"Doctor, no one should die like she died. We couldn't do anything for her even though there were ways to treat her."
Prior to the passage of the Affordable Care Act (ACA), I had a patient whose story has motivated me to action ever since.
My patient, who I will call Sarah to preserve her identity, was in her late forties. Sarah was married with kids. She had a new job after being out of work for a couple years, but was in the first six months of that job and on “probation,” which meant her health insurance did not kick-in until her probation was up. So, though she was employed, she was still uninsured.
A couple months into the job, she noticed she began losing weight. That bothered her but she didn't seek medical help because she wanted to make it through her six month probation without any problems. As time went on she started feeling worse. Finally, one week before her six month probationary period was up, she was so sick she couldn’t go to work. That’s when she finally came to see me.
I examined her and immediately felt a large mass in her abdomen. The way that a cancer feels make your heart sink as a physician. Cancer feels hard, not firm or soft - you know it right away. She never went back to work. She never got insurance coverage.
We worked with specialists to provide discounted care to determine her cancer type, metastatic kidney cancer, and identified a new treatment available for advanced kidney cancer that might extend her life, but it was more than $30,000 per month. We worked hard with the drug company to get the medication free for her and, after many phone calls and much paperwork, it arrived on her doorstep three months after I first saw her.
After she died, I ran into her husband at the grocery story. We greeted each other and with tears in his eyes he said to me, “Doctor, no one should die like she died. We couldn't do anything for her even though there were ways to treat her. Everyone should be able to get medical care when they need it and should not be afraid that they'll be denied care just because they're sick. That makes no sense - that's when people need help. Please, please tell her story to others. She cannot have died in vain."
Remembering how things were nearly a decade ago still brings tears to my eyes. As a new doctor, I felt like I had taken an oath to heal, but too often had both hands tied behind my back because people lacked the coverage they needed. I will not go back to that time.
For Sarah, and the millions of patients currently benefiting from coverage thanks to the ACA, I donate my time and money to Doctors for America. I urge you to join me in giving what you can in this critical moment.
Evan Saulino, MD PhD