Woman To Walk 100+ Miles To Help Relieve Medical Debt

NORTH FORK, NY — One North Fork woman is readying to set off on a journey of more than 100 miles to raise awareness about what she says is a broken healthcare system that leaves millions crippled with debt every year.

The idea for her fundraiser, Miles for Medical Debt, was born from her own struggles with healthcare, said Southold resident Alexa Suess.

"When I was 19 years old, I had my first bout of severe abdominal pain. Thinking it was just some cramps, my ER doctor sent me home with some Advil," she said. "One year later, I was over a quarter-million dollars in medical debt."

Her abdominal pain was accompanied by vomiting and jaundice, and would ebb and flow with no apparent cause, Suess said.

"When I went through those bouts of pain, I couldn’t walk, I couldn’t stand. I couldn’t even sit still because the pain was so incredibly bad. It got exponentially worse over the course of six years. I went to a litany of doctors and endured a host of examinations — from stress testing to MRIs to having to eat radioactive eggs," Suess said.

Eventually, a specialist at Weill Cornell Medicine in New York diagnosed her, when she was 25, with chronic necrotizing pancreatitis due to a faulty bile duct.

"A rare complication, it’s something that I likely had since birth but only started to affect me later in my life. There’s not much research on it and there’s no cure — the only option is symptom management and a severely limited diet," Suess said.

Suess did not have medical insurance when she became so gravely ill, she said. "My then-employer didn’t offer it and between crushing student debt and housing costs, insurance wasn’t really an option."

Suess said she doesn't often talk about her chronic illnesses. "I never wanted them to be the things that defined me," she said. "And, because I got sick when I was so young, it took some time to process how much it stole from me — financially, physically, and psychologically."

But facing the challenges of being chronically ill has taught her not only about her own challenges, but also about the injustices of the American healthcare system, she said.

A year ago, she was also diagnosed with antiphospholipid syndrome, a condition in which the immune system creates antibodies that attack tissues in the body, she said.

"These diagnoses have cost me a lot. I specifically remember lying in a hospital bed at 20 years old as a patient advocate tried to explain to me how I would possibly have to file for medical bankruptcy. I tried to listen but I was sobbing so hard that it was difficult to hear her," she said. "The thought of having to file for medical bankruptcy before I was legally able to drink was — and still is — absurd. "

Faced with daunting financial challenges, Suess decided to fight for effective change.

"No one should have to consider cost when they seek medical help. And yet, in this country so many have to — whether it’s the person learning how to manage a chronic illness, someone bravely battling cancer, or a diabetic who can’t afford their daily insulin, which is 25 percent of insulin users, by the way. Ridiculous," she said.

In May, Suess will walk nonstop from Central Park in New York City to Mitchell Park in Greenport, a distance spanning more than 100 miles. "Walking those 100 miles is representative of how far we have to go to overhaul the healthcare system in America," she said.

Suess said she is not a policy expert. "I can’t provide a singular solution for fixing the behemoth that is the American healthcare system. But I do think we can all agree that instead of focusing solely on shareholders, our system needs to instead focus on serving the American people," she said. "I know so many doctors that want to provide better care for their patients but they are simply not able to because the system has become solely profit-driven. Taking stakeholders and middlemen out of medicine is one way we can improve the system. If every other wealthy country in the world has adopted some form of centralized universal healthcare, I am confident that we can as well. A healthy nation is a productive, educated, and happy nation. Our health is a collective indication of our successes and failures as a country."

Every dollar raised by Suess's walk going to benefit RIP Medical Debt, a New York-based 501c3 that pays off portfolios of medical debt for low-income households all over America, Suess said.

"Will this walk overhaul our healthcare system? No. Will it automatically start a Medicare for all program? Nope," Suess said. "But what this walk can do is help someone who is struggling to afford chemotherapy. It could help the person who is drowning because they can’t afford their daily insulin. Will it possibly help a rail-thin jaundiced 20-year-old woman sobbing in a hospital bed like me all those years ago? Yes. If this helps one person pay off their medical debt, that’s enough for me."

The walk, she said, is also a reminder to keep going — to push your limits and to keep moving forward one step at a time. "Whether that’s getting up the energy to take a shower today or going outside for a run. Chronic illness specifically can be insidious in its invisibility. It’s important that we give ourselves and others compassion, grace, and support," she said.

For others facing medical challenges, Suess offers words of hard-won advice: "Allow yourself grace. Allow yourself compassion. Just keep going — one step at a time."

To donate to RIP Medical Debt, click here.