By Mahboobeh Mahdavinia
Alanna and Anthony are not yet ten years old, but they have been to the emergency room more times than most adults. Every few months since they were babies, their parents have raced them to the hospital for asthma attacks, superinfections of their severe eczema, or food allergy reactions. They each have been intubated twice in their precious few years of life.
But for the last year, Alanna and Anthony have not had to come to the ER in crisis. Instead, their parents have brought them to see me in my allergy clinic for scheduled medication shots and follow-up visits. I consider Alanna and Anthony a success story, or at least the start of one. But most hospitals would not – and neither would insurance companies.
The truth is, Alanna and Anthony have missed multiple appointments, and consequently missed almost half of their shots. Other patients I see have similar spotty records. Administrators who oversee my clinic have pointed out the large cost of no-show appointments. When inconsistent patients do come, their appointments often go overtime, creating conflicts with nursing and staff schedules. Some other hospitals and clinic administrators would almost surely have come up with plans for dismissing Alanna and Anthony from the practice. However, we have all come to the agreement that we should do whatever it takes for them to stay as long as they choose.
Alanna and Anthony’s parents are battling their own medical conditions. They also have another child who needs regular medical attention. I try to offer them more than the benefit of the doubt — I try to give them credit for doing their best to take care of three sick kids. I take pride in knowing that our clinic is the first they have stuck with for more than six months. Maybe they have stayed with us because they don’t feel judged. More importantly, I hope my colleagues and I have shown them there is a way of out of this precarious situation
Every day children with asthma and food allergies die from preventable causes. African American children like Alanna and Anthony have a three-fold higher risk of dying from asthma or food allergy-related reactions. These rates persist, even though most children in very low income families in the United States have the opportunity to be covered by Medicaid or a state children’s health insurance program that would enable them to see excellent specialists. Medicaid covers most of the state-of-the-art treatments for asthma, but it cannot change how people feel about themselves or their diseases. But maybe we as health care providers can do that.
Patients come to us for help, but also hope. They take that first step and ask if we can figure out what is causing their maladies and make them better. If our patients know about their diseases and the potential to get better, they can hold on to their hope.
I have seen the power of the mind over the body not only as a doctor, but as a patient. When I was seven years old, I was struck with a rash all over my body, aches and fatigue. By the time I was taken to the emergency room, I could not move. In between periods of pain and high fever, I had few moments of lucidity. I recall the face of the doctor clearly, even today. She looked in my eyes, held my hand firmly, and told me in a very steady voice: “You will be all right.” The next few days I recovered very quickly. Since then I knew that I wanted to be that doctor one day — someone with steady hands and eyes, who can instill hope in her patients.
Many of us in medicine have had such dreams and inspirations, and they can fuel us the same way our hope can fuel those we treat. Our patients — especially those who deal with health disparities — are often in despair. They lose hope. They lose their faith in the health system: doctors, nurses, social workers, all of it. By encouraging them, fighting for them, and showing them we truly care, I believe we can make an impact on their health well beyond the medicine we provide. A hopeful patient always does much better than one in despair.
Of course, there are numerous factors linked to health disparity we cannot change. However, we can help patients believe they can have better outcomes. We can show them that we will work with them and not turn them away if they fail to live up to our highest expectations. This optimism can in turn improve their adherence and follow up, practices that indeed can go a long way.
Mahboobeh Mahdavinia, MD, PhD, is an allergist/immunologist and assistant professor of medicine at Rush University Medical College. She is a physician/scientist and spends her time taking care of her patients and her family, teaching future allergists and doing research on the effect of environment and disparity in allergic diseases. She is part of the Public Voices Fellowship with the OpEd Project and editor of the book Health Disparities in Allergic Diseases.