Silence Still Equals Death

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We tend to become emotionally involved when something is personal. The loss of friends and loved ones to HIV/AIDS over the course of thirty years produced a perpetual cycle of loss, pain and goodbyes.  It was the start of my emotional involvement and decision to speak up and do something.

I can’t address the scientific similarities between HIV and COVID-19, but I do know that both had and continue to have a devastating impact on the Black community in this country.

Black people represent 12% of the U.S. population, but account for a much larger share of HIV diagnoses (43%), people estimated to be living with HIV disease (42%), and deaths among people with HIV (44%) than any other racial/ethnic group in the U.S.  Similarly, Black people in the U.S. are infected with COVID-19 at nearly three times the rate of White Americans.

Poverty, the lack of access to health care, the lack of awareness and stigma all contribute to the devastation brought on by both diseases.

The bigger culprits are ignorance, indifference, and silence.  Far too many of us are guilty.  The production of COVID-19 vaccines provides optimism and hope. But in this moment, we need more than hope.  We can no longer be silent.  We have to speak up, friends. We have to do something to help each other combat the devastation.  We have an opportunity to increase COVID-19 and HIV education, testing, community involvement and treatment in communities of color – simply put, Silence = Death.

 

He Left a Playbook to Deal With This

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While the context was specific to achieving racial equality and not pandemic preparation, another high-profile individual left a detailed document on how to respond to a  crisis.

 

The individual was the Reverend Dr. Martin Luther King, Jr. and the document is a book published in 1967, called “Where Do We Go From Here: Chaos or Community.”

 

Fifty plus years later, “Where Do We Go From Here: Chaos or Community,” presents some hard truths and stark realities that remain relevant and demand our collective attention, perhaps even more so today. Its resonance, while centered on race relations and equality, has justice at its core.

As those of us in the fields of health sciences and healthcare seek to improve health equality and inclusivity, we only need look to Dr. King’s wisdom for insight and direction.

Instead of trying to reinvent the wheel, the answers exist in what Dr. Leon McDougle, (National Medical Association (NMA) President and Associate Dean for Diversity and Inclusion and the Chief Diversity Officer at The Ohio State University Wexner Medical Center), refers to as the  “already structured forces in the (Black) community that can serve as the basis for building a powerful united front.” Specifically, Dr. McDougle was referencing: The (Black) church, The (Black) media, The (Black) Fraternities & Sororities and (Black) Professional Organizations.

Dr. King’s message is particularly instructive:

“We need organizations that are permeated with mutual trust, incorruptibility and militancy. Without this spirit we may have numbers but they will add up to zero. We need organizations that are responsible, efficient and alert. We lack experience because ours is a history of disorganization. But we will prevail because our need for progress is stronger than the ignorance forced upon us. If we realize how indispensable is responsible militant organizations to our struggle, we will create it as we managed to create underground railroads, protest groups, self-help societies and the churches that have always been our refuge, our source of hope and our source of action.” –  (King, Where Do We Go From Here: Chaos or Community, pp 169 – 170)

The “source of hope and our source of action” that Dr. King referenced is precisely my guiding north star.  We must build and foster relationships with organizations, institutions and individuals who are prominent and trusted in the community.

The objective is simple – to illustrate and demonstrate how science can save lives…specifically Black and Brown lives. In order to accomplish this, we must be active and visible participants in remedies and clinical trials that will produce cures and solutions. We are resilient and strong and realize that, while it is a part of the solution, science alone will not save us.  It is important that we rely on ourselves.

Research has proven that people who are able to exert some control over their lives fare better and experience a better quality of life. The challenge is to strengthen our self-reliance and channel it in ways that help us better cope and survive.

COVID-19 is the latest and most prominent disease disproportionately devastating people of color and under-served communities; but that is only one disease in a longer list including HIV, Heart Disease, Diabetes and a host of other maladies.

So, when your pastor, sorority sister, fraternity brother or that individual you respect talks to you about science, clinical trials and how we have to organize the power in our community to save lives, Listen. Ask questions. Become engaged. Get informed. Most importantly, do not ignore Dr. King’s playbook.  Our lives depend upon it.

 

Global Racial Bias, Black History and Change

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On the eve of what is the most important presidential election of my lifetime, I am especially concerned and troubled about the increasing racial division engulfing our country…and the world.

There are not “good people on both sides.”  There is no good or positive side to acts that embody evil or malice.  Far too much of the dissension is the product of racial discrimination and racial bias. In the United States we are reckoning with having long overdue conversations about racial injustice.  No matter who wins the election, these conversations, though uncomfortable, can no longer be pushed aside. The rest of the world should take note that bias –  both implicit and explicit – inflicts pain, disrespect and oppression.  This is a new realization for many. But for people of color and other minorities, the sting of bias is a fact of life.

“Last month, in an incident that made headlines in Britain — and spurred a public apology from the acting head of the country’s court system — Ms. Wilson was shouted at for entering the court to defend her client, one of three times that day she was assumed to be a defendant.”

Alexandra Wilson, an Oxford graduate and lawyer in London, shared her painful reality in “What a Barrister Looks Like: A Young Black Woman Paves The Way”. Her story relates how she was ridiculed and subjected to acts of racial bias, and how she has chose to deal with it. I encourage you to click the link and read the article for a greater understanding of her story and the role bias played.  She used this moment and the obstacles to initiate change.

“…[S]he wants to lift up other women of color who are making their way into the profession. This year, she founded Black Women in Law, a community for aspiring lawyers and women already in the field. The group has close to 600 members who connect for conversations, advice and mentoring and organizes online events for schools.”

Bias hits home in moments that to others may be minor, but are, in fact, revealing. I have bookcases in my office that are visible when I’m in work-related Zoom meetings. Some colleagues  ask questions like, “Are those your books?” “YOU read all those books?” “You didn’t strike me as someone who reads books…that’s a lot of books.” Mere innocent curiosity or perhaps non-reflective implicit bias? I wonder if those questions would have been asked of a white person in the same environment, because what I heard is “What are YOU doing with all those books” “You read?”

When I was developing marketing programs for McDonald’s, there was an initiative called 365Black. Central to the theme was that celebrating Black history isn’t about a day, a week or a month.  That basic premise of 365Black takes on even greater significance and power today.  Open conversations about racial injustice is one way for us to begin healing and repairing the systemic ravages of discrimination.  Change through deeds and actions is another.  Alexandra Wilson chose the latter. By her actions, she proves that Black history is made everyday.

“It’s so important that kids see Black female lawyers,” Ms. Wilson said. “I didn’t, and I wanted to.”

 

The Enduring Pandemic…Racial Bias

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The onslaught of COVID-19 media coverage, health inequity news reports, and recent personal and professional encounters prompted me to take a hard look at racial bias.

In my opinion, many of us can’t help but bring preconceived beliefs about race, ethnicity, religion and sex, among other topics, to life situations and experiences. I am not the first one to say this, but racial bias and racism are pre-existing conditions.

Many of those biases are stereotypically negative and based on ignorance and a lack of awareness about people different than ones that are in an individual’s “circle of comfort and familiarity.”

 Simply put, the pandemic is disproportionately ravaging and killing Black and Brown people. The reasons are complex, but the root cause is, at least in part, attributed to historic and systemic racism. The by-products of such bias touch every facet of racial minority life in America. Yes, the disparities that exist between People of Color and White people have been exacerbated by the pandemic.

The residual effect is chilling.

 I read “Pandemic Brings out Biases Experienced by Minorities” today in Philadelphia’s daily newspaper, The Philadelphia Inquirer. The article, for me, was confirmation and validation of what Black and Brown people have always known to be true. Using the experience of Karla Monterroso as a backdrop, the article explains:

“Because when we go and seek care, if we are advocating for ourselves, we can be treated as insubordinate…and if we are not advocating for ourselves, we can be treated as invisible.”

 “Her experiences, she reasons, are part of why people of color are disproportionately affected by the coronavirus. It is not merely because they are more likely to have front-line jobs that expose them to it and the underlying conditions that make COVID-19 worse.”

“That is certainly part of it, but the other part is the lack of value people see in our lives,” Monterroso wrote in a Twitter thread detailing her experience.”

”Research shows how doctors’ unconscious bias affects the care people receive, with Latino and Black patients being less likely to receive pain medications or get referred for advanced care than white patients with the same complaints or symptoms, and more likely to die in childbirth from preventable complications.”

Karla’s story made me angry. It made me feel a profound resentment and disgust for what is undeniably a more devastating and enduring threat than the pandemic — racial bias.

