Kashyap Patel, MD, wears many hats, but starting January 1, 2023, he set one aside: After serving 2 years as the president of the Community Oncology Alliance (COA), Patel transitioned to immediate past president, while remaining a member of the executive committee. He is CEO of Carolina Blood and Cancer Care Associates, based in Rock Hill, South Carolina, where many of his patients are poor and uninsured or underinsured.
Patel took the helm at COA in January 2021 as the COVID-19 pandemic in the United States was hitting its second peak of hospitalizations—and before the first round of vaccines reached the public. Already, the pandemic had brought to the surface a long-simmering issue: Incredible advances in cancer research and treatment were not reaching all patients. Communities of color experienced lower rates of cancer screening and access to care, and social determinants of health (SDOH)—factors such as lack of transportation or food—translated into fewer minority patients enrolling in clinical trials and thus having worse outcomes.
Coming off publication of his book, Between Life and Death: From Despair to Hope, which addressed the need to train physicians to meet patients’ needs at the end of life,1 Patel had already turned his attention to cancer care disparities. He was disturbed by the groundbreaking report, AACR Cancer Disparities Progress Report 2020, from the American Association of Cancer Research, which found that 34% of US cancer deaths would be preventable if socioeconomic disparities could be eliminated.2,3 In particular, Patel homed in on data that showed the Genome-Wide Association Study Catalog contained startlingly few samples from individuals of color. Without action, he noted, the promise of precision medicine was hollow, and the outcomes gaps would grow.4
In response, Patel created within his practice the No One Left Alone (NOLA) initiative, which aimed to improve access to care for patients with cancer regardless of ability to pay. Early results of that effort were published in Evidence-Based Oncology™ (EBO) in March 2022 and showed Patel’s practice was about to secure $2.3 million in a combination of financial assistance and free cancer drugs.5 NOLA also works to provide minority patients wider access to genomic testing, and that process is ongoing.6
Finally, Patel has worked with The American Journal of Managed Care® as it launches the Center for Health Equity and Access, which will include a regular section in the pages of EBO. In this interview, Patel discusses his efforts with COA and his hopes for this initiative.
This interview is edited for clarity.
EBO: You made addressing health care disparities in oncology a focal point of your tenure as president of the COA. Where did you see progress?
Patel: It’s a learning process; it’s kind of on-the-job training. What we found was that the lowest-hanging fruit was to look at the existing patients’ access to care, because that was [affected by] financial reasons. In the article [in EBO] based on data in 2021, we saw that between the [assistance for] oral and intravenous drugs and the free drugs, we were able to get direct and indirect help amounting to $2.3 million.5 But the outcome was that not a single patient had to worry about their out-of-pocket cost. So, going back to us as philanthropists who actually have supported different initiatives, I felt that by putting a process in place and by identifying out-of-pocket cost as the patients’ burden, we appointed 3 employees whose exclusive role was to find the resources, go after the resources, and make sure that no patient ends up abandoning treatment. That was a huge learning experience for us.
But then we realized that was not enough, because I could find resources for a patient with myeloma who has $4000 in out-of-pocket costs, but if the same patient went to hospital and had 15% to 20% in out-of-pocket costs for the hospital bills, they still are vulnerable to bankruptcy because the hospital debts are not forgivable. We figured out that our next [area of] attention should be, “How can we prevent that?”
There are other buckets of disparity that we felt we needed to work on. One was access to clinical trials, another was access to biomarker testing, another was social determinants of health. And the last one was actually the cancer screening.
Our first focus was on the immediate need—the out-of-pocket costs—and we took care of that. On the other initiatives, we started looking at the lag in screening [rates]. Out of 2000 patients for whom we collected information, we found 1000-plus patients did not have cancer screenings based on US Preventive Services Task Force recommendations. We are working on that—how do we raise awareness for that?
Now what we are looking at is how we can support uninsured patients through a separate foundation. That’s something that I should not control, but we can work with a separate foundation that would cover out-of-pocket costs for patients whose costs are not covered by [the Affordable Care Act] plans. This way, not only are they protected at our clinic but they also don’t have to face bankruptcy from the hospital bills….
This is a wake-up call. I mean, this actually keeps me awake at night.
EBO: It sounds as though social determinants of health is the next major area of uncharted territory—not just for your practice, but for many providers in cancer care.
Patel: It’s big uncharted territory. When you look at the large database that will emerge as a part of [CMS’ effort to] collect information on social needs, that’s going to actually wake up the society, because studies are emerging now showing that same-stage cancer, same treatment outcomes may be different for 2 patients, [depending on SDOH]. In addition to social determinants of health, through epigenetics—maybe from chronic stress-related inflammation—that itself can become an oncogenic driver. I do feel that…we are realizing that by not investing in the social infrastructure in rural areas that we have a 2-tiered health care delivery system.
EBO: Now that you are no longer president of COA, what is next for you in the area of health equity?
