• Diverse Health Hub Team

Updated: Jun 25

We constantly hear that these are uncertain times, but one thing is for certain. The pandemic has signaled a reckoning. It is revealing the consequences of our countries’ historical actions. In America, the past and present merge. The recent infamous police murder of George Floyd exposes that not much has changed in 400 years. Racism is not only alive and well, but systemic as we see in the ubiquitous police killing of black men.

We recognize racism is a global disorder, but our focus is on America’s legacy. The perpetual and insidious acts of murder against blacks cannot be unseen. Glaring health disparities that harm blacks cannot be ignored. Racism and health disparities are inextricably linked. This reckoning is an opportunity to examine our conscience and our roles in contributing to such a legacy.


We must acknowledge the evidential fact that the inhumane treatment of blacks is deeply rooted in America’s history. We look to 1619, when chattel slavery first infected America. This bloody and soiled past still informs and influences the present. The objectification of another human cultivates a discriminatory and hateful mindset, one that is taught, embodied, and passed on from generation to generation. To this day, this mentality allows white supremacy to exist. It is what allows police brutality against blacks. It is what allows the offending officers to walk away without consequences. At the crux, it is what allows institutional health disparities to persist and impact the livelihood of blacks. This degeneration is endemic to society. It threatens future generations, deeming it a public health crisis.


As we navigate this territory and seek direction, we look to Adam Serwer’s analogy of train tracks to explore the understanding necessary for change. Serwer describes,


Serwer: “If you have a train track, it goes to specific destinations. If you put a brand-new Acela train on the train tracks, it might get to one place or another faster. It might be more comfortable than the old train that you used to have. But it’s only going to go to the same places that it used to go. ... All of the racial inequities that were in the before world, they are naturally being reproduced in the coronavirus world because the structure of our society was built along those tracks. … The train is going to go to the same destination no matter how new and shiny it is, because that’s where the tracks are built to go. ...It’s very difficult to change the direction of the train if you don’t build another track.”

In order to make systemic changes, we have to examine the track itself. Altering what’s on the track is useless. The tracks will continue to take people to the same locations because of inequitable systems that are already in place. We must lay new tracks to shift the direction and change outcomes. In short, if we do not change where we are going, we will end up exactly where we are headed.





The first step to laying new tracks and moving in a direction towards solutions is the recognition that racism is real. Once we accept this truth -- no matter how uncomfortable -- we can begin to talk about it, unpacking the cause and effects of its existence. In order to understand racism in America, we must look to its past and learn from it. We must do this collectively to teach future generations to break the vicious cycles of racism. Can we come together to learn about the terrible experiences of our ancestors? Can we acknowledge that the past continues to shape our understanding of one another but does not have to define it? Can we collectively share the same space with each other and embrace our differences?


In our quest to answer these questions, we gather observations from a multicultural lens. We set out with the intention to understand one another and to gain a diverse context of the inner workings of America. We hope this will allow us to step back and see the bigger picture, to see how everything and everyone is connected, and even to see ourselves in that connection. Through this dialogue we listen to faceted experiences to learn what it’s like to walk in the shoes of another, and to understand the pain and suffering they feel. Through this empathetic process, we hope to unshackle our minds and recognize our own perceptions of racism, and assume personal responsibility for erasing it. In this exchange, we share common ground as humans that inhabit this planet, and as brothers and sisters who must find a way to coexist. May we learn from our past to know more about who we are now, and more importantly, who we can become as a nation, and as a world together.


In gathering our data, we conducted a simple multicultural survey questionnaire to see where people stand on the subject of racism. Specifically for this essay, we purposely interviewed three couples and two individuals from multicultural backgrounds to see how different ethnicities relate their perspectives and painful experiences with racism. Please meet Raven & Sam, Izabella & Kenji, Jessica & Esteban, Kurt, and Neftali. Their stories guide this exploration of racism, health disparities, and viable solutions.


Diverse Health Hub: “For those abroad, what do you see outside looking in concerning George Floyd and all the blacks that died by police before him?”


