In 1996, a new drug came on the market. One that was marketed aggressively and prescribed routinely for chronic pain. Oxycontin. But Oxycotin was just one opioid painkiller used in the 1990s and early 2000s to treat pain. And while these medications were meant to cure one epidemic, their use led to another.
“So, I don't think I have to go over the story of the Sackler family and OxyContin and the deceptive advertising. But let me give you a different take on it,” said Dr. Nancy Nielsen, the University at Buffalo’s senior associate dean of health policy, in an interview with WBFO.
Nielsen explains that at the same time these drugs rose to prominence, the early 2000s were declared the“Decade of Pain Control and Research” by Congress, and The Joint Commission developed new, more liberal standards for the treatment of pain, including the pain scale.
“It was the convergence of the regulators saying 'patients shouldn't have pain, you should, you doctors should be relieving the pain.' Very aggressive advertising by the companies that made opioids. And they did unscrupulous things and doctors fell for it, let's be honest about that. They bought hook, line and sinker, and they took some of the benefits," Nielsen said.
The kind of pain management promoted in the 1990s was meant to give people their lives back. But instead, for many, they lost everything. In trying to treat one ailment, they became ill with or died from another condition: substance abuse disorder. The opioid epidemic killed nearly 645,000 people between 1999 and 2021, according to the Centers for Disease Control.
“So in our country, the pendulum swings from one extreme to the other extreme, so then it became almost a no-no to prescribe opioids," Nielsen said.
While the country grapples with how to end this epidemic, the opioid epidemic, millions of Americans are still living in the silent epidemic doctors were originally hoping to solve.
According to the CDC, 20.9%, or 51.6 million adults in the U.S. live with chronic pain. However, what happens when doctors stop prescribing opioids to try to combat addiction? What happens when pain clinics shut down?
“There was great scrutiny, as there was here in Buffalo, back in the middle of the last decade, on those doctors who prescribed what the state and the Feds felt was too many opioids. And that's how we got into trouble here in Buffalo," Nielsen said.
In 2016, eyes were on Buffalo as pain management physician Dr. Eugene Gosy was indicted on over 100 counts relating to alleged illegal distribution of controlled medication, conspiracy to commit healthcare fraud and healthcare fraud.
News reports claim Dr. Gosy had anywhere from 9,500 active patients up to 40,000 patients visiting his practice, which he led with several mid-level providers working with him. According to the U.S. government’s 2017 superseding indictment, between 2007 and 2014, Gosy and his mid-level providers prescribed more controlled substances than any other provider in New York State, including hospitals.
The Department of Justice described his alleged conspiracy as one where he recommended “a course of treatment, including the prescribing of controlled substances, which caused the death of at least six individuals, and contributed to the deaths of others.”
Gosy ultimately pled guilty to some of the charges, including conspiracy to distribute controlled substances and healthcare fraud. He was sentenced to 70 months in prison. His plea did not include his alleged role in the deaths of his patients.
Many of his patients wrote letters to the court asking for leniency in his sentencing, describing a doctor who “dared to help those suffering immense pain, knowing narcotics would bring some relief to the patient, yet distain [disdain] from some professionals who could only discharge that same patient, leaving them to suffer.”
Nielsen knew him only for his reputation prior to the indictment. But after his indictment, she oversaw his practice for a brief time, since he could practice, but his license to prescribe was revoked.
“So, when I got there, you know, the Feds had, he was indicted, and he was the highest prescriber in New York State. The implication of that was he was prescribing inappropriately, and I would question that, frankly. And I say that after having been there. When I went there, I thought I would see, you know, relatively young guys in California tans with gold chains coming in, drug seeking. That is not what I saw," Nielsen said. "What I saw was people who'd had multiple surgeries or people, older people in wheelchairs or walkers. It was really a stunning situation. And the patients were being blamed as if they were drug seeking; he was being blamed as if he was enabling that."
While Gosy's practices have been debated, lost in the discussion of what happened Dr. Gosy was what happened to his patients after his clinic closed. What happened to the patients who came to him to get their life back, who then lost their provider at a time where the nation is grappling with where opioids fit into pain management?
The acute issue
When Gosy was indicted, there was an immediate issue. Gosy was released on bail, and able to continue practicing, but without the DEA license that allows him to prescribe.
“The Feds either didn't know, I'd like to believe they didn't know," said Nielsen said. "I hope they didn't know that none of the insurers would pay for the visits unless there was somebody with an active DEA license on site."
