What the AIDS Epidemic Can Teach Us About the Opioid Crisis
Will My Insurance Pay for Rehab?
What the AIDS Epidemic Can Teach Us About the Opioid Crisis
A man walks into a pharmacy. His face is wan; his skin clammy. He is thin—too thin, and the other customers notice, though they pretend not to. His deep-set eyes are lined by thick, bruisey crescents of finely wrinkled skin. His cheekbones are aggressively angular. His clothes are bulky, but they hang off of him without form, as though beneath them stands nothing but a cheap steel and wire rack. He is at once the most noticeable and the most invisible person in the store. When he swerves, those near him catch a sour odor, though none reach out to catch him. He appears so fragile he can barely stand, and it's clear he can no longer care for himself. His lips bear a bluish tinge. Their edges are gummed with spittle. He is far too young to be in this state.
When the man enters the room, the air stills. It is as though everyone has sucked in a collective breath, trying not to consume the same oxygen as him. They don't want to catch it—this thing that has made him whatever it is he is.
The man stumbles toward the counter, but he only makes it a few feet before falling. It's not clear whether or not he is breathing. None of the customers move to help him. The pharmacist hesitates, then comes around from the counter and places a gloved finger to his neck to check for a pulse. No one else will touch him. Shoppers stare at him sprawled across the floor, talking in tones that grow louder as the minutes pass. Through it all, he remains unmoving. The pharmacist stands over him, his face twisted in an expression of uncertain helplessness. It will be several minutes before paramedics arrive. When they do, they know exactly what he is, and treat him with the dispassionate detachment of someone who is handling a corpse, even while the man awakens to answers the medics' questions.
What have I just described? Anyone who's seen the overdose videos circulating on the internet lately will say it's a description of an opioid overdose, but someone who lived through the 1980s and 90s AIDS epidemic could easily have envisioned a friend on the last legs of the disease. That description, of course, is a stereotype; some but not all people engaged in active addiction look this way, but our popular consciousness imagines the “junkie” as a wasted, obvious figure, just as we once did with HIV. Opioid addiction and Human Immunodeficiency Virus are completely different health issues, but they share a related enemy: deep-seated, widespread stigma so powerful it literally kills.
Peter Shalit, a practicing physician based out of Seattle, Washington, completed his medical training during the height of the AIDS epidemic. When he joined his first practice in 1990, he says he "jumped right in," likening the experience of treating HIV and AIDS during the early 90s to being in combat. He says the discrimination—fueled by misinformation or just lack of information—was rampant.
"I had patients who would go home for the holidays and tell me 'oh my sister didn't come because she has two little kids and she didn't want them exposed to me.'"
"There is a lot of correlation [between HIV stigma and addiction stigma]," he adds. "The correlation is that outsiders blame the person for the illness—they say you got this because you did something bad. You are an opiate addict and addicts are bad because you are using this illegal substance, or you have HIV or AIDS because you are bad and you had sex with somebody who had AIDS."
Last year Erika Hurt went viral for being caught on camera overdosing in a car with her child. At the time, she was reviled. People shared her photo across the internet, saying they hoped for her child's sake she would die; that she was a hopeless, irredeemable junkie. This year, she announced one year of sobriety. The same week her announcement made news, a video of another overdosed mom hit social media. This one takes place in a discount store, and features a distressed, unaccompanied toddler tugging at her mother's body. The mother is sprawled across the floor, totally unresponsive. The video garnered a lot of responses; everything from anger at the people filming it, who did nothing to comfort the distressed toddler, to (expectedly) trolls stating that, like Hurt a year ago, the mother should be left to die.
When I watch that video, I have a much more visceral response. With both faces blurred, that little girl shrieking in her Frozen onesie could easily have been one of my own, and that lifeless mom on the floor could be me. I've never been unlucky enough to have my overdoses launched across YouTube, nor was I ever approaching death in public with my child, but I have survived nine overdoses. Similar to the mother in the video, I have a child neglect charge lobbed against me by Child Protective Services for one of those overdoses, when my own daughter begged me to wake up from where I lay prone outside of my bathroom. I'll never forget the shower of gummy kisses she gave me when I did.
When I read comments from the internet trolls saying the mother should be left to die (in front of her child, no one acknowledges), I'm angry, because I know they're not just talking about that woman in that video; I know they also mean me, and Erika Hurt, and everyone else who's ever experienced addiction. But it's not just laypeople saying these cruel things—it's people who have actual power too, and that scares me. This is the AIDS panic all over again, but the trolls and lawmakers seem oblivious to the fact that they are already on the wrong side of history.
Shalit strikes me as a man endowed with extraordinary empathy. Nonetheless, there is a note of disdain in his voice as he recalls surgeons who refused to operate on his patients because, as they told him, his patients “had a very short life expectancy anyway.” Ironically the Reagan campaign that kickstarted the War on Drugs also had a big hand in HIV/AIDS stigma by essentially ignoring its progress and refusing funding that would have made necessary medicines widely available. Sound familiar?
