The Appeal Podcast: Policing Public Health

Prescription Drug Monitoring Programs (PDMPs) have exploded in popularity. In 2000, thirteen states used PDMPs; today, they exist in every state and Washington, D.C. These programs are ostensibly designed to respond to the opioid crisis by monitoring prescribed drugs and preventing abuse and doctor shopping. But increasingly, critics say, they are interfering with legitimate healthcare. Privacy advocates and some medical experts have demanded that states slow the rush to implement PDMPs and ask hard questions about law enforcement’s involvement in personal healthcare. Today we are joined by Leo Beletsky, Appeal contributor and Associate Professor of Law and Health Sciences at Northeastern University.

Transcript:

Adam Johnson: Hi welcome to The Appeal. I’m your host Adam Johnson. This is a podcast on criminal justice reform, abolition and everything in between. Remember, you can always follow us at The Appeal magazine’s main Facebook and Twitter pages and as always you can find us on iTunes where you can subscribe and rate us.

State PDMPs, or prescription drug monitoring programs, have exploded in popularity in the past few years going from just 13 in 2000 to 51 or in all 50 states and DC by 2019. Spurred by the rise of the opioid crisis these systems are in theory designed to monitor prescribed drugs and prevent abuse and doctor shopping, but increasingly these systems are handing data over to police departments often without a warrant and critics say causing a chilling effect on healthcare leading privacy advocates and some medical experts to demand we press pause on the rush to implement PDMPs and ask hard questions about law enforcement becoming more and more involved in our personal healthcare. Today we are joined by Appeal contributor and Law and Health Professor at Northeastern Leo Beletsky to discuss.

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Leo Beletsky: Now we say this is an opioid epidemic. Well to control epidemics when need surveillance, we need data and so a lot of times there is this kind of weird blurring of what public health and criminal justice or punitive procedural approaches try to do and that’s definitely true in the case of prescription drug monitoring programs, which under the guise of public health surveillance are really about discipline and control and punishment.

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Adam: Leo, thank you so much for joining us.

Leo Beletsky: Thanks so much for having me.

Adam: You are a leading expert, if I could say so, on what’s called PDMPs or prescription drug monitoring programs. This is obviously a criminal justice and abolition podcast, people listening may think what does prescription drug monitoring have to do with criminal justice and issues of surveillance? So before we dig into the weeds on this, can you give us a quick rundown of what PDMPs are and how popular they become in recent years?

Leo Beletsky: Sure. Prescription drug monitoring programs typically make people’s eyes glaze over when you mention them and with good reason. It’s a, you know, very kind of niche in the weeds system and a set of topics related to tracking of prescription medications. Surprisingly though there are lots and lots of intersectionality between prescription drug monitoring and other kinds of monitoring that our government engages in and the reason for those parallels is because drug policy, both on the prescription side and on the illicit market side has long been a province of criminal justice. So starting at the dawn of the 20th century or so, government has gotten more and more into the business of trying to control and suppress unauthorized access to certain kinds of medications and certain kinds of substances that are psychoactive. So, you know, we had the era of alcohol prohibition that was also coincided with a rise of laws on cannabis, opioids, cocaine and other substances. And so this whole realm of government regulation is very much focused on kind of a commodity basis. So these commodities were increasingly seen as dangerous or they were tied to groups that were seen as devious or deviant. You know, there are a lot of racial elements. And so as more and more government attention to these products began to take hold, the regulation of those products shifted from what had been primarily kind of a self regulating area by doctors and pharmacists to increasingly being rooted in criminal law enforcement. And so this is a time when the first prescription drug monitoring programs developed. They were originally simply requirements that when a prescription for certain drugs is issued that there’d be a duplicate form that gets filed with the government. And this dates back, you know, again early days of the 20th century, the first formal prescription drug monitoring program worked in California in the 1930s and then as the technology of surveillance has changed, that has also influenced the way that prescription drug monitoring is actually done in the sense that you know, in 1960s and seventies you started to see programs transitioning from a paper based system to electronic based systems. And actually the biggest Supreme Court case about prescription drug monitoring that is called Whalen, it dates back to the 1970s when New York started to conduct its prescription drug monitoring on electronic tapes versus on paper. And so physicians became concerned about this sort of level of, of intrusion. Physicians and patients both. And the Supreme Court basically said, you know, that this is something that, because it is in furtherance of government’s sort of rational purpose of minimizing diversion of medications and minimizing your addiction and you know, that these concerns, these privacy concerns, were not actually based on any particular documented injury at that time. The Supreme Court basically gave a green light to prescription drug monitoring using electronics surveillance tools and probably without meaning to do so but it really opened the door and set the foundation, legal foundation for what evolved from being a pretty small and obscure set of programs, in about a dozen states up till the late 1990s there were only about 13 states that had these formal prescription drug monitoring programs. And in the 21st century, since about 2000 that number went from 13 to now 51 programs. So all states and DC now have a prescription drug monitoring program.

