Researchers agree that addiction is a disease. In this episode of Overcoming an Epidemic: Opioids in Pennsylvania, we'll look at how personal stories are being used to fight stigma. And how understanding genetics and the origin of the opioid epidemic might play a role in reducing stigma.
Emily Reddy (Narrator) – If there’s one word that comes up over and over again when talking about the opioid crisis – and really any substance abuse issue – it’s STIGMA. Tricia Stouch knows all about it.
Event Host – “Now we're going to have Tricia come up and join us and share her story.”
Tricia Stouch – “Okay, thank you. Thank you for having me. I appreciate it.”
ER – About 20 people have come out to hear Stouch tell her story at Schlow Library in State College. Stouch wears a pant suit and heels. She is so keenly aware of stigma – the idea that people who are addicted to opioids are bad people from bad circumstances – that when she shares the story of her daughter Pamela’s addiction she starts by telling the audience what an involved mother she was.
TS – “I've been a stay-at-home mother since 1996. So I'm going to dispel some myths here. I coached softball. I went on school trips. I was home when they came home from school. I was at everything and I was involved.”
ER – Then Stouch dispels another myth: that people who abuse drugs have a character defect and could stop if they just tried harder … her daughter Pamela was a really hard worker, taking college classes and holding down a job.
TS – “She had it all under control. She was doing it all.”
ER – But then her daughter met a boy… started smoking pot…drinking…taking Percocets. Eventually she was crushing and snorting OxyContin. Stouch found out about it and confronted Pamela.
TS – “She came at me physically. She ripped my necklace off, my glasses. She… this was not my daughter. This was not my daughter.”
ER – In that moment, Pamela’s need for drugs had taken over.
But a couple of weeks later, Pamela checked herself into rehab. When she came out, she just wanted everything to go back to normal. If that had been possible, maybe she would have been OK. But she’d lost her car, her job, her spot at college, and her friends… At 19, Pamela lost her life to an overdose.
I’m Emily Reddy. And you’re listening to Overcoming an Epidemic: Opioids in Pennsylvania, a WPSU podcast.
Over seven episodes I’ll be working with fellow WPSU reporters Anne Danahy and Min Xian to look at what researchers, communities and government agencies are doing to try to treat and prevent opioid addiction.
STIGMA. If you’ve experienced opioid addiction – or what experts call “opioid use disorder.” – you’ve probably faced stigma as a result. If you’ve never been addicted, maybe you’ve blamed someone for their opioid addiction. In this episode, we’ll look at how personal stories are being used to fight stigma. And how understanding genetics and the origin of the opioid epidemic might play a role in reducing stigma.
Tricia Stouch is doing her part by traveling around the state telling her daughter Pamela’s story as a part of the Share Your Opioid Story project.
Glenn Sterner created the project specifically to reduce stigma. Sterner is an assistant professor of Criminal Justice at Penn State Abington.
Glenn Sterner – “My goal is to change your perspective on substance use disorder. The way that we currently think about substance use disorder as a moral failing is incorrect. People who are in recovery are really incredible people. But when they are in the throes of their substance use disorder, they're really afflicted, they can't think correctly because their brain is being affected by substance, by a disease.”
ER – Addiction is a disease. Researchers agree. Sterner hopes the Share Your Opioid Story project will help everyone else to understand that and be more sympathetic.
Sterner was inspired to start the project by a mom who came up to him after he gave a talk about opioids and the criminal justice system. Her son was a Penn State student who was in jail and struggling with addiction.
GS – “And she came up to me a stranger, because she knew that she couldn't turn to her family, because likely, they would either treat her son differently or treat her differently. And that's something that she wanted to avoid. She shouldn't have to come up to a stranger, right. She shouldn't have to find somebody else out in the crowd that doesn't necessarily know her. She should be able to rely on her family. She should be able to rely on her friends, for support.”
ER – The Share Your Opioid Story website has pictures and stories of about 150 people affected by the opioid crisis. Some talk about their own addiction. Some talk about family members’ addiction. Some stories have happy endings. Some don’t. Sterner says hearing from people like Stouch humanizes the issue.