So the clinic closed, briefly. And Nielsen, being the region’s leading expert on health policy, found herself in the middle of fixing the problems that would cause.
“What happened is people either went into withdrawal and ended up in all the hospitals in town or went to the emergency rooms all over the region. And so all the emergency room physicians got together and said 'this is a crisis, but we don't want people, you know, shopping from one emergency room to another. We're only going to prescribe five days.' Well, that gets you five days. But then some people went to the streets and that you don't know what you're getting. That's where you have the fentanyl and other analogs that now are killing people," Nielsen said.
Nielsen says some patients who turned to street drugs died during this time. It was a public health crisis. Nielsen and two other doctors ultimately oversaw Gosy’s practice to allow it to reopen for a brief time. Eventually, Dr. Gosy, unable to prescribe, left for Invision Health,before going to prison and losing his medical license. His practice was taken over and renamed by other doctors. Patients scrambled when his clinic closed, then even when it reopened, it became clear the doctor they relied on was not going to be able to do what he did before.
Amy was one of those patients.
“I remember I was having lunch at home. And I was watching the afternoon news, and I found out his office was closed, due to the indictment. And I did not know what I was going to do," Amy said. We are only using patients' first names in this story as they worry about losing access to treatment if identified.
Amy was a speech pathologist in Washington, D.C. when she developed symptoms of Ehlers Danlos Syndrome, a genetic connective tissue disorder that causes chronic pain, joint, spine, digestive and other issues throughout the body. EDS takes a median of 10 years to diagnose and during that time, some patients like Amy, develop debilitating pain and complications.
“I always say it's like having the flu 24/7. So you feel very tired, fatigued, body aches. Sometimes I do run like low grade fevers, so I even have that. It just feels like chronic pain all the time. And no one really understands and you just have to kind of go through your life. Living with a body that doesn't want to cooperate, and you never know what you're gonna feel like when you wake up in the morning," Amy said.
After Amy had surgeries for tethered cord syndrome and craniocervical instability, two complications of EDS, she was finally diagnosed with EDS in 2013. However, at this point, Amy’s condition progressed to where she couldn’t work. She moved back to Buffalo in 2015 to assist her mom and maintain her quality of life, leaving behind a specialist in Maryland who was treating her pain with opioids. That’s when she found Gosy.
“I remember when I first met with him, he actually said to me, 'so you're one of the real ones.' And I didn't know what that meant. I remember that comment had stuck out in my head. I mean, I remember it to this day. I didn't know what it meant, but now I do with all of the indictments. But he was willing to prescribe what I needed, what I came in with, a regimen that I was already on, and he was willing to prescribe that medication for me," Amy said. She said it seemed he had an understanding of EDS and the type of pain she was in.
Amy’s experiences with other doctors she saw in Buffalo to treat different aspects of her disability were not as pleasant. Many questioned her medication regimen, experience with pain, or weren’t familiar with EDS.
“That messes with your head. You know, when you're being questioned about this disorder that you've been diagnosed with and then other doctors are saying like, well, what is this? I've never heard of it," Amy said.
Amy says when Gosy’s clinic closed, while it didn’t seem feasible to go back to her doctor in Maryland, she did, because she didn’t trust another doctor would treat her here.
“In the end, that ended up being what I had to do because doctors in Buffalo were so afraid to prescribe the amount of medication that I was on. Even, not even, the amount but just they're afraid to prescribe anything, any type of pain medication," Amy said.
But that doctor is a concierge doctor, meaning, they don’t take insurance. Amy pays $500 a year to be a patient, plus $500 a visit four times a year. She used to pay for travel, but now uses a humanitarian medical flight program. Still, $2,500 a year while she is living off of Social Security Disability and long term disability is a burden. If she wanted to find a pain doctor here, they’d have to take Medicare. Most of all, if she did find a pain doctor here, she’d need someone who could understand the balance of needing pain medication but wanting to be on as little as possible.
“It's challenging, because I feel like my pain is like, fairly well managed, you know, but I don't want to be on a whole bunch of pain medication all the time," Amy said.
And Amy has deeply considered the risks of these medications, including her family history.
“I've come to terms with the fact that I need pain medication. With having that addiction family history, you know, I've actually, like I mentioned earlier, I've come off pain medication. And the reason, part of the reason, I did that was just to make sure I could," Amy said.
