By Joshua Budhu, MPH ’22
February 8, 2024 – As a neuro-oncologist focused on health equity, I understand the many reasons behind disparities in cancer outcomes by race and income. However, it is one thing to understand those reasons intellectually. It’s another thing to see them play out within your own family. My father was diagnosed with metastatic prostate cancer in 2018. His journey shines a light on the barriers that patients of color and low-income patients face to ensure timely diagnosis, careful follow-up, and high-quality care. cancer.
My father, Robert, is a retired real estate agent and a proud Guyanese immigrant who sacrificed so that his children could live a better life. In 2015, his primary care physician (PCP) noticed that he was having trouble urinating and ordered a prostate-specific antigen (PSA) test. He returned erect. His PCP was suspicious of prostate cancer given his age and symptoms. Prostate cancer is usually slow-growing, so his PCP planned “active surveillance”—watching it both clinically and with diagnostic testing. Then my father lost his health insurance and switched to another Medicaid plan, which his PCP did not accept.
In the jargon of the medical industry, my father was “lost in the pursuit.”
This is not uncommon, especially for racial and ethnic minorities and patients who are on Medicaid. While Medicaid has improved access for millions of Americans, many hospitals and doctors do not accept it because of lower reimbursement rates. Even when a site accepts Medicaid, it may only accept one or two of a dozen Medicaid plans. This limits access to care; it is well-documented that Medicaid patients have a much harder time getting appointments than patients with private health insurance.
To make matters worse, patients must regularly recertify their eligibility for Medicaid, a cumbersome process that often leads them to lose insurance for months or years at a time, especially now with the elimination of Medicaid coverage rules. continuously implemented during the COVID-19 pandemic.
This interruption of care leads to worse health outcomes, especially for cancer.
My father experienced the disruption first hand; he had difficulty finding a new PCP and waited more than a year for a new appointment while his symptoms worsened. In 2018, a new PSA test came back with results 10 times higher than the previous test. A biopsy of his prostate revealed a poorly differentiated cancer with a “Gleason score” of 8, which indicated an aggressive form of prostate cancer. His urologist wanted to start therapy within the next few weeks, but when I looked at my father’s records, I saw that the diagnostic workup was incomplete and the proposed treatment was not in line with the latest science.
Again, this is not unusual. Patients with Medicaid, those eligible for Medicare and Medicaid, and those without insurance have a lower chance of receiving appropriate, evidence-based treatment. Cancers with certain genetic biomarkers can now be treated with targeted therapies, which cause fewer side effects. But patients of color and those with government insurance are less likely to be tested for those biomarkers. And even when a biomarker is found, targeted treatment isn’t always available. A recent study found that up to 33% of Medicaid patients eligible for newer, less toxic lung cancer treatments were not offered them—even though they are now considered first-line therapies.
In my father’s case, frustrated with his urologist, I insisted that he be transferred to a comprehensive cancer center—a process that took another month because of insurance barriers. Once he was in the system, he was correctly staged, found to have widespread bone metastases, and started on a newer treatment regimen. His PSA is now undetectable and his cancer is in remission. But he had a significant delay in treatment. What would have happened if the cancer had spread further to his other organs?
Unfortunately, my father’s story is not unique.
Racial and ethnic minorities, who make up a large percentage of Medicaid patients and are disproportionately affected by social determinants of health, have lower rates of appropriate cancer screening. When they are diagnosed with cancer, treatment regimens may not be appropriate and there are significant delays to care. Very often, your health insurance status or your race determine whether you are offered biomarker testing or access to comprehensive cancer centers, which may offer additional treatment options, such as clinical trials.
These structural barriers are embedded in our health care system. If we do not address them, millions of marginalized patients will continue to be “lost to follow-up”.
Joshua A. Budhu is a neuro-oncologist at Memorial Sloan Kettering Cancer Center. He holds an MPH in health policy from the Harvard Chan School, an MD from Morehouse School of Medicine, an MS in biomedical sciences from Rosalind Franklin University, and was a 2021-2022 Commonwealth Fund Fellow in Minority Health Policy at Harvard.
Photo: Courtesy of Joshua Budhu