When mid-century matinee idol Rock Hudson appeared alongside Doris Day at a press conference in July 1985 looking glassy-eyed and skeletal, the scattered members of the early AIDS activism movement cautiously rejoiced.
“We were thrilled, in a really kind of awful way, because we thought maybe this is it, maybe this is AIDS,” says David France, director of How to Survive a Plague, the Oscar-nominated documentary about the influential New York City–based AIDS activist group AIDS Coalition to Unleash Power (ACT UP) that would form in 1987.
Early AIDS activists such as France certainly weren’t celebrating the prospect that Hudson might suffer from a highly stigmatized disease and face a swift and horrific death. Rather, in their desperation, as they watched fast-increasing numbers of their friends and lovers suffer such a fate, they had been praying for the power of celebrity to finally thrust AIDS into the national conversation.
They got their wish. After Hudson disclosed he had AIDS later that summer, the nation finally woke up to an epidemic that had been ravaging gay communities in major urban areas. During the short remainder of Hudson’s life, the beloved movie star and friend of first lady Nancy Reagan took to the activist pulpit, praising the sudden surge of public interest in tackling the burgeoning epidemic.
“That death began research,” France recalls of Hudson’s passing in October 1985.
The next year, the notoriously parsimonious President Ronald Reagan allowed a significant increase in the National Institutes of Health’s budget — for research into AIDS, a disease about which Centers for Disease Control and Prevention (CDC) scientists had first sounded the alarm five years earlier.
Flash forward three decades: Thanks in large part to a massive, