By Jeremy T. Goldbach, Ph.D., LMSW
Associate Professor
Chair, USC Social Behavioral Institutional Review Board
Director, Center for LGBT Health Equity
Pronouns: He/Him
University of Southern California
Suzanne Dworak-Peck School of Social Work

I remember it like yesterday. I stepped into the small, cramped meeting room of a local LGBTQ drop-in center. The room served triple duty as a social milieu, computer lab, and meeting room. Posters and homemade art covered the walls, displayed proudly everywhere the eye could see like wallpaper, almost demanding inspiration and hope from passive onlookers. The warm room, paired with the anxiety that no title or position can ever seem to overcome, made my hands clammy. I had arrived seeking feedback on an intervention we had been developing for nearly a decade. Bracing myself for the brutal honesty only found in adolescence, I opened the floor. “So, what do you think?”

Silence. I thought back to my lessons on pedagogy—it takes people an average of seven seconds to respond to a question, Jeremy. Relax. One … Two … Three. More silence. I could feel my carpe diem moment slipping away, so I looked awkwardly to the posters for solace and inspiration.

“Well—.” Someone finally spoke. Relief. “We talked a bit before this meeting, and we are trying to understand. Why do you only seem to want to talk about the bad things that happen to us, when there is so much good, too? We come to this center to be affirmed. I mean, look around—it’s literally all over the walls.” They pointed to the posters I had sought refuge in earlier, which now seemed to mock me.

I didn’t know how to answer. I had spent my entire career to this point so focused on the disparities that LGBTQ+ youth experience, it was difficult to even begin to consider the good things in their lives. Indeed, my own work (and that of many others) has found copious evidence of the stigmatizing, discriminatory, and violent experiences these youth encounter every day and the resulting impact on their health. Like many others, I have drawn on my own experiences growing up a gay kid who was told that being gay meant never being happy and probably dying a lonely death (a narrative I still write at times).

But they were right. Despite all the negative and heartbreaking things we have been programmed to study in this deficit-based world, there are good people out there: parents, teachers, mentors, and even school systems trying to make a difference and pass good policies to protect LGBTQ+ youth and enhance their health and well-being. The problem is, we’ve spent so much time trying to understand the things that do damage, we still know almost nothing about the programs, practices, and policies that promote resilience and safety.

Our research on the effects of the COVID-19-related quarantine show this, too. Although many young people in our studies did report difficulty in family relationships and isolation from supportive peers, this wasn’t always the case. Many described being home as a reprieve from their challenging experiences at school, where the safety of their family (and ready access to a private restroom) ensured they could avoid navigating a highly stressful learning environment. As one youth told us recently, “Me and my family…have been taking walks every other day or so. I think I’ve actually gotten closer to my parents from this.” Similarly, in meetings with local schools, one superintendent said, “We want to support our students, but someone has to tell us how!”

So, the question remains: how do we learn from these unprecedented times, not only to confirm what is wrong in the world, but also to explore what is right? For my sake, at least, I’m trying to regularly remind myself that although it is true that LGBTQ+ youth need support when they experience stigma, violence, and victimization, life is not all bad. Youth live in a dynamic world now, where stress and resilience commingle to create the fabric of their lives. And to support them in their journey, we need to understand all facets of their experience—certainly the painful and difficult ordeals, but also the life-affirming, wholesome, and supportive moments that bring them joy and hope.

Hurricane season starts on June 1. Tracking of storms that are formed along the Northwestern coast of Africa moving westward, and predictive models of increasing wind force and rain are the norm in every daily news in the Caribbean during this time of the year. Perhaps, the ships that brought our enslaved ancestors from different regions of Africa, and from different parts of Europe, the Middle East and Asia navigated the same routes of these tropical storms. And those may be the same routes that our other ancestors, those who had lived millennia on this side of the globe, navigated when facing seasonal changes in nature, wars and survival in paradise. All those peoples, all those ancestries met and blended In the New World and gave us a rich inheritance of history, traditions, and health.

The indigenous people of my archipelago named my land Borikén – the land of the mighty Lord- where they worshiped the god Yukiyú. Yet, they anticipated the devastation after the almost annual ravages caused by the evil god Juracán, where the name hurricane comes from. Hurricane season brings remote and very recent memories of our fragility and resilience. Hurricane season also brings memories of school days off (¡Qué chévere! Nice!), doing homework under the candle lights and eating canned tuna and soda crackers while waiting for electricity to be restored. It also reminds us that catastrophic events like hurricanes can impact our physical surroundings and our physical health.

Right before the end of the hurricane season comes Thanksgiving, the preamble to our traditionally long Puerto Rican Christmas season: parrandas (impromptu gathering of friends or relatives caroling house to house throughout the night), and of course, preparing and eating food beyond January 6… music, food and drink learned from our ancestors that feed our souls and make our bodies happy…so happy and so sweet.

Whether diabetes (and especially type 2 diabetes) is hereditary has been a question that both patients and their families want to understand. Clinicians and researchers aim to find answers about the causes of diabetes through human genetics, the science of studying how certain characteristics are passed through generations of a family.

