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Update: Dr. Neil Capretto died on June 9, 2018, at the Allegheny General Hospital. He had been in hospice under care for small cell carcinoma of the gallbladder. Capretto was 62.
Neil Capretto has been treating people in the throes of addiction for nearly 40 years. Two years ago, he found himself on the other side of the white coat. Dr. Capretto was diagnosed with small cell carcinoma of the gallbladder, a cancer so rare that fewer than one in 100 million people share his disease.
Despite this rare and ravenous form of cancer, despite 44 chemotherapy treatments, 52 radiation treatments and 12 surgeries, Capretto still goes to work every day at the Gateway Rehabilitation Center’s main campus in Aliquippa.
He serves as Gateway Rehab’s medical director and sees close to 20 patients a day with substance abuse disorder.
“When I was given the diagnosis,” Capretto said, “I literally suddenly found myself fighting for my life on a daily basis the same way thousands and thousands of people in our community and around the country are fighting for their lives on a daily basis. The only difference is I am blessed with receiving the best medical care that modern science can offer. ...
“At least I have a fighting chance. I believe that people with addiction deserve to have the same fighting chance that I do.”
Speaking at the Allegheny Health Network’s Drug User Health Conference in October, Capretto told his story to a room of medical professionals. He urged the medical community to do better, to slow down when talking to someone with an addiction problem and to not jump to conclusions.
“Listen to them. Most patients will tell you what’s wrong with them if you actually give them the opportunity tell their story. ...Everybody has a story to tell and many of our patients, no one has maybe ever listened to their story. The fact that you, as a health professional, actually listen to their story can be a very powerful thing.”
“At least I have a fighting chance. I believe that people with addiction deserve to have the same fighting chance that I do.”
Stigma is a buzzword these days. But Capretto intimately understands its effects because he has seen hundreds of patients derailed by it. Think of it this way:
Would he be asked to tell his story if he wasn’t dying of cancer but, instead, of an addiction to heroin? What if instead of an IV drip of chemotherapy, he was receiving an IV drip of methadone? What if his organs weren’t ravaged from rapid cellular regeneration, but rather his veins hardened and kidneys failed due to years of substance abuse? Would doctors and patients ask him for insight? Would a room full of professionals be crying during his speech?
Would you care?
After graduating medical school from the Philadelphia College of Osteopathic Medicine, Capretto wanted to return home to Pittsburgh. He enrolled in a residency program at St. Francis Medical Center, which closed in 2002. The residency, he said, was geared toward community service.
Dr. Abraham Twerski served as head of psychiatry at St. Francis. Twerski, an international expert in addiction, also founded Gateway Rehab in the early 1970s, when there weren’t many addiction programs in the country. Capretto found himself working with substance abuse patients more and more at St. Francis, and he started to work part-time at Gateway.
Twerski became Capretto’s mentor.
“If it wasn’t for him, I wouldn’t be in addiction,” Capretto said.
Twerski told Capretto something he’d never forget: Everyone, including their addicted patients, were diamonds.
“The years go by and life comes along, whether it's trauma or addiction … it throws dust and dirt and mud on that diamond. For many of the people, it gets totally lost and covered and they lose sight of it. Our job is to go in and find the diamond and remove the dirt and dust and polish it and return it to its brilliant beauty,” Capretto said.
When Capretto began working part-time at Gateway, he started to see the other side of addiction, the stable side, the side most people don’t often see. A patient who came into the St. Francis emergency room, vomiting on Capretto’s shoes and acting violent, would see Capretto again at Gateway just a week or two later. He thinks medical students and doctors should see this transition, too.
“Now I see sitting here, this is a teacher from Upper St. Clair, this is an attorney, this is a mother, this is a steel worker from Clairton and they're good people just like your neighbors or like your family once they get sober.”
For Capretto, addiction treatment came about almost accidentally. Today, he’d like to see it included in medical education.
“The fact that you, as a health professional, actually listen to their story can be a very powerful thing.”
“I mean this is an epidemic disease right now that's killing people in record numbers. Yet, most physicians feel very inadequate or impotent to even try to diagnose it...because they are not trained.”
Dr. Mitchell West, medical director of addiction services at the Allegheny Health Network, studied under Capretto for four years. “I got to work every day next to the best addiction doctor in the country,” he said. West tends to substance abuse patients in Allegheny General’s emergency room on the North Side of Pittsburgh. He helps patients cope with withdrawal symptoms and suggests treatment. He credits Capretto with his ability to connect with his patients.
West is a year older than Capretto. “Never in my life did I think at my age that I would ever encounter another physician who profoundly changed the way I interact with patients the way Neil did… It sounds so stupid to say this, when I don’t know what to say, I think to myself, ‘What would Neil say to somebody in this case?’ It’s not always easy to channel what he would say because there’s only one Neil… I do the best I can to be like him.”
Capretto said that doctors in the 1980s and 1990s often didn’t want to work with substance abuse patients. Those patients were “not worth it” or “they brought it on themselves.”
“That attitude is still prevalent in medicine,” he said.
When Capretto started his career, he said no one talked about dual diagnosis. If you were an addict, that was your diagnosis. Not many people looked into the deeper conditions, such as depression, mania, obsessive-compulsive disorder, post-traumatic stress disorder, etc.