Adam: And it was like 39 only two years ago, right?

Leo Beletsky: Right.

Adam: So it’s really kind of exploded. And, and what’s, what’s curious about this is just how little media attention it really gets. One of the things I was surprised by was the suddenness with which it happened obviously fueled by a broader issue of the opioid crisis. Some people call it the opioid epidemic, which of course it doesn’t really quite meet that definition. And I think I want to really establish the stakes here because I think most people listening, like you said, some of this may seem somewhat obscure, rarefied, but it really does impact everyone cause it is really just a dragnet surveillance system. So if you have a prescription drugs, which is pretty much anyone listening, your data is part of this system. And the ACLU is obviously very involved in this, your work at Northeastern is very involved in this, what are the privacy implications, uh, broadly speaking?

Leo Beletsky: Well, the reason why this is something that, you know, we should be talking more about is that it’s not just that the number of the prescription drug monitoring programs has completely exploded in the context of the, you know, overdose or the opioid crisis, whatever you want to call it, it’s also that the scope of the programs and the policies that support them has also expanded substantially in the context of the crisis. And the story is basically that people’s narrative around this crisis is that essentially doctors were handing out prescriptions for opioid drugs willy nilly, handing them out like candy and that there were lots of doctor shoppers, people who are going from one doctor to another kind of complaining about either feigning back pain or other kinds of conditions that would warrant an opioid prescription or if they had a legitimate, you know, pain need they would use that to, uh, obtain drugs from multiple prescribers or multiple pharmacies. So this narrative around, you know, what’s causing the crisis, which is in many ways, either partially correct or you know, not really correct in some ways, it really drove a lot of the policy attention and policy will to basically reach for this existing tool. This tool existed. It was on the books in a bunch of states and there was legal jurisprudence that said, you know, this is a space where government can essentially have a lot of latitude. And so those things, the desire to quote unquote “do something” about this major public health crisis combined with this fertile ground on the legal and the policy side, made it possible for legislators to reach for this tool and implement, you know, prescription drug monitoring programs and kind of, you know, do a victory lap and say, ‘yo, we actually, you know, responded in a very decisive manner to this crisis by creating this surveillance system.’ And there’s this, you know, from a linguistic standpoint, there’s this sort of marriage between what people started saying, ‘well, we can’t, you know, arrest our way out of this problem, we need to address it as a public health problem and public health does rely on surveillance.’ You know, public health surveillance is a, is a major sort of element of effective public health responses to various emergencies because we have to, in order to mount an effective response, you have to know what the problem is. And so public health really embraces that idea of surveillance. And in that way, actually, you know, maybe this is a little bit of a linguistic side note, there is not as much of a distinction between public health and criminal justice as people assume. The legal term for public health power of government is police power. And public health does rely on a lot of coercive tools such as quarantine for example and this is where the epidemic language actually starts to materialize into real punitive of course, of policies. You know, we say this is an opioid epidemic, well to control epidemics, we need surveillance, we need data. And so a lot of times there is this kind of weird blurring of what public health and criminal justice or punitive procedural approaches try to do and that’s definitely true in the case of prescription drug monitoring programs, which under the guise of public health surveillance are really about discipline and control and punishment.

