Spotlight on the records of the Black Coalition on AIDS (BCA)

The Black Coalition on AIDS (BCA) records are among the AIDS community-based organizations records (MSS 98-49) housed with the UCSF Archives and Special Collections. These records were assembled as part of the UCSF AIDS History Project, acquired with the goal of documenting the beginning of the AIDS epidemic and the San Francisco community response to it.  

The Black Coalition on AIDS was established in 1986 to address the needs of the African American community in the early years of the AIDS epidemic and “to ensure Black people would receive appropriate services and be adequately represented in policy decisions.”  It is still active today and was renamed the Rafiki Coalition for Health and Wellness in 2015 to reflect its expanded health education and health support services.  

The Black Coalition on AIDS (BCA) records housed with us include meeting minutes, handwritten notes, programs from their first two annual awards dinners, newsletters, position papers, and proposals.  

The honorees featured in the annual awards dinner programs for the BCA Second Annual Awards Dinner in 1991, captured my interest. The event highlighted the achievements of African American activists from the Bay Area and since February is Black History Month, it seemed timely and fitting to share a bit of information about some of the celebrated individuals.  

Ken Jones received the Calu Lester Community Activist Award for his work as the Executive Director of STOP AIDS Project, Secretary of the AIDS Life Lobby, Vice Chair of the Lesbian and Gay Caucus to the State Democratic Party, and the founder of BIKE-A-THON for AIDS among many accomplishments. Jones was a veteran of the Vietnam War. He went on to work on police reform issues in response to the 1991 Rodney King beating and in 2011, he served on the citizen review board of the BART Police Department following the BART police killing of Oscar Grant. Jones passed away last year

Yvonne Littleton received the Individual Community Service Award for her community health outreach work for the Haight Ashbury HIV Prevention Outreach Project. In addition to her public health work and background, Littleton trained as an artist. She was one of the 7 muralists who painted the Maestrapeace Mural on the Women’s Building in the Mission District in 1994. She also worked as a commercial artist and a stage and lighting designer.  

The video artist, poet, activist, and educator, Marlon Riggs received the Sylvester Arts Action Award. I was first introduced to Riggs’s work while I was working at the San Francisco Museum of Modern Art Archives. In 1992, Riggs’s Affirmations won the 2nd Society for the Encouragement of Contemporary Art Video Award. His works can be found in the collections of the Museum of Art Museum and the Whitney Museum of American Art and in recent years, several arts organizations have mounted exhibitions honoring him and his work: 

Last year, the Criterion Collection, which had in recent years come under some scrutiny for its dearth of African-American directors, released the box set of his works, The Signifyin’ Works of Marlon Riggs.  

Riggs died in 1994 at the age of 37 from AIDS. 

Archival records function as time capsules and allow you a glimpse into a specific moment in time and place. And how one document, an event program, can be an introduction to people and places, inviting you to move them beyond just the records. I love this about my job.  

Kevin Miller Joins the UCSF Archives Team

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The UCSF Archives & Special Collections is excited to welcome our new colleague, Kevin Miller who was appointed as the COVID Tracking Project Archive Lead. He will direct a team, comprising of Charlie Macquarie and Edith Escobedo, to preserve and provide online access to the entirely born-digital organizational records and datasets of the COVID Tracking Project at The Atlantic (CTP) to make this archive usable by researchers and to advance current practices in digital archives.

Kevin Miller picture
Kevin Miller

Kevin was the Website Team Lead of the COVID Tracking Project, managing a large group of volunteers building and maintaining one of the most critical sources of information during the first year of the pandemic. He worked alongside hundreds of researchers, epidemiologists, reporters, and passionate individuals to help make interfaces and write articles that ultimately informed public policy at the state and national level.

He received a Bachelor of Arts in Social History in one of the earliest graduating classes of Cal State Monterey Bay, and worked for the University for twelve years as its only web developer. During that time, he collaborated on several projects with the university library and special collections. He is passionate about web accessibility and has built several open-source tools that audit web content against current standards.