Patel: It’s easier now, because I don’t have to worry about going to Washington, DC, every other week. It was a very big honor for me to be [president] of COA. But I do feel that there’s a time for everything in life….To paraphrase a line from a poem by Sir Walter Scott, “A tear in the eye and a smile on the lips.” I had a tear in my eye when I stepped down as COA president, but I smile because I can do more things independently….
I’m going to focus on creating a pathway, creating a guidebook on how every practice, even ones as small as ours, can bring an in-house solution to address health care disparities, because solutions are going to be all local. Neither the federal government nor the state government will solve all these issues. Patients come to us, and we become what we call “the voice.” We become the custodian, trustees, and stewards of their life. If they give me the right to inject poison into their body, imagine how much trust they have. And if I can—by spending 2 hours or more every week—I am going to help facilitate some of their social issues such as homelessness, food insecurity, housing insecurity.
EBO: You were pleased to see that CMS has added the requirements to gather health equity data—and develop strategies—as part of the Enhancing Oncology Model (EOM).7 But I know you continue to have discussions with the Center for Medicare and Medicaid Innovation (CMMI), part of CMS, about giving practices fair compensation for their participation in the model. Do you feel that CMMI and CMS are moving to a point of greater fairness in how practices will be compensated for taking on these tasks?
Patel: I did make it very clear to the CMMI team, and in all candor, I do feel that if they do not create some kind of compensation, [our practice] may not even go for the EOM. The reason is because they want us to collect the data, but if I come across 100 patients in a month who have food insecurity, this falls on me to find resources for food. It’s going to be time intensive, and I’m not going to sit tight on that. For now, we still will do what CMMI [asks].…We already are probably about 15 months ahead, because we already are collecting the information that CMMI wants us to collect. We have a much wider depth and breadth of information.
But I do feel that CMMI has [perhaps] not a legal but a moral obligation to look into compensation for practices that must now make time to call a nearby food bank, the utility company, the insurance company, [and other] foundations to make sure that we take care of the social issues [that are not health related]. This takes many hours, so I think these are actually things that I would recommend strongly that CMMI should consider.
At the same time, I was going over patterns for existing patients. Some of my patients who had COVID-19 have been hospitalized 15 times in 2 years because of atrial fibrillation or heart failure. They were perfectly fine before. What this tells me is that because they went to the hospital 15 times, they took time off from work. They needed child care; they spent more in out-of-pocket costs. It’s going to make things worse and worse. Health-related social needs will get worse and worse with ongoing chronic, postpandemic illness. And it’s an area where CMMI should [consider] making an adjustment. I don’t think CMMI has looked into adjusting the benchmark price for patients who have had COVID-19; the postacute sequela of COVID-19. These are the 2 big challenges that I face that have me thinking, “Do I want to be part of this or not?”
EBO: That brings us to the introduction of the Center on Health Equity & Access, which arises out of the disparities in access to care that were highlighted during the pandemic. You have been advocating for this type of initiative for a long time. What are some topics that you would like to see the Center on Health Equity & Access address?
Patel: I’ve spent close to 2000 hours studying these issues, and I feel that there are several areas that we could focus on:
We also need to address post–COVID-19 complications, because they make all these issues worse and they will impact the most vulnerable in our society.
1. Caffrey M. When the topic is dying: a conversation with Kashyap Patel, MD. Am J Manag Care. 2020;26(Spec 8):SP245-SP246.
2. Sengupta R, Honey K. AACR Cancer Disparities Progress Report 2020: achieving the bold vision of health equity for racial and ethnic minorities and other underserved populations. Cancer Epidemiol Biomarkers Prev. 2020;29(10):1843. doi:10.1158/1055-9965.EPI-20-0269
3. Nunes M. Report on cancer disparities reveals harsh truths and a call to action. City of Hope. September 16, 2020. Accessed January 28, 2023.
4. Abunyewa AM. Why is our genome data so White? A discussion on the lack of representation in genome-wide association studies. Yale Global Health Review. February 2, 2021. Accessed January 30, 2023. http://bit.ly/3kVea8U
5. Patel K, Mukhi H, Patel A, et al. Addressing cancer health disparities in a multilateral collaboration in an independent community cancer clinic: translating words into action. Am J Manag Care. 2022;28(Spec 6):SP398-SP401.
6. Patel K, Mukhi H, Mehta D, Patel A, Oh W, Reddy P. Incorporating biomarker testing in community cancer clinics: a real-world pilot study. Targeted Ther Oncol. 2022;11(7):16.
7. Enhancing Oncology Model. CMS. June 27, 2022. Accessed January 30, 2023. https://innovation.cms.gov/innovation-models/enhancing-oncology-model
8. Waddill K. 87% of eligible seniors do not receive lung cancer screenings. Health Payer Intelligence. June 23, 2021. Accessed January 30, 2023. https://bit.ly/3HiUcwb