Adam: Right. So it seems like there’s a push now both in terms of how how drugs are covered and how their  legislated about like both in the media and how policy makers look at this to move away from a shift from looking at it like a criminal enterprise to a public health issue. Your argument is that perhaps the line is not as clear as people want it to be, which is a descriptive statement. Could you maybe venture and make a normative statement that perhaps the line should be clear?

Leo Beletsky: Well there is a lot of discourse in public health about how sort of a critical approach that balance individual liberties and privacy interest in confidentiality with this more population based, you know, utilitarian, if you will, approach of, you know, having the public health be the main goal. If you’re oriented towards public health, to protect the health of the many, a lot of times the idea is that you can sacrifice the liberties of the few, right? And so there’s this tension. So done right public health is successful if it actually is, you know, respectful of privacy, confidentiality because guess what? If you construct public health surveillance efforts in a way that disparages stigmatized people or punish people, then you end up not only hurting individual rights, civil liberties and so forth, but you end up actually hurting public health efforts in the long run. So, you know, just as an example, one of the most recent sort of vivid examples of this was how quarantine efforts were conducted in places that were hard hit by the Ebola epidemic last year. And so, you know, cities went around basically quarantining whole neighborhoods and doing so, you know, with actual force. So there are soldiers, you know, trying to keep people from leaving certain areas. What ends up happening is that, you know, a lot of times if people have Ebola in their house, you know, if they know that their house is going to get basically, go on lockdown, what happens is they don’t report and as a result they don’t seek help, as a result, the person ends up progressing their disease, they end up infecting many more people than they need to. In other words, it ends up backfiring and the similar set of considerations is certainly import here when we talk about prescription drug monitoring programs in the sense that if it’s not done right, you end up doing more harm than good, which is something that, you know, we can talk about sort of the unintended consequences. The one thing that I did want to mention is that, you know, you said I’m kind of top expert on PDMPs, there’s an interesting dynamic here which is that there are many, many people who are experts on these systems and legislators who have become, you know, really interested in these systems. The conversation that we’re having is actually an anomaly in the sense that if the mainstream narrative around PDMPs unequivocally positive and for most people who are familiar with this issue, which there are many, there’s an entire academic center of Brandeis, for example, that’s a center for excellence on prescription drug monitoring. There is a large corporation called Appriss that almost is the, uh, has a monopoly on PDMP systems design and implementation and they also, this is maybe indicative, they also do a lot of, you know, criminal justice systems, predictive risk scoring and stuff like that. And so this is a niche issue, but the critical approach that we’re discussing, the critical perspective that we’re discussing is even more obscure and underappreciated.

Adam: Because it seems like, you know, intuitively I think this would strike a lot of people as being like, again, just intuitively, maybe not the most intellectual rigor, but it would strike them as being somewhat dystopian in many ways, namely because it assumes a ton of good faith on the part of authorities. And I think that historically, especially people who are on the political left, understand that things that may have quote unquote “good intentions” will end up being used for other purposes. This is something, of course we saw with a lot of the post 9/11 security apparatus. This was a huge discussion during the Snowden revelations about mass surveillance. And of course we knew from several of those revelations, especially British intelligence, you know, did things that were pretty gross in terms of, you know, sexual extortion, using social media to manipulate people, things that were sort of more militarized and more sinister. And I think that, you know, the sort of, ‘oh, I’m not doing anything wrong or I’m not abusing prescription drugs so I have nothing to worry about,’ this is probably where it’s sort of the more ACLU side comes in and says that’s not really the point. The point is you’re creating another mass surveillance system without, at least it appears to me, not really a ton of public debate or input. And I think that’s really kind of the thing that it appears that people like to some extent, you know, what you’re doing, the ACLU are doing is saying, you know, ‘maybe we should pump the brakes on this and talk about what are some of the negative side effects aside from surveillance’ you, you talk about public health implications, you write a lot about the chilling effects on providers and perhaps deterring people from seeking pain treatment and drug treatment. Can we meet, can we talk about some of the downsides, both, not even necessarily the downsides that are sinister in motive but that are resulting from creating a chilling effect in terms of people being scared of being flagged on the system?

