The plan was set: on May 21, APTA would hold a congressional briefing on the importance of increasing patient access to nonpharmacological approaches to pain treatment. The event would be highlighted by the story of Cindy Whyde and her son Elliott, who became addicted to prescription opioids, and eventually heroin, after receiving an opioid prescription to treat a high school football injury 9 years ago. Elliott's road to recovery has not been easy.
But the briefing didn't go as planned. Days before the Whydes were to travel to Washington, DC, Elliott relapsed into addiction and disappeared. Cindy came to the event alone, determined to do whatever she could to effect change. At the time of the event Elliott had been missing for 3 days.
"That is one of the worst fears any parent should have to go through, not knowing where their child is and what's going on with them," Whyde said.
And like any parent, Whyde couldn't help thinking about how things might've been different.
"It runs through my mind all the time—if someone had given us an option other than pain meds when he was 17 years old, where might we be right now?" Whyde asked. "Elliott might be here right now sitting where you are. Instead I don't know where he is."
The APTA-hosted event consisted of 2 separate-but-nearly-identical briefings, one for US House of Representatives staff, sponsored by Rep Rosa DeLauro (CT), and another for the Senate, sponsored by Sen Charles Grassley (IA). Essentially, the briefings were a set of object lessons in the ways health care policy affects lives in real and direct ways, with attendees receiving a clear overall message: changes, such as those suggested in APTA's white paper "Beyond Opioids: How Physical Therapy Can Transform Pain Management to Improve Health (.pdf)" need to happen, and soon. [Editor's note: scroll down in this story to view a video of the entire House briefing.]
Whyde was joined by Jen Bambrough, PT, DPT, and Sarah Wenger, PT, DPT, who provided personal perspectives on the need for better pain treatment options. Bambrough described the increasingly debilitating injury she received after a car accident in high school, and how, after multiple physicians, opioid prescriptions, imaging, and a visit to a neurologist, nothing was getting better. Finally, just as insurance company lawyers were beginning to question "whether I just wanted attention," Bambrough began seeing a physical therapist (PT). She worked with multiple PTs after that—some better than others—but eventually found a path to full health. Her experience inspired her to pursue a career in physical therapy, and she graduated with her DPT this year.
The years of opioid-led treatments "made me very hopeless," Bambrough said. "I just wanted to tell them, 'I want to work, I want to go back to coaching, I want my life.'"
Wenger, a clinician, educator at Drexel University, and volunteer at Drexel's 11th Street Family Health Services clinic, emphasized the importance of interdisciplinary collaboration and genuine conversations with patients.
"I've heard that story a thousand times," Wenger said of Bambaugh's disjointed treatment experience.
It doesn't have to be that way, she pointed out, relating the story of an 11th Street patient who arrived in pain from a sprained ankle. She was fearful of the injury for several reasons, including the possible ramifications from a less-than-empathetic employer, that were making the pain experience worse and pushing her down a path toward chronic pain. Finally with the help of an art therapist, the patient was able to express her fears, providing Wenger and other clinicians on her team with insight and allowing them to provide the person-centered treatment she needed to fully recover.
Unfortunately, a few years later the patient experienced a neck injury from a car crash, Wenger said. Instead of receiving coordinated care for her pain, she followed a path directed to her by her attorney that involved multiple disparate providers and procedures. When she finally returned to Wenger's clinic, she was experiencing chronic pain.
But it was Whyde's experiences that brought the current problems in pain treatment policy into starkest relief.
Elliott, "my red-headed fireball," as Whyde sometimes refers to him, was a dedicated high school football player with prospects for playing in college. During his senior year, he experienced a shoulder injury but was determined to return to play as soon as possible. According to Whyde, the physician they saw said that the injury would continue to bother Elliott, and prescribed opioids to help him get back on the field.
The rest of Elliott's story is, in many ways, too familiar.
When his prescription ran out, a teammate gave Elliott leftover opioids from his prescription. After football season ended, Elliott continued taking the pills, and when the pills became impossible to find, he began using heroin. His addiction continued into the late summer. When he arrived at his college team's football camp, he stopped using and experienced withdrawal symptoms. Except neither he nor his mother understood that's what was going on.
Eventually, the addiction won out. "By the end of that semester he was a full-blown addict and dropped out of school," Whyde said. "It was 'off to the races' at that point."
Over the ensuring years, Elliott was in and out of treatment, staying clean for sometimes-lengthy periods of time but eventually succumbing to his addiction. At one point, Cindy had to administer 2 doses of naloxone to save her son from an overdose in their home.
Things began looking better more recently. Elliott stopped using, thanks to treatment, and began working for the treatment center that helped him. Then he relapsed again, disappearing days before he was to tell his story on Capitol Hill.
Whyde, a high school teacher, sees education—especially prevention education—as the key to disrupting the devastating pattern she witnessed. And she believes that education must include more information on alternatives to opioids in the treatment of pain.
"We do the best that we can with the knowledge that we have. I know I would do anything I could to make life good for my children," Whyde said. But despite these intentions, an inadequate understanding of the dangers of opioids and a lack of information on the potential for other approaches to pain can lead to devastating results.
"[Elliott] didn't want to become an addict—nobody wakes up and says 'I want to be an addict,'" Whyde said. "There are so many other things that should be done rather than go immediately to a pharmacological method of treating pain."
APTA continues to build on its successful #ChoosePT campaign to educate the public on safe, effective alternatives to opioids for pain management. The most recent addition: a downloadable pain profile chart (.pdf) that makes it easy for patients to assess the severity and impact of the pain they're experiencing.