Kenji: “Like for me it was so painful, it hurt in so many different ways like I couldn’t comprehend that that actually happens in the world. Like I said before about how in England you ask yourself, ‘Is that happening here?’ and to that extent, now looking at that video, it hurt my heart to think just because of the color of his skin that’s what happens and that was intentional. I saw there was so much intention behind what he did that when he even killed him his knee was still on his neck and that’s when you know this is a heart issue, the issue is in his heart like he desired to kill him because of the color of his skin and that’s what hurt the most.”

Izabella: “Yeah, it’s completely inhumane and as Kenji said I am struggling to comprehend how another human being can do that to someone like it must’ve been taught to do these things somewhere because you are formed through the experiences and information that you bring in so for me I’m worried and I wonder what information is being given to police officers for them to actually act that way.”

In Kenji and Izabella’s statements, we see how racism escalates into violence. We see how racism manifests in whites with authority, like the police. George Floyd’s death as Kenji points out was from the heart, it was intentional. This severe act of violence is no different than lynching. The knee on the neck is no different than the rope around the neck. Even worse, it violated the oath to protect and serve. Kenji points out this was deliberate as the knee remained on Floyd’s neck even after his last, gasping breath. It’s one thing to be scared of a racist terrorist organization, and quite another to be scared of those entrusted to serve and protect. Are we starting to see that the two may be one and the same?


Izabella shares her concern on how racism informs police training, permitting the abuse of authority to carry out racist actions. Police brutality is a direct echo from slavery, because of the violence directed toward blacks because of their simply being black. Izabella speculates about the nature of police training, and how police officers rationalize their behavior toward blacks. We must make the connection that historical perceptions of blacks are at play here. They are objectified, vilified, and presumed guilty.





This link from Mapping Police Violence, an advocacy website that tracks the murders of people by police, more than confirms that racism influences crimes against blacks. It’s powerful to see the faces of the slain, to read their names, and to see how the majority of the officers walked away with blood on their hands and without consequences.


Systematic violence against blacks begs us to examine the cause of such a reality. We dig further to comprehend how acts of murder can be carried out and exempted from the law when committed by police.

Diverse Health Hub: “What do you think is the root cause of racism in America?”


Kurt: “And in the case of America, if you go back to the beginning of 1619 in Jamestown, Virginia, the idea that someone thought that they could go to another land and capture someone, treat them as an animal, that showed some sort of inherent thing inside.”

1619 marks an important starting point in America as the first Africans were sold into chattel slavery under the British colony in Jamestown, Virginia. Africans were objectified the moment they were separated from their families, uprooted from their land and culture, and bought and sold like animals. Africans were deemed as property owned by the colonies, their fate was to die slaving for the profit of their white “owner.” It is from the enforcement of this dynamic that unthinkable atrocities were committed and maintained again and again through law.


Raven: “I believe that the root cause of racism in America, is a heavy question...For me, personally, I think that racism is a symptom of colonialism...the French, the British, the Spanish, the Italians, all of these people who took Manifest Destiny and imposed their culture into anyone with a slightly darker pigment, and completely devastated resources and ripped people from their culture and forced Christianity or Catholicism or whatever, instead of respecting the differences that were in the world at the same time, if not before them.

To further our understanding of America’s racism dilemma, we should start at its “discovery.” We must first recognize that America was originally inhabited by indigenous cultures who lived for thousands of years prior to the European arrival and colonization. Native Americans faced the genocidal expansion of Europeans, suffering catastrophic fatalities from foreign diseases and weapons of war. Survivors were oppressed under colonization. This paradigm carved a pathway for slavery to exist as it did in America. We now look to understand the colonial relationship between the oppressor and the oppressed.


Frantz Fanon, a psychiatrist from Martinique studied post colonialism and the effects it had on blacks and their way of life. Fanon was influenced by his own reality as a black man colonized by the French. From his book, Black Skin, White Masks he renders a poignant conception of colonialism:


Fanon: “The black man possesses two dimensions: one with his fellow Blacks, the other with the Whites. A black man behaves differently with a white man than he does with another black man. There is no doubt whatsoever that this fissiparousness is a direct consequence of the colonial undertaking."

