For cancer patients, where they live matters
A Houston cancer care provider is trying to address the barriers that prevent coming in for treatment
For seven years, several times per year, Stephen Mansfield roused himself at 2 a.m.
The now-66-year-old would prepare for the three-hour drive from his home in Zavalla, Texas, to Houston, where he would undergo infusion therapy for kidney cancer. Without the money for a hotel, he often drove back home that afternoon, exhausted from the treatment.
He did not know about free hotel options available to him until last year, when a community health worker at Oncology Consultants, the practice where Mansfield had been receiving treatment, learned about his struggle and connected him to lodging through the American Cancer Society.
Mansfield became one of nearly 2,000 patients assisted by Oncology Consultants’ HOPE Initiative, which connects cancer patients with resources to address so-called social determinants of health, non-medical factors that can influence an individual’s health outcomes. Studies show challenges such as poverty, geographic isolation, low education, a lack of public health infrastructure, and a lack of transportation and housing can worsen mortality rates.
Often, though, patients do not know how to begin addressing those challenges on their own, said Robin Arrambide, the lead nurse navigator at Oncology Consultants.
“If we don’t ask some questions, people don’t realize that living in that house with the wind blowing through it, and the rain coming through the roof, is not normal,” Arrambide said.
Mansfield was diagnosed with stage 3 renal carcinoma several years after he worked as a safety advisor during the 9/11 cleanup effort at the World Trade Center in New York, where an estimated 91,000 workers were exposed to toxic dust, smoke and chemicals rising from the rubble.
The cancer lingered in his body after multiple surgeries, preventing him from working.
He was referred to Oncology Consultants for treatment in 2015.
The World Trade Center Health Program covered his treatment, but he and his wife still had to manage their finances carefully to make the most of his worker’s compensation from his longtime employer and the 9/11 Victim Compensation Fund.
Without money in their budget for a hotel, he accepted the regular marathon trips to Houston as a part of life, racking up roughly 3300 miles each year to and from his home, about 30 miles outside of Lufkin. He became accustomed to napping in his car before appointments and pulling over at rest stops to sleep when the drive back proved too taxing.
The HOPE — Holistic Oncology Patient Equity — Initiative started last year out of a desire to reach patients like Mansfield proactively before social barriers get in the way of treatment. A recent study in the Journal of Radiation Oncology showed that rural cancer patients are less likely to show up for radiation treatment and have poorer overall survival rates compared to their urban counterparts. Additionally, research published in 2015 found a connection between missed radiation and chemotherapy appointments and unmet socioeconomic and supportive care needs, especially those related to housing, among Black and Latino cancer patients.
The initiative involves a team of four nurse navigators and five community health workers, acting as liaisons between patients and clinical staff, who administer patient surveys, often before their first appointment. From there, navigators and workers scour nonprofits, government programs or charities to meet patients’ needs. That could mean directing them to a nearby food pantry, helping them find a cheap garage apartment or wrangling a free wheelchair ramp.
The workers speak English, Vietnamese and Spanish and share a direct phone number with the patient, to sidestep cumbersome phone systems when emergencies arise.
Hospitals and oncology providers do not always do a full needs assessment, said Susan Sabo-Wagner, executive director of clinical strategy at Oncology Consultants. In the past, the practice, which opened in Houston about 40 years ago and operates 12 facilities in the area, did not look at social barriers until a patient missed an appointment. By that point, some patients simply had stopped answering the phone, she said.
“We call them ‘Lost to followup,’ where we don’t hear from them again because too many things have happened,” she said. “They just don’t show up for appointments at all and don’t tell us and maybe they’re considered non-compliant, which is not necessarily a fair summary of what they are.”
The HOPE Initiative coincides with a broader push to improve equity and care coordination for cancer.
The Centers for Medicare and Medicaid Services last year announced the Enhancing Oncology Model, a voluntary six-year program that pays certain providers for lowering the cost of care, performing social needs screenings and collecting data on patient equity, among other services. Oncology Consultants has been accepted preliminarily to the program, Sabo-Wagner said, noting that its patient screening initiative began before the CMS announcement.
While not all oncology practices will participate in the new model, many are incorporating social needs assessments into their operations anyway, said Dr. Debra Patt, vice president of Texas Oncology, a network of physicians who treat cancer patients in underserved areas.
“The pandemic was a catalyst that made some of these issues far worse,” Patt said.
When COVID arrived, cancer screenings dropped off. Drug trials stalled. Treatment was delayed. The pandemic also pushed back the full opening of The Richard M. Schulze Family Foundation Hope Lodge near the Texas Medical Center — a 64suite hotel for cancer patients run by the American Cancer Society — and forced the nonprofit to pause its widely used transportation program.
Now, as operations return to normal, the challenge for Oncology Consultants will be spreading awareness and building trust with patients who may be hesitant to talk about their struggles. The provider aims to screen all of its roughly 6,000 active oncology patients in the next several years.
For Mansfield, the stress of his condition is fading. He secured a suite at the Hope Lodge in Houston for his most recent visit last month. After a short check-in, he was escorted to his room with two large beds and a separate living area, looking out over the medical center.
His last PET scan showed his tumor was gone. Even though he still needed infusion treatments in Houston, his clinic was less than a mile away from Hope Lodge. He would arrive the next day, finally, with a full night’s sleep.
“This makes a tremendous difference,” he said.