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, understanding these reasons intellectually is one thing. It’s another thing to see them play out in your own family. My father was diagnosed with metastatic prostate cancer in 2018. His experience reveals the many barriers that patients of color and low-income patients face in ensuring timely diagnosis, thoughtful follow-up and high-quality cancer care.
My father, Robert, was a retired real estate agent and a proud Guyanese immigrant who made sacrifices to give his children a better life. In 2015, his primary care physician (PCP) noticed he was having difficulty urinating and ordered a prostate-specific antigen (PSA) test. It comes back elevated. Given his age and symptoms, his PCP suspected prostate cancer. Prostate cancer often grows slowly, so his primary care doctor planned “active surveillance” — observation with clinical and diagnostic tests. Then my dad lost his health insurance and switched to another Medicaid plan, but his PCP wouldn’t accept it.
In medical industry lingo, my father was “lost to follow-up.”
This is not uncommon, especially for racial and ethnic minorities and patients on Medicaid. While Medicaid has improved health care for millions of Americans, many hospitals and clinicians do not accept it due to low reimbursement rates. Even if a site does accept Medicaid, it may only accept one or two of the dozen or so Medicaid programs. This limits access to care; it’s well-documented that Medicaid patients have more difficulty scheduling appointments than those with private health insurance.
To make matters worse, patients must periodically recertify their Medicaid eligibility, a cumbersome process that often results in them losing their coverage for months or years at a time, especially now with the changes implemented during the COVID-19 pandemic Cancellation of Continuous Coverage Rule.
This discontinuity in care can lead to worse health outcomes, especially cancer.
My father experienced this discontinuity firsthand. He had difficulty finding a new PCP and waited over a year for a new appointment while his symptoms worsened. In 2018, a new PSA test showed results that were 10 times higher than the previous test. A biopsy of his prostate revealed a poorly differentiated cancer with a “Gleason score” of 8, which indicates an aggressive form of prostate cancer. His urologist hoped to start treating him within the next few weeks, but when I reviewed my father’s records, I discovered that the diagnostic workup was incomplete and the proposed treatments were inconsistent with the latest science.
Again, this is not uncommon. Patients with Medicaid, patients who are eligible for both Medicare and Medicaid, and patients who are uninsured have lower access to appropriate evidence-based treatment. Cancers with certain genetic biomarkers can now be treated with targeted therapies that reduce side effects. But black patients and those with government insurance were less likely to be tested for these biomarkers. Even if biomarkers are found, targeted treatments are not always available. A recent study found that up to 33% of Medicaid patients are not getting newer, less toxic lung cancer treatments, even though they are now considered first-line treatments.
In my father’s case, I became disillusioned with his urologist and insisted that he be transferred to a comprehensive cancer center—a process that took another month due to insurance barriers. Once he was in the system, he was correctly staged, found to have extensive bone metastases, and started on a newer treatment regimen. His PSA is now undetectable and his cancer is in remission. But his treatment was severely delayed. What would happen if the cancer spread further to his other organs?
Unfortunately, my father’s story is not unique.
Racial and ethnic minorities make up a large share of Medicaid patients and are disproportionately affected by social determinants of health, receiving lower rates of appropriate cancer screening. When they are diagnosed with cancer, treatment options may be inappropriate and care can be significantly delayed. Many times, your health insurance status or race determines whether you can receive biomarker testing or access to comprehensive cancer centers, which can offer additional treatment options, such as clinical trials.
These structural barriers are embedded in our health care system. Unless we address these issues, 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 a master’s degree in health policy from Harvard Chan School, an MD from Morehouse School of Medicine, a master’s degree in biomedical sciences from Rosalind Franklin University, and is a 2021-2022 Federal Funds Fellow in Minority Health Policy at Harvard University.
Photo: Courtesy of Joshua Boudue