 

Colonization creates a split, unequal relationship between the oppressed and the oppressor as they exist side by side. The innate inequality of this hierarchical arrangement between blacks and whites paves the way for racism to exist. Maintenance of this hierarchy through abuse of power gives an illusion of white supremacy, from which whites develop a superiority complex. Conversely, the power structure hinders black advancement giving the illusion of black inferiority. This becomes the basis for which all black thoughts of themselves and each other are perceived and exchanged. Fanon adds another important point here,


Fanon: “...one element in understanding the black man’s dimension of being-for-others, it being understood that to speak is to exist absolutely for the other.”

For over 400 years now, blacks have been separated from their cultural roots of who they are as an independent people. As Fanon points out they have existed for their white oppressor and still continue to do so. Kenji shares an example of “being for the other” as pre-existing structures of racism influence how he is seen by the color of his skin and not as a human.


Kenji: “There’s so many situations that I look back on and think oh my days that that actually happened to me, but I can remember one where me and my teammate were just walking, walking to the pitch and it was another Black guy and the coach said to me, the coach said to us, he said “Oh two Black guys together, that’s a problem,” and now looking back at that time I laughed it off. I laughed it off, but it didn’t make me feel good. It made me feel like, “What do you mean? You two together are a problem? What do you mean?” and it made me feel like I was not human…”

Kenji also adds,


Kenji: “For example, like walking into a shop and you’re getting treated differently to how a White person would be treated or getting followed in a shop because they think you’re going to steal and it’s just like them sort of things like you’re getting perceived to be something just because of the color of your skin.”

Raven explains a similar experience of “being for the other,”


Raven: “I knew what it was like being a minority in the room, I knew what it was like... How to code-switch and how to talk to people that were different than me, so I wasn't necessarily uncomfortable, but I was definitely aware.

Sam shares his experience of “being for the other” as he recalls the need to to appease a white woman who was in the wrong when she hit his car. It was his responsibility as a black man to understand how he was perceived by the other,



Sam: “It was an older white woman, and she hit my car. It was parked. She grazed it coming in and I felt the car shift, so I was like, "She definitely hit my car." So I went to check and, luckily, I didn't see anything, but when she got out of the car, she immediately said, "I didn't touch your car, I didn't touch your car," before I even said a word. I'm like, "Yeah, you grazed me. I was sitting down. Yeah, you touched my car." But I was like, at that moment, I was like, "Okay, this is an older white woman, I am a younger black man. If I escalate this situation, it's gonna look bad, like if the police come... "

Whites are able to act freely, doing what they want without consequences of being blamed, assaulted and even murdered for their actions. Blacks are continually targeted based on their skin color alone. They are stereotyped and assumed into a society that’s beaten them into psychological submission by labeling them as troublemakers, thieves and irrationally angry even when the wrong is committed against them.


On the same side of this coin we also see similar treatment regarding immigrants, who are inevitably woven into the fabric of racism in America based on their differences. Jessica, an immigrant from Ecuador and Neftali, an immigrant from Mexico share their experiences of what it’s like to “exist for the other.”


Jessica: “I felt discriminated once. I was talking to a friend, I was talking to her in Spanish, and a gentleman yelled at me that this is America, that I should speak in English. And that, at the moment, made me feel anger 'cause I couldn't, first of all, understand why he would mix and yell at me something like that. And what I did was I asked my friend to wait for a minute, and I explained to the gentleman that I'm actually an American citizen, but I speak two languages.”

Neftali shares his experience of how he is seen by whites, he tells us,


Neftali: “I've been in situations where I've been ignored, or given kind of looks, because of the way I look, my color of the skin, or my accent from some of the English speakers from birth. I learned English here.”

Alongside racism, Americans also experience xenophobia, which is a prejudice against people from different countries. Neftali is of Mexican descent but recognizes his ancestry from indigenous people from Oaxaca: Mixteco/Zapotec. He embraces all of it as he so beautifully says, “I'm a Mexican of birth, but I feel like I'm a citizen of the world.” Why is it so difficult for some to realize that we humans are nomadic people, who have traversed the world over? We are ALL immigrants in that sense, and therefore connected.


This framework is maintained to empower whites, while silencing blacks and people of color. It is a highly stratified system that grants white privilege. When you have privileges, you do not want them taken away. Which means that those who have white privilege want to maintain the status quo. As Sam points out,


Sam: “The root being something that people who want to maintain power. ... It's also greed, very much tied to greed, which ties into power of maintaining a certain structure and not wanting to lose that and being fearful of losing that power.”

