12 May Opting-Out of the Affordable Care Act, an OpEd Perspective
Post written by Linda Stotsky
*Editor's Note: The mission of the Center for Innovation is to transform the delivery and experience of health and health care. This article is poignant on what drives us to innovate in health care.
Twenty-five states didn't take up the Obamacare Medicaid expansion at the beginning of this year. Many of the uninsured are patients in the lowest-income demographic. Instead of having a choice regarding healthcare, millions are on state-run Medicaid programs.
Women make up the majority of poor uninsured adults. My daughter is one of them. She is college educated, speaks English and was born in the USA. Her health coverage is through the state, because her state “opted out” of the ACA. Pre-natal care was unremarkable. She saw NPs for all visits leading up to the birth, with delivery and follow-up hospitalization at a university medical center. Everything seemed to be fine until it wasn’t.
When the baby was about 4 months old she went to a walk-in clinic for what she thought was a toe fungus. This action in all probability saved her life.
Blood work showed an abnormality in her thyroid. The bottom line, Thyroid Cancer. She was a new Mother with an infant at home. A normal, sleep deprived 24-hour day was tiring enough without surgery, radiation therapy and the adverse side effects of Cancer.
She turned to multiple patient portals, and multiple providers of care for information. Written reports were hard to come by. In fact any information related to diagnosis, treatment, care management or prognosis was obtained from Dr. Google. When she finally found something in her medical record via the portal, it made no sense. She was scared and vulnerable, and the diagnoses kept coming. She ended up having two major surgeries within a twelve month period. Hospitalization, radiation, gallbladder surgery and ongoing diabetes management. No one seemed to be “in charge" of communicating much less coordinating care.
The Affordable Care Act “puts consumers in charge of their health care. Under the law, a new ‘Patient’s Bill of Rights’ gives the American people the stability and flexibility they need to make informed choices about their health.” Yet the millions of Americans who fall outside the reach of the ACA continue to have VERY limited options for care, coordination and disease management. The Centers for Disease Control and Prevention cited a National Health Interview Survey that found that almost 80 percent of adults who visited EDs over a 12-month period did so because of a lack of access to other healthcare providers.
Such is the life of a woman with cancer, in a state who opted out of the ACA. As we contemplate repealing the ACA in states that recognize informed choice, this is where more patients like Jane are headed. To a system that carries more weight, less transparency and the piling on of medical debt. We will go back to a sick managed care system that never reconciles care improves quality or informs patients. We will be engaged, but not with patients. We will instead be mired in continuous policy debate over the right to make informed choice about healthcare.