One morning in November 2009, I woke up dizzy – a cloudy feeling I couldn’t explain. I ignored it and continued my routine, seeing patients at a clinic in central Austin, carting my daughters to preschool. But when I developed double vision and taste changes, I started to worry.
As a doctor, I knew people. I consulted a fellow family physician over the phone and a neurologist during her lunch hour. I saw an ear, nose and throat specialist. Nine days after my symptoms appeared, I got a brain MRI and a diagnosis: multiple sclerosis. It was overwhelming.
A self-proclaimed health nut, I never expected to get sick, especially with a progressive brain disease – a leading cause of disability in young adults – at age 36.
Right away, I scheduled an appointment with an MS specialist and started medicine to reduce disease progression and disability. Despite some relapses, I’ve been stable for six years. I still go in for infusions twice a year. I live with an extra dose of uncertainty, but overall, I’m healthy with no limitations.
I’m one of the lucky ones with health insurance, family support and a steady income. Many of my patients over the years, some of whom suffered from even more serious ailments, lacked insurance. Together we struggled to navigate the complex web of services available, but often came up short.
Sometimes I imagine myself in that parallel universe. Would I still be able to walk, drive and work? Would I be drowning in debt, choosing between paying rent or buying medication?
Would I even know that I have MS? My transformation from doctor to patient, while I was directing a clinic for underserved and uninsured fellow Texans, highlighted the gross inequalities in our health-care system. I can’t know exactly how my life with MS would have played out, but without insurance, it would have been different:
1) My diagnosis would have been delayed. Without health coverage and ready access to a doctor, I imagine I would have waited until I was desperate or incapacitated before searching for a clinic.
2) I would have faced long wait times. In 15 of the largest U.S. cities, the average wait time for a new-patient appointment is 26 days, according to the 2022 Survey of Physician Appointment Wait Times and Medicare and Medicaid Acceptance Rates. It can be longer for someone without insurance. If I’d been referred to a specialist, I would have waited again, maybe for months.
3) Prompted by worsening symptoms or failure to find a doctor, I might have gone to the emergency department. There I probably would have waited hours to be seen, been shuffled through an unfriendly system with a limited capacity to provide the assessment I needed and still left without a diagnosis … but with a hefty bill.
4) I might have been misdiagnosed. My indistinct symptoms likely would have been chalked up to something else: anxiety, depression, a virus, an atypical migraine. Many people, even those with insurance, go months or years with symptoms of MS and no diagnosis, accumulating permanent neurologic damage.
Eventually, someone would have ordered an MRI – maybe during an expensive hospital admission for an MS complication – and the diagnosis would have revealed itself. But along the way, I could have ended up disabled from MS, unable to pay mounting bills, unable to work and stuck in a cycle of poverty.
The U.S. health-care system leaves too many people behind. In Texas, nearly one in five people lacks insurance – the highest rate among states and Washington, D.C.
I had the good fortune to receive the best available treatment for MS and lead a healthy, productive life. I long for the day when everyone receives the health care they need and deserve.
Lisa Doggett, senior medical director of Sagility, is a physician in Austin and a columnist for Public Health Watch. Her memoir, “Up the Down Escalator”, will be published in August 2023 by Health Communications, Inc. The views expressed in her columns do not necessarily reflect the official policies or positions of Public Health Watch or Sagility.