-Sachs any other ethnicity; about one in 31 Type 1 is the most common type but critical care teams tailor each plan nic group. Because all of the following caused when the body has too little of also exist, but they are very rare. Chil- people in the US are carriers for the of Gaucher disease in the US and Eu- to best fit their patients’ circumstanc- diseases are recessive genetic disor- an enzyme used to break down certain dren with the juvenile form of Tay- disease, while one in 24 Ashkenazi rope. The symptoms of type 1 include es as well as life and health goals. For ders, a person will get these diseases fatty substances; these enzymes are Sachs, also called the subacute form, Jews are carriers for CF. enlargement of the spleen, fatigue, and example, teens with CF are able to do when both of their parents are carriers. called gangliosides. When they accu- will develop symptoms later than the People with CF have a mutation on liver and bone problems. It also does treatments that do not involve being Ashkenazi Jews are Jewish people mulate in the brain in large amounts, infant form, and they live into late the cystic fibrosis transmembrane not have as many adverse effects on hooked up to a machine at the hospital whose ancestors come from Eastern it can affect the function of some nerve childhood or adolescence. Similarly, conductance regulator, also called the the brain as types 2 and 3 do. Type 1 so they can attend school and extra- Europe as opposed to Sephardic Jews cells. those with the adult form of Tay-Sachs CFTR gene, which leads to the CFTR Gaucher disease is treatable through curriculars like their peers. whose ancestors come from the Mid- For the general population, the rate will develop symptoms at any point protein not functioning as it should. enzyme replacement therapy and sub- Patients with CF may complete a dle East, Southern Europe, and North of carriers for the disease is about one between adolescence and their mid- When the protein is dysfunctional, it strate reduction therapy. combination of therapies each day, Africa. While Judaism is a religion, for in every 250-300 people, but one in 30s. For all of the forms of Tay-Sachs, is unable to move chloride, an ingre- Type 2 is a more rare form of Gau- including airway clearance, inhaled Ashkenazi Jews it is also an ethnicity 27 Ashkenazi Jews are carriers for the the type and severity of symptoms can dient in salt, to the surface of the cell. cher disease, and it involves severe medicines, antibiotics, multivitamins, because the Jewish population had a disease. For reference, 25% of chil- vary from person to person. So without the chloride to bring water abnormalities of the brain stem. Un- pancreatic enzyme supplements, set of genetic variations that distin- dren of carriers will have the disease. to the cell’s surface, a thick and sticky fortunately, type 2 causes severe and CFTR modulators, and special fitness guished them from the other Europe- Tay-Sachs disease treatment controls mucus forms in many organs. GAUCHER DISEASE irreversible damage to the brain, and plans. The treatments for CF are very an populations. Some genetic differ- the symptoms and prepares for the re- Gaucher disease is another disease When the lungs are affected by CF, therefore is usually fatal in the first two successful and can add years to a pa- ences include the genetic markers for mainder of the disease, but there is no that disproportionately affects Ashke- the thick mucus gets stuck in the air- years. tient’s life as well as greatly improve the previously mentioned diseases at a cure. nazi Jews. In the general population, ways and can trap germs and bacteria, Type 3 of Gaucher disease is rare in their quality of life. In the 1950s, for higher rate than other groups. Some of the symptoms of Tay-Sachs about one in 450 people are carriers of which leads to infections, inflamma- the US and Europe, but it is the most example, a child diagnosed with CF Ashkenazi Jews get these diseases disease are listlessness, loss of motor Gaucher disease, but one in ten Ash- tion, and eventually respiratory fail- common form in other parts of the would rarely live long enough to go to at higher rates because, long ago, the skills such as speaking, an exaggerat- kenazi Jews carry the gene that causes ure. For this reason, limiting exposure world. Type 3 is not as severe as type elementary school, but now, thanks to mutations were found in the genes of ed startle response to sudden sounds, the disease. to germs is a top priority for patients 2, but is more severe than type 1. It the modern technology and intense a few Ashkenazi Jews, so as the pop- and severely diminished muscle tone, Gaucher disease is caused by low lev- with CF. has the same symptoms as type 1 with treatment that patients undergo, CF ulation grew, their descendants, other also known as hypotonia. Babies with els of glucocerebrosidase, also known CF symptoms include salty-tasting some of the neurological problems patients can live long enough to go to Ashkenazi Jews, are at higher risk for hypotonia are sometimes described as as GCase, which is an enzyme that skin, wheezing, persistent cough- associated with type 2. Patients with college, have a career, get married and getting or carrying these diseases. This “floppy” as they cannot do the same breaks down the fatty chemical gluco- ing with and without phlegm, fre- type 3 have a shortened lifespan, but even have children. idea of passing down diseases between exercises or movements as others their cerebroside. Gaucher disease happens quent lung infections like bronchitis many can live into their 50s with prop- generations is known as the Founder age. Another symptom of Tay-Sachs is when fat-laden cells, called Gaucher and pneumonia, and poor growth or er treatment. Effect. that many children or infants develop cells, build up in parts of the body like weight gain despite healthy diets. Be- cause CF is a complicated disease, the

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