A recently published study has identified new locations and variations in the DNA sequence of the human genome that could potentially explain how our blood glucose and other diagnostic markers for diabetes, including hemoglobin A1c and insulin levels, relate to our risk of developing diabetes. This major effort was coordinated by a group of more than 400 researchers participating in the Meta-Analysis of Glucose and Insulin-related Traits Consortium (MAGIC). The investigators reanalyzed data from over 200 studies that had collected health and genetic data from a large diverse group of more than 280,000 participants from European, East Asian, South Asian, Hispanic/Latino, African American, and Sub-Sharan African ancestries. One of the studies included in MAGIC’s analysis was the NIMHD supported Hispanic Community Health Study/Study of Latinos, also known as the SOL study—the most comprehensive study of Hispanic/Latino health in the United States.

How is this study different from other genetic research studies?
Previously, most genetic research studies on diabetes and other chronic diseases were performed primarily in people of European ancestry. The MAGIC’s analysis was different in two ways.

1. In the recent past, most (>75%) genetic research studies like this one focused on European populations (ref). The total number of participants from minority groups whose data were included in the MAGIC’s study was 30%, which is a remarkable inclusion effort (ref).
2. Secondly, the MAGIC’s analysis searched for multiple DNA differences throughout participants’ DNA that could explain elevation and regulation of blood glucose, insulin, and hemoglobin A1c levels in groups of people who were born outside Europe.

What does this mean to us?
The MAGIC investigators identified 99 new locations and variants in the human genome that could contribute to one’s risk for diabetes. Moreover, 24 of those 99 new variants were discovered thanks to data from research participants outside Europe. For instance, some of those variants could explain increases in hemoglobin A1c and diabetes in persons of African American ancestry. Other variants could increase blood levels of glucose, insulin, or hemoglobin A1c levels by regulating the expression of glucose-related genes acting in different organs and tissues like the pancreas, fat tissue under the skin or inside the abdominal cavity, muscles, and liver.

MAGIC is an example of the importance of the participation of persons from minority groups in biomedical research. Simply put, the more of us who participate in clinical research, the more information we will learn about how to successfully prevent and treat conditions that disproportionately affect racial and ethnic minorities. In fact, our participation makes an even bigger impact than our proportion of the population – our ancestry is powerful.

Does this mean that our genes solely determine our risk for diabetes?
Not necessarily. Some scholars have proposed that extraordinary events that affect large numbers of individuals at once, like hurricanes and famine, are associated with increased incidence of diabetes and other chronic diseases in later generations. On the other hand, the Diabetes Prevention Program demonstrated that even individuals with genetic codes linked to increased risk for diabetes could put the onset of the disease on hold with daily moderate physical activity.

As we move into the hurricane season, preparedness and prevention come to mind. Preparing our homes in anticipation for power outages, getting medications and supplies filled and well stored so they are not ruined, and seeking shelter or moving with family or friends while the crisis passes. Keeping our spirits up and our bodies moving (this is great time to dance! ¡A bailar!). As we learn from recent experience and from our heritage, let’s celebrate life and health.

“Dr. Avilés-Santa would like to thank her colleague Dr. George Papanicolaou, genetic epidemiologist, for proposing and leading the genetic analyses efforts in the HCHS/SOL when he worked at NHLBI, and his valuable comments for this blog.”

References
Landry L.G., Ali N., et al. (2018) Lack Of Diversity In Genomic Databases Is A Barrier To Translating Precision Medicine Research Into Practice. Health Affairs, (Millwood).

NOTE: NIMHD Insights is reposting this op-ed piece with permission from the Health Affairs Blog. It is written by the Director of NIH’s National Institute on Drug Abuse (NIDA), Dr. Nora D. Volkow, and is available in Spanish on the NIDA website.

NIDA Director, Dr. Nora Volkow wants to move from punishment to treatment for substance use disorders.

By Nora D. Volkow, M.D.
Director of the National Institute on Drug Abuse

The COVID-19 pandemic has highlighted the large racial health disparities in the United States. Black Americans have experienced worse outcomes during the pandemic, continue to die at a greater rate than White Americans, and also suffer disproportionately from a wide range of other acute and chronic illnesses. These disparities are particularly stark in the field of substance use and substance use disorders, where entrenched punitive approaches have exacerbated stigma and made it hard to implement appropriate medical care. Abundant data show that Black people and other communities of color have been disproportionately harmed by decades of addressing drug use as a crime rather than as a matter of public health.

We have known for decades that addiction is a medical condition—a treatable brain disorder—not a character flaw or a form of social deviance. Yet, despite the overwhelming evidence supporting that position, drug addiction continues to be criminalized. The U.S. must take a public health approach to drug addiction now, in the interest of both population well-being and health equity.

Inequitable Enforcement
Although statistics vary by drug type, overall, White and Black people do not significantly differ in their use of drugs, yet the legal consequences they face are often very different. Even though they use cannabis at similar rates, for instance, Black people were nearly four times more likely to be arrested for cannabis possession than White people in 2018. Of the 277,000 people imprisoned nationwide for a drug offense in 2013, more than half (56 percent) were African American or Latino even though together those groups accounted for about a quarter of the U.S. population.