On October 26, 2017, Donald Trump declared the opioid addiction crisis a public health emergency, creating what is basically a misguided awareness campaign that allots only $57,000 to an issue the Centers for Disease Control says costs billions.
Quoted in the Washington Post, Middleton, Ohio Council Member Daniel Picard says that his city "cannot afford to treat overdose victims." He espouses a two-strike plan, in which people who overdose a third time are ignored. Picard's plan would see me dead within two years of my addiction, never giving me the chance to gain the nearly five years of recovery I have today.
In a Healthline article headlined "Should People Who Overdose on Drugs Be Saved?" Jessica Wakeman reports on an Ohio sheriff who refuses to allow his deputies to carry naloxone, the drug that can reverse an opioid overdose.
I recall reading an op-ed in the Observer-Reporter written by a healthcare worker who declared he was exhausted with reviving the same people numerous times. An Emergency Department Health Unit Coordinator I interviewed over Facebook messenger (who asked to be quoted anonymously for professional security) shared a similar disdain for the "regulars" she frequently saw pass through her halls. When I was in the ED at Seattle’s Harborview Hospital being treated for an overdose, I overheard staff members loudly joking about my demeanor and mocking what I said aloud. They were standing within feet of me—clearly within hearing range—but that did not seem to affect them, nor did they appear threatened by the possibility of me lodging a complaint. It was like I wasn't a person (UW Medicine, which governs Harborview hospital, declined to respond to this statement).
In 1984, an Indiana boy named Ryan White acquired HIV through a blood transfusion. He was just 13 years old. When he wanted to return to school, protesters claimed he was an abomination who brought his illness upon himself.
Writing for PBS, Dr. Howard Merkel says, "Ryan was forced to listen in on his seventh grade classes via the telephone. Several school officials, teachers, parents and students erroneously (and cruelly) insisted that Ryan might transmit his HIV by casual contact, such as a handshake, from using the public restrooms or even from handling the newspapers Ryan delivered on his paper route."
Earlier this month the Leachville, Arkansas Police Department made national headlines by claiming shoppers and their children could be killed by fentanyl dust residue left behind by druggies on shopping cart handles—a claim that sounds preposterous but nonetheless had to be fact checked by CBS News in order to be dispelled.
"All you'd have to do is rub your nose or touch your child's mouth...Children just being exposed to the powder or residue is a bad situation that can turn deadly." CBS News reports an officer wrote on the Leachville Police Department website (the original Leachville report has been removed).
Once upon a time there was "bug chasing:" rumored HIV-roulette orgies in which gay men had lascivious sex knowing some—but not all— people were positive, but not knowing who. Now the myth is "Narcan parties," where heroin users gather together to intentionally overdose under the guidance of an assigned sober-sitter who will save them all from the brink. If these stories sound absurd, it's because they are—neither is real, yet the public consciousness seems captivated by the idea of these kinds of underground deathcapades playing out beneath their upturned noses.
Injection drug use carries special stigma because it symbolizes a radical departure from social norms; whereas eating and smoking are normal, injection is considered a medical act and self-administering enacts both a literal and figurative transgression of what is "supposed to be." The same was true of HIV when it was falsely believed to be transmitted only through gay anal sex. The conflation of taboo behavior with medical malady makes it easier to demonize the condition, even if the people who have it never actually engaged in the taboo behaviors at all.
"It's blaming the victim for the illness," says Shalit of both HIV and addiction. "With HIV there's this whole thing that if you got it from a transfusion you're innocent, but if you got it from sex then you're a bad person." A similar parallel exists in the addiction community; if someone becomes injured and develops an addiction to prescription pain pills, she is often considered a victim of a predatory medical community. If, on the other hand, someone picks up a needle and injects drugs he bought on the street-corner, he is labeled a junkie criminal—regardless of what brought him to that corner in the first place.
HIV treatment has risen from the underground; if you are a politician and you don't support HIV treatment today, you probably won't get very far. But injection drug users still face the shame and stigma that was once shouldered by gay men with HIV. And for no better reason than the need to “other” those we misunderstand. We would never see a mom passed out on the floor of a steakhouse from a heart-attack and say, "don't revive her; she knew she had a heart condition and she still ate meat." But the "junkie mom" passed out in the pharmacy is considered culpable, which makes her easy to demonize, revile—even kill.
HIV is now highly treatable. Positive people usually live full lives. With safety measures in place, they can even have lovers who will never get infected. In the first world, the face of HIV has changed from someone emaciated by AIDS to someone who is healthy and smiling--someone who could be anyone. When I asked Shalit what factors he attributed to that change, he cited two: the correction of misinformation about HIV and AIDS transmission, and access to medication.
A similar outcome could be possible for opioid addiction. People could stop dying; maybe not completely, but certainly not in droves. If we fund better research, make evidence-based treatment widely and indiscriminately available, open safe consumption centers and more syringe supply programs and—perhaps most importantly—make naloxone available as much and as many times as needed.
But before that can happen, we need to acknowledge that we have already stood at this place in history—and remember how to move forward from it with dignity.