Rerouting Rivers: To Health Equity
A Message from Tamar Kaim, MA
NICHQ's Development Officer
Less than a year ago, I joined an organization that works toward a beautiful vision: All children achieve their optimal health. But my journey to NICHQ began already at age 13, when I flew to Paraguay with my mother and returned home to Boston with two more siblings: a 2-year-old sister and an 8-month-old brother whose crib – and nightly crying and contented smiles – became a fixture in my bedroom.
At 18 months my baby brother came down with a high fever that would not break. Scarlet fever, said the pediatrician, and prescribed antibiotics. She was an excellent doctor who guided me and my three siblings safely through all the cuts and scrapes of childhood. Over the following week, she reassured my increasingly frantic parents over the phone as the fever persisted. We tried to remain calm.
Finally, my mother called a family friend, a doctor and rare disease specialist at a Boston research hospital. He just happened to have read an article about Kawasaki disease the week before. After noticing my brother’s bloodshot eyes and other symptoms still fresh in his mind, our doctor friend diagnosed this dangerous and poorly understood illness of blood vessel inflammation, including vessels around the heart. My brother was hospitalized immediately and received massive infusions of intravenous immunoglobulin to reduce inflammation and risk of heart attack.
My baby brother is now 6 feet tall and could probably throw me over his shoulder like a sack of potatoes (if I asked nicely). My parents and I still look at him in disbelief sometimes, amazed at the random luck that overcame a potential human error or, perhaps, a random system failure.
Now that I work at a quality improvement (QI) organization, I wonder: Just how random was that failure? QI teaches us that human errors are inevitable. But harm is preventable through systems designed to compensate for the errors that can affect anyone and everyone. At NICHQ, we use QI to close the gaps that prevent all children from achieving their optimal health. I am glad we do.
But as a teenager with no knowledge of quality improvement, something at the back of my mind spent the years after that great fright haunted by a different question entirely: Was it really just random luck that my brother was diagnosed, treated and regained full health in spite of the system failure?
Not every parent feels empowered to call for a second opinion in the face of assurances from a respected pediatrician. Not every family has a doctor friend, let alone one who is an expert in rare diseases. Not every child who receives a proper diagnosis will immediately gain access to proper treatment – in my brother’s case, safe infusions of a specialized blood product in a well-equipped facility. And then not every parent could educate himself or herself about the disease, navigate the hospital system, and communicate and advocate effectively when (in my brother’s case) the hospital doctors reported shortages of the necessary blood product and planned to end the transfusions while the risk was still high.
The specter of my brother’s parallel existence – the “what if” we never adopted him? – made these painful speculations particularly acute. If he had come down with the same illness in Paraguay, what then? Or what if he immigrated with his Paraguayan family to the United States? Or if he came from a low-income family in Boston, an African-American family, a family in the rural South?
These are not new questions, and we know some of the answers. Leaving aside massive and heartbreaking global health disparities (which is not easy), just within the United States, income-related disparities lead to approximately one million preventable hospitalizations every year. Black infants have nearly two-and-a-half times the mortality rate of white infants. Rates of childhood obesity are higher for low-income whites and for other racial/ethnic groups independent of income level. Among preschool children hospitalized for asthma, only 2 percent of Hispanic and 7 percent of black children, compared with 21 percent of white children, are prescribed routine medications to prevent future hospitalizations.
I’ll stop there, but the list keeps on going. We clearly have a long way to go to ensure equity in access to and quality of care. Since its inception, NICHQ has worked to improve care for conditions with a disproportionate impact on certain populations, including asthma, sickle cell disease and obesity. What’s more, NICHQ reaches beyond the walls of medicine to connect with, learn from and influence the other parts of a child’s world that affect his or her health – and life course.
This is what I see when a hospital team in a NICHQ sickle cell improvement project incorporates a parent whose child suffers from the disease, so that his or her voice and experience can help design changes to the delivery of care. This is what I see when primary care clinicians, public health officials and school administrators combine forces to improve living conditions that affect childhood obesity – such as the availability of fresh vegetables and safe areas for outdoor play – and engage the whole community with culturally appropriate messages and tools. I see change that flows both ways and multiplies.
Healthcare as a social institution has great reach and power. As QI leaders, as healthcare leaders and providers, we have choices in how we harness and wield that power. When we choose to lead by challenging the status quo, the QI tools designed to chisel out incremental improvements just may break down walls and reroute rivers. And then, I envision, truly everyone’s baby brother (and sister) will achieve their optimal health.