He was a founding archivist of the Fort Ord Museum and Archives and volunteered with the Monterey Maritime Museum on auditing their collection. He worked as an archival researcher for the book “Work or Fight!” on race and gender in the draft during World War I.

When he is not in front of the computer, he can be found outside somewhere backpacking, canyoneering, surfing, biking, river rafting, or trying to combine several of these activities into one outing with mixed success.

GRAD 219 Course – The Black Experience in American Medicine – Week 2

This is a guest post by Rhea Misra, PhD Candidate, UCSF Biomedical Sciences (BMS) Program

In reading “The Black Politics of Eugenics,” I learned about how eugenics was not initially a negative concept. Eugenics relates to the idea of human improvement through reproduction and understanding hereditary. It has been associated with Nazi doctrine; however, Nuriddin brings up in the article that, at one point, eugenics was embraced by marginalized communities to combat scientific racism and improve racial equality. The idea that marginalized communities would embrace eugenics to combat scientific racism, reminds me how slurs and negative concepts are reclaimed by these same communities that are harmed by such things to bring about improvement or change. This article also made me reflect on if eugenics, in the modern times, could ever have a positive association? I am not sure I have an answer to that. On one hand and thinking about the research I conduct, genomic editing tools such as using CRISPR or AAVs to make changes to genome have become commonplace.  Because of the inherent nature of these genetic tools, do they fall under the category of eugenics? They have been used to treat diseases. In a previous course, I had met a patient who had undergone gene therapy to treat his hemophilia, and now no longer requires blood transfusions. But on the other hand, gene editing tools have been used in some cases to make cosmetic edits. The whole idea of human improvement in eugenics comes with deeming certain traits better than the other; thus, marginalizing certain groups of people. Because of the inherent “othering” that comes with eugenics, I can understand how it quickly turned into a negative concept utilized to uphold a racist system rather than breaking it down.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Jackie Roger, Ph.D. Candidate, UCSF Program in Bioinformatics (BI)

During our class on 5/21, we learned about the term “biopolitics”. After our discussion in class, I wanted to learn more about it and ended up doing some additional reading. Biopolitics, conceptualized by Michel Foucault, is the intersection of life and politics. In practice, it is the governance and control of human life. Many of the topics that we have covered in class can be contextualized within biopolitics.

On 5/17 we talked about forced sterilizations in California prisons. This was a mechanism for controlling who could and could not procreate, and was deeply rooted in white supremacist ideologies. On 5/24 we discussed the hysteria in the 1980s about the “crack baby epidemic” that never ended up happening and had no reasonable scientific basis. There was widespread panic about the possibility of babies born with physical and cognitive disabilities, but little concern about the lack of resources and support for women with substance use disorders. In both of these examples, the focus was on the child-bearing potential of women, and not on the personhood of women. Both forced sterilizations and public hysteria were used to police who should be having children.

On 5/19 we reviewed the Tuskegee syphilis study, and on 5/26 we drew parallels between the racial disparities of the HIV/AIDS epidemic in the 1980s and the ongoing COVID pandemic. In all three of these examples, the medical system prioritized white lives over black lives. There was significant investment in caring for white patients, while black patients were often neglected or mistreated.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by LauraAnn Schmidberger, Ph.D. Candidate, UCSF Tetrad Graduate Program

Doctors and other scientists are trained to be precise in how they word their hypotheses, methods, and findings, because they know that precision is important in the fields of medicine and science. However, this accuracy does not seem to follow them as they cross into the social sciences. The article “On Racism: A New Standard For Publishing On Racial Health Inequities” highlights some examples of the careless ways scientists discuss race in their studies.

Scientists often say that “societal factors” may contribute to the health disparities they see in Black communities, but they fail to ask what causes those social disparities—that is, racism. This is like attempting to treat a cancer patient’s pain, fatigue, weight loss, and other symptoms instead of acknowledging that they have cancer and attempting to remedy that root cause.