Leo Beletsky: Yeah, absolutely. Just as you said, the, the story here is one where a source of major public concern where the 9/11 era, it was national security, in the overdose crisis it’s public health and patient safety. Under that banner what policy makers do in terms of formulating, you know, policy prescriptions, the responses that they come up with, are oftentimes more about the theatrics of policy making and putting up a performance of decisive action. And what happens in that context is a lot of times those responses are knee jerk responses that are not very well designed and they’re, you know, in some ways like the principles of design thinking are not, are not invoked here in the sense that the question should be, okay, what is it that we’re trying to accomplish here? If we’re trying to accomplish a reduction in overdose deaths, let’s set that as a goal and work backwards, you know, let’s, let’s kind of think through how these policy solutions, how these policy prescriptions are going to impact what it is that we’re trying to accomplish. And with the prescription drug monitoring programs, there were essentially a number of leaps of faith that people engaged in when they said, ‘oh, this is going to deter and diminish what are called aberrant behaviors or you know, sort of deviant behaviors by prescribers and patients and therefore we’re going to decrease overdoses as a result. So it’s a little bit of like a trickle down ideology. And it turns out that actually those leaps of faith have not materialized. And so there are two kind of major critiques here. One is that this, you know, these systems don’t actually accomplish what they’re sold to do in the sense that they’re not addressing of the public health crisis that we have. They may result in reduced prescribing at least as that prescribing is tracked in the system but they don’t, that doesn’t end up materializing into or translating into overdose deaths. So that’s, that’s one major critique around kind of like are we designing these systems to do what they’re supposed to do? And then the second part of the issue that your question was addressing is, okay, well if it’s not resulting in intended consequences, then is it resulting in unintended consequences? And here the answer is a resounding ‘absolutely.’ And, and those unintended consequences involve privacy and confidentiality that you mentioned but they also involve changes in the ecosystem for health access to various substances that are tracked by the system that include opioids, but they’re not exclusively opioids. So prescription drug monitoring programs track what are called controlled or scheduled substances. So it’s not all prescription drugs, it’s just those drugs that are scheduled under the Controlled Substances Act or, or similar legislation on the state level. So the Federal Controlled Substances Act, as many listeners will know, tracks, there’s five schedules. Schedule one is drugs like heroin, LSD, psilocybin, absurdly cannabis. Scheduled two are drugs like fentanyl, cocaine. So these are, you know, sort of highly addictive. And I guess theoretically, you know, sort of dangerous drugs that do have a medical purpose and then it goes down from there. So, so the federal schedule then gets translated into state law through the State Controlled Substances Act. And that’s what prescription drug monitoring programs anchor on. So they basically say we’re going to reference the state schedule and track all of the like schedule two to five or  schedule two to four drugs that are prescribed. And the reason why the Dragnet surveillance moniker is applicable here is because schedule two through five drugs are your antidepressants, your pain control medications, things that you don’t even kind of think about that include testosterone for example. So if you’re going through gender transition, your testosterone prescriptions are going to be tracked by the prescription drug monitoring program as a side effect of the fact that at some point metabolic steroids became scheduled because they were being diverted and misused by people, I guess, you know, engaging in like bodybuilding or performance enhancement. And so because that drug is in the schedule, it’s tracked by the PDMP. And similarly, you know benzodiazepines. So if you’re depressed, your prescriptions are tracked by the PDMP. And what that means is that anyone who has access to this system, and this is a, you know, a government system, it’s a government database that’s available to a large number of kinds of authorized users, all of those people can theoretically go in and know your business based on the information in this database. So it just creates fertile ground for a lot of unauthorized disclosure of very private information and possible government abuse of that information in various ways.

Adam: So yeah, let’s talk about that. Cause I think most people when they first hear this, they think, ‘oh well there’s HIPAA so, you know, I’m fine that this is not something that is even legal.’ What is the, I mean obviously HIPAA has exceptions when it comes to law enforcement. To what extent does that run up against these laws? And obviously different states have different standards. I know some states require a warrant, others don’t. Can we talk about how different states are approaching this and which are kind of on the more liberal side as it were in terms of just letting any old Joe sort of look at your information and which have more strict policies on that? So we get a sense of the kind of good, the bad and the ugly.

Leo Beletsky: Great. So the data protections for PDMPs are really all over the map and states have different standards as you said, about a dozen states have a warrant requirement. I guess as a general matter, the level of access for law enforcement for this information is, it shocks the conscience when you first start to learn about it. So yes, healthcare information in general is accessible to law enforcement through court order warrants and other kinds of mechanisms. That healthcare information, you know, is typically not centralized in databases that are, you know, essentially at the fingertips of law enforcement. And that’s basically why prescription drug monitoring programs, which extract healthcare information and put them into a state run database, that’s, I think that’s an important distinction. This is, these are not healthcare institutions housing their own data that someone has to go in and request access to. Right? So those data are protected by HIPAA. As soon as the data flows out of healthcare institutions, institutions that are either involved in provision of healthcare or involved in some kind of administrative function in healthcare, HIPAA basically stops at that door. And so HIPAA no longer applies to any data that’s housed at what are called non-covered entities. So a state PDMP is not covered by HIPAA at all. HIPAA itself has a law enforcement exception, as you mentioned, that is pretty broad and in my opinion you can drive a truck through and it, you know, really needs to be tightened. And people kind of assume wrongly that their data is protected from law enforcement surveillance because of HIPAA. That’s not correct. But I think just from a logistical standpoint, having all of these data kind of collated and centralized to a state system to which law enforcement has a ready portal creates an opportunity for a lot of basically Dragnet surveillance. And a lot of what I think can be characterized as fishing expeditions.

Adam: There’s implications in the trans community for this, especially in states and areas of the country that are maybe not so tolerant. Can we talk about the implications on that? Cause I think some of our listeners would be interested in that as well.

Leo Beletsky: Yeah, I think this is a super interesting and important angle that was surprising to me when I first started learning about this issue. And so there’s been two major recent cases on a federal level relating to prescription drug monitoring programs and law enforcement access to these programs. One was in Oregon and one was in Utah. And in both of those cases, states that had a warrant requirement as a matter of state law, for law enforcement access, received administrative subpoenas from the federal government saying, ‘we want your PDMP data, hand it over’ and the states said, ‘we can’t hand it over, you need a warrant.’ And the federal government said, ‘screw you, we don’t need a warrant, give us the data.’ And so they went to court. And in both of those cases, the federal government successfully argued that the Controlled Substances Act is written so broadly that it permits access to state PDMP data without a warrant. And the cases were not appealed from the circuit level. You know, there was a decision, I guess kind of let it be for now to be a kind of a circuit split situation. And there’s a case percolating now in New Hampshire that asks the same question but under the new Carpenter Doctrine, which relates to, you know, basically Fourth Amendment protections for electronic data. And so there was a little bit of enthusiasm or the idea that Carpenter would provide an extra level of protection for these data. But the reason why I mention this is because in both the Utah and in the Oregon litigation, there were interveners, so people who came forward to participate in these cases from the trans community. So we talk a lot about opioid crisis and how doctors and patients receiving opioids are maybe potentially harmed by these programs and are victims of unintended negative consequences. But these interveners, were trans individuals who said, you know, ‘why should the federal government receive information that could flag me as, you know, my very sort of, the most deeply held or closely held private information about my gender identity as a matter of an administrative sort of function, administrative subpoena.’ And it’s an interesting case study where in many other areas essentially Dragnet surveillance creates these unintended pockets of harm for various vulnerable groups. So, you know, we, we kind of the, the story about how pain patients or people receiving substance abuse treatment, might respond in ways that are deleterious to them and to the public health. But in this case, you know, these are folks who are not receiving any kind of addictive or really ostensibly abusable quote unquote “drug.” And just by the virtue of systems not being narrowly tailored to accomplish their goals, they end up ensnaring folks who, you know, just happen to be getting their healthcare needs met in a way that ends up invoking this, you know, very broadly deployed system.

