Cancer has touched my life in immense ways.
Many of my loved ones would still be here today if it weren’t for various cancers taking them before their time. As a member of the Black community, I am reminded that these loved ones might still be alive if it weren’t for the color of their skin or their socioeconomic circumstances. The heartbreaking reality is anyone can be diagnosed with cancer—but not everyone can get the care they need.
While we have come a long way in making treatment more accessible, we still have work to do to address health disparities within the blood cancer community, which often disproportionately impact racial and ethnic minoritized groups, rural communities, and other underserved populations.
We at The Leukemia & Lymphoma Society (LLS) believe everyone deserves equitable access to the care they need when they need it. This belief is at the heart of our Health Equity work as well as our culture of Diversity, Equity & Inclusion (DEI) that enables it.
Here are three ways my personal connection to cancer not only fuels my passion for what I do, but also reinforces the critical role our DEI and Health Equity efforts play in creating necessary change.
1. Treatment Accessibility is Not a Given
Cancer robbed me of my father, a hardworking husband and dad who always put his family first. He was diagnosed with lung cancer in March of 1995 and was gone by July of the same year.
The fact that my dad’s cancer took him so quickly was devastating, but it’s not quite as heart wrenching as the reason it did: he chose to forgo treatment because of the financial burden it would put on our family. As a middle-class household with five children, we were faced with a decision that unfortunately many families dealing with cancer face. Ultimately, we lost my dad because treatment was not financially accessible to us.
At LLS, we are advocating for policies like Medicaid expansion and protections for people facing medical debt, because we believe patients, including those with low incomes or disabilities, should never be blocked from life-saving treatment. In 2023 alone, we helped to expand Medicaid coverage in North Carolina, South Dakota, and New Hampshire. Additionally, we successfully defeated federal proposals that would have made nearly 2 million people with low incomes ineligible for Medicaid coverage.
Our work continues, but we remain committed to a future in which the size of your paycheck or the color of your skin has no impact on the quality of your care.
2. Lack of Trust Worsens Outcomes
I lost my brother, Kurt, to throat cancer in 2008. At the time of his death, I was unaware, as I’m sure he was, that throat cancers disproportionately affect Black men more than any other demographic. I’ve also come to learn that throat cancers can be very curable when caught early.
My brother, like many men in the Black community, avoided preventative care—like regular doctor visits—that could have caught his cancer in its early stages.
Unfortunately, a history of people of color being ignored or misdiagnosed has resulted in a mistrust in medical science and the healthcare system among some in the Black community. I truly believe that if my brother had been seeing a doctor on an annual basis, he would not have lost his life.
At LLS, we’re working to reverse this mistrust and educate communities of color or otherwise underserved communities disproportionately impacted by certain blood cancers. We empower communities through nationally recognized programs like Myeloma Link, started in 2017 to focus on connecting with Black and African American communities, and our Latino and Hispanic Outreach Program, which began in 2020. These priority initiatives aim to build relationships in underserved populations, raise awareness of blood cancers and LLS, and ensure patients and their families are connected to resources and timely, state-of-the-art treatment, including clinical trials.
We’ve also prioritized fostering internal environments where individuals from diverse backgrounds, identities and abilities experience a sense of belonging. We recognize that to gain the trust of all patients and families and to provide them with the best support, our staff and volunteers must reflect the diverse perspectives and backgrounds of the communities we serve.
With more than 70% of our employees participating in one of our ten Employee Resource Groups (ERGs), we not only cultivate belonging, but we enable and elevate the voices of these groups to influence where policies can be more inclusive. This culture of inclusion and influence helps us attract and retain diverse employees and reach – and develop trust among – as many communities as possible.
3. Representation Matters
When I joined LLS in 2020, I was impressed with how DEI and Health Equity were already baked into so much of the mission. I knew I wanted to be part of a place that recognized the importance of not only diversity but representation, which ensures that all viewpoints are depicted and valued in an organization.
Representation matters in healthcare, too. Because of my personal experiences with cancer, I’ll admit I’ve had my own skepticism toward the healthcare system. The fact is, I’m nearly 60 years old, and I’ve never had a doctor that looks like me.
But LLS is working to change that through programs like our Underrepresented Medical Student Research Program, which invests in the next generation of physician scientists helping to pioneer a better understanding of blood cancers in all people. The goal of this program is to promote representation of all types of people to enhance the quality of research, reinforce credibility among underserved populations, and provide the best possible outcomes for all patients.
It's been years since I lost my dad and my brother, but I think about them often and their memory fuels my passion for what I do. I am proud to work for an organization that’s taking so many steps to ensure all blood cancer patients have access to the life-saving care they deserve. By prioritizing and embedding DEI into everything we do and advancing Health Equity for all, we get a little closer every day to realizing our vision of a world without blood cancer.