At this point, it only becomes a matter of keeping this system in place,


Raven: “And I think that due to them manipulating systems to maintain their power, there has been no challenge to that way of thinking for the longest time. And so they've been able to maintain that systematic disenfranchisement of other cultures.”

The question then becomes how is racism maintained in America?


Sam: “I think it's just the history books. … What they're teaching in schools. … And who gets to write that history. … I think in America, the educational system, they romanticize slavery and they try to make it really whitewashed and don't really acknowledge the horrors of slavery. … They don't say why it existed to uphold the capitalist system, they don't teach us any of those things. So, that's why people normalize it, because it's so ingrained into the DNA of America, it's woven into the fabric of America and how America was even discovered with the mass slaughtering of indigenous people.”

Then, how is racism perpetuated everywhere?


Raven: “I think, speaking on a global scale, racism is normalized in the way that white people is considered the norm. When you Google professional hairstyles, it's a white person. When you go to the store and get new colored pantyhose or a Band-Aid, it fits a white skin tone. When you're learning a different language and the adjective for pretty is a light-skinned person with white beauty features, and the adjective for ugly is under a darker skinned person with more African features. All of that gets ingrained into your system. When you're looking at TV, reading books, reading magazines, watching commercials, you're inundated 24/7 with white imagery, white values, white principles that are not native to your culture, which you don't even know anymore, and are normalized throughout society. So it's hard to come to terms with being Other.”

The system is maintained by means of epistemological declarations that we see all throughout educational teachings and textbooks, not to mention teachers themselves. We see this even more insidiously in media: print, magazines, billboards, television, everything that delivers a message.


Going back to Serwer’s analogy, we see here the need to lay new tracks. Things still haven’t changed, because we haven’t laid those new tracks. In the 21st century, we’re seeing the same atrocities as before in 1968, and going back all the way to Jamestown. Slavery may not exist and look the same way it did 400 years ago, but it is injected subtly and craftily into every layer of foundational institutions, such as educational curriculum, textbooks, print media including prestigious newspapers and magazines, and entertainment media. These are the most impactful tracks because they should be the gateway of truth, accurately representing events as they occurred. Including the many narratives and subjective experiences of all people that make up history. As we see in this case, the tracks were laid down by the oppressors as they wrote history to maintain their image and power while leaving out the silenced voices of the oppressed.


This understanding connects the cycle of racism to white power structures. Now, we look at how it intersects with health disparities. This is at the heart of Diverse Health Hub’s mission.


If you can imagine the atrocities of slavery translating over time into modern police brutality, then you can imagine how it infiltrates other significant institutions like our healthcare system. If blacks can be objectified and animalized enough to be murdered in the streets, what do you suspect is happening in the public health sector? If the police are not abiding by their oath to serve and protect, but are actually murdering citizens, then envision racist healthcare workers who are not abiding by their Hippocratic oath to first do no harm. Are they properly diagnosing, curing, and treating blacks? As we trace history once again, do you think there is deliberate mistreatment of blacks that includes sadistic enjoyment of seeing how much pain they can tolerate, as well as testing them like lab rats? This has happened, and continues to happen. It is Diverse Health Hub’s ultimate mission to not only shine a bright light on the intersection between racism and health disparities, but to expose these crimes against humanity.


For 400 years, the unwavering reality of slavery still reverberates, as the effects of its trauma affect blacks today. The body remembers and stores trauma on a cellular level. The mind can store it and push it down -- repress it -- but it will always manifest in a physical way. In Legacy of Trauma, Brandon Jones shows a riveting connection between racism and health outcomes for blacks.


Jones: “Historical trauma is an example of intergenerational trauma. It’s caused by events that target a group of people. Thus, even family members who have not directly experienced the trauma can feel the effects of the event generations later.”

The effects of trauma act directly on the physical and cognitive development of any human who experiences it. Per Jones’ research, this trauma causes disrupted neurodevelopment, social, emotional and cognitive impairment as well as disease, disability and social problems.

