By Ryan Rusak
The federal government estimates that about 2.1 million Americans struggle with opioid use disorder.
Almost no one who works in the field – from doctors and researchers to public health experts – believes that number is accurate.
More than a decade into the crisis involving prescription pills, heroin, and synthetic opioids, experts say they still don’t have a full picture of how widespread the problem is. They also say that underestimating the country’s opioid problem makes it harder to fight it.
“It just went from a pretty bad situation to an absolute catastrophe in a very short period of time,” said Dr. Shawn Ryan, who worked in emergency medicine in southwestern Ohio and is now the President and Chief Medical Officer of BrightView, a network of addiction treatment centers in the same region.
In response to that catastrophe, a new report released this week by the Bipartisan Policy Center shows the federal government appropriated roughly $11 billion through several agencies to tackle the opioid crisis in 2017 and 2018. It’s the first time researchers have ever tried to piece together just how much money has been paid out by Washington, who got it, and how they spent it.
The study showed most of the money went to regions of the country that reported the highest number of deaths. But no one can say for sure whether those regions have actually been hit the hardest by the crisis.
Christopher Ruhm, a professor of public policy and economics at the University of Virginia, has estimated that opioid deaths are 24 percent higher than what’s been reported.
Inaccuracies come from several sources – death certificates may be miscoded or they may list drug use as a factor without specifying opioids. Families, fearing the stigma of opioid misuse, may decline to have an autopsy conducted. And overwhelmed coroners, particularly in rural areas, may not accurately determine the cause of death.
Another problem, Ruhm says, is that many drug deaths involve more than one kind of intoxicant, and some may be adverse reactions rather than overdoses.
“We're pretty clearly undercounting the number of opioid-involved deaths. Whether we're undercounting the number of deaths that are in some sense caused by opioids, that's actually much less clear,” he says.
Undercount of opioid deaths as estimated by Christopher Ruhm at the University of Virginia
Just as there are several factors clouding experts’ understanding of how many people have died, there’s more than one reason behind the chronic undercounting of people who suffer from the disease. First, the government’s main measuring tool, a survey asking Americans about their drug use known as the National Survey on Drug Use and Health, has flaws particular to opioid misuse, experts say. Second, the misconception that addiction is a moral failure rather than a medical problem leads people not to report drug use.
And the annual federal report does not reach some important groups of people who struggle with higher rates of opioid use disorder, such as people without stable housing or people cycling in and out of jail, says Julie Williams, a public health manager for Arnold Ventures, which is working to address the opioid crisis.
“They're missing a massive number of people who are in the most affected population,” Williams says.
Another problem, she adds, is correctly defining opioid use disorder, as some people use the drugs recreationally without becoming addicted, which is defined as being physically dependent on the drug and having serious life problems as a result.
“It's a confusing question to ask” most people, she said. “They say, ‘Sometimes on the weekends I'll take some pills, but that isn't a problem.”
Why is opioid use undercounted?
Experts say the government’s main measuring tool, the National Survey on Drug Use and Health, has flaws particular to opioids:
- Misconception of addiction as a moral failure rather than a medical problem leads people not to report drug use
- Survey does not reach important groups such as people without stable housing or people cycling in and out of jail
- Doesn't account for those who use the drugs recreationally without becoming addicted
The survey has shown the rate of opioid use disorder to be relatively flat – it estimated 2.1 million for both 2016 and 2017, the most recent years available. But other data suggest that can’t be so, says Richard Frank, a professor of health economics at Harvard Medical School who has studied the issue.
Prescriptions for “opioid treatment medications, hospital visits, clinic visits, mortality are all rising,” he says.
The survey’s estimate of where misuse is concentrated is troubled as well, Frank adds.
“In some parts of the country, it's still mostly a prescription opioid epidemic; in other parts of the country, it's fentanyl and heroin,” he says.
Frank and others believe the survey could be improved by reaching tough-to-find populations, but that will take time. Ruhm also wants to see better training and funding for medical examiners would help ensure accurate causes of death.
And Frank says researchers need to “triangulate” the existing data to better estimate the spread of opioid misuse, incorporating what’s known on everything from hospital emergency room visits to arrests to street drug buys.
When it comes to the funding that is going out the door, the researchers from the Bipartisan Policy Center argue that the federal government needs to streamline administration of its grants. And the states that actually receive that funding need a plan in place to marshal the resources to expand treatment and reach the same people that are missed in the national survey.
An accurate number of opioid cases might help address stigma, which poses a barrier to tackling the problem with the right funding and tools, says Ryan, whose organization has evolved into the largest provider of evidence-based addiction treatment in Southern Ohio. If everyone knew how common the issue really is, they would understand the need for more resources.
“When is our Ryan White moment going to be?” the Ohio doctor said, referring to the Indiana boy whose contraction of HIV via blood transfusions in the 1980s helped change the debate around AIDS. “You would have thought it would have already happened with how many rock stars, how many famous people [have suffered overdoses]. But people are underestimating the longstanding stigma of mental health and addiction, which is much more pervasive, much more ingrained in our DNA, than HIV was.”