Anita Roach of FARE: 5 Steps We Must Take To Truly Create An Inclusive, Representative, and Equitable Society

Have tough conversations. It can seem easier to sweep difficult discussions around race under the rug, however, not talking about it does not make it go away. Ignoring racial and cultural differences or denying the existence of inequities, aka “not seeing color” undermines the struggles that the Black, Latinx, and Indigenous communities have faced for centuries and the struggles they continue to face.

As part of our series about ‘5 Steps We Must Take To Truly Create An Inclusive, Representative, and Equitable Society’ I had the pleasure to interview Anita Roach.

Anita Roach is Vice President of Health Innovation Strategies & Corporate Ventures for FARE, the leading nonprofit representing the food allergy community. In her role at FARE, Anita aligns the patient, medical, and caregiver communities with the goal of closing gaps in research, clinical care, and other areas of unmet need. She and her team identify strategic partnerships to reduce barriers and burdens among the food allergy community. To do so, she connects with on-the-ground community organizations, local and federal government agencies, and other resources to develop communications and programs that improve patient experiences and outcomes. As a member of FARE’s diversity, equity, inclusion, and access (DEIA) team, Anita’s focus includes the important need to listen to and reach those with limited access to safety information and healthcare coverage. She has been published in the Journal of Arthritis & Rheumatology and Sleep Health and has a master’s degree from Georgetown University in Biochemistry.

Thank you so much for doing this with us! Before we dig in, our readers would like to ‘get to know you’. Can you tell us a bit about how you grew up?

I grew up moving around a lot with my dad and sisters — from Allentown, PA, to Kissimmee, FL, and then many times in the surrounding Central Florida area. We had many highs, including renting homes with a pool and a front yard and trips to Walt Disney World, and significant lows to living in motels and even a shelter and struggles. Our love for each other as a family was a constant, as was my love of learning and sports. For as long as I can remember, I would read medication and product ingredient labels to understand the chemical makeup. I always had a passion for history and the origin of things. I played soccer, volleyball, and basketball in middle school and then basketball for two years in high school. Life circumstances led me to leave high school and to get my GED at 18.

I was excited for a fresh start at Valencia Community College, where I enrolled in the Honors Biology program. I had such great professors who showed me all of the possibilities in the world and offered me opportunities to thrive. To get from class to work every day, I would take two bus rides, equaling two hours each way. As exhausting as that daily excursion could be, especially during sudden Florida rainy bouts, it gave me dedicated time to study away from other distractions. I had barriers to broadband internet and would pay-per-hour to use hotel business centers to complete homework after working late.

Despite not being part of a high school graduation ceremony, I ended up subsequently graduating three times: first from community college, then the University of Central Florida with a degree in Molecular Biology and Microbiology, and finally I made the exciting move to the Washington, DC, Metro Area where I attended and graduated from Georgetown University’s Biochemistry master’s program, magna cum laude.

Is there a particular book that made a significant impact on you? Can you share a story or explain why it resonated with you so much?

As a teen, I loved the Fearless book series by Francine Pascal. Fearless is about a girl, Gaia Moore, born without the gene for fear. The book resonated with me because Gaia Moore was a teenaged force to be reckoned with. Led by the strong female protagonist, Fearless had action, angst, and romance. Gaia faced many challenging, relatable and realistic situations, yet she was able to make it out on top. The good people always seemed to get redemption, and the “bad guys” got their due.

Do you have a favorite “Life Lesson Quote”? Do you have a story about how that was relevant in your life or your work?

“To ourselves as we are, we must know our mother’s names.” — Alice Walker

After losing my mother to cancer as a pre-teen, keeping in touch with my maternal family was difficult. I was thankful for the time I had with my maternal aunt, Sheila, to learn more about my mother — who she was, what she was like, and what she would think about who I had become. No matter how painful, it is essential to keep front of mind the people who come before us. Her journey with cancer drives my patient-centered, patient-as-the expert mentality.

I feel an overwhelming responsibility to my mother, whose name I bear, those around me, and those I have never met in facing access and opportunity gaps. I want to elevate the needs, experiences, and voices of all patients.

How do you define “Leadership”? Can you explain what you mean or give an example?

Leadership means working together, hand-in-hand, and co-developing solutions with a team, always uplifting and never anchoring. For instance, when a project misses its mark, leadership means working towards better outcomes next time. A true leader never points fingers and never places blame. Especially during these times, a true leader has empathy and understanding for both professional and personal hurdles and meets team members where they are in a way that intends to build and not break down.

In my work, I often talk about how to release and relieve stress. As a busy leader, what do you do to prepare your mind and body before a stressful or high stakes meeting, talk, or decision? Can you share a story or some examples?

First, preparation is vital. The more I can prepare, the better off I will feel. I need to know the Who, What, When, Where, and Why to feel ready. Practice does not help me. I did that early in my career and it always felt inauthentic. Rather, I like to visualize how I’d like high stakes event to go.