During the early years of the opioid crisis in this century, arrests for heroin greatly exceeded those for diverted prescription opioids, even though the latter—which were predominantly used by White people—were more widely misused. It is well known that during the crack cocaine epidemic in the 1980s, much harsher penalties were imposed for crack (or freebase) cocaine, which had high rates of use in urban communities of color, than for powder cocaine, even though they are two forms of the same drug. These are just a few examples of the kinds of racial discrimination that have long been associated with drug laws and their policing.

Ineffective Punishment
Drug use continues to be penalized, despite the fact that punishment does not ameliorate substance use disorders or related problems. One analysis by the Pew Charitable Trusts found no statistically significant relationship between state drug imprisonment rates and three indicators of state drug problems: self-reported drug use, drug overdose deaths, and drug arrests.

Imprisonment, whether for drug or other offenses, actually leads to much higher risk of drug overdose upon release. More than half of people in prison have an untreated substance use disorder, and illicit drug and medication use typically greatly increases following a period of imprisonment. When it involves an untreated opioid use disorder, relapse to drug use can be fatal due to loss of opioid tolerance that may have occurred while the person was incarcerated.

Inequitable Access to Treatment
While the opioid crisis has triggered some efforts to move away from punishment toward addressing addiction as a matter of public health, the application of a public health strategy to drug misuse remains unevenly distributed by race/ethnicity. Compared to White people, Black and Hispanic people are more likely to be imprisoned after drug arrests than to be diverted into treatment programs.

Also, a 2018 study in Florida found that African Americans seeking addiction treatment experienced significant delays entering treatment (four to five years) compared to Whites, leading to greater progression of substance use disorders, poorer treatment outcomes, and increased rates of overdose. These delays could not be attributed to socioeconomic status alone. Studies have shown that Black youth with opioid use disorder are significantly less likely than White peers to be prescribed medication treatment (42 percent less likely in one study, 49 percent in another) and that Black patients with opioid use disorder are 77 percent less likely than White patients to receive the opioid addiction medication buprenorphine.

A Vicious Cycle of Punishment
The damaging impacts of punishment for drug possession that disproportionately impact Black lives are wide ranging. Imprisonment leads to isolation, an exacerbating factor for drug misuse, addiction, and relapse. It also raises the risk of early death from a wide variety of causes.

Besides leading to incarceration, an arrest for possession of even a small amount of cannabis—a much more common outcome for Black youth than White youth—can leave the individual with a criminal record that severely limits their future opportunities such as higher education and employment. This excess burden of felony drug convictions and imprisonment has radiating impacts on Black children and families. Parents who are arrested can lose custody of their children, entering the latter into the child welfare system. According to another analysis by the Pew Charitable Trusts, one in nine African American children (11.4 percent) and 1 in 28 Hispanic children (3.5 percent) have an incarcerated parent, compared to one in 57 White children (1.8 percent).

This burden reinforces poverty by limiting upward mobility through impeded access to employment, housing, higher education, and eligibility to vote. It also harms the health of the incarcerated, their non-incarcerated family members, and their communities.

Moving Toward A Public Health Approach
Five years ago, the 193 member nations of the United Nations General Assembly Special Session on drugs unanimously voted to recognize the need to approach substance use disorders as public health issues rather than punishing them as criminal offenses. Research is urgently needed to establish the effectiveness and impact of public health–based alternatives to criminalization, ranging from drug courts and other diversion programs to policies decriminalizing drug possession.

In addition to policy research, proactive research is needed to address the racial disparities related to drug use and addiction. From the opioid crisis, we have learned that large research initiatives can be mounted that engage multiple stakeholders—including the justice system (courts, prisons, jails) and the health care system—to cooperate toward the common purpose of reducing a devastating health problem. From the COVID-19 crisis, we have learned that the research enterprise can adapt and rapidly mobilize to address critical threats. These lessons can be applied to reduce systemic inequities in how addiction is addressed and to advance access to high-quality addiction care for all people who need it, whatever their race or background.

With this in mind, the National Institute on Drug Abuse is redoubling its focus on vulnerabilities and progression of substance use and addiction in minority populations. We are exploring research partnerships with state and local agencies and private health systems to develop ways to eliminate systemic barriers to addiction care. We are also funding research on the effects of alternative models of regulating and decriminalizing drugs in parts of the world where such natural experiments are already occurring.

People with substance use disorders need treatment, not punishment, and drug use disorders should be approached with a demand for high-quality care and with compassion for those affected. With a will to achieve racial equity in delivering compassionate treatment and the ability to use science to guide us toward more equitable models of addressing addiction, I believe such a goal is achievable.

By Gilbert C. Gee, Ph.D.
Professor, Department of Community Health Sciences
UCLA Fielding School of Public Health
University of California, Los Angeles

The rise of COVID-19 coincided with a rise in reports about anti-Asian hate incidents in the U.S. and around the world in 2020. Analyses of social media data showed a massive 17,000% increase in negative sentiment against Asians that correlated with our former president’s infamous use of the phrase “China virus” in March of 2020, which directly contradicted calls by public health officials to use neutral terms such as “COVID-19.” ¹ Other research confirms these trends².

