Health equity, rightly so, has taken center stage in national conversation and debate. And while advances have been made to address health disparities — including those based on race, gender, sexual identity, and social-economic status — it remains one of the most complex issues plaguing the healthcare community. Unfortunately, the Covid-19 pandemic doubled down on these inequities. A recent study showed that 64 percent of Black patients and 57 percent of Hispanic patients experienced cancer treatment delay or discontinuation once diagnosed with Covid-19; only 46 percent of white patients experienced the same delay.1
In recognition of the devasting impact of these inequities on patient outcomes, Janssen Oncology connected with three cancer patient advocates to learn about their experiences and discuss how the community can collectively work to solve for disparities in care.
Tyrone Brewer, US President, Janssen Oncology: Each of you represents a unique perspective as patient advocates dealing with different cancers. What barriers to health equity do you see within your areas of focus?
Mical J. Roy, prostate cancer patient and advocate: Generally, there are not enough voices in this space from people and communities who are underserved or who are more at risk. We know that Black men are much more likely to die of prostate cancer, and there are not enough people who look like me talking about that risk.2 I do think it has improved since 2018 when I was diagnosed as I’ve seen many more Men of Color speaking out.
Stephanie Chuang, founder of The Patient Story, lymphoma patient and advocate: Access to treatments, specialists, and information is extremely important to break down these barriers. When I was diagnosed with lymphoma, I saw how privileged I was to have access to world-class institutions because I lived in a major city, but we know that most cancer patients aren’t as lucky to find their way to an academic research hospital. Democratizing access to information and care for all patients are important steps to health equity.
Yelak Biru, President and CEO of the International Myeloma Foundation, multiple myeloma patient and advocate: Stephanie and Mical share some strong points. On top of that, I also believe that one of the biggest barriers to improving equity is the lack of trust in the system, trust in the healthcare providers, trust in the industry, and trust that I — as a multiple myeloma patient — will be treated fairly and equitably. Patient advocacy organizations can play an important role in helping improve trust in the patient ecosystem and everything that’s supporting the patient.
Brewer: You each identified different issues that need to be addressed to reduce the systemic barriers facing cancer patients — and they are all equally important. How can patient advocacy help address these and other issues to reduce health disparities?
Biru: We need to do a better job of boldly bringing people together to help solve this problem. When talking about health equity, everyone seems to break off into their own rooms. Patient advocacy organizations and patient advocates can help bring all the constituents together. Industry partners, policymakers, and payers are not going to solve health disparities alone.
Roy: I believe that patient advocacy is a major player in driving health equity because giving patients a voice helps to balance the scales. Part of my work is mentoring other prostate cancer patients from around the world. It is so meaningful to share my experience and help guide other patients through treatment.
Chuang: To build on what Mical said, the patient voice is so powerful. Many of the relevant players, including pharmaceutical companies, are starting to recognize the value of bringing patients into the discussion — from the very early stages of research and clinical trial development to implementing procedures and protocols for new treatments. This conversation can also help patients feel more empowered to advocate for themselves.
Brewer: Partnering with patients early on and in each step of the process is something I find so important to ensuring our work is patient centric and reflects the diverse voices and needs of the cancer community. How can pharmaceutical companies better support patients and caregivers?
Chuang: It is so encouraging to see the pharmaceutical industry actively partnering with and seeking input from patient advocates. In addition to listening and learning from patients, industry can help amplify diverse voices and stories within the patient community.
Biru: I really believe that we as a community need to understand the various dimensions of inequity and be willing to address it in a multidimensional nature. Specifically, I think the industry can hold itself to a higher degree of accountability to ensure that there is greater diversity among those who are working in the drug development pipeline.
Roy: Industry partners need to be willing to take part in conversations with advocates — like we are doing now. These stories are the magnet that brings everyone together and helps spread awareness of this important effort.
Brewer: One common theme that I’ve noticed in this discussion is the importance of access and representation. Can you share a bit more detail on why that is so important?
Biru: Of course, in multiple myeloma specifically, the major disparities in the Black patient population are related to access to the three Ts: transplants, clinical trials, and triplet therapies. In particular, I believe that understanding why Black patients don’t participate in clinical trials is one of the major drivers to improving health equity for patients living with multiple myeloma.
Roy: I want to re-emphasize the importance of amplifying the patient voice. With prostate cancer, we know that Black patients are less likely to get screened and more likely to die than non-Hispanic white men.2 I have seen the hesitancy to talk about diagnosis, treatment, and testing within my own family, so I believe the more that I speak out it will help break down those barriers within the Black community.
Chuang: To build on Yelak’s point, we must make sure that the people in clinical trials are representative of the population being served by these treatments, and we have a long way to go on that front. But, like Mical, I also want to amplify the importance of patient stories. One positive shift I’ve witnessed is an increase in conversations about shared treatment decisions — which I believe is a direct impact of patient storytelling. It empowers patients to know that they can be a driver in their own treatment journey by accessing information and asking more questions.
Brewer: Thank you for sharing your perspectives. Your insights are critical to understanding the issues at hand, and I’m honored to continue this conversation as we collaborate with the cancer community to work toward change. As the pharmaceutical companies of Johnson & Johnson, we are invested in Our Race to Health Equity initiative to address some of the issues discussed here including investment in community-based healthcare solutions that build trust and improve access to quality care and increasing representation of diverse patients in clinical trials. At Janssen Oncology, we are inspired by our mission to Reimagine care. Redefine living. and are committed to working together with the community and patient advocates like yourselves to identify, understand, and help solve for the health disparities that exist at every step of the patient journey.
Chuang and Roy were compensated by Janssen Oncology for their participation in this interview.
1. Islam JY, Hathaway CA, Hume E, Turner K. American Association for Cancer Research. In: Abstracts Online. New Orleans: American Association for Cancer Research; 2022. https://www.abstractsonline.com/pp8/#!/10517/presentation/18109. Accessed May 17, 2022.
2. American Cancer Society. Cancer Facts & Figures for African Americans 2019-2021. Atlanta: American Cancer Society, 2019.
© Janssen Biotech, Inc. 2022 05/22 cp-315730v1