Sleep is second. If I am not well-rested, my brain is mush. “Well-rested” is relative, generally speaking, as I have two toddlers.

Third, I need to burn energy to feel my best, whether that is a quick power walk around the block or a 15-minute Peloton class listening to my favorite playlist.

Ok, thank you for all that. Now let’s move to the main focus of our interview. The United States is currently facing a very important self-reckoning about race, diversity, equality and inclusion. This is of course a huge topic. But briefly, can you share your view on how this crisis inexorably evolved to the boiling point that it’s at now?

Black, Latinx, and Indigenous communities have faced many tragedies in the U.S. and continue to do so today. Many of us in these communities know of or have had first-hand experiences with incidences like the killing of Travon Martin, Sandra Bland, and Breonna Taylor, which were exacerbated by race and the failures of our institutions. To some degree, we all have faced racism. I have been followed by security in retail stores for no reason other than being Black and have experienced microaggressions and full-on aggressions in the workplace in years past. In one situation years ago, a C-suite level individual told me they couldn’t imagine, “why Black people would want to be called African American.” Many have had much worse. In addition, there are so many entrenched structural barriers that under-resourced Black communities and other communities of color face, like food and pharmacy deserts, that are still not being sufficiently addressed.

Finally, in 2020, the Nation hit a breaking point. Now, racist acts can be recorded and shared for the world to see on social media in real-time, sometimes even being live streamed. Perpetrators can be found online and can be subject to public scrutiny. People who could have never imagined racism still being alive could no longer authentically deny it. Importantly, we have seen allies stand up and stand with us, hearing our cries and taking action to make a change and to elevate the cause.

However, the “self-reckoning” and reflection is not happening for everyone in our Nation. The blatant distaste towards issues faced uniquely by not only Black people, but other communities of color, Asian and Jewish communities, has been palpable and has led to increased violence against these communities as well as the growing number of white supremacy groups over the last four years. (NYT)

On top of this, Black and Latinx people were hit hardest by a pandemic that has killed and left them unemployed by a higher rate, particularly among Latinos, compared to their white counterparts. These disparities continue to exist in the midst of vaccine distribution. Political, policing, and legal infrastructures, all supposed to protect Americans, continue to disenfranchise Black, Latinx, and Indigenous people at an alarming rate. Working in our communities and with our allies, we can leverage this “boil” to push for great change at every level.

Can you tell our readers a bit about your experience working with initiatives to promote Diversity and Inclusion? Can you share a story with us?

One early Monday morning last summer, I had a conversation with FARE CEO Lisa Gable, who had a visionary idea. Throughout the summer, our team had over 50 one-on-one conversations with thought leaders dedicated to Diversity, Equity, Inclusion, and Access. Lisa had the idea of bringing all of those thought-leaders together in a roundtable-style discussion series to have a structured conversation around how patient advocacy groups like FARE can improve Diversity, Equity, Inclusion, and Access in the communities we serve. We subsequently had a three-part virtual roundtable facilitated by Dr. Debra Joy Pérez, an expert in advancing organizational equity, inclusion, and diversity. As Dr. Pérez puts it, we started by telling the story of who we were as an organization and who we were aiming to become. We listened to the professional and personal stories from individuals at African Americans Against Alzheimer, Children’s National Hospital, Food Equality Initiative, Freddie Mac, Latitude Food Allergy Care, National WIC Association, Partake Foods, and others. Hearing these stories from these stakeholders gave us a guide to develop ideas on how we can become who we want to be — an organization dedicated to and actionizing diversity, equity, and inclusion. We did our homework thanks to our academic experts like Drs. Kaye Cole and Pérez. As a culmination of this work, we developed Excellence Equals Equity: A Blueprint for Access.

The framework in A Blueprint for Access described is guiding our Community Access Initiative we’ve launched in Newark, NJ, hand-in-hand with community partners like South Ward Promise Neighborhood to improve access by listening to the needs of the community as it relates to access to safe and healthy food, quality care and support, and evidence-based information. In partnership with the community, we will co-develop interventions to address their unique burdens and will work with community messengers and educators to communicate results back to the community early, often, and without health literacy barriers. We have expanded to DC and with additional funding with continue that expansion to Philadelphia, Chicago, Detroit, Houston, and Los Angeles.

Doing the hard pre-work with our stakeholders and using those learnings to engage with communities will enhance our ability to make an impact.

This may be obvious to you, but it will be helpful to spell this out. Can you articulate to our readers a few reasons why it is so important for a business or organization to have a diverse executive team?

You do not know what you do not know. When businesses and organizations leave out women, Black, Latinx, Asian, those from low-income and rural communities, and others, they miss out on a plethora of ideas, perspectives, and consumers that can positively impact outcomes bottom-line. Better ideas lead to more innovation. Different perspectives and life experiences can lead to improved empathy and understanding, as we have glaringly seen with the working mom crisis of the COVID-19 pandemic. Lastly, consumers want to support companies with staff, leadership, and influencers that look like them and that understand who they are. Trust can be gained by having teams that reflect the communities they serve. Common backgrounds might also facilitate language and thus messages can come across better with diverse teams and have more impact.

