Story Bank: Scott, Leeds

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Scott, 35, Leeds

Scott was having trouble walking, couldn't open his eyes, and his fingers were tingling.

At the emergency room, his providers ruled out a brain bleed, a stroke, and a tumor.

Scott was told that he could have a magnetic resonance imaging (MRI) scan to help identify the issue, but he would have to pay $600 up front, since he didn’t have health insurance. 

He decided that the MRI was too costly and was sent home with the advice to take aspirin.

Three days later, Scott was admitted to a local hospital and diagnosed with a rare variant of Guillain-Barré syndrome.  The only identifiable cause was a common cold, which Scott had had two weeks earlier. Within days of being admitted, he was completely paralyzed from the waist up.

Guillain-Barré syndrome is a rare and life-threatening autoimmune disorder that can affect anyone, regardless of age. The immune system quickly reacts to a virus in a misdirected way, attacking tissues that protect nerves, ceasing transmission signals to muscles. Soon, nerves lose the ability to communicate with the brain, and the body becomes paralyzed.

At first, Scott couldn't do anything except hear and move his feet. Within a week of being admitted, he was on a feeding tube, a ventilator, and had a temporary pacemaker implanted. The first five of many treatments he received cost $10,000 each. Without health insurance, the cost was insurmountable.

Knowing that Scott did not have health insurance, hospital staff stepped in to help his mom navigate Maine's Medicaid system known as MaineCare.

"I didn't know anything about how to do it; I didn’t even understand some of the terminology," she said. "At a time when I should have been focused on a family member in medical crisis, I had to spend several full days to do all this, to gather all the documentation, which was extensive, and to complete the application process. It felt like a system set up to catch cheaters rather than to help people in need. I had a lot of flexibility in my work and throughout this whole thing I kept thinking, 'What do people do who have to work a very rigid schedule?'"

The application process included at least two rounds of MaineCare interviews, answering the same questions she had previously addressed in writing.

"We are all very grateful that MaineCare was available. However, if I were somebody who were easily intimidated, if I were somebody who didn't have a very high level of education, [and] if I didn't understand bureaucracies, it would have been a very difficult experience," she said.

Several weeks into what appeared to be a quick recovery, Scott was diagnosed with a second autoimmune disorder, one that attacked his blood cells, rendering him critically ill once again, and requiring a round of two different, equally expensive treatments, and a much higher level of medical care and coordination of specialties. 

Since Maine does not offer the type of specialty care Scott required, MaineCare covered his transfer out-of-state. Scott is still receiving treatments in Massachusetts, but is expected to make a full recovery and return to Maine soon. He is now able to speak and looks forward to using his hands-free technology to work from home as soon as possible.

MaineCare has enabled Scott to access lifesaving health care without the burden of enormous medical debt, from which very few people could recover. More importantly, Scott's mom believes that if he had not been approved for MaineCare, a full recovery and his return home might not have been possible. “In fact,” she maintains, "I don't think he would have survived without it.”