Adam: And we’re talking about things like testosterone hormone.

Leo Beletsky: Right so testosterone hormone therapy is tracked by the PDMP. And then you know, becomes visible to everybody, including, you know, to law enforcement for no good damn reason.

Adam: Right so in theory some local sheriff can look it up and be like, okay.

Leo Beletsky: Yeah. So and there’s been, I think the case that you were mentioning, there has actually been instances where people going through gender transition who are employed in the police force have had their status disclosed without their consent, by the virtue of their colleagues having access to that drug monitoring.

Adam: Wow. For people who are interested in the subject and want to learn about it more, what are some good sources that they can read?

Leo Beletsky: So I have an article and the Indiana Health Law Review called “Deploying Prescription Drug Monitoring to Address the Overdose Crisis: Ideology Meets Reality” that gives, you know, kind of a broad overview of this and that’s available for free on Social Science Research Network, SSRN, and my colleague Jennifer Oliva has an article on this issue coming out called “Prescription Drug Policing.” It’s coming out in Duke Law Review and Anne Boustead at University of Arizona has an article called “Privacy Protections and Law Enforcement Use of Prescription Drug Monitoring Databases.” And that’s also forthcoming. So there’s an emerging number of critiques of the system and I think the bottom line for me is not to say that, I’m definitely sober to the idea that prescription drug monitoring programs are not going away. So I’m not an abolitionist. I’m a harm reductionist at heart. And I think that there’s a lot that these systems could be used to improve healthcare for people who are receiving prescription drugs. We can use them as a platform for improved decision support for providers, you know, in some ways PDMPs are a response to the fact that absurdly we don’t have a universal health record for patients. We should be able to transfer the data about our prescribing history. But everything else, you know, our data should be portable and private, but accessible to healthcare providers across the board when we receive care under those providers. So in the absence of that, you know, there, the response has been, okay, well let’s just take a very small slice of that and make it available to many more people than really, you know, need this information. So can PDMPs be done right in the sense that they can help coordinate care and improve care for patients? I think definitely. I think that requires a lot of investment and thinking, sort of design thinking about how to configure and calibrate these programs in the best possible manner. That really hasn’t, that conversation just beginning absurdly. And then simultaneously you really need to think about reducing the negative consequences such as PDMPs triggering patient abandonment. If a patient looks like they’re setting off red flags, a lot of times that patient will just be let go by the provider and that’s just uh, you know, a really harmful outcome from the patient health perspective and a public health perspective.

Adam: It seems like the objection to me from a lot of what I’m reading is less so that the system itself is inherently bad or, or dystopian. It’s for lack of a better term, it’s the kind of militarization of it or the policification of it.

Leo Beletsky: Right. And the policification of it in many ways is indicative of the true sort of, not the stated goal but the true goal, which is you know, to track and use it for kind of, you know, just disciplinary and punitive purposes rather than to actually improve care.

Adam: Which is part of a broader culture of making everything a criminal issue, which is not specific just to this. Right.

Leo Beletsky: Right. And it and it really cuts at cross purposes with what people say, which is, ‘well we’re taking a public health approach.’ This is not a public health approach in the true sense of it.

Adam: All right. Well this was a extremely informative, I look forward to following up on your work in this space and if you’re interested in this and much more you can also follow Leo  at his Twitter @LeoBeletsky at Twitter.com. Thank you so much for coming on.

Leo Beletsky: Really appreciate it. Thanks.

Adam: Thank you to our guest Leo Beletsky. This has been The Appeal podcast. Remember, we can always follow us on The Appeal magazine’s main Facebook and Twitter page and you can always find us on iTunes where you can rate and subscribe. The show is produced by Florence Barrau-Adams. The production assistant is Trendel Lightburn. Executive producer Sarah Leonard. I’m your host Adam Johnson. Thank you so much. We’ll see you next week.