In an article from the New Republic, Alma Carten supports this claim. As she states,


Carten: “There is increasing evidence that repressing feelings associated with acts of white racism may be psychologically damaging and lay the foundation for future mental health problems and behaviors symptomatic of post-traumatic stress syndrome.”

It is therefore important to recognize that health outcomes will be different for a population who has been oppressed and experiences intergenerational trauma as a result of slavery and racism than a population that has not. Continued exposure to chronic stress renders an oppressed group more vulnerable to disease. This is the first step in seeing the disparity intersection.


We want to know the answer to a timely question:


Diverse Health Hub: “With respect to what you see with the pandemic, do you think racism is at the heart of health disparities?”


Sam brings up the compounding effect of the people who perform essential worker duties and their increased exposure to COVID:


Sam: “This pandemic is bringing to light, when we have essential workers who are most likely to be black people and people of color, who are your people delivering the mail, people at the fast food restaurants, people who are delivering food, and these are people who have to work, because they can't afford to not work, they can't. They most likely won't have a job that allows them to work from home… And as we've seen, the numbers in black cases far outweigh the number in white cases, and it's because of these things ... that were put into place before the pandemic even hit that makes this so prevalent within the black community.”

We must look at the historical context of health practices and the doctor-patient exchange between blacks and whites. Racism influences this relationship through the objectification of black bodies causing intergenerational mistrust. If you’re looking at someone’s body, and you’re responsible for healing it, then you have to trust that doctor. But because that trust was violated historically, the black patient can no longer take refuge in a healthcare system that should be there to diagnose, to care, and to treat them equitably. Sam shares his thought on this:


Sam: “A lot of the things that they're teaching in medical school are things that have been kept from slavery: How slaves were treated harshly, they had tests ran on them. They basically treated their bodies as experiments. … So if you take these things then multiply them by many years of evolution, and of technological development, there are these traces of racist medical practices that still partake today, where doctors actually believe that people with darker skin have a higher pain tolerance. And you see that very prevalent with maternal mortality rates, and the unfortunate plight of black women that they had to endure when they are giving birth or having the birthing experience.”

Raven shares a heart-felt story about her experiencing that breach of trust when as a young girl in summer camp. She and her father had to wait for four hours to be seen by a doctor when her symptoms were worse than her white friend, who arrived and was treated immediately. They were ignored and neglected for hours, and when they politely asked for an update, they were dismissed and rudely told to sit down.


Raven: “My friend who was white gets called back to ... get tests and whatever. ... Two hours go by, my friend comes out, says … “they told us we could go.” Three hours go by, four hours go by. ... I asked the nurse there … and she really just curtly said, "You need to sit down and wait." ... There's nobody else in the waiting room. It's the middle of the night. … My dad finally wakes up and he ... goes to the front desk and then a doctor comes back and sees me. The whole interaction with the doctor was maybe five minutes, he took a look at my arm, gave me some antibiotics, and then said, "You can go." There was no eye contact, he didn't ask how I was feeling, he didn't ask how I was doing, he didn't apologize for the wait, none of it. ... It made me feel like I wasn't as important as my friend, like they didn't see me as important despite my injuries in this situation being worse than hers.”

This shows there is no trust in the black patient, white physician exchange. Imagine what happens for black patients on a regular basis, especially those who have chronic diseases. They are in life-threatening situations, and their symptoms are glossed over -- they are sent home, told they are overreacting, advised not to worry. In severe cases, their primary care doctor sends them to a specialist who then says I’m not going to test you, there’s nothing wrong. They are denied access. Is this any different than the tree lynchings, than the knee on the neck? Is this systematic treatment another way to kill off blacks?


With this said, despite all the advancements in total breast cancer research and survival rates, black women are 42% more likely to die from it. This is because they are diagnosed later, or they do not have equitable access to specialists and treatments. Likewise, Multiple myeloma is the second most common hematologic cancer in America and the most common in blacks, yet blacks’ survival rate compared to whites is less. Despite the unique impact on black people, white people are more likely to survive over 60% longer with the disease. Rare diseases like Renal Medullary Carcinoma are related to sickle cell, which primarily affects people of African descent. Considering this, there have been limited historical efforts to research this rare but deadly disease. Diverse Health Hub collaborates with health equity-minded people in all of these disease areas who are changing the course of medicine toward inclusive and equitable solutions for vulnerable populations.


