Chronic disability casts a shadow over the lives of people who live with it. One can never be sure when the condition or illness will flare up or be permanently exacerbated. Even when times are good, it’s difficult to focus fully on long-term projects like career or education, knowing that a setback could be just around the corner.
Kristina Brown’s mother’s multiple sclerosis was under control for much of Brown’s childhood, and her family was financially healthy. That changed when Brown was a teenager and her mother’s disease worsened to a debilitating level. Her mother’s need for home care required Brown to devote significant time each day when she was still just in high school. Her parents divorced when Brown was in college, further reducing resources available for care. Only Brown and one of her sisters acting as caregivers kept their mother alive.
So it was that when Brown was accepted to Yale School of Medicine (YSM), normally among the happiest days in a young student’s life, she was faced instead with a terrible choice: continue caring for her mother at home, foregoing a career in medicine, or pursue her dream and accept major financial risk and indebtedness by taking out student loans to not only pay for her education but also for the care of her mother.
Luckily for Brown, for YSM, and for the United States, she took the latter path. Now a fourth-year student at YSM, she has a lot to say on the subject of equitable treatment of individuals with disabilities as well as fair compensation for caregivers. “We have a health system that is full of gaps, where entire groups of people are routinely overlooked,” said Brown. “And we have an economic system where caregivers go into debt and make unthinkable sacrifices taking care of loved ones. It doesn’t have to be this way.”
The gap to which she refers, and which is referenced in an op-ed she published in the Washington Post, has to do with health insurance coverage. Her mother made too much money to qualify for Medicaid, a health care system that covers the poor, but her private insurance did not cover home health care for such daily needs as bathing and personal hygiene. And in any case, private insurance did not leave Brown’s mother with enough money to pay for home care along with a mortgage and all other expenses. Medicare, the health system that covers elderly patients, kicks in only when one reaches 65. What is a middle-aged, middle-class disabled person to do?
Brown wrote about the dilemma. Titled “My family faces an impossible choice: caring for our mom, or building our future,” the article took months of drafting and energy, as well as some assistance from a writing mentor, Anna Reisman, MD. When the Washington Post published the article, it went viral, and Brown received an invitation to testify in front of Congress a week later. She did so at a hearing in honor of National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. “It was a great honor to get to speak in front of Congress,” she said.
Hopeful about the potential for future reforms, Brown said that extended disability is something that everyone should care about. “If you’re in the middle class, it can happen to you,” she said. “Imagine your son or daughter donating hours of their lives to your care out of financial necessity. That’s the reality many Americans live with today.”
The article has had two outcomes that give Brown great hope: first, responses by people in her position who have said the op-ed inspired them and made them realize they aren’t alone; and second, opportunities to cover expenses while she’s still in New Haven and unable to give her mother the necessary assistance.
One such source of assistance is a GoFundMe page that Brown set up with the goal of raising $80,000 for home care for her mother. As of this writing, she has raised $14,339 of the total needed—a not-inconsiderable sum, though short of her goal. “I thought about leaving medical school before the piece came out, to return to caregiving for my mother,” said Brown. “I had explored and applied for every option for financial assistance, and without any forthcoming, I felt trapped and desperate. The community has responded so well, it’s amazing.”
Brown’s next stop will be residency at UCLA, in Medicine-Pediatrics. She hopes this will help her to grow as an advocate for individuals who through no fault of their own lack voices; those with disabilities; and those systemically disenfranchised by dysfunctional political institutions.