Steven Hadfield
Access Challenges Prompt Zeal for Advocacy
By Audrey Ingram
He spent a portion of his 71st birthday reviewing his script for the press conference. The following day, he felt no nerves—only excitement—as he stepped up to the podium.
“I felt super great to be invited to the White House,” shares Steven, who lives in Matthews, North Carolina. “I never could have imagined I’d introduce the president.”
The legislation meant that starting in 2023, people with diabetes who were on Medicare saw their insulin costs capped at $35 per month. Another drug selected for price negotiation was the diabetes medication sitagliptin, a key treatment for Steven.
This change was a major win for Steven and others living with diabetes and diabetic peripheral neuropathy (DPN), and represented the merging of his life with diabetes and the advocacy that has become an important part of his journey.
“I don’t like to see other people go through what I go through,” Steven says. “It feels good to see my advocacy work making an impact.”
DIAGNOSIS BRINGS MAJOR CHANGES
One night in 2013, while Steven was working at Walmart, his coworkers called an ambulance after noticing he seemed weak and confused.
Doctors determined low blood sugar had caused the episode, and diagnosed Steven, then 61, with type 2 diabetes.
In 2014, Steven was also diagnosed with Waldenstrom macroglobulinemia, a type of cancer that begins in the white blood cells.
About a year later, he began experiencing chronic neuropathic pain in his feet, which his doctors told him can be caused by diabetes. His pain is intermittent—but when it hits, his legs and feet cramp so badly that he can’t walk.
“When it first started happening, I used to tell the doctors my feet felt like I was walking on bricks,” he recalls. “And my feet felt heavy. But they never really understood what I was trying to say.”
It would take five more years for a doctor to formally diagnose him with neuropathy. And he had to travel out of state to find her.
“I had a local doctor here in North Carolina, but they just weren’t willing to try different treatments,” he explains. “It seems like they research more up north in Boston and New York, and down in Atlanta. You have to travel to the big cities to try new treatments.”
Steven began to make regular trips to research clinics in all three cities, seeking treatments for both his blood cancer and his neuropathic pain. After a second episode in New York where a blood sugar crash prompted onlookers to call him an ambulance, he significantly changed his diet, reducing carbs and sugars to manage his diabetes.
In 2016, he connected with a pain management doctor in Atlanta, who provided him with one of his most-effective pain management treatments to date—a spinal cord stimulator. This device is implanted in the lower back and sends low levels of electricity directly into the spinal cord to block pain signals before they reach the brain.
But after he accidentally disconnected the internal wires that power the device while lifting heavy items at work, necessitating a corrective surgery, Steven’s doctors restricted him to lifting no more than 35 pounds. He was already not allowed to climb ladders, and pain left him unable to stay on his feet for long periods of time. After a decade at his job, he was let go in 2021.
Now, Steven—a lifelong sports lover—serves fellow fans of football and basketball as a suite attendant at the Bank of America Stadium and Spectrum Center.
In some ways, he realized, the job transition made his life easier. He doesn’t have to schedule work around his retail shifts. He’s able to sit down when he needs to. And he’s even been able to branch out into working on the catering team at the stadium.
But losing his full-time job meant more than losing a stable paycheck; it also meant losing his employer-sponsored health insurance, forcing him to navigate the world of Medicare and the Affordable Care Act marketplace.
STEPPING UP
After his diabetes diagnosis, Steven found it challenging to find affordable care and treatment.
“It’s a very hard situation to get what you need, especially if you’re a diabetic or something long-term that you can’t just go in and fix,” he says.
As he learned how to navigate the health care system, Steven began to advocate for fellow patients, connecting with organizations like the American Diabetes Association and Patients for Affordable Drugs.
His advocacy helped contribute to a series of wins in 2023. As part of his efforts related to the Inflation Reduction Act, Steven was tapped by Patients for Affordable Drugs to speak to Congress about his experience with sitagliptin, and how the high costs particularly hurt individuals in low- and middle-income households. Zoom enabled him to testify without leaving home—he hopes to testify again in the future as additional drugs come up for price negotiation.
Steven is quick to call his elected representatives to push for change when organizations like Patients for Affordable Drugs highlight important potential policy changes and laws. He also spreads the word via his own network and encourages other patients to make their voices heard. And he’s always prepared to share his story if there’s any chance it can make an impact.
Steven previously had a stomach monitor that continuously monitored his glucose levels, providing blood sugar readings without finger pricks. But after losing his employer-sponsored insurance, he discovered that Medicare only covered this type of device for individuals who needed multiple insulin shots each day. Thanks to new Medicare rules that eliminated that requirement, making those who take any amount of insulin eligible for coverage of this type of device, Steven got a new continuous glucose monitor in 2023.
“It’s hard pricking your fingers four to five times per day. Your fingers get really sore,” Steven shares. “I’m so glad the government lessened their restrictions on what they’ll pay for. This is so much better.”
BUILDING NEW HABITS
Roughly a decade after his initial diabetes diagnosis, Steven feels like he’s found a pain management regimen that consistently works. He’s able to get out more days than not. He and his wife, Stephanie, book cruises across the Caribbean. And transitioning out of retail and fully into the sports world has given him more time to spend with his grandkids.
Steven’s current diabetes care regimen includes sitagliptin, his continuous glucose monitor, and his spinal cord stimulator. But the biggest factor is managing his diet.
“I like Chinese food, I like pizza, but that’s all high in sugar,” he says. “You have to watch what you do, and take it one day at a time. It’s always a big adjustment.”
It’s also important to build a real relationship with your doctor, and make sure you have a good endocrinologist to help you monitor your diabetes, he shares. These days, he sees a local primary care doctor in North Carolina every two months for his routine diabetes tests, and he travels to Boston quarterly to connect with a pain management specialist.
“My doctor now, she’s willing to take the time and not rush. And she’s willing to try different things that might work,” Steven says. “Sometimes I bring things I’ve heard about; sometimes she brings up new treatments and suggestions.”
That relationship has enabled Steven to try different medications and devices to find what works best for him.
Keeping a positive outlook has been important on his journey as well.
“Just stay strong,” he says, “and take it one day at a time.”