Tag Archives: African-American

Silence Still Equals Death

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

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.

 

The Enduring Pandemic…Racial Bias

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

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.”

 

Slip Away – A journey of love, loss and showing up

 

I didn’t know Charles Roberts, my paternal father.

My mother divorced him when I was a toddler.

Upon reflection and an examination of the facts, as I recall them, my father did very little to foster a relationship with me.

In fact, my father’s most important relationship was with alcohol…and, ultimately, it is the thing that took his life. He drank himself to death.

Much of the credit for the man I have become is due to my mother.

A single Black female, full of grit and moxie, determined to make a good life for herself and her son.  She is part of a legacy of strong Black women who wore multiple hats, made sacrifices and like a momma bear, nurtured and protected her cub.

Credit is also due to a man named James Burks.

My mother didn’t have a lot of boyfriends.

There were, of course, men that she dated, but “Mr. Burks+” was somehow a consistent presence in our lives.

He was the only constant adult male in my life while I was growing up.

As far back as I can remember, he always treated me with love, respect and dignity.  He treated me as if I were his own flesh and blood.

I questioned him about that recently and he replied,

“What was I supposed to do? I was dating your mother and had no choice but to love you and fill the void that was there.  You needed me.”

Over time, to the outside world, including family and friends, Jim Burks was my father.  To me he was Dad.

He taught me how to properly care for myself – things, I assume that men teach their sons – how to shave, how to groom and. most importantly, how to best navigate through life as a Black man.  Who better equipped to teach a young Black man these lessons than another Black man?

There are countless snapshots and memories from the past that solidify his presence and importance in my life.

An appreciation of the arts, mostly music: introductions to James Baldwin, Billy Strayhorn, Coltrane, Billie Holiday, Puccini, the simplicity and vibrancy of a Harold Wheeler string arrangement. He was passionate about history and antiques and he shared his passions with me. Like a sponge, I absorbed them all.

Education: He hired a tutor for me when I needed to improve my grasp of arithmetic.

When my boarding school tuition was due and my mother was short, Jim made up the difference and added a sweetener on top.

In my early teenage years when my maternal grandfather’s body was riddled with cancer and he was dying, it was Jim Burks who showed up at school to take me to Boston in order to say goodbye.  He didn’t tell me “how to” mourn, but through his actions, he taught me that it is okay for a man to be vulnerable, to cry and express empathy.

My mother and Jim came to visit me in the eighties.  I was in my twenties, living in New York – in an apartment that I could not afford, in a relationship that was toxic and detrimental to my well-being, and visibly thin and in trouble.

Disgusted and disappointed by what he saw, Jim called me later and told me to pack up my things.  He was coming to take me home.  On the appointed day with no more than a hello, we loaded his car with my belongings and he brought me home.  The two-hour car ride was filled with silence.

All that was needed to be said remained unspoken. He rescued me. He saved my life.  He saved me. He showed up when i needed him most.

Eight months ago, I got a telephone call from my dad’s doctor…He was concerned that he had missed two appointments.

“These are radiation treatments for the skin cancer, Eric.  It is important that Dad not miss these appointments. They are scheduled every weekday for the next two weeks, and you have to make sure he gets there.”

Skin cancer? Radiation? This was new information to me.

When questioned, my dad made light of the situation and referred to the treatments as “this thing.”  He saw it as no big deal and, at 95 years of age, I assumed that, given all that he had been through in his life, it was no big deal.  So, for two weeks we would go to the oncology treatment center at the hospital.  Outwardly he appeared fine and without any visible side effects.

Three weeks later, everything changed and the world turned upside down.

 

 

+As a child, I was instructed to refer to any adults as “Mr” or “Miss.” My mother believed that it was not only a sign of respect, but, in her mind, a differentiator, that separated her child from others.  So for close to twenty years, I referred to my dad as “Mr. Burks.”