GS – “We talk about the opioid crisis in the terms of statistics. We talk about 130 people dying per day. But we really don't talk about who those 130 people are. When you hear the story from Tricia, we talk about her daughter. We talk about Pamela. Pamela is a person. And Pamela is one of those people that we've lost in the opioid crisis. And each one of those individuals deserves their story to be told. And the only way that we're going to move beyond those statistics to help you really understand the breadth, the depth, and frankly, the major issues associated with substance use disorder is by helping to share those stories.”
ER – And stigma goes beyond just causing embarrassment. Sterner says it can keep people like Stouch’s daughter from getting treatment.
GS – “Her daughter felt really isolated. She was embarrassed. She didn't want to reach out for help. That story gets repeated over and over. We know that stigma reduces your ability to get into treatment quicker. And the more that we can talk about this issue, the more that we can openly support you in that recovery process, the more likely that you're going to get better.”
So does he see attitudes changing?
GS – “I… I…that’s a good question…. Do I see these things changing? Do I see attitudes changing? I do, I would like to see it more. And that's why we continue to fight every day. That's why we continue this initiative. Because we know that there are other people out there who currently still believe that people are making this choice, that people are choosing to use, that people are choosing these experiences over their loved ones. When frankly, that's not the case.”
ER – Maybe there wouldn’t be so much stigma if people knew how the opioid epidemic started. How we got here. Rachel Levine is now the Secretary of Health for the state of Pennsylvania. But she remembers the focus on pain management back in the 90s in her medical practice.
Rachel Levine – “So there was a smiley face scale of zero to five, and pain literally became the fifth vital sign, pulse, blood pressure, respiration rate, temperature, and pain. And so I remember being in my adolescent medicine practice, seeing teenagers coming in for other reasons, but I still had to assess whether they had any pain – acute or chronic pain – and then rate it and develop a plan to treat it, even though that's not why would they were there.”
ER – Around the same time, drug companies developed long-acting opioid pain medications that they advertised as non-addictive. Before, doctors might have prescribed aspirin or ibuprofen, or just allowed patients to have some pain. But during this war on pain, Levine says even relatively mild pain was treated with powerful opioids.
RL – “So we wrote, you know, hundreds of thousands and millions of prescriptions for these medicines, often for long periods of time, because everyone was reassured that they would not be addictive. And unfortunately, that has proven to be completely false, that many people became dependent, physiologically dependent, and too many addicted to these pain medications.”
ER – In fact, the number of pills was in the billions. A recent lawsuit revealed that between 2006 and 2012, drug companies distributed 76 billion oxycodone and hydrocodone pills. More than 3 billion of those were in Pennsylvania.
Many people got them from their doctors. Others, like Tricia Stouch’s daughter, got their hands on some of the pills that were prescribed to someone else, but never taken. And when the pills ran out or doctors cracked down or the price of pills went up, Levine says, many of the now addicted opioid users turned to heroin.
RL – “80% of people who use heroin started with a prescription opioid that they obtained legally or illegally. People get dependent and addicted. And then when they can't get it, they go to this cheap, powerful, plentiful heroin.”
ER – Nearly 100-thousand people died from opioid overdoses over those seven years and 76 billion pills.
Levine says the state of Pennsylvania is now working with the medical community to reduce the number of prescriptions doctors give out.
RL – “We have virtually eliminated doctor shopping in Pennsylvania, where people go to multiple doctors to get prescriptions, and we have decreased opioid prescriptions 25% in approximately three years.”
ER – Levine says the state has done that without cutting off people with chronic pain issues. Though people with chronic pain still complain about losing access.
And we’re just learning what big a role the drug industry has played in flooding the nation with opioids.
Jonathan Marks is the director of the bioethics program at Penn State. His recent book “The Perils of Partnership” looks at the problems that arise when public health agencies partner with corporations. He sees a web of unhealthy relationships between the opioids industry… and doctors, public health agencies, public officials, and more.