The chronic issue
Amy had a doctor to go back to. Not everyone did. As Dr. Nielsen explains, there are a lot of proceduralists, who will do injections or other procedures for pain, but less pain specialists now. She says it was a consequence doctors warned of.
“Those of us who took over the clinic went down and spoke with the Feds and said, I don't think you realize the chilling effect that you're having on people who are trying to do the right thing for patients," Nielsen said.
Debbie is another former Gosy patient. Gosy was her doctor from 1992 until 2020, when he went to prison. She has complex regional pain syndrome, or CRPS. CRPS causes severe, debilitating chronic pain after injury or sometimes spontaneously. There’s not a known cause and it can be hard to treat. Her primary care doctor did take over her opioid prescriptions while she looked for a new provider, but it wasn't easy. She recounts this third visit with a new provider.
“When he asked my pain level and I told him and he says, all of a sudden, he burst out and banged his hands on the desk. 'How can I prescribe these meds?' And what was the word he used? 'justify with the insurance company?'" Debbie said.
She says finding a new doctor was nerve-racking for a lot of CRPS patients.
“If you switch doctors and you tell them you were a patient of Dr. Gosy's, they don't even want to see you," Debbie said.
But patients like Amy and Debbie, who have chronic, complex pain, aren’t looking for pills. They are looking for relief.
"To set the record straight. He [Dr. Gosy] did not just shove pills at me all the time, like a lot of people think. He did trigger point injections, sent me to physical therapy, aqua therapy," Debbie said.
Amy tried physical therapy, but had trouble finding a doctor who understands EDS. However, she’s had a lot of success seeing a behavioral therapist who also has EDS.
“She's given me ideas of different doctors to see and different things to try to help, you know, manage the pain without always relying on pain medication. And that's where we go into the mindfulness and relaxation and breathing and things like that," Amy said.
Nielsen says this is vital to this next chapter of how we treat pain. It’s not about getting rid of the pain. It’s about a multidisciplinary approach.
“We went through a phase in our country where it was thought that any pain should be taken away, there should be no pain. Doesn't mean pain is good. But I think at a certain level, as you've described, you have to have an expectation that you may not be completely pain free all the time. And use the non-pharmacologic methods as much as possible because they really do work," Nielsen said.
While non-pharmacological options are helpful, Nielsen admits the challenge is getting them covered by insurance. And medication still has its place in treatment. As opioids became more rigidly restricted in the past decade, some patients had their treatment reduced for the wrong reasons.
“I was at conferences with pain doctors where they were trying to to get their patients off or at reduced doses of opioids. You know, the Feds, the CDC, came out with guidelines of what the, you know, for chronic pain, what the best practices were for the upper limit. What happened is that enforcers, state and federal enforcers, took that as a mandate that you couldn't go higher than that. That was terrible. That was very hard on patients. It was wrong. And CDC has clarified that. And in their guidelines in 2022, it's very clear that these are guidelines only." Nielsen said.
Nielsen says providers and patients have to build trust, set realistic expectations for treatment, and determine the best course of action for medication. She says opioids are helpful for acute pain, but not so much in chronic pain. If opioids do need to be used, Nielsen says the doctor and patient should discuss addiction risk, going “low and slow” with whichever medicine they decide, and be upfront about how long treatment will last with the medication. But it's very important for the doctor to believe the patient and the patient to trust the doctor.
“I would say find a doctor who believes you, but don't go in with the expectations of what you must have, or they're not treating you well, or they don't believe you. That is the key to it and then find somebody who tries to help you get more functional," Dr. Nielsen said.
Debbie says her current pain doctor is trying to reduce the amount of short acting opioid pills she takes daily, and she is considering trying a long-acting opioid that comes in a cheek patch. She says there have been issues with refilling the short acting pills, which has caused her to go into withdrawal a few times.
Amy plans to stay with her doctor in Maryland for now. She hopes more doctors will come to understand chronic pain and work with patients like her.
“So while there is one crisis happening where people are dying because they're taking too much pain medication or they're getting it off the streets, there's a whole 'nother crisis of patients who can't get care, because there's so much fear around those patients who are dying. So it makes it very challenging. And it's like, you just, you just want to be believed," Amy said.
WBFO reached out to the Federal Bureau of Prisons, where Gosy is incarcerated, to request an interview. We were told Gosy denied the request. Gosy is scheduled to be released from the federal prison system in October.
