During the fervor of 2020’s massive uprisings against systemic racism in America and in the midst of the COVID-19 pandemic that has proven to be far deadlier and devastating to Black and Brown communities, activists and health leaders unleashed a powerful rallying cry: “Racism is a public health crisis!” This has always been true; and, today, society is beginning to reckon with the reality that Black women and Black LGBTQ people sit at the intersection of these dual public health crises.

No type of health care is more subject to the political whims of the elected class than what has been branded “women’s health.” But sexual and reproductive health is also a vital part of Black LGBTQ people’s health. Black LGBTQ people are affected by all repressive reproductive health policies and biased treatment of Black pregnant people.

In America, Black bodies are also inherently political. The history of this country was built on our bodies as vehicles for economic production and as a continuing labor force. To exercise control over our own bodies is to defy that history and the systems of economic and social oppression perpetuated over centuries. To be a Black woman or a Black LGBTQ person and do the same is to resist multiple currents of oppression.

When the COVID-19 pandemic hit the United States, governors in several states exploited the urgency of the situation to ban abortion — both surgical and medication-induced. No other medical procedure was so singled out. Over the course of their lifetime, one in four women in the U.S. has an abortion; and, for each woman, an abortion is time-sensitive and essential heath care. It cannot wait for politics or the end of a pandemic.

While many Black communities were bearing the brunt of COVID-19, politicians used this moment of panic to—again—limit control of our bodies. Whenever hurdles to health care are built, systemic racism and structural barriers ensure Black and Brown people are the first to lose access.

Health Depends on Much More Than Access

Access to medical care is just one factor in people’s health — and not even the most important factor. The social determinants of health — the conditions people live in and the forces and systems that create those conditions — can account for up to 90% of a person’s health status. That means how healthy you are depends more on whether or not you experience stressors like low wages or unemployment, food insecurity, unclean air or water, or unstable housing than on your access to a health care provider.

In the U.S., Black people are much more likely to experience these kinds of stressors. The country’s long history of anti-Black racism has created inequities in economic, educational, and health resources and led to discriminatory targeting of Black communities by law enforcement and the criminal justice system.

Last year, Planned Parenthood conducted research on the social determinants of health among women of reproductive age in an effort to better understand how we can serve our patients’ needs. Unsurprisingly, Black respondents report experiencing stressors that negatively affect their health more than white respondents. The Black Women’s Health Imperative, in partnership with the Black Women’s Health Study, published a report that showed a causal relationship between experiences of racial discrimination and uterine fibroid tumors, low birth weight babies, and maternal deaths.

The state of sexual and reproductive health for Black women and Black LGBTQ people cannot be separated from the way systemic racism manifests in their lives because their bodies bear the brunt.
 

The Statistics Tell the Story

The evidence is plain in the disparities we have long seen in sexual and reproductive health outcomes for Black women and Black LGBTQ people. In recent years, thanks to the leadership of reproductive justice movement leaders, and celebrities like Serena Williams and Beyoncé sharing their stories, the public has begun to hear how Black women’s experiences during childbirth differ greatly from those of white women, regardless of fame, income, or education levels. Black women suffer higher complication rates and are more than three times as likely to die of pregnancy- and childbirth-related causes.

But the chasm between Black women’s sexual and reproductive health and white women’s goes far beyond maternal mortality.

Many, including Madonna and New York Gov. Andrew Cuomo, have dubbed COVID-19  “the great equalizer.” This is, of course, far from the truth. Recent data from the  Centers for Disease Control and Prevention shows that Black and Latinx people are three times as likely to be infected and nearly twice as likely to die of COVID-19 than white people.

Because reproductive health care is not immune to racism and its stark disparities, we can expect Black women and Black LGBTQ people’s sexual and reproductive health to be deprioritized through the inequitable allocation of health care resources and the blatant and relentless political attacks on reproductive rights. As we suffer these deprivations, we must also endure the loss of family members, perform essential jobs, and try to make ends meet through an economic crisis that has hit Black communities the hardest.

Attacks on Reproductive Health

Black people in the U.S. are more likely than white people to have low incomes, be uninsured, or rely on federally funded programs to access reproductive health care. So when the Trump administration dismantled the nation’s only program dedicated to affordable family planning — including birth control and STI testing and treatment — it was an attack on Black women and Black LGBTQ people. The administration enacted a gag rule which blocks providers in the Title X family planning program from telling their patients how to access safe and legal abortion. As a result, providers that serve half of the 4 million people who rely on the program dropped out. This means even less care for communities already underserved by the health care system.