One example of the need for diversity on teams comes from a National Bureau of Economic Research study with over 1,300 Black men, finding those who saw Black doctors were more likely to agree to more invasive, cost-effective preventative care. This level of engagement could help reduce cardiovascular mortality by 16 deaths per 100,000 per year — resulting in a 19% reduction in the black-white male gap in cardiovascular mortality and an 8% decline in the black-white male life expectancy gap (HBR). This is an example where diversity can improve health outcomes and economics as preventative services are much more cost-effective than disease management. Opportunities need to be made available to help foster better representation.

Having diversity, especially among the executive team, is important, it has to be authentic and core to your internal guiding light.

Ok. Here is the main question of our discussion. You are an influential business leader. Can you please share your “5 Steps We Must Take To Truly Create An Inclusive, Representative, and Equitable Society”. Kindly share a story or example for each.

All of these learnings can be found in our Blueprint for Access.

1. Engage early for better representation. Improving representation across all areas of health care and public health begins with supporting young Black, Latinx, and girls in their early on in their educational career. Adding mentorships and peer-to-peer buddy systems are key, especially as students go into high-school and college. Trainings and certificates of achievement can help with self-esteem and skill-set building.
   At FARE, we are working toward doing just that — with our FARE Clinical Network Diversity Fellowship and Mentorship programs geared toward Black and Latinx students.
2. Be holistic when ensuring equity. Companies and organizations need to be equitable beyond pay and title to ensure employees feel valued. Additionally, true leadership equity includes:
   -Decision-making equity — Enabling employees with the same or similar status the ability to make decisions of similar weight.
   -Social inclusion equity — Providing employees of a similar status the opportunity to engage in social activities.
   -Work-load equity — Ensuring that teams divide work fairly.
3. Use the “two ears, one mouth” mantra. Elevate the voices of your employees, consumers and communities and truly listen to understand their stories and their needs. Co-develop innovative interventions and clear communications based on their described needs, and always avoid parachuting in “solutions.” Getting these insights must go beyond surveys with townhalls, focus groups, and in-depth interventions.
4. What gets measured gets managed. Race and ethnicity data was missing for almost 50 percent of all coronavirus vaccine recipients during the first month shots were available (WAPO). Without stratifying data by demographics like race and ethnicity, we are not seeing the full picture. This lack of data makes it more difficult to deliver equitable access to the vaccine and other life-saving measures, especially given the significant burden on Black and Latinx communities with COVID-19. This is an issue across diseases, including food allergy. Companies and organizations must take deliberate steps to develop plans for and collect race and ethnicity data in a patient-centered manner.
5. Have tough conversations. It can seem easier to sweep difficult discussions around race under the rug, however, not talking about it does not make it go away. Ignoring racial and cultural differences or denying the existence of inequities, aka “not seeing color” undermines the struggles that the Black, Latinx, and Indigenous communities have faced for centuries and the struggles they continue to face. Our FARE Roundtable Series on Diversity, Equity, Inclusion and Access facilitated conversation started by acknowledging the need to “see” each other, allies and community members alike. I encourage leadership teams to hold these types of structured, facilitated conversation among colleagues and key stakeholders.

We are going through a rough period now. Are you optimistic that this issue can eventually be resolved? Can you explain?

What makes me cautiously optimistic is:

The number of people who are becoming allies for Black, Latino, and Indigenous people and who are not only having the difficult conversations but who are willing to take action and protect the people harmed by systemic racism. According to Harvard University, an ally is someone who makes the commitment and effort to recognize their privilege (based on gender, class, race, sexual identity, etc.) and work in solidarity with oppressed groups in the struggle for justice. As Harvard states, allies understand that it is in their own interest to end all forms of oppression and inequality. Much too often, it is believed that Black women and men are stronger than their white counterparts and are more tolerant to struggle, pain, abuse, or ignorance. Rather, allies can and should help bear some of the burden whenever possible. We have a collective responsibility to support and stand for each other as a society.

The very fact that we are having these conversations nationally, that you have made it through this far of my article, shows that people are starting to listen. Better yet, allies are taking action with Black, Latinx, and Indigenous leaders. Together, we can make true impact for those who need it most.

Is there a person in the world, or in the US, with whom you would like to have a private breakfast or lunch, and why? He or she might just see this, especially if we tag them. :-)

Dr. Marcella Nunez-Smith, an associate professor of internal medicine, public health and management at Yale University. She has been tapped by President Joseph R. Biden, Jr. to lead a new federal taskforce addressing the persistent racial and ethnic disparities in access and care. I admire her dedication toward science, communities and consensus building. She spends her days thinking about how to make healthcare more equitable in the U.S. but also taking action. I would love to learn from her and share ideas.

How can our readers follow you online?

LinkedIn https://www.linkedin.com/in/anitaro

Twitter @anitarhicks1