For some patients, high health costs and inadequate insurance are financially toxic Date: 12/11/19
By Liz Kowalczyk
Two years ago, I rotated onto the Boston Globe Spotlight team to participate in a project about race. My role was to document segregation in the city’s health care system. During the investigation, I grew interested in writing about another type of inequality in Boston medicine: How money, and the lack of it, affects patients and their care.
As it turns out, the issue has many twists and turns.
Seriously ill people with employer-based health insurance, for example, can find themselves buried under back-breaking medical bills for deductibles and copayments. Residents with Medicaid are financially vulnerable in a different way. Massachusetts Medicaid covers patients’ medical bills with few out-of-pocket expenses, but these patients have little savings to cover housing and food if they are too sick to work.
Some end up homeless. That is what happened to Marie Cajuste, a nursing home worker who was diagnosed with stage three breast cancer in 2016.
I had been thinking about how to approach a story on economic inequality when I heard a radio interview with Naomi Ko, M.D., an oncologist at Boston Medical Center, about how hard it is to be poor and have cancer. I scheduled a time to speak with Ko in her office and during that conversation she mentioned Cajuste, a woman who was evicted from her apartment when she couldn’t work during the most intense part of her treatment. Ko agreed to ask Cajuste if the Globe could document her experience.
Cajuste was initially uninsured, but when she rode the bus to the emergency room — a full year after feeling a lump — the hospital enrolled her in MassHealth, the state’s Medicaid program.
Unfortunately, she was still unable to avoid catastrophe. Cajuste was out of work for more than six months and, like many hourly, low-wage workers, she had no savings. After she was evicted, she camped out in her sister’s apartment for a few months and then rented a room, sharing a bathroom and kitchen, in a rundown rooming house where one resident was later shot on the front porch.
I decided the topic was worth an in-depth narrative story because the discussion around cancer in Boston mostly involves how to get an appointment with a top oncologist at Dana-Farber Cancer Institute. I have seen this with my own middle-class family and friends. They generally have the work flexibility and family support to ease, even if just a little, a difficult time. I wanted to open readers’ eyes to a different type of cancer experience.
My editors were supportive of the idea. I recruited a photographer, Craig Walker, whom I had worked with on another narrative piece. We began accompanying Cajuste to her medical appointments with Ko, chemotherapy infusions, and scans to check for cancer in her organs and bones. We visited Cajuste at her rooming house and took the bus with her to work. I interviewed her doctors and three grown children. The story, “Unhealthy divide. A double diagnosis — cancer while poor,” was published about six months later, in December 2018.
Given the state’s rich resources, I thought it was important to expose the gaps for poor patients. I exhaustively interviewed cancer charity organizations to document holes in their assistance programs. These organizations provide one or sometimes two rent or mortgage payments but do not offer longer term help.
We hit obstacles in terms of access to certain parts of Cajuste’s life. We wanted to spend time with her at her job, since working hard is central to her identity. But the executive director of the nursing home was uncooperative. He felt the story would put his company in a negative light because Cajuste could not afford the long-term disability insurance it offered, and the nursing home did not step in to help her avoid eviction.
I felt her employer could have done more for her, but I tread lightly because I did not want to cost Cajuste her job. This ended up as largely unexplored territory in the story. What is a nursing home’s responsibility to its direct care workers when they get sick?
To compensate for this lack of access at work, Craig and I rode with Cajuste as she took four buses for her shift, and I interviewed the daughter of a longtime nursing home resident she cared for.
We also had to work around Cajuste’s desire to protect her children from exposure. And she did not use email or social media, so that eliminated sources of information I often count on to help re-create past events. Cajuste was able to find an old phone that included text exchanges between her and her landlord, however. Those communications turned out to be crucial; they allowed me to say with confidence that he pushed her out of her apartment knowing she was sick with cancer.
I also asked Ko and Cajuste’s patient navigator at Boston Medical Center for their office notes, which were good records of their conversations about the eviction.
Cajuste’s doctors were naturally protective of her, but I thought it was essential that Craig and I develop an independent relationship with her so she could talk openly about her care. At first, a hospital spokesman told me it was the communication department’s policy to accompany us to Cajuste’s house at all times. I told him we could not do the story if that were the case, and the hospital reconsidered.
We are sometimes dependent on health care providers to connect us with patients, but I don’t think it’s worth going forward if they won’t step away at some point.
The reaction to the story was strong and swift. Many people wanted to donate money to Cajuste or to cancer charities and one reader mailed a large check for her to Boston Medical Center.
The story about Cajuste was part of an occasional series about economic disparities in medical care. Two other stories explored access to mental health care, where how much money a person has significantly impacts the amount and quality of care.
Massachusetts has more mental health care providers per capita than any other state, more psychiatrists than anywhere but Washington, D.C., and more child psychiatrists than all but D.C. and Rhode Island. (These workforce statistics are available for all states.)
But because so few psychiatrists and psychologists take private insurance (even fewer take Medicaid) even people in the middle class can’t afford top-notch care.
Liz Kowalczyk is an award-winning health care journalist and medical writer on the staff of the Boston Globe Spotlight team. Here are other articles Kowalczyk wrote about financial toxicity:
- At elegant McLean psychiatric outpost, $2,150 a day, and insurance is not welcome