Abortion is an essential part of sexual and reproductive health care. In the last decade, attacks on abortion have resulted in less access, especially in the South and Midwest. State laws are written specifically to shame women for controlling their own bodies and subject them to paternalistic rules like waiting periods and mandatory, medically unnecessary ultrasounds. And the federal Hyde Amendment prohibits federal Medicaid funding from covering abortion, meaning those who have the least are forced to pay the most for their care.

The constitutional right to abortion is under constant threat. In June, the Supreme Court blocked a restrictive Louisiana law that would have made abortion all but inaccessible in the state. While this decision was widely—and rightly—praised as a victory for reproductive rights, with only three clinics providing abortion in the entire state, access will feel unavailable to many. Five states still have just one clinic providing this service. Just because abortion remains legal does not mean it remains accessible—especially for Black people in the South. But the promise of Roe v. Wade has never been real in many Black communities; factors like geography, poverty, discrimination, and shame have made our “choices” moot.

Progress to Protect

When the Affordable Care Act passed, it included a requirement that all health insurance plans cover birth control with no copay. In the first year alone, women saved $1.4 billion on birth control pills.

As states expanded Medicaid and the federal health insurance marketplace opened, uninsured rates among Black people dropped dramatically — from nearly 20% to 10.7% in 2016. Under the Trump administration, uninsured rates have ticked upward to 11.5%. Protecting the progress made under President Obama must continue to be a priority.

However, there is progress in the public’s understanding of inequity. Better data on maternal mortality put the threat to Black women’s lives in stark relief. The epidemic of violence against Black trans and gender nonconforming people is making its way into public consciousness. Black women and Black LGBTQ people are telling their own stories about abortion, pregnancy, and their treatment by the health care system.

We cannot fix what we cannot see. Bringing visibility to the ways sexual and reproductive autonomy is denied to Black women and Black LGBTQ people by our economic, social, and medical systems is the first step in rebuilding those systems equitably. 

Reproductive Rebellion

Any progress we have made in the last decade has come only because Black women and Black LGBTQ people organized. The reproductive justice movement rewrote the rules in the fight for autonomy, demanding more than “choice” but the economic, political, and social power to be able to raise families—should we choose—in safe and sustainable communities.

The fight for sexual and reproductive health for Black communities is not only waged at the Supreme Court. It is not only waged through civic participation. It is waged every time we must be on our guard and advocate for ourselves at the doctor’s office, state capitols, town halls, and in our own communities. This year, we took our fights to streets all across America, demanding that this country recognize, once and for all, that our lives matter.

For centuries, Black women and Black LGBTQ people have waged a reproductive rebellion, taking on all the forces that attempt to take ownership of our bodies from us. We have rebelled in small ways, making the decisions we know are right for ourselves and our families. We have also rebelled on a massive scale, demanding change in the halls of power to which we were not invited.

Now is the time to stand with and trust Black women and Black LGBTQ people. Now is the time to join the rebellion.

Many people were caught off guard as we witnessed rising inequities in the impact of COVID-19 on communities of color. Sadly, as a physician and public health researcher who has focused on addressing inequities in health for nearly three decades, these disparities came as no surprise to me. I direct the Johns Hopkins Center for Health Equity where my team and our healthcare and community partners collaborate to develop, test, and apply programs that alleviate health disparities and translate these programs into policy changes for community health benefits.  For us, the pandemic was simply shining a magnifying glass on structural racism as a public health issue. 

By February, the United States reported its first deaths from COVID-19, and it was not long before we began to see that African Americans, Latinos, and Native Americans were overrepresented among reported coronavirus infections and deaths. In New York City, for example, the predominantly ethnic minority neighborhoods of the Bronx had the most COVID-19 hospitalization and deaths, while the predominantly white borough of Manhattan had the lowest rates—despite being more densely populated. This pattern has been replicated across the country. On June 24, 2020, the American Public Media Research Lab reported that the COVID-19 mortality rate for Black Americans was about 2.3 times as high as the rate for whites and Asians, about twice as high as the Latino and Pacific Islander rate, and 1.5 times as high as the Indigenous rate. They also reported that Black Americans are dying above their population share in 29 out of 50 states and Washington, D.C. 

Structural inequities are reflected in the policies and structures that allow a dominant group in society, in our case, white persons and those with high levels of income to differentially allocate desirable opportunities and resources to groups regarded as inferior. In this country, the latter typically includes African Americans and other persons of color. Residential segregation, emerging from housing policies that originated in the early 1900s, is one important example of practices and policies that have shaped the health of African American and Native American populations. The impact of these racist policies endures in urban areas. To this day, neighborhoods that were “redlined” for Black residents and experienced the systematic elimination of key social and economic resources face a lack of access to healthy food, a strong education, gainful employment opportunities, safe physical and social environments, and high quality health care.

