By Jonathan Jimenez and Chloe Ciccariello
“Have you been able to tell your boss?” Ms. S looked down and laughed sheepishly. She was a sinewy, small woman who laughed frequently–reminding me of my mother. Her lean, muscular arms did not betray her uncontrolled type 2 diabetes diagnosis. Her hemoglobin a1c, a lab test used to tell us how well the disease is managed, had been zig zagging around 13% for years – way too high. This value indicates that she is at risk for all the terrible sequelae of diabetes – nerve problems, heart disease, kidney injury and blindness. Though most clinics like to see diabetic patients every 3 months, Mrs. S would show up annually, after she had run out medications. Diabetes is a silent disease at the beginning, with few external symptoms to indicate to the patient that they have any diagnosis, until the complications develop and it is too late. Doctors have a term for patients like Mrs. S, “non-compliant.” The very word itself seems to imply something negative about the patient, as though they are intentionally resisting years of medical research and the good intentions of the physician. However, Mrs. S wasn’t “non-compliant”, in the traditional sense. Talking with her about her weekend visits to her children’s homes or get-togethers with her friends it was clear she loved her life and being well. Our conversations about what was important to her kept coming back to living a healthy life.
For those of us who work in primary care clinics, this vignette is all too familiar. Chronic diseases are silent but deadly, and it is frustrating for healthcare workers to watch a patient with a manageable illness develop preventable complications. Not only is this a tragedy for the patient, but it is also a tragedy for our healthcare system as a whole. The actual monetary costs of the sequelae of diabetes are astronomical. The US spends over $40 billion ($30,000 per patient) on dialysis every year, and the number one cause of dialysis is uncontrolled diabetes and high blood pressure. Even more impressive, blindness costs the US $139 billion every year in wasted human resources.
Like all people, Mrs. S’s motivations are complicated. Ms. S works as a live-in housekeeper in Westchester during the week and lives in the Bronx during weekends. Her bosses did not know she had diabetes. She avoided checking her blood sugar and even taking her medicine during the work week for fear of being fired. It took several months before she opened up about this to me. For several additional months, I patiently encouraged her to inform her employers. She clearly cared about her health – she met with our clinic nutritionist, started exercising more regularly, but needed her job to support herself. So, she wasn’t yet willing to risk disclosure. I shared my mother’s story with her, also a single mother making time amongst long hours to exercise and keep the complications of diabetes at a distance. My mother’s success inspired her. Over several visits of encouragement, of sharing tidbits from my mother’s story, of patience and concern, she built up the courage. “Yes, I told him. It turns out his mother has diabetes, and they were very supportive!”
Mrs. S and I had built a relationship over many visits sharing our stories, successes, and fears. The trust we built would not have been possible over just a few visits. Barbara Starfield, a pediatrician and leader in primary care, called this a pillar of care “continuity of care.” For Mrs. S, “continuity of care” was, over time, coming to trust that her health was my top priority. “Continuity of care” to her became living a healthier life with reduced chance of life altering complications down the road. As a result, a few months later her hemoglobin a1c was down to 9%.
In our country, we spend a disproportionate amount of resources on new drugs, new tools, and new research. And yet for many patients, a steady relationship with a primary care physician – who they can call when they have questions and who will work with them on long term lifestyle changes – can mean the difference between health and disease. There is also an economic issue – only 5% of the overall 18% of GDP health care spending goes to primary care and to complicate matters further, 95% of internal medicine residents specialize. This is something that we at Primary Care Progress, a non-profit organization focused on revitalizing the pipeline of primary care providers, are trying to change. We believe that the number one way we can deliver more value into the US healthcare system is through revitalization of primary care. We need more motivated healthcare professionals, interested in making a difference, to enter this field and bring with them new ideas and new energy.
 Costs of ESRD: http://www.usrds.org/2011/pdf/v2_ch011_11.pdf
 Prevent Blindness: http://costofvision.preventblindness.org/overview
Jonathan Jiménez (@jonathanjimper) and Chloe Ciccariello are degree candidates at the Icahn School of Medicine at Mount Sinai and Columbia’s Mailman School of Public Health. They are both currently Clinical Innovation Fellows at Primary Care Progress.