“At least 50, maybe as high as 70 percent, of people with addiction have some co-occuring mental health condition that needs to be addressed,” he said. “If it isn't addressed properly, it makes it very difficult or for some probably impossible to get over their addiction.”
A fragmented approach
When Capretto first started working at Gateway, the program wouldn't allow patients to take psychiatric medicines, let alone substances designed to curb opioid cravings. Gateway, like many rehab facilities across the country, was a traditional 12-step program based on abstinence. Patients couldn’t even continue their antidepressants while in rehab.
“That was across the country. Pretty much standard. I mean, it sounds crazy now,” he said.
Patients had to be off their medications for up to two years. The belief was that they had to try sobriety first, then address the mental health issues.
A stockbroker and a physician started Alcoholics Anonymous in 1935 because of the lack of help from the mainstream medical community, Capretto said. “So if a doctor can't get help from other doctors that's pretty bad.”
Capretto has been trying to bridge that gap his entire career.
“I mean, 30 years ago, if I were to be telling the staff here that you would be using medicines like Suboxone and psychiatric medicines for over 50 percent of our patients here, they would have laughed at me.”
Capretto said incorporating medication-assisted treatment was a gradual change for Gateway. It took him years to convince the program that this was what their patients needed. “I don't think we would be anywhere near as progressive as we are if I hadn't been pushing for years with our board of directors or staff or administration.”
Medication-assisted treatment is when mild opiates and other medicines are used to help curb cravings or block the effects of opioid use in a patient’s brain.
- Vivitrol is a shot taken once a month. It blocks receptors in the brain that make you feel high.
- Buprenorphine (a.k.a. Suboxone) is a drug, sometimes in the form of a strip, that dissolves on the tongue and is taken daily. It is a mild opiate that is used to stop cravings.
- Methadone works similarly to buprenorphine, but patients can’t take it home like a regular prescription. Patients must regularly show up at clinics to receive it.
Gateway Rehab is not allowed to dispense methadone, even in its detox unit, because of the proximity to residential homes. Capretto feels this stipulation in licensure is a product of stigma. People don’t want addicts in their neighborhoods. Yet someone next door could be bringing home Suboxone in a prescription bottle.
Individuals who partake in medication-assisted treatment tend to stay in rehab and therapy longer than those who don’t. Those who stay in treatment longer are less likely to relapse.
“I think we have a responsibility to make them aware and offer them medication-assisted treatment — and to not do that is really falling below a standard of care,” he said.
Capretto is celebrated by his patients and peers. Patients send him letters about the difference he’s made in their lives. “I’m not doing anything,” he insisted, “other than things you learned in kindergarten. I don't think there's anything special I do. I just listen.”
Sarah Womack, who PublicSource has profiled through her addiction recovery, will be clean two years on July 6. She received her certification as a recovery specialist on April 26 and said she will begin work at an area hospital soon. Womack, who struggled with addiction from the time she was a teenager until her late 30s, said Capretto is the reason she is here today.
“I would do anything just to let him know how much he means to me, how much he helped to saved my life,” she said.
Womack was a “frequent flyer” at Gateway while in active addiction, and Capretto joked that he would name a wing of the rehab center after her. No matter how many times Womack relapsed and came back to Gateway, Capretto always told her, “I am so glad to see you back. I am so glad you made it back.”
She said there was never any shame: “Instead of looking at me as a screw-up, he looked at me as someone who was suffering from a disease, and I fought my way back to safety to try to save my life.”
The 62-year-old doctor is recounting his life and his career a lot lately. Now, it’s not just his patients that are looking for a cure and a second lease on life. Capretto is, too.
“...You know one of my sayings is — I’ll get emotional — even with my cancer is, ‘I want to live so I can do God's work.’ There’s a saying out of the Bible, ‘I shall not die but live and serve the Lord.’” His voice quivered.
He wants to fight to survive for the obvious reasons but also because he wants his patients to fight to survive, to experience compassion, to receive care that includes empathy and evidence-based treatment.Reporters you can trust and stories that make a difference.
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Capretto is counting on doctors, nurses, counselors, neighbors, friends, parents — all of us — to continue and expand this work.
“The majority of us declare ourselves to be people of faith. Well then, why are we dropping the ball? I mean this is an opportunity for us to step to the plate and prove that we are the people that we believe that we are.”
Since February, Capretto has been going to treatments as part of a clinical trial. Last week, he said his scans show he’s not responding. In fact, his cancer is spreading and he’s experiencing other symptoms, like problems with balance, double vision and pain.
But he’s still working full time at Gateway Rehab. “As long as I am able to physically work, I will continue doing so because I am so fortunate and blessed to be able to do work that I have found so meaningful for so many years,” Capretto wrote in a May 2 email.
“None of us know how much more time we have to live and, whether I have 30 more years or only 30 more days, I am going to do my best to make the best out of each day I have.”
Brittany Hailer is a freelance journalist based in Pittsburgh. She can be reached at firstname.lastname@example.org.
This story was fact-checked by Lindsay Patross.
Edited by Halle Stockton and Mila Sanina.
Web design and development by Natasha Khan.
This project has been made possible with the generous support of the Staunton Farm Foundation.
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