In response to the rising hate incidents, community groups created new reporting systems, such as stopaapihate.org, which sought to document hate incidents. New voices emerged from academics, politicians, actors/actresses and others who have condemned these incidents. And refreshingly, the news media have begun to write about anti-Asian hate incidents — in years past, such reports were far more likely to remain invisible.

Yet, here we are a year later, facing the same issues.

What this demonstrates is that we have poor infrastructure for capturing oppression. The formal channels for documenting hate incidents were viewed as inadequate. Members of the community felt that anti-Asian incidents were not taken seriously by authorities, a problem that was compounded by language barriers. Accordingly, the Asian American community had to create new ways to document hate incidents themselves. Much has been done over this past year.

And yet, we run the risk of making a few mistakes:

The first mistake is equating hate crimes with the face of racism. Certainly, hate crimes are life changing. A single assault is one too many. Even minor slights can affect both physical and mental health.³ Yet, their presence should not be the only reason, or the only time, we think about racism. We often assume that all is well if there are no reports of hate crime victims, such as Vincent Chin, Breonna Taylor, George Floyd, or Vicha Ratanapakdee. That assumption is a deadly mistake.

The second mistake is assuming that a single politician, social group, or entity is the cause of racial problems. But that view is too simplistic. It lets the rest of society—including ourselves—off the hook. Structural racism is not about racist individuals or groups. It is about how the entire organization of society is built to enshrine white supremacy. So, yes, we should hold people and groups accountable for their actions, but we should not stop there. We should view all of the machinery of society, including our laws, policies, and informal actions as having inequality built into its equilibrium.⁴ Unraveling racism means attending to all these interconnected systems. We should not simply focus on perpetrators of hate crimes who are enabled by the system to be seen as bad apples having bad days. We need to acknowledge that the rot is systemic. And, we need to encourage the brightest thinkers to find new solutions.

The third mistake is holding our tongues because so many times in the past, our voices were ignored or invalidated. These invalidations often arise due to Asians erroneously being perceived as a model minority (being economically successful and healthy, which is not true).⁵ Sometimes, these perceptions become internalized. I have heard many fellow Asian Americans say, “I don’t have a right to talk about racism against me; others have it worse.” Such guilt is the work of structural racism, which encourages complicity with the status quo. That is, silence signals consent to oppression. Let us not make these mistakes. Let us own our experiences that are earned, just, and deserved. And more importantly, let us raise our voices to express outrage, in high resonance to shatter the structure of inequality.

Asian American and Pacific Islander (AAPI) Heritage Month is not only about celebrating our heritage. It is about honoring every one of us who had to endure the “where are you from” question, or the “you don’t act like other Asians.” It is also about recognizing those who were deported, falsely accused, or murdered. And it about those whose own modest lives tipped the scales a fraction towards equality, including Wong Kim Ark, Kinney Kimmon Lau, Grace Lee Boggs, and Yuri Kochiyama, who, if you don’t know, you should look up.

Finally, it is a living history that will be written by our children, who we hope will inherit a healthier, civil, and just society.

References

1. Hswen, Y., et al. (2021) Association of “#covid19” Versus “#chinesevirus” With Anti-Asian Sentiments on Twitter: March 9–23, 2020. American Journal of Public Health, 0, e1-9.
2. Thu, N.GT., et al (2020) Exploring U.S. Shifts in Anti-Asian Sentiment with the Emergence of COVID-19. International Journal of Environmental Research and Public Health.
3. Cheah, C.S.L., et al. (2020) COVID-19 Racism and Mental Health in Chinese American Families. Pediatrics. 2020 Nov;146(5):e2020021816.
4. Gee, G.C., Hicken M., (in press). Structural Racism: The Rules and Relations of Inequity. Ethnicity and Disease.
5. Wing, J. Y., (2007). Beyond Black and White: The Model Minority Myth and the Invisibility of Asian American Students. The Urban Review, Vol. 39, No. 4.

NOTE: For National Minority Health Month, NIMHD Insights Blog is sharing this timely op-ed that was printed with permission from the Houston Chronicle from former and founding Director of NIH’s National Institute of Biomedical Imaging and Bioengineering, Dr. Roderic I. Pettigrew.

By Roderic I. Pettigrew, Ph.D., M.D.
CEO of Engineering Health
Executive Dean of Engineering Medicine
Texas A&M University and Houston Methodist Hospital
Former and Founding Director, National Institute of Biomedical Imaging and Bioengineering

When it was first announced that a COVID-19 vaccine was authorized for emergency use by the Federal Drug Administration in the United States, the scientific community was finally able to exhale. As a Black physician and member of the scientific community, I was particularly encouraged because of the disproportionately higher rates of hospitalizations and deaths from COVID-19 among the Hispanic, Black, and Indigenous American populations.