Jonathan Marks – “A number of pharmaceutical companies – most conspicuously in the news recently, Purdue, but certainly not the only one. Purdue engaged in an aggressive policy of marketing its opioids, downplaying the risks of addiction and abuse. And in fact, characterizing physicians who were concerned about addiction and abuse as suffering from quote, ‘opia-phobia,’ a term which began in Purdue's internal documents and through a web of influence ended up being repeated in the WHO, World Health Organization, policy guidelines.”
ER – Pennsylvania is one of a few dozen states that is suing Purdue Pharma – the maker of the popular opioid OxyContin – for allegedly fueling the opioid crisis by deceptively marketing the drug.
A growing number of opioid production companies are being sued by nearly 2,000 cities, towns and counties.
And the lawsuits are leading to huge settlements. One company has agreed to pay $1.4 billion to settle charges of fraud and conspiracy for marketing its drug as safer and less prone to abuse than the competition.
Marks cites a recent study by the Journal of the American Medical Association that showed interactions between opioids drug reps and doctors led to increased opioid prescribing rates and increased deaths from opioid overdose.
So what does this marketing to physicians look like? Several top executives at Insys Therapeutics were recently found guilty of racketeering. One company tactic that came out at trial was that a sales rep who used to be an exotic dancer gave a doctor a lap dance to encourage him to prescribe the company’s opioid drug.
But Marks says even small gifts can influence doctors to prescribe.
ER – “So as a bioethicist, you know, what's the solution to this?”
JM – “I think there's a compelling case for saying, let's just eliminate that interaction. Physicians shouldn't meet with opioid drug reps. If physicians want to know about the pain medications on offer, if they want continuing medical education about how to deal with chronic pain, they should receive it from people who do not have a vested interest in the outcome of that educational module.”
ER – Marks thinks physicians need to be educated about opioids. And – like Sterner – thinks we need to tell the stories of the people affected by the opioid crisis. He also thinks that as the issue grows, people are more likely to know someone who is addicted to opioids. Which also might reduce stigma. . .
And one more thing that might help reduce stigma surrounding opioid use, is knowing just how genetics can influence who is liable to become addicted to opioids. The research says somewhere between 30-70% of substance use disorders are due to genetics.
Keri Donaldson has created LifeKit Predict, a simple saliva test that can look at your genes to see if you’re susceptible to opioid abuse.
Keri Donaldson – “And it doesn't tell you definitively that you will develop a substance use disorder; it just says, ‘Listen, your genes are similar to a group that has that disorder. Maybe you should make a more informed choice.’”
ER – Donaldson is the CEO and founder of Prescient Medicine. He’s hoping his company’s test will be used before surgery to see if you’ll probably be OK using opioids or if you’re susceptible to abuse and should work with your doctor to come up with a different plan for dealing with pain.
KD – “So when you're sitting down prior to a surgery, we think it would be interesting to have the patient/provider discussion: Your genes are very similar to a group with an opioid use disorder. Let's talk about how that may affect you. Let's talk about how that may decide different pathways here in your care. Whether you get exposed to the opioids during the procedure. How many do I send you home with? How long do you stay on them? And we believe that this test is an objective classifier that should be there when that discussion's happening.”
ER – With an increased understanding of the impact of genetics, the history of the crisis and the stories of those struggling with opioid addiction, researchers and those hit by the epidemic hope to increase understanding and reduce stigma.
On our next episode of Overcoming an Epidemic from WPSU, reporter Anne Danahy explores what is being done in Pennsylvania to prevent opioid abuse. And why it doesn’t get much attention. Because when prevention works, nothing happens.
Janet Welsh - “Every time there’s a big fire in the county, it’s in the paper on the front page. But, what they never ever show is all the houses that didn’t burn down because of effective fire prevention methods”
ER – Prevention… on the next episode of Overcoming an Epidemic: Opioids in Pennsylvania, a production of WPSU. Thanks for listening. Reporters on the project include Anne Danahy, Min Xian, and me, Emily Reddy. Cheraine Stanford and Frank Christopher edited the episodes. You can find more resources on the opioid crisis and what to do if you or a loved one need help at wpsu.org/opioids. For WPSU’s Overcoming an Epidemic, I’m Emily Reddy.