Over the last year, I’ve seen a growing number of comparisons between the current overdose crisis and the height of the HIV/AIDS epidemic three decades ago. The parallels are certainly striking: an escalating number of deaths, particularly among younger people; a sense of hard-hit communities feeling under siege; and a growing wave of new advocates demanding action and innovative solutions.
As someone who participated in AIDS activism in the early 1990s, and now works on ending the overdose deaths, the lens through which I view these parallels begins with this insight: Every public health crisis must be understood as both a medical issue and a social issue. Health care is necessary but not sufficient to reverse the course of an epidemic. We must also fight to remove barriers to access, and tackle the policies that have put so many people in harm’s way.
As we grapple with the overdose crisis, communities and policymakers should heed three key lessons from the fight against AIDS: Stigma is the enemy, activism is the accelerator, and medicines work only when people have access to them.
There’s a growing recognition that pervasive stigma toward people with substance-use disorders hurts our ability to end overdose deaths. In the early days of the HIV epidemic, people with HIV – and the groups perceived as most likely to have HIV, such as gay men, sex workers, and people who use drugs – were widely condemned for behavior cast as immoral and illegal. The fear of HIV extended to casual contact, as though people who might have HIV represented a contagious and contaminating threat to society.
When we dehumanize people, we not only push them away through shame and isolation, we also turn to fear-based solutions by rationalizing the need to control, coerce, and punish them. We rush to support the sympathetic few cast as innocent victims, while casting others aside through discrimination or incarceration, protesting against siting life-saving services in our neighborhoods.
By the mid-1980s, a majority of Americans supported quarantining people with AIDS; today, legislators call for forcing people who use drugs into treatment. Just as many law enforcement leaders proclaim that we cannot arrest our way out of the overdose crisis, neither can we shame our way out of it. Our best solutions lie in recognizing the dignity and humanity of people who use drugs, and listening to what they tell us will help them survive.
The second lesson from the AIDS crisis builds on the first: In the face of a government slow to respond, activism is the essential accelerator for change. The federal government was notoriously slow to address the AIDS epidemic throughout most of the 1980s, due in large part to stigma and politics. The current federal response to the overdose crisis might best be characterized as “too little, too late” – neither Congress nor the Obama or Trump administration has provided anything near the amount of funding necessary to bring down the overdose rates.
Despite a flurry of legislation, we remain far off from modernizing our treatment system and building out capacity for harm reduction and recovery services. Moreover, officials are still playing catch-up, focusing energy on opioid prescribing when the leading case of overdose death is now illicit fentanyl. The AIDS crisis demonstrated that activism spurs government action and funding. We need advocacy, driven by people and families most directly affected by the overdose crisis, to demand bolder action from our elected officials to save lives.
Deaths from AIDS-related causes began to decline only in the 1990s with the advent of effective medications. With the overdose crisis, we should have a head start: Effective medications to treat opioid-use disorder were already available when overdose rates began climbing. Yet they’re woefully underutilized and difficult to access; it should be an outrage that due to cumbersome and restrictive regulations, it’s still harder to prescribe methadone or buprenorphine for treatment of opioid addiction than it is to prescribe the painkillers that exposed so many people now struggling to opioids in the first place.
When effective HIV treatment became available, health-care providers and policymakers recognized the importance of making them accessible and affordable. The Ryan White CARE Act provided not just financing, but an infrastructure of case management and social support for people with HIV; similarly, federal funding for housing programs was expanded to bring people in from the streets. We need a similarly comprehensive care and support model for people at risk of overdose, with multiple points of entry. At the federal level, Rep. Elijah Cummings, D-Md., and Sen. Elizabeth Warren, D-Mass., have introduced the Comprehensive Addiction Resources Emergency Act, modeled after the successful Ryan White legislation. But securing this kind of federal response will require us to learn from the AIDS crisis by rejecting stigma and embracing activism.
Daniel Raymond is the deputy director of planning and policy at the Harm Reduction Coalition.