Similarly, we need to examine and begin to treat the root cause of health disparities. Perhaps Black communities do face more financial stress or lack easy access to healthcare, but these are symptoms of the larger issue of pervasive systemic racism. The article points out that there is an abundance of scholarship (largely by Black authors) on the topic of “how racism shapes conditions germane to racial health inequities.” It is not that scientists don’t have access to this information, but that they choose to ignore it or gloss over it for less accurate and less meaningful conclusions.

I also appreciated the distinction the article offers between different types of racism: “interpersonal, institutionalized, or internalized.” While all racism is structural, it can express itself in different ways that all need to be addressed; we can think of these like different types of cancer which require different treatments. Many cancer patients may benefit from chemotherapy, but knowing where the tumor is might allow it to be removed surgically. Knowing the origin of the racism and how it is perpetuated in a given scenario can give us better tools to eradicate it. For example, interpersonal racism may be combated with education on critical race theory, while institutional racism might require breaking down the old systems built on inequalities (i.e. abolition rather than reform).  

Another example of imprecise language arises from the issue of trust. One of the “social disparities” clinicians often point to is the lack of trust that Black individuals and communities feel for the medical community. However, as the article notes, “assertions that patient mistrust drives disparities obscures the etiologies of racial health inequities and tacitly blames affected patients for their disproportionate suffering.” In other words, saying that Black patients suffer from diseases either more frequently or more severely because they don’t trust doctors to help them is a form of victim-blaming. It is not the Black community that has decided not to trust doctors; it is the medical community that has, through both assaults on and apathy towards Black individuals, actively dismantled any good relationship the two groups might have had.

Issues of mistrust have arisen not because of the one event alone (such as the Tuskegee experiments), but because of both historic and ongoing micro- and macro- aggressions against marginalized groups, and these can only be addressed by addressing their root cause: racism. Largely white medical institutions continue to prove themselves undeserving of the trust of BIPOC communities because they continue to perpetuate racism in a multitude of ways, from continuing to utilize race corrections and other concepts that reify biological theories of race, to repeatedly marginalizing and otherwise failing Black faculty and students. While trust between patient and doctor (as well as patient community and healthcare community) is an important factor to consider, “incessant racial health inequities… reveal less about what patients have failed to feel and more about what systems have failed to do.”

Medicine loves precision. A person does not just have lung cancer, they have non-small cell lung squamous-cell carcinoma, or perhaps pulmonary enteric adenocarcinoma. However, when it comes to understanding the disparities between patients of different races, the desire for exactness seems to disappear and is replaced with hesitant generalizations. This is not unique to science, but appears in many corners of society, especially as discussions of race become more common. However, scientists have the ability to give the topic the accuracy it deserves by becoming familiar with the growing wealth of scholarship on the relationship between racism and health disparities and citing it in our own research. Language matters, and taking more care in our wording as it relates to race and medicine is one simple step to combating racism in the field.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Karissa Hansen, Ph.D. Candidate, UCSF Developmental and Stem Cell Biology (DSCB) Program

The readings and conversations in class this week brought forward discussions about how institutions can ensure equitable access and treatment of underrepresented persons in the biomedical professions. The struggles of individuals at each step of this process were highlighted: From early in training during medical school and residency to higher positions of authority at medical institutions. Therefore, extensive changes are not only required at the level of admissions, but also in later career support in hospitals across the country. Despite the conversations that have been reignited in the past year regarding equitable practices, meaningful large-scale change has yet to be seen. Bias in hiring practices accompanied by limited support in part has led to the lack of representation in leadership positions and a reinforcement of such inequities. Moreover, persons of color are often those that are called upon, or volunteer, to expand these efforts at institutions across the country, increasing the burden on these individuals. I feel like I must hold out hope that the education of the current generation of up-and-coming physicians and scientists will lead to such changes as these individuals move into positions of power. It’s hard to be optimistic with such a long road ahead, but the young scientists that I am surrounded by give me hope that we’ll get there.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Nebat Ali, PhD Candidate, UCSF Biomedical Sciences (BMS) Program

One of the final pieces we read as part of this course was an article by Boyd et al titled “On Racism: A New Standard For Publishing On Racial Health Inequities”. This article encompasses many of the concepts we discussed in class and exemplifies how racism continues to be maintained in our medical and scientific spaces. As the article states, racism is “America’s earliest tradition” and was used as the foundation for all aspects of American society.

