Recognizing cancer disparities and working to defy them

April marks Minority Cancer Awareness Month and Minority Health Month, opportunities to reflect on the disparities experienced in health care by historically marginalized and underserved racial and ethnic groups, and to recommit ourselves to improving equity and access to care amongst these communities and for all who need care. At Dana-Farber Cancer Institute, we are committed to increasing equity in patient care and outcomes, and to building a diverse and inclusive workforce, to better represent the communities we serve.

To recognize this month, we spoke to several Dana-Farber faculty members who are at the forefront of the Institute’s efforts to address and reduce disparities. Narjust Duma, MD, is a thoracic oncologist and associate director of Dana-Farber’s Cancer Care Equity Program. Cristina Pozo-Kaderman, PhD, is a psychologist and director of the Institute’s Young Adult Program. Jose Ricardo McFaline-Figueroa, MD, PhD, is a neuro-oncologist and physician-scientist at Dana-Farber’s Center for Neuro-Oncology.

Q: What is your role at Dana-Farber and what led to you working here?

Duma: My primary role is to expand research within our Cancer Care Equity Program. We need to better understand the needs of the community, and make sure we are doing ethical research, too. Instead of asking patients to come to us, I go out into the community, with our clinical partners in underserved communities. We help their primary care doctors determine if a patient has cancer and what that diagnosis is, and then we help those patients navigate their diagnosis and get to Dana-Farber for care, if appropriate.

Personally, my role in Boston is to get to know the community—not only in Brookline where the main Dana-Farber campus is, but in underserved communities like Roxbury, Dorchester, and others. My goal is also to diversify our workforce, not only the physician workforce, but everyone on the medical team. Latinx/Hispanics are 18% of the U.S. population, but only 1.8% of the physician workforce are Latinas. I am working on being a role model for Latinas in medicine, to make our workforce more reflective of our communities.

Pozo-Kaderman: I am the director of our Young Adult Program, which provides psychosocial services to younger cancer patients, between the ages of 18 to early 40s. I’m a second-generation immigrant; my parents were born in Cuba. I am from Miami but studied in New York City, with the goal always to go back to Miami and my family and community. My mom had cancer when she was 27 and it recurred twice. Her experience is what interested me in working with young adults. 

Our resources within the Young Adult Program are open to patients at Dana-Farber and beyond, so a lot of my work currently is reaching out to other hospitals in Boston to let them know of our services and encourage patients to join our programs to improve their quality of life. I’ve found there are issues with patients not feeling comfortable coming to Dana-Farber programs; they worry they might not be accepted or would be too different, if they don’t look or speak like our patient population. I reached out to other hospitals and volunteered to talk to patients in Spanish about what we offer, attend breast cancer groups and give tips on sexual health during cancer, and provide other psychosocial resources. My hope is that seeing someone who is like them reaching out and providing services will help build trust and make patients from underserved communities feel more comfortable joining our programs.

McFaline-Figueroa: I am a neuro-oncologist at the Center for Neuro-Oncology at Dana-Farber. After college in Puerto Rico and medical school at Columbia in New York City, I came to Boston for my neurology residency. I quickly found myself drawn to neuro-oncology patients and helping them through their disease course. I did my neuro-oncology fellowship here at Dana-Farber and feel very lucky that I was able to then make it my clinical and academic home. I serve as co-chair of the Women and Diversity Committee of the Society of Neuro-Oncology, an organization that has made a significant commitment towards making diversity and inclusion a priority.

Q: What are some of the biggest barriers to care for medically underserved communities?

Pozo-Kaderman: The primary theme across all barriers is the limited resources and many competing needs minority patients have. These include transportation issues, limited technology and access to it, not being table to take time off work, childcare, access to health insurance, etc. There is also a lack of trust of the medical and health care system. This certainly exists for African Americans, but also for Hispanics, particularly if there are immigrants in their family who are undocumented.

Many people—regardless of race and ethnicity—are also not educated medical consumers, who understand the resources that are out there and that specialists exist. Most people will go to whoever is closest, or whoever their friends suggest, but we know that if you get care at NCI-designated centers, like Dana-Farber, you are getting specialized care and more access to clinical trials and research. People with limited resources are more likely to go to places closer to home, which may not be the best care particularly for young adults who often have unusual cancers. We can help solve this by educating people, building trust, and improving our access within communities.

And for the psychosocial care our team provides, there can be some reluctance to talk to someone outside of your family or church for support. There can be distrust in the health community, and the importance of the family and church plays a large role. In addition, being able to communicate in your native language is helpful to receiving mental health services.

McFaline-Figueroa: In many ways, I think the barriers are too many to count. In a diverse population like the Greater Boston area, I worry about underinsurance, the high cost of medical care, language barriers, poor access to primary care providers and specialty services, lack of stable housing, and lack of reliable access to transportation. In neuro-oncology, I worry also that underserved minority communities have less access to centers with clinical trials, which offer hope in the face of often difficult diagnoses.

Duma: A huge barrier for a lot of people, and one we had at Dana-Farber until recently, was insurance. We expanded the number of insurances we accept, which makes us more accessible for many in our own communities. But we can still look out of reach for many minority communities, and we need to make ourselves more welcoming for communities of color and non-English-speaking communities. In the past year, the Cancer Care Equity Program has doubled in size, thanks to philanthropic support and Institute funding, which is helping us to expand our patient navigation program to address some of these issues. Patient navigators are bilingual, culturally sensitive, and trained in unconscious bias, to help patients navigate their diagnosis and get the care they need. We are working to diversify our workforce too, to better reflect our communities.

Q: In your opinion, why is it important for Dana-Farber to improve care within historically marginalized communities?

Duma: It’s the ethical thing to do. As one of the leading cancer centers in the country, it is our responsibility that all patients get equal care. Your cancer outcome shouldn’t be determined by your race, ethnicity, sexual orientation, or incarceration history. We are leaders in the field, and models to other institutions. If we are inclusive and do what we need to do, then others will follow. That’s one of the responsibilities of being a leader.

McFaline-Figueroa: Dana-Farber is in a prime position to tackle disparities in cancer care in Boston and in the United States as a whole. I think it’s our duty to use that position to make a change!

Q: What can people do to support more inclusive and equitable health care in their own communities?

Pozo-Kaderman: Many people have preconceived notions about what people in minority communities need—ask first, before you assume. Volunteer, be curious, and ask questions, instead of assuming that you know. Knowing one person or one group’s story doesn’t necessarily translate to another group.

Duma: It’s important for the general population to be aware of disparities. Be informed and understand that for some people, getting cancer care is more difficult, only because they have a different skin color or an accent. People can also advocate to their representatives for bills that make care more accessible, like expanding Medicaid. Individuals have more power than they know in creating equity. Each of us, if we do little things, can make a big difference. We all have privilege, and we need to be aware of it and use it to help others who don’t.

Help support these efforts by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.