The psychological stress associated with these negative exposures, as well as pervasive interpersonal experiences of discrimination in education, employment, housing, public safety, criminal justice, and even health care, produce negative effects on biological processes and lead to poor physical and mental health. In fact, social science and public health research has linked these structural inequities to higher rates of infant mortality among African American and Native American babies, higher rates of asthma and obesity among African American children, higher rates of complications and deaths among pregnant women, and earlier onset of multiple chronic conditions such as obesity, hypertension, heart disease, diabetes, and cancers among African American adults, leading to premature death and disability. These same factors are now contributing to an overrepresentation of African Americans among hospitalizations, complications, and deaths from COVID-19. 

To address the effects of structural inequities during the pandemic in the short term, Dr. Josh Sharfstein, vice dean for Public Health Practice at Johns Hopkins Bloomberg School of Public Health, and I have suggested that local and national leaders do the following:

• track and monitor data on racial disparities in the impact of COVID-19;
• provide better access to testing and medical care;
• communicate in a trustworthy and respectful manner with communities of color;
• encourage employers to provide protective equipment and improve working conditions for essential and frontline workers (the majority of whom are people of color); and
• address the immediate risks these groups face with respect to stable housing, food security, digital access for education, and health care.

All of these strategies are needed to ensure that disadvantaged populations don’t continue to bear the greatest burden of the pandemic.

However, in the long term, the U.S. needs to engage in a much more comprehensive response to the impact of structural racism on our culture, our institutions, and on all people, but especially on people of color. Dr. David Williams, professor of Public Health, African-American Studies, and Sociology at Harvard University, and I have described three broad strategies to do this:

•  First, we have suggested that “communities of opportunity” should be developed to minimize the adverse effects of structural racism. This would mean creating communities that provide early childhood development resources, put policies in place to reduce childhood poverty, provide work opportunities and income support for adults, and ensure healthy housing and neighborhood conditions.
• Second, we suggested that the health care system needs new emphases on ensuring access to high quality care for all, strengthening preventive and primary care approaches, addressing patients’ social needs as part of health care delivery, and diversifying the health care work force to more closely reflect the demographic composition of the patient population.
• Third, we recommended new research to identify the best approaches to build political will and support to address social inequities in health. This could include initiatives to raise public awareness of the pervasiveness of health inequities and the connections between social factors and health; to build empathy and support for addressing inequities by telling the stories of people whose lives have been impacted (we have seen a great increase in this since the media has shone a bright light on the killings of Black people by police brutality and violence); and to enhance the capacity of individuals and communities to actively participate in efforts to address inequities at all levels.

The silver lining during these dark times is that this pandemic has revealed our shared vulnerability and our interconnectedness. Many people are beginning to see that when others don’t have the opportunity to be healthy, it puts all of us at risk. I am hopeful because I see the pandemic producing a shift in thinking among many as they acknowledge the disparity between the lives of white people and people of color in this country. As we have seen through the Black Lives Matter protests, many people are finally recognizing the inequities that are borne out of systemic racism, becoming motivated to speak and act for justice and change. We know now, more than ever, that everyone’s voice is important to bring about the change that we seek. The crises of the COVID-19 pandemic and police violence and killings of African Americans are forcing us to confront the injustices and eliminate the inequities that prevent us from living up to our stated ideals of “liberty and justice for all.”

Since the breakthrough discovery of insulin in the early 20th Century, diabetes has transformed from a deadly disease to a chronic but manageable condition. Innovations in science – leading to more effective insulins – and technological advances allowing for better monitoring have enabled people living with diabetes to more closely monitor their health.

At Lilly, we are dedicated to developing medicines for unmet needs, particularly for people facing barriers to accessing care and managing their conditions under the traditional in-office care model.

But in reality, medicines are not always enough to make life better for someone facing a chronic condition. Life is busy with obligations, and people can face any number of challenges that prevent them from consistently taking their medicines. A gap, however, exists between what a person needs to better manage their health and the potential of easing that burden through science and technology. Lilly is moving to fill that gap by going beyond medicines.

We are developing a new solution that could help people using insulin better manage their diabetes and more seamlessly monitor their care through the use of devices, software, and dosing support. We call it the Connected Diabetes Ecosystem (CDE). The idea of blending digital technology and medicine is not new, but the technologies that enable this have not existed until now. In the case of our Connected Diabetes Ecosystem, our hope is to bring solutions to people with diabetes and health care providers within the next two years.