My relief, however, was short-lived. We continue to see troubling inequities with new reports showing that many people from the minority community are among the lowest currently receiving the new vaccines, and the highest to be hesitant about its safety and effectiveness. According to Pew Research Center¹, just 42 percent of Black adults are inclined to get vaccinated, compared to 63 percent of white adults and 83 percent of adult Asian Americans.

The hesitation to get vaccinated is certainly understandable. Minorities have for centuries experienced egregious experimentation without consent.² From J. Marion Sims, who used enslaved Black women as test subjects, to the federally sponsored and secretive Tuskegee study where treatment for syphilis was intentionally withheld, and the more recent unconsented use of tissue and cells taken from Henrietta Lacks while a cancer patient, Black America’s relationship to science and research has been in multiple instances exploitative and inhumane.

But this vaccine is not another Tuskegee. Looking at the preliminary data on who is getting vaccinated tells us that. News reports³ to date indicate that those who are majority persons and wealthy, including some from outside of the U.S., are quite active in pursuing vaccinations in America. National results show that Black people were inoculated at levels far below their share of the population. At the end of January, composite data⁴ shows that less than 5 percent of the vaccinations had been administered to Black people.

There is no doubt that the lack of equity in access is also playing a role in such low vaccination numbers. Currently, Black residents are significantly more likely than whites to live more than a mile from the closest vaccination facility⁵. Online portals and phone applications have been popular tools deployed across states to schedule vaccinations. But this leaves those who fall into “digital divides” and “app gaps” behind.

However, these challenges should not be compounded with fear. Some say that they want to wait and see if anything adverse happens to others who were vaccinated. This is a reasonable initial thought, but it should be weighed against the science, the demonstrated use and the clear risks. The science, conducted in tens of thousands of people of multiple ethnicities in multiple countries, shows a strong safety profile. Moreover, unlike the Tuskegee experiments, those advocating, conducting, and overseeing the vaccination studies are among the first in line to take the COVID-19 vaccine themselves. In Tuskegee, known curative treatment was withheld from Black patients. Now the effort is to deliver preventative vaccines. White Americans are getting these at disproportionate rates while underrepresented people are disproportionately bearing the brunt of the COVID-19 illnesses.

I chose to get the vaccine because I know and trust this science. At the same time, I recognize the logical concerns about the safety of the vaccine in a process that was indeed accelerated. While this vaccine was created unusually fast, the speed is the result of technological innovations that have actually been in development for two decades, supported by the National Institutes of Health and the Defense Advanced Research Projects Agency. In addition, there has been new federal economic support for more COVID-19 focused development and manufacturing processes in parallel. Now, as the country passes more than half a million dead, we have a means to stop this death toll.

Indeed, people of color have the most to lose in the fight against this virus, and therefore, the most to gain by getting vaccinated. Now we can take advantage of the very best that modern medical science has to offer. The weight of the evidence is overwhelmingly clear for all people. Everyone eligible should get the vaccine when it is available for you to do so.

To improve equity in access to the vaccine, leaders in government and all sectors of industry must work to reach our most vulnerable groups where they are located. This is working now in the extremes of Alaska, which leads the nation in vaccination rates⁶ despite much of the Native population being in remote and isolated communities. For underserved populations nationally, this means direct communication, not phone apps. It means purposeful targeting and collaborations with community churches, barber shops, Federally Qualified Health Centers, and community health centers. It means vaccination hubs and providers placed in the underserved areas of Houston. It means equipping the most trusted figures in minority communities with the best information to counter the myths. And it means closely monitoring vaccination assignment and delivery to ensure equitable inclusion. For minorities, this is indeed urgent.

References

1. Funk, C., Tyson, A. (2020). Intent to Get a COVID-19 Vaccine Rises to 60% as Confidence in Research and Development Process Increases. Pew Research Center Science and Society. Retrieved from https://www.pewresearch.org/science/2020/12/03/intent-to-get-a-covid-19-vaccine-rises-to-60-as-confidence-in-research-and-development-process-increases/
2. Simmons, M., Gaston, D. (2021). Why so many Black patients’ distrust Covid-19 vaccines (and 3 ways to rebuild their trust). Advisory Board. Retrieved from https://www.advisory.com/blog/2021/02/vaccine-distrust?utm_source=blog&utm_medium=email&utm_campaign=2021Feb05&utm_content=PN_x_x_x_x_x_x&elq_cid=1597138&x_id=003C000001jqUdfIAE
3. Siemaszko, C. (2021). Vaccine tourism on the rise as wealthy international tourists eye an opportunity in the U.S.(2021, January 25) Retrieved from https://www.nbcnews.com/news/us-news/vaccine-tourism-rise-wealthy-international-tourists-eye-opportunity-u-s-n1255531
4. Painter E., et al., Painter E., et al. Demographic Characteristics of Persons Vaccinated During the First Month of the COVID-19 Vaccination Program – United States, December 14, 2020-January 14, 2021. Morb Mortal Wkly Rep. 2021 Feb 5.
5. Where Black Americans Will Travel Father Than Whites for COVID-19 Vaccination. (2021, February 4) Retrieved from https://publichealth.pitt.edu/news/details/articleid/8741/where-black-americans-will-travel-farther-than-whites-for-covid-19-vaccination.
6. The Rural Alaskan Towns Leading the Country in Vaccine Distribution. (2021, February 21). Retrieved from https://www.newyorker.com/news/dispatch/the-rural-alaskan-towns-leading-the-country-in-vaccine-distribution

By Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

On March 1, NIH Director Francis S. Collins, M.D., Ph.D., announced the launch of UNITE, a new NIH initiative aimed at bringing an end to structural racism in biomedical research. In his statement, Dr. Collins recalled the agency’s longstanding support of programs to expand the diversity of the scientific workforce, but he acknowledged shortfalls in NIH’s efforts to bring “…diverse perspectives, backgrounds, and skillsets to complex scientific problems.” As the Director of NIMHD, I enthusiastically endorse this newly stated goal for NIH to address, manage and eliminate systemic racism and discrimination embedded in policies and practices in the biomedical research enterprise. Since its beginnings as an Office more than three decades ago, NIMHD has promoted and supported the recruitment and training of a diverse workforce as part of its mission in research and training. We will continue that work while contributing our knowledge, experience, training programs, and tools to our collective goal of ending structural racism and discrimination, by building a biomedical workforce that reflects the populations we serve at all levels of authority within NIH and in our grantee institutions.

Our mission at NIMHD is more important now than ever as the ongoing COVID-19 pandemic underscores the harsh reality of how health disparities shift the burden of illness, disability, and death onto certain segments of our population. The excess case rate, hospitalizations and deaths from COVID-19 among African Americans, Latinos/as, American Indians and Pacific Islanders are two to three times that of White Americans a year into the pandemic. The magnitude of this disparity is truly unparalleled in the past 50 years and the root cause lies in structural inequities that our society has tolerated far too long. Racism and discrimination affect all Americans and no group is left untouched by the structural inequities that perpetuate these. At NIH our currency is scientific innovation and productivity and the time has come for these efforts to address the vexing challenges of racism and discrimination.

Exposure to racism and discrimination on the individual level is often overt, horrifying and destructive. More subtle forms of ongoing interpersonal racist and discriminatory acts are common and according to the Kaiser Family Foundation/CNN Survey of Americans on Race, when asked about their experience with racism and discrimination within the past month 53% of African Americans and 36% of Latinos reported being treated unfairly because of their race. These acts represent a form of chronic cumulative stress that wears on one’s health and may actually intensify among African Americans and Latinos/as they move up the socioeconomic ladder and experience being “the only one in the room”. NIH-funded researchers have examined the effects of interpersonal racism and discrimination and found significant associations on mental health symptoms, substance use behavior, cardiovascular events and overall physical function. However, the consequences reflected in the pandemic are derived from the ingrained racist practices, laws, policies, and social norms that have underpinned American society since the founding of the Republic. No matter what you call it — structural racism, systemic racism, institutional racism — this form of racism and discrimination crushes hopes and limits potential on a daily basis, but it usually lurks just below the surface. Structural racism and discrimination exist to perpetuate the status quo, to create a culture of inferiority among some and elevate barriers to protect those in power.

People who have not experienced the cruel effects of structural racism have acclimated to it, tolerated it, and even benefited from it. The striking inequality revealed by the pandemic and the social unrest events of 2020 have again brought inequities to light. The unfairness can no longer be ignored: We must identify, modify or eradicate policies that support structural racism wherever it exists. As a nation, we need to reverse practices and norms that have blocked people and entire communities from accessing what most of us take for granted: affordable housing, quality public education, access to health care, living wage for all, job and career opportunities, equal police protection, and the ability to live without fear of discrimination, harassment, and violence. As a major funder of research and as an entity that influences policy and public health practices through scientific discovery, NIH has a unique and important responsibility to identify and address structural racism and end racial inequities in the biomedical research enterprise. NIMHD is committed to lead the scientific efforts to develop, implement and evaluate interventions to manage, reduce and eliminate structural racism and discrimination.

NIMHD envisions an America in which all populations will have an equal opportunity to live long, healthy, and productive lives. As the director of NIMHD, I am proud of our Institute’s hard work and accomplishments that are contributing to a more diverse research workforce through outreach, grant opportunities, training resources, and programs such as the Health Disparities Research Institute, Research Centers in Minority Institutions, and Loan Repayment Program. NIMHD’s leaders, including Deputy Director Monica Webb Hooper, Ph.D., and Anna María Nápoles, Ph.D., M.P.H., scientific director of the Division of Intramural Research, have been supporting the UNITE work as co-chairs of two committees.

Through the UNITE initiative, NIH is focusing on ending structural racism in biomedical research, but the work will be neither simple nor quick. Through our long experience in creating a diverse research workforce, we know that more hard work lies ahead. NIH has also issued a Request for Information seeking public input on practical and effective approaches to improve and strengthen racial equity, diversity, and inclusion within NIH and the external community and to expand research to eliminate or lessen health disparities and inequities. We invite you to share your perspective and recommendations by April 23, 2021, as we thoughtfully consider NIH’s approach to address racial and health inequities. Comments can be submitted through the submission website. As Dr. Collins said, “Identifying and dismantling racist components of a system that has been hundreds of years in the making is no easy task.” NIH is taking on this challenge. We must do better. We will do better.