As someone who grew up in the Bay Area, there seems to be the misconception that liberal parts of our country are somehow free of these frameworks. This is far from being true, and one can quickly come to this realization by taking a brief look into the history of our institutions.

Fifty years ago, Black employees at UCSF initiated the formation of the Black Caucus- the first affinity-based group established in the UC-system- in order to protest the racist policies and mistreatment they faced at UCSF. Members of the Black Caucus coined The Medical Center at Parnassus “The Plantation on the Hill” due to the discriminatory practices they faced in the workplace (reference linked below). As a united voice the Black Caucus demanded for the improvement of their working conditions and for their fair treatment. In addition, they also fought strongly to advocate for the recruitment and retention of Black students at UCSF. When I casually walk through the halls of my building or sit and have lunch in the cafeteria, I’m often reminded that only fifty years ago Black and Brown UCSF employees didn’t have the right to freely navigate through campus the way that I do. The strikes and protests organized by the Black Caucus were transformative, and while their impacts are still felt today there is still a long road ahead in order to dismantle the systems of oppression these institutions were built on. Within our own communities in San Francisco, we are witnessing and experiencing some of the most alarming disparities in the ongoing COVID-19 pandemic.  

I have a vivid memory of a discussion that took place in a microbiology course I was taking early in the pandemic that revolved around genetic predispositions to severe COVID-19 infections. It was even more troubling to see subsequent studies that additionally failed to assert the contributions of racism in the prevention, detection, and treatment of COVID-19 infection. As we discussed through some of our previous readings, studies like these result in both the erasure of systemic racism’s impact on health as well as the large numbers of Black scholars who specialize in this area of research. Some of the recommendations provided by the Boyd et al article will be critical in improving the practices in scientific research that ultimately contribute to this. In the case of the pandemic, I always find myself wondering how beneficial NIH funds could have been if they were redirected to provide care to highly impacted Black and Brown communities instead of being used to do poor research and/or research that is only tangentially related to the virus. In order to begin repairing the damage that’s been done, it will additionally be important to consider how federal funds are allocated to agencies like the NIH and CDC. Improper allocation of funds to these agencies can sequester money away from developing sustainable care programs in underserved communities and subsequently direct them to research practices that only reinforce racism in science and medicine.

GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Eliza Gaylord, Ph.D. Candidate, UCSF Developmental and Stem Cell Biology (DSCB) Program

What you publish in science is soaked in opinion – regardless of the objectivity it tries to maintain. What you publish in science is accessible forever – regardless of the truth it holds. And if science is opinion, and science is accessible forever, then by definition of the mathematical transitive property of equality, opinion-based published literature perpetuates throughout the years and is treated as fact simply due to its accessibility to read and cite. However, just because something was published does not mean it is sound or accurate. What are the consequences when this undying nature intrinsic to publication is mixed with ‘bad’ science, written to immortalize the author’s opinion instead of biological truth? One familiar example is Dr. Andrew Wakefield’s work published over two decades ago where he wrongfully claimed that the Measles, Mumps, and Rubella vaccine caused autism in children. Despite the retraction of his paper, multiple lawsuits, and the uncovering of conflicts of interest that inspired his original piece, thousands of individuals across the world still believe in his work over twenty years later and put their children at risk by refusing to vaccinate them out of the false fear of developing autism.