The goal of these new solutions is to provide dosing support that does not exist today. Our hope is that these tools will improve outcomes for all people on insulin therapy. You can read more about this effort in the Wall Street Journal or on LinkedIn. Personalized and connected medicine, like what we envision with our CDE, offers potentially game-changing advances for people who have previously faced too many barriers to their individualized goals.

Diabetes is not easy to manage for many reasons, especially when insulin is needed. The possibilities to better equip people and improve health outcomes are substantial, with digital technology and data providing more effective tools and information at our fingertips. Lilly and others need to prove that technology can change life for people with diabetes, and we are committed to doing so. Now it is time to bring together digital technology and medicine to make that future possible.

President Barack Obama unveiled a new frontier in medical care with the announcement of an unprecedented commitment of federal resources directed at improving health and effectively treating disease during his January 2014 State of the Union Address.

The Precision Medicine Initiative sought to quicken the pace of availability of more advanced and effective “patient-centered” medical treatments to patients and their doctors. In the past, biomedical research often resorted to treatments based on the genetic and inherited characteristics of the “average person.” This cookie cutter approach to discovering new drugs and medical treatments far too often translated into the “average white person,” as the majority of clinical trial participants for testing new drugs includes very few people of color.

This lack of diversity can often mean that while medical products or treatments may be effective for a broad segment of the population, it may not be as safe for certain populations. Given the low enrollment of people of color in traditional clinical trial research, it is of real concern that African Americans, Latinos, and Asians may not realize sufficient benefit at a time when we know that stubborn health inequities and health disparities continue to challenge many communities throughout the United States.

So, does this new era of precision medicine hold any promise for ameliorating health disparities in communities of color? In some ways, this is both an open and existential question. It is certainly envisioned that new and better treatments for individuals from ethnically diverse and socioeconomically challenged backgrounds can result from this new effort. A heightened and sustained effort on the part of all who passionately advocate for the health and well-being of communities of color must be implemented to ensure that such a vision becomes reality. Consistent with the principle of distributive justice, it is imperative that the risks and benefits that may come from precision medicine extend to all populations.

Precision medicine treatment works by identifying genetic differences among and between us that lead to higher disease risk and/or treatments that work best for a given condition. We already know that there are indeed objective, data-derived differences in the way that those of us with African ancestry metabolize certain drugs. For example, the common drugs routinely prescribed to treat asthma, hypertension, and certain cancers are known to be more sensitive or less responsive in Black people. In reviewing the study samples that shepherd these drugs from the market to our medicine cabinets, it is clear that the low participation of people of color contributes to this problem. The worrisome implication is that if genomic studies lack broader population inclusion, the genetic databases will be too restricted and likely lead to non-minority populations benefiting from them to a greater degree than minority populations. This is particularly important as we know that among Mexican American, Native American, and many Hispanic/Latino populations, there are surprising levels of racial admixture and intragroup genetic diversity given the varying degrees of their European ancestry. This supports the theory that even more precision medicine studies should be designed in such a way to incorporate this similar reality among many people of color.

The good news is that within the African-American community, there is greater interest and yearning to better understand our unique genetics. Curiosity about genetics and the percentage of our African and European lineage augurs well for a seamless transition into greater interest and broader participation in more advanced scientific data gathering. Emerging data suggests a growing awareness of the real potential benefit to families and communities of those participating in genetics research. This is tempered, however, by real concerns around how the results may be used (e.g., Henrietta Lacks),  if participants will be exploited (e.g., the infamous Tuskegee Syphilis study), a persistent distrust of investigators, and the low numbers of physicians and biomedical scientists of color who participate in such studies. Nonetheless, these understandable concerns should not exclude our families from better precision medicine treatments to help close the gap in the effectiveness of treating such conditions as breast cancer, prostate cancer, diabetes, chronic kidney disease, congestive heart failure, and other such conditions that afflict diverse communities. Such treatments will indeed be costly. Nonetheless, our goal should always be that all people (including people of color) get the right and best treatment available as a result of the precision medicine movement. Nothing more, and most importantly, nothing less.

What now of health inequities and health disparities in the era of precision medicine? As precision medicine delivers new discoveries, drugs, and treatments, its promise is indeed tempered by the fact that the primary contributors to health inequities are outside the realm of scientific laboratories, hospitals, clinics, or doctors’ offices. The social determinants of health—education, housing, and economic equality—must remain a strong focus for those who advocate, educate, and pray for a better and healthier America.