As it stands, people of color do not have equal access to solutions such as treatment options for these diseases. Clinical trials are a key component to this dilemma. Inclusivity is crucial to improving overall health outcomes for everyone, so we need to gather broad genomic data in order to understand the complete context of the disease and improve precision medicine. Inclusivity is of the utmost importance because the so-called “minorities” are emerging as the majority. The denial of access to clinical trials hurts everyone since the diseases of today must be understood to save the future generations. The bottom line is that clinical trials benefit everyone. So to think of it another way, if removing barriers to access improves the lives of everyone, then racism is harming us all in the end.


As we come to this crossroad, we come back to Fanon and Serwer who capture the spirit of what our collective responsibility is. Fanon says,


Fanon: “But once we have taken note of the situation, once we have understood it, we consider the job done. How can we possibly not hear that voice again tumbling down the steps of History: “It’s no longer a question of knowing the world, but of transforming it.”

Transformation begins by building new tracks as Serwer describes them. Every person’s intention and action, large or small -- doesn’t matter the magnitude -- will either lay new tracks to new destinations, or more of the same tracks to the same destitution. In order to rectify the ills of racism, and to create an equitable and healthy society, the whole of humanity should be accountable in changing that direction.


Diverse Health Hub: “What is the first step in erasing racism? How can we collectively and globally come together in peace?”


Izabella: “I believe the step that we now need to take is to all take action. We are all aware that racism exists, there is history on it, there is evidence of it and there is people screaming for help and they’ve been screaming for way too long so we all have to come together to participate in anti-racism work in order to actually create and make a change.”

Sam: “I think there needs to be a moment of self-reflection amongst all non-black people to really identify what their personal biases are, why do they feel the way that they do, to actually do the work of unlearning the things that they learn, to not pre-judge people just based on their skin color. … Spend a day watching Jane Elliott, … a white woman doing the work of educating people on racism. … And don't be afraid to have those uncomfortable conversations.”

Raven: “I think that it's important for white people to acknowledge there's an issue, to acknowledge their privilege. … We don't need an apology, we need action. If you're in a position of power to sign legislation, to pass a bill, to pass a law to fire somebody that you know is racist, you need to do a little bit more than taking a knee. Recognize your position and do whatever you can in that position to right the wrong.”

Neftali: “We need a better leader as a president. The president we have right now, he makes people, again, revive racism; especially to African-Americans and Mexicans.”

Esteban: “I believe the first step in erasing racism is accepting that it exists in the current reality and that we need to really make sure that we act on it. And we need to make sure that our kids grow up knowing that it exists, but they can fight for it, for what is good.”

Jessica: “I want to teach my kids that it doesn't matter what religion you are, what color skin you are. Anything that makes you different, I want them to embrace that and to never feel that that makes you more or less. I wanna teach them that, no matter what, being a good person overcomes anything, and to love equally.”

Kurt: “There are still things that we should appreciate about each other. I think the world is a beautiful place because of the different ethnicities, cultures, backgrounds, and experiences.”

Kenji: “For me there is only one solution and the solution is to check your heart, where is your heart at? Like this is a heart issue, this is to realize that we are one race, the human race, we are God’s children and when I look at a White person, when I look at a Black person it should be the exact same feeling. It should be the exact same feeling that you get and because it should be coming out of love. This is my brother, this is my sister and once we start to realize that and we come together with that knowledge and understanding, that’s the only way that this is going to change.”

Coming full circle, we see the light at the end of the tunnel in the form of viable solutions from our gracious contributors. We collectively reflect on their answers, and hope this project provides a space to start the healing process. May we move forward in a new, positive, and healthy direction together.

  • Diverse Health Hub Team

Updated: May 20

Originally published with our partner, Patient Empowerment Network


The COVID-19 pandemic has been an unprecedented and collective experience for us all. Sadly, the pandemic has affected some more than others. This health crisis highlights both the pre-existing inequities in our healthcare system and the populations that experience such ramifications. Racial and ethnic minority groups (REMGs) will make up the majority of the population in the near future. Over the next two decades, the US population is estimated to make this major demographic shift. This is problematic because present inequities render REMGs disproportionately vulnerable and sick.