Black History Month

By L. Ebony Boulware, M.D., M.P.H.
Chief, Division of General Internal Medicine, Department of Medicine
Director, Duke Clinical and Translational Science Institute
Duke University School of Medicine

Recent events compel us to reckon, yet again, with the ongoing legacy of systemic racism in the U.S. The merciless murders of George Floyd, Ahmaud Arbery, Breonna Taylor, and countless other Black individuals through police violence reflect an epidemic of brutality that manifests ongoing and profound racially mediated structural social inequities in the U.S. Compounding this, the recent higher COVID-19 death rates among Black and Hispanic communities have made it clear that race-based structural inequities are directly tied to poor health and further threaten the lives of Black and other minoritized individuals.¹ These intersecting realities have brought many in the fields of science and medicine to consider how race and racism are harmfully operationalized through many aspects of our collective experiences.

I have spent my career investigating race disparities in kidney failure, a condition for which Black Americans have two to threefold greater risk compared to others. Black Americans’ increased risk of kidney failure is compounded by significant race-based inequities in their health care, including 1) suboptimal prevention, 2) delayed recognition and treatment for kidney disease risk factors, 3) lack of access to health care, 4) poor referrals for evidence-based health care, 5) poorer quality dialysis treatment, and 6) lower rates of kidney transplantation.

In 1999, researchers developed the Modification of Diet in Renal Disease (MDRD) equation to estimate kidney function.² Investigators hypothesized the existence of a biological difference in kidney function among Black individuals compared to individuals from all other racial and ethnic population groups, based on conventional wisdom and bolstered by weak evidence suggesting differences in Black individuals’ muscle mass compared to others. Despite the lack of a well-substantiated biological rationale for purported racial differences in kidney function, investigators placed a “correction factor” in the form of a coefficient into the equation. The coefficient systematically estimates all Blacks to have 21% better kidney function than non-Blacks.

Many have recently questioned the use of race-based equations in kidney care and are examining the equations’ potentially harmful contribution to kidney health racial inequities. Two national organizations have developed a task force to consider whether racialized equations should be removed from kidney care altogether. Meanwhile, several U.S. health care systems seeking to embrace anti-racist practices in medicine have independently decided to eliminate the use of these algorithms from their workflows.

The growing evidence suggests that racialized medical algorithms may contribute to numerous inequities in the medical treatment of Black individuals who are already at increased risk of kidney failure. This has generated recognition that faulty assumptions in science and medicine about race may indeed have negative and systemically racist effects on health care delivery for large populations of Black individuals who suffer inequities in kidney health and kidney care.

How can the scientific and medical community respond to the emerging recognition that our assumptions about race may lead to harm for the very individuals we seek to help? Many believe a fundamental rethinking of how we conceptualize race in the context of research and medical practice is in order. Several key concepts are essential to starting this process.

1. We must fully accept race as a non-biological construct based in harmful social ideology through which systemically racist policies and practices are justified.
2. We must further recognize that unsubstantiated assumptions regarding the biological nature of race have contaminated our scientific and medical reasoning in both subtle and profound ways with harmful results.
3. We must actively interrogate hypotheses, study designs, inferences, and medical practices that embrace race-based thinking.
4. We must seek to completely disavow ourselves from potentially racist assumptions.
5. We must also seek to overturn longstanding pedagogy in science, medical school, and professional training that perpetuate racist thinking.
6. We must shine a bright light on race and racism as essential contributors to generations of poor health and health inequities for Black and other minoritized individuals.
7. We must continually seek to illustrate how race and racism affect individuals’ and communities’ health.

By using our scientific and medical capabilities to generate and disseminate evidence on the precise mechanisms through which structural racism contributes to health inequities, we can target and dismantle harmful policies and practices. We must follow these initial steps with collective ongoing advocacy in our fields and engagement in our communities to ensure that the health of all individuals is promoted through equitable policies and practices.

Ultimately, it will only be through our careful and humble consideration of the legacy of race and racism in science and medicine that we will be able to meaningfully contribute to discoveries and changes in care necessary to eliminate health inequities across society.

NOTE:
Dr. Boulware also helped NIMHD celebrate Black History Month by presenting at the NIMHD Director’s Seminar Series (DSS) on February 4, 2021. Learn more about her presentation at the DSS website.