Though the harmful consequences from this specific example have only persisted 20 some years, another harrowing example of fabricated and harmful science has persisted for over a century: the collection of work centered on identifying physical racial differences. These studies relied upon the torture and robbery of Black people’s bodies and highlighted false ideologies of biological differences between the races to justify slavery and perpetuate racism. And doctors still reference and support these false beliefs to this day, many ignorant to the racist history that gave rise to the findings. These works are dangerous to the Black community, as they ensure implicit bias, inferior medical treatment, and structural racism will persist in the American health care system. Like the Wakefield study, a first step toward improving the Black experience in American medicine demands the identification and retraction of these false and dangerous studies. But beyond the retraction of these works, medical education programs must incorporate coursework to actively discuss and condemn these racist ideologies and the fabricated works that support them. 

GRAD 219 Course – The Black Experience in American Medicine – Week 2

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This is a guest post by Cambria Chou-Freed, Ph.D. Candidate, UCSF Biomedical Sciences (BMS) Program

Last week in class, we discussed the topic of reparations for the harms enacted by the U.S. government and medical system on people of color, specifically Black Americans affected by the U.S. syphilis experiment at Tuskegee and the Latinx/Indigenous communities affected by the U.S. experiment in Guatemala. My interest in reparations is bolstered by my heritage, my Jewish American ancestors who immigrated from the former Soviet Union prior to World War II. The Jewish community is one of the few communities throughout history that has received reparation payments for affected individuals (link: https://www.vox.com/2014/5/23/5741352/six-times-victims-have-received-reparations-including-four-in-the-us). Since 2012, Germany is estimated to have paid $89 million in reparation payments for the Holocaust—to countries such as Israel, but also to individuals, including many Jewish Americans (link: http://www.claimscon.org/about/history/). Though my family did not directly receive those reparation payments, they mean a lot to me, given that some of my ancestors narrowly escaped and what others who I never got to know about didn’t.

Many have proposed that Germany’s reparation payments could serve as a model, or at least a precedent, to support the case for U.S. reparations to Black Americans for slavery, including Ta-Nehisi Coates in “The Case for Reparations.” The U.S. syphilis experiment at Tuskegee represents only a tiny fraction of the legacy of slavery and the crimes that the U.S. has committed against Black people. Though the U.S. government has “paid reparations” through court settlements for the Tuskegee experiment, it’s clear that much more needs to be done. I can’t say that Germany has offered a perfect model or that we should be copying their methods, but it proves to me that large-scale reparations on behalf of a government can be made. Furthermore, it provides an example of payments made not only to a country’s own citizens, but also to foreign citizens. This would be the case for what the U.S. owes to the citizens of Guatemala affected by the U.S. Public Health Service experiment there. Reparations, of course means much more than monetary payments, and it means different things to different people, but the conversation has to start somewhere.

GRAD 219 Course – The Black Experience in American Medicine – Week 3

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This is a guest post by Mariko Foecke, Ph.D. Candidate, UCSF Biomedical Sciences (BMS) Program

Watching the retrospective on “crack babies,” it becomes painfully obvious how much panic can be caused by the results of a single study. I think it’s also a remarkable example of how, when we don’t look back on history, we’re liable to repeat the same mistakes. It reminded me of how, a decade later in the late 90s, alarm bells were prematurely sounded when the Lancet published Wakefield’s article claiming the MMR vaccine caused autism. Interestingly, I think there were a lot of similarities between the initial studies and subsequent responses:

  • Widely publicized by the media
  • Preliminary studies with a small sample size
  • The effect on minority groups
    • Women who participated in Chasnoff’s study were offered free prenatal care in exchange (which they would not have had access to/been able to afford otherwise)
    • Diagnosed with autism later and less often (particularly problematic since both “crack babies” and autistic children were considered to be more treatable/manageable with early intervention)

As a basic scientist, I think the retrospective also highlights how important it is to think about how we contextualize and speak about our work and how damaging it can be if it’s taken out of context.