It is critical that REMGs are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone. Currently, REMGs do not have equitable access to general health care, let alone clinical trials. We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.




Clinical Trials Awareness Needs to Extend Beyond an Awareness Week

Clinical Trials Awareness Week is May 18th-22nd. In light of this, we speak with Dr. Gary Puckrein, president of the National Minority Quality Forum, to learn more about the importance of diversity in clinical trials. In our one-on-one, we learn what’s at stake and what solutions we can act on collectively.


Dr. Puckrein shares three critical considerations. First, we must identify the barriers that prevent diverse clinical trial participation. Second, he describes the bleak outlook if we do not increase diversity in clinical trials. Lastly, we discuss the path to empowerment that creates solutions to these problems.


Historically, clinical trials have been flawed. Different types of barriers prevent diverse participation. For example, in the 1990s, women were not recruited into trials on the assumption that they would react to medications the same way men did:


“Back in the 1990’s we didn’t recruit women into clinical trials and so there was a big struggle to make sure that clinical trials were diverse by gender. Back then the assumption was if you have a bunch of men in the trial, women would react the same way that men do to the medications or the disease pathology would be the same and so, why would you need to have women in trials?”


Likewise, during that time, REMG participation rates were low, around 3-5%. Trust is an essential barrier, with a negative historical context. A poignant example of this for African Americans is the Tuskegee experiment. Dr. Puckrein explains:


“In the African-American community, there are fears that came out of the Tuskegee experiment where therapy was withheld from African-Americans who were suffering from syphilis for no particular reason and it has an awful impact on their lives and so, that’s a deep scar in the African-American community about participating in clinical trials.”


Mistrust in Clinical Trials is Systemic

Native American and Hispanic American communities have their own stories of mistrust in clinical trials.


The preexisting inequities in our healthcare system is another barrier, and a systemic one. Statistically, most REMGs don’t have access to basic healthcare, let alone resources to participate in clinical trials. Dr. Puckrein shares staggering data, “before the Affordable Care Act about 48% of African-Americans had no health insurance, about 54% of Hispanics had no health insurance.”


Furthermore, someone may be considered ineligible for a clinical trial if they already have existing health conditions. According to Dr. Puckrein, “REMGs were disproportionately excluded from some clinical trials based on either prior cancers, comorbidities, other things that may not have clinical implications.”


Outcome Risks If Barriers Aren’t Eliminated?

Without diversity in clinical trials, we risk collecting homogenized data which does not include the larger genomic context necessary to understand and improve precision medicine for everyone. It’s important that we make clinical trials all-inclusive, as Dr. Puckrein points out:


“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”


The stakes are high because the future of our health depends on inclusivity right now. Clinical trials awareness needs to extend beyond a month of awareness. We don’t want today’s diseases to adversely affect generations to come. What then is a viable solution to this dilemma?


How Can We Learn and Take Action?

First. Get informed. Understand the larger historical context and intentions of clinical trials.


Second. Share this information by creating learning communities. Dr. Puckrein gives an example:


“If you bring physicians and patient advocacy groups, the policy makers and others around the table, you can solve problems like that and solve them quickly and inform the healthcare system so it’s interactive, it’s constantly learning. And so, we encourage people to build those – make them data driven. Use the data to help guide you on what interventions will work and how you’ll get the best possible outcome for patients.”


Third. Act. If you want to explore options in your treatment, seek out resources that embrace diversity in clinical trials. The “All of Us” Program is a public health initiative designed to remove the barriers that prevent inclusive access. As Dr. Puckrein highlights,

“The “All of Us” program is really designed to address that problem, to take populations that have not historically been in clinical trials — and now we include senior populations in that list as well — and make sure that we’re gaining signs in research about those populations. And so, the “All of Us” program is really designed to fill a big scientific gap in our knowledge.”


Furthermore, it is crucial to engage early with community leaders and grassroots organizations that resonate with underrepresented patients, and to encourage their participation in the critical stages of research.


Seeking knowledge, joining a community of advocates, and taking collective action is key to making a difference for all of us.

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