I realize that I am blessed. I do not face home or food insecurity. I have medical coverage. Tomorrow I will go to work, turn on and sit in front of my computer.

But the kick in the gut occurs when I think about those whose means are less than mine. I think about my sisters and brothers who suffer with higher infection rates…lower paying and riskier jobs…inadequate or sub-par public services…and daily face the scourge of a pandemic that affects in profoundly disproportionate ways.

I feel resentment and disgust for what is undeniably a more devastating and enduring threat than the pandemic…racial bias in America.

The pandemic and similar misfortunes reveal the underlying dark truth of racial bias.

We can do better.

We have to do better.

Because?

Our lives matter.

 

 

IT ISN’T ROCKET SCIENCE – Creating a Big Tent for Clinical Trials

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I just celebrated three years working in the pharmaceutical space. The simplest explanation of what I do is to market strategy and communications that drive product awareness and, ultimately, customer purchase of a suite of clinical trial solutions.

 

In layman’s terms, I advertise solutions that help get medicine to the market faster.  In my role, I have no contact with patients or involvement with the implementation and/or execution of clinical trials.  However, this access that I am granted does give me a special perspective.

 

I had a conversation with an individual whose job is to lead clinical trial diversity for a large pharmaceutical organization.  This individual was sympathetic and resolute in how they face the challenges associated with achieving the application of diversity in the trials that their company implements.  However, they pointed out that the necessary allocation of resources and commitment was the greatest and most daunting challenge they face on an ongoing basis.

“I am able to make compelling arguments (to my superiors) in favor of diversity in clinical trials. But without a model that shows an immediate return on investment, the need is nothing more than a conversation without a resolution.”

 

In another example of industry complacency, I reflect on the global and domestic industry conferences, seminars and meetings I have attended.  As part of their programming, they offer what is billed as the “patient perspective.”  This is typically a panel or round-table discussion that includes patients who are trial participants. Without exception, the patient representation did not include people of color.  When I questioned this lack of diversity, the responses were a mix of bewilderment as to “why” I would ask the question and an often-repeated refrain of we could not find any minority patients.

 

How do we understand the impact of drugs on race when the minority participation in trials is underrepresented?

 

According to the U.S. Census, Black or African-Americans represent 13.4% of the U.S. population.  The FDA has reported only 5% participation in clinical trials by the same population.  This under-representation suggests not only a systemic industry problem, but (it) begs a larger and more important question — Are new medications effective and viable for all populations?  The racial composition and make-up of individuals enrolled in trials that lead to approval of drugs must be comparable to the overall population.  This is especially true if the medication is going to be effective once approved.

 

New York Times opinion columnist Charles Blow was the first to raise the issue of racial disparity in his April 1st column, The Racial Time Bomb in the COVID 19 Crisis.  My conclusion was that, under normal circumstances, it was vitally important to address the challenge of finding ways to increase minority participation in clinical trials.  Given the onset of the pandemic and its affects on African-Americans, it is absolutely critical.  Diversity and inclusion is not a nice thing to do. It is a bridge to building trust with what has historically been, with good reason, a skeptical and resistant audience.

 

Change starts at the top.  I experienced this first-hand while working on the McDonald’s brand.  While the company is best known for selling hamburgers and soft drinks, it has also been the benefactor of unprecedented powerful consumer connections.  McDonald’s understood that there is never one simple solution to building a trusting relationship.  But by demonstrating community commitment, engagement and investment, McDonald’s was able to effectively tap into what its brand stands for in the hearts and minds of African-American consumers.

 

Dr. Althea Maybank, the American Medical Association’s Chief Equity Officer and Group Vice-President sums it perfectly in the NBC News article, “A COVID-19 Vaccine Will Work Only If Trials Include Black Participants.”

 

“With any relationship, you build it,” she said. “Folks doing work from leading institutions have asked, ‘How do we build trust?’ Well, it’s not rocket science. It’s about building relationships. Are you getting to know me beforehand? Are you speaking in a language I understand? Are the concepts broken down so that they are digestible? Are you present? Are you giving resources to our neighborhoods beforehand? That’s not rocket science. It’s building a relationship. That’s how you build trust. And trust is a fundamental value in humans. There’s no rocket science behind it.”