Thank you for inviting me to speak. Inequalities are prevalent across the spectrum of cancer care and research. They are complex and complicated, but as the late Dr Martin Luther King said, “Of all the forms of inequalities, injustice in healthcare is the most shocking and inhumane”.
Lung cancer is a disease that can affect anyone. But it doesn’t affect everyone equally. Despite all the advancements in research and treatment in lung cancer, the vast disparities across the cancer care continuum, both in the United States and worldwide, are glaring. They aren’t new and they didn’t happen overnight. They are rooted in a history of discrimination and systemic exclusion that has prevented certain communities from the opportunity to access and receive the care they need and deserve.
I Am Not the Average Person with Lung Cancer
I got involved in advocacy in 2001, after losing my parents and other loved ones to lung cancer. At the time, lung cancer was considered the invisible disease with little awareness and negligible funding for research. When I was diagnosed with lung cancer in 2009, research was finally moving in the right direction, and as we all know it continues to rapidly progress with new discoveries and more and better treatment options. Over the past 20 years, I have witnessed and celebrated the creation of a lung cancer community, and I have personally benefited from many of the advancements in research.
I am grateful that my path was different than my parents and I am hopeful for the future of lung cancer. But it’s disturbing and just plain wrong that my good fortune is mainly a result of luck. Simply stated, I was lucky to be born into a white middle-class family in the United States. Even more upsetting is that I represent only about 20% of people with lung cancer, which means that the advancements in treatment and the hope that I have mean nothing to approximately 80% of people diagnosed with lung cancer.
I was happy to see the many abstracts submitted to the conference on disparities in lung cancer and took time to read through each of them. One thing I think is important to note is that the abstracts discussed during this press conference point out the importance of context and culture. They highlight that underserved communities are defined by multiple constructs; race, ethnicity, LGBTQ+, elderly, people who live in rural communities, and other groups of which all face barriers due to inequities in cancer care.
What struck me as I was reading them was the need to humanize the research. The data is more than science. A ‘p-value’ isn’t simply a statistic, it is an inequity, a deep injustice, and people’s lives.
Cultural Humility
I was at an advocacy summit last January and one of the sessions was on disparities in cancer care. There were presentations from the African American community, the LGBTQ+ community, the Latinx community, and the Native American community. The presentations were eye-opening and quite frankly, upsetting. During the Q and A, I asked the presenters what the best way would be for me, an advocate, to reach underserved communities like theirs to ensure people had certain educational materials and other resources they need. One presenter looked at me and asked, “How do you know what they need”?
I was beyond humbled. I got a quick lesson on ‘Cultural Humility’, which is very different than Cultural Competence. Competence assumes one has learned all they need to know about another’s culture. Cultural Humility recognizes that every culture is unique and there are a lot of things we still don’t know. In fact, we don’t know what we don’t know. And there was a lot I didn’t know.
One presenter talked about a 2016 study that reported 80% of 1st-year medical students expressed implicit bias against lesbian and gay people, and nearly 50% expressed explicit bias. I was surprised until she mentioned that the average number of hours dedicated to LGBTQ+ health in medical school is only 5 hours and in nursing school, it is only 2 hours.
I learned that Western medicine can conflict with native values and practices in tribal communities. For instance, a simple biopsy can be significant because their belief is if the body is cut open or a piece of it is missing when someone dies that the spirit may not properly begin its journey after death.
We must incorporate cultural humility into cancer care to foster equity and inclusion. Healthcare providers can’t make their own culture the standard. We all must take steps to understand each person in their own cultural context. Black people are not a monolith, The LGBTQ+ community is not a monolith. I’m Jewish and I can tell you that Jewish people are not a monolith.
Who is NOT at the Table
You can’t help a person if you don’t understand them or know what they need, what their community needs. The context in which people live must be considered and the only way to learn, with humility, requires engaging with communities where they live and understanding their unique barriers. LISTEN and learn about the people in the community and value the input and perspectives they bring to the table.
I listened to an advocate from the KU cancer center tell a story recently about engaging with an under-resourced community in Kansas. He decided to ride the public bus in the community and along the route, he noticed that when the bus went by Target or Walmart the bus driver announced it and people were let off, but when they passed two healthcare facilities, nothing was said. The advocate called the bus company and asked them to announce and stop at the health care facilities. They agreed. Guess what? Appointments went up 30% - simply by individuals being made aware of what was available!
That emphasizes the importance of always asking, “Who is not at the table?” It’s great that WE are all here, but who is missing? It is critical to infuse people from underserved communities in all the work you do.
I always describe being diagnosed with lung cancer like one day you are just dropped kicked into a foreign country. You don’t know where you are, you don’t speak the language, you don’t understand the culture, you aren’t familiar with the terrain and you don’t have a map. Yet, you need to figure out how to survive. Now imagine how different the outcomes are between those who can easily access resources and those who have to navigate the foreign territory without any help.
We have the research on disparities. We have the data. We know there is a problem. We need to stop analyzing and start 'actionizing'. Health equity must be a priority. We need the same level of resources and rigor that was put into the urgency of COVID19 research and a vaccine for it.
Commit to STAND
Regulatory policy provides the framework for addressing inequity, but there has to be a change in culture at every level and a change in mindset by everyone. People are very comfortable talking about disparities caused by external factors such as governmental policies and historical injustices, but much less comfortable discussing race and discrimination as social determinants that lead to the inequities in healthcare. But, change doesn’t come from a place of comfort.
When I was asked to speak at this press conference and give a presentation on diversifying clinical trials, I questioned whether I was the right person, whether I could speak on behalf of people from underserved communities, but growing up my mom always taught us that it was our responsibility to fight for what’s right. She would say, “it’s one thing to see something and know it’s not right, it’s another to be brave enough to go against the norms and do something about it!”
I may not be able to speak for underserved communities, but I can ‘do something about it’. I don’t understand what it’s like to be a minority, and I understand that I will never understand….but I can, and I will STAND…and not just as an ally, but as an accomplice.
Indifference and silence only perpetuate injustice. I urge everyone, every company, institution, and organization to stand with me. Take a pledge and commit to self-reflection, acknowledging disparities exist, funding minority scientists, embedding a ‘health equity’ lens into all initiatives and programs, advocating for antiracism, and prioritizing people over profits in your companies, organizations, and institutions.
And we must not forget that lung cancer itself is a health disparity that affects both a patient’s health-seeking behavior and a physician's perception of a patient with lung cancer. This stigma must be addressed in order for us to make strides in equalizing other disparities.
Meaningful change starts with each one of us. It starts here. It starts today! In the words of JFK, “Every accomplishment starts with the decision to try”. Today I am asking you to make the decision to try. I am asking you to stand, and I am asking you to join me and shoulder the burden of knowing, the burden of lives that depend on us.
Thank you for allowing me to amplify the voices of those who don't have one.