References

1. Williams A, Blanco A. How the coronavirus exposed health 12 disparities in communities of color. Updated May 26, 2020. 13 Accessed July 15, 2020. 14 https://www.washingtonpost.com/graphics/2020/investigati15 ons/coronavirus-race-data-map/
2. Levey AS, Bosch JP, Lewis JB, Greene T, Rogers N, Roth D. A more accurate method to estimate glomerular filtration rate from serum creatinine: a new prediction equation. Modification of Diet in Renal Disease Study Group. Ann Intern Med. 1999 Mar 16;130(6):461-70. doi: 10.7326/0003-4819-130-6-199903160-00002. PMID: 10075613

By Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities

In 2020, we celebrated NIMHD’s 10th anniversary as an institute at the National Institutes of Health. As the year began, we could not have foreseen the disruptions and devastation that a global pandemic would cause. Although many would say we could have predicted the exacerbation of health disparities among racial and ethnic minorities and all working people with the onset of COVID-19, its impact has revealed so much about the inequities within the fabric of our nation. While the nation (and the world) grappled with how best to deal with our new public health crisis, NIMHD pressed ahead to be a part of the solutions. We expanded the breadth and depth of our work with new collaborations, research programs and resources in support of our mission to improve minority health and reduce health disparities.

Before the pandemic shut the nation down, we were fortunate to hold NIMHD’s first scientific symposium, marking our milestone year, hosting over 2,000 in-person and virtual attendees. Focusing on themes of partnership, innovation, and the role of social and health determinants in health disparities, we created a path for further exploration and research initiatives.

On the COVID-19 response, we have co-led three prominent research initiatives to address disparities:

1. The Rapid Acceleration of Diagnostics in Underserved Populations (RADx-UP) program is designed to enable and enhance COVID-19 testing of underserved and vulnerable populations disproportionately affected by the disease. NIH funded 69 projects in 33 states, mostly focused on populations with health disparities. The Coordination and Data Collection Center (CDCC) was funded for four years at Duke University in North Carolina and will be managed by NIMHD.
2. The Social, Behavioral and Economic Consequences of the COVID-19 Pandemic is an NIH-wide initiative co-led by NIMHD, NIMH, NIA and OBSSR to support research projects on these issues. Through pooled resources from ten NIH Institutes and Centers and support from the Office of the Director, 52 projects were funded in FY 2020 and plans for new grants in FY 2021 are proceeding.
3. NIH Community Engagement Alliance (CEAL) Against COVID-19 Disparities is based on the premise of trust and truth in community engaged research. Knowing that African Americans, Latinos, American Indians, and Pacific Islanders account for over half of all reported coronavirus cases, hospitalizations, and deaths in the United States, it is critical that we meet these individuals and communities where they are through trusted leaders and scientifically based information for informed decision making. I co-lead this effort with Dr. Gary Gibbons, director of the National Heart, Lung, and Blood Institute.

Additionally, our scientific program staff quickly responded with new research initiatives seeking advances in digital healthcare, community interventions and long-term effects of disasters on health care systems serving health disparity populations. In December, we released a new initiative to address research in vaccine hesitancy, which focuses on the immediate issue of COVID-19, and will include other vaccine-preventable conditions such as influenza, hepatitis B and human papillomavirus.

In other key collaborations, the Institute is preparing for the next generation to advance novel research. We joined the National Institute of Biomedical Imaging and Bioengineering to host the 2020 Design by Biomedical Undergraduate (DEBUT) Challenge. NIMHD awarded the Healthcare Technologies for Low-Resource Settings Prize to Rice University for their Universal Obturator for Brachytherapy, a low-cost 3D printed device to help expand treatment of late-stage cervical cancer. We also co-lead a new NIH Common Fund program called Faculty Institutional Recruitment for Sustainable Transformation (FIRST) program, which invests in research faculty committed to promoting diversity and inclusive excellence in their respective institutions.

During our anniversary year we also launched activities in new research areas. Maternal health disparities are impacting African American and American Indian/Alaska Native communities at staggeringly high rates, where women in these groups are respectively 3.2 and 2.3 times more likely to die from pregnancy-related mortality than their White counterparts. New research is underway through six R01 grants co-funded with NHLBI and the NIH Office of Research on Women’s Health. In September we hosted The Role of Work in Health Disparities in the United States Scientific Workshop, to cover novel approaches and facilitate discussions on multilevel interventions to investigate work-based health disparities. This two-day virtual event engaged over 1,000 participants. Our Director’s Seminar Series continued with a lecture by Dr. Ricardo Muñoz in October and by David Williams in December. We look forward to hosting Dr. L. Ebony Boulware, whose presentation was postponed due to the pandemic, on February 4.

Research program collaborations across NIH also led to the development of the PhenX Social Determinants of Health (SDOH) Assessments Collection, which promotes the use of standard individual and structural measures of social determinants for health disparities research facilitating collection, use and analysis of research data for more common interpretation, use and potential implementation.

The social unrest we experienced in 2020 due to the structural inequities that have perpetuated racial, ethnic and socioeconomic disparities led to monumental response by Americans from all backgrounds. For me, this shows promise towards equity, particularly health equity for all. I added my voice to the conversations through a blog post mid-year. Demonstrations across the country show that many in America envision a country in which all populations have an equal opportunity to live long, healthy and productive lives. NIMHD is championing this promise through our Envisioning Health Equity Art Challenge which is open through February 5, 2021. I hope you will join us by submitting your interpretation of this vision.

By Gina Roussos, Ph.D.
Health Policy Analyst, Office of the Director
National Institute on Minority Health and Health Disparities