I didn’t know much about the opioid crisis until July 2, 2017, when I got a call telling me to come home because my youngest sister Jenny was in the hospital and had just been revived with Narcan. I had to look up Narcan on the Internet to learn it was a drug used to reverse opioid overdoses.
I brought a blank check home with me and called a treatment center in upstate New York from the airport, assuming we were at the beginning of a long, difficult, and expensive recovery.
Since then I’ve read everything I can about the opioid crisis: surgeon general reports, commission recommendations, all the state opioid plans, research, and legislation. I’ve reached out to health experts and doctors. I’ve met with Senate staff. I’ve given a TEDx talk, written op-eds, and volunteered at an outpatient addiction treatment center in Baltimore.
The main thing I’ve learned: Despite a decline in the rates of opioid prescription, the current crisis has spawned a profitable, growing, and predatory market with no end in sight.
And it’s not just the Sackler family’s Purdue Pharma, which has made $35 billion in revenues on OxyContin since 1995. The burgeoning industry of addiction treatment is also haphazardly regulated, poorly understood, and rapidly expanding.
Finding evidence-based treatment for substance use disorder is difficult. I’ve tried. But those services were set up to be completely separate from mainstream healthcare and mental health services. There are no national standards of care. Online and television marketers prey on a vulnerable population and the revenue from their insurers, making promises without any data that accurately reflects results.
While many treatment programs, like Baltimore’s Concerted Care Group, offer excellent and evidence-based care, others engage in practices such as patient-brokering, in which large sums are paid for referrals. Some charge insurers exorbitant fees — for example, $4,000 per urine tests taken two to three times per week until the patient dies.
A 28-day treatment program costs an average of $30,500. Our family could have pooled our resources just one time to afford that option. But given the relapse rate of more than 90 percent for opioid addiction, this solution is not financially viable for most Americans. Moreover, the best chance for recovery is not with a rehab program at all, but with a doctor who is board-certified in “addiction medicine.”
This has only recently become an official specialty, so there are not enough providers to meet increasing demand. Medical schools in the United States devote an average of just 12 hours to substance abuse, and many doctors struggle to get licensed and reimbursed for providing care.
Narcan sales have increased from $21.3 million in 2011 to $274 million in 2016. In 2014, a two-dose package of Evzio, an auto-injector device designed for easy use by laypersons, cost $690. As of 2016, it cost $4,500, more than a 500 percent increase. It’s the free market at its worst.
Given this ecosystem, it’s not surprising that 90 percent of the 21 million Americans with substance use disorder never get treatment. My sister was part of that majority. Jenny was a 44-year-old, college-educated, suburban mom who never went to a rehab program or had an intervention. Maybe she was ashamed, or maybe she was just overwhelmed with attempting to navigate this madness.
Our story ends like many others: My sister died. It was a heartbreaking and gruesome experience that haunts me everyday, mainly because I experienced the entirety of my sister’s opioid addiction, struggle, and death in just six days.
I remember first arriving at Kenmore Mercy Hospital last July and approaching Jenny’s hospital room. I could hear my sister from the hallway before I saw her. She was moaning for something over and over again — that something was Dilaudid, a synthetic opioid.
As I entered my sister’s room, I barely recognized her. Jenny had been radically transformed from just a few months ago, when we’d all been together for the holidays. I didn’t understand how such a radical decomposition could have happened so quickly. The whites of her beautiful light green eyes were an awful jaundiced color, with clear liquid bubbles all over her eyeballs like a monster; her legs were bones; and her skin was an unnatural yellow-maroonish color. She was in and out of lucidity, constantly moaning. A nicotine patch was also on her arm, which struck me as absurd.
Jenny never left the hospital. She moved into a hospice room down the hall after four days and died quietly two days later with my parents on either side of her bed holding her hands. My mom had a baseball hat on. She never cried. My dad, a Vietnam combat veteran and Bronze Star recipient, was silent. It was so quiet. My sister Colleen and I sat at the foot of the bed, with a perfectly framed picture of Jenny and my parents, one that I’ll never be able to unsee.
Our story isn’t unique. It isn’t the saddest story. But it is a chilling example of how stigma, national apathy, and predatory drugmakers and rehab providers continue to render patients and families helpless in the opioid crisis.
[Also read: Prescribing opioids and antidote at the same time to prevent overdose deaths]
Dedicated doctors, health professionals, and researchers already know how to fix this. We just need the political will to do it. The White House Council of Economic Advisers estimates the cost of the opioid crisis to be $504 billion, between the lost productivity and criminal justice costs. Attorney General Jeff Sessions predicts it will cost another $500 billion over the next three years. To address this $1 trillion national crisis, Congress has allocated just $3.3 billion to its omnibus bill for opioids and mental health in 2018. (In comparison, we spend $32 billion annually to combat HIV.)
My sister (and many others!) might have lived if her doctors hadn’t kept giving her opioids for years. She might have lived if she had a doctor who was board-certified in addiction medicine and received medication-assisted treatment that was integrated into her primary health care. She might have lived if we had rallied around her and talked honestly and accurately about her illness.
I am not ashamed of my sister for having substance use disorder. I am ashamed of our national response. I’m ashamed of hucksters preying on sick people to make a profit. And I’m so ashamed of myself for not getting educated about my sister’s struggle until it was too late.
Kelly O’Connor, a resident of Washington, D.C., recently gave a TEDx Talk “My Introduction to Narcan.”
