Armed with hot coffee and signs, about a dozen chronic pain patients braved temperatures in the teens and an impending snowstorm to rally outside the State House Tuesday.
Their message to policymakers: Don’t punish pain.
Chronic pain patients say they have become victims of government efforts to combat the opioid epidemic, as doctors have cut back on prescribing these medications and insurers have refused to cover them. Instead of making speeches, rally attendees handed out informational flyers to passing lawmakers and engaged them in conversations, asking them to consider pain patients when adopting policies around prescription drug use.
Lauren Benson of Gilmanton was wearing two layers of pants, three shirts and a sweatshirt under her snowpants and jacket. She said she came to Concord “to get the word out about people who are suffering in chronic pain and are worried about being tapered off their medications.”
Nine years ago, Benson was working as an EMT when she “blew out” her back; she was 23 years old. She’s now disabled.
Benson said patients like her are “just trying to get through our every day as comfortable as we can.”
She said she knows many patients have it far worse than she does, and she came to the rally to speak for them.
“They’ve been on pain medication longer than I’ve been alive and all of a sudden it’s: ‘No, stop, no more for you,’” she said. “What are they supposed to do? They’ve been taking their meds properly.”
Amy Slater of Chester, one of the organizers, said patients are frightened.
“There are so many people suffering, who live in pain 24/7,” she said. “Many of them have very long, documented histories with their physicians, and they’ve been cared for with these pain medications.”
But now, she said, “People are having their medications taken away from them. It’s scary.”
Similar rallies were held in cities across the country. Ellen DeFelippi of Westminster, Mass., drove up to Concord when she couldn’t find a rally down there; she wanted to be here for her daughter, who suffers from a debilitating condition, she said.
“When I watch my daughter go through what she’s going through, you better believe it,” she said. “She’s 33, with a 2 1/2-year-old, and she can hardly take care of him most of the time.”
But DeFelippi said, “When she goes to the emergency room, they treat her like a drug addict.”
Organizers said they were not discouraged by the low turnout; mobility can be difficult for many patients, and cold weather can make pain far worse.
Bobbi Blades, who runs a support group in Concord that is affiliated with the U.S. Pain Foundation, was chatting with Dr. Daniel Potenza, who stopped by on his way to a hearing in the Legislative Office Building. In her group, she hears from a lot of pain patients who are having their medications diminished, Blades told him.
“Can you carry our message back in small ways?” she asked Potenza. He would, he replied.
A woman named Tracie, who did not want her last name published, said she was there to speak for her husband, who has a degenerative spine condition. He’s afraid of surgery, and relies on low-dose pain medication, she said.
She wanted to draw attention to the stigma she says now surrounds prescription pain medications as a result of the illegal drug epidemic. When her husband goes to his doctor’s office to pick up his prescription, she said, “There’s just this kind of feeling that people are looking at him funny.”
And going to a pharmacy is even worse, she said. “He’s greeted with a sign that says, ‘If you’re picking up an opioid prescription, we have Narcan,’” she said.
“These patients aren’t doing anything wrong, and they shouldn’t be punished for wanting to just be comfortable,” she said. “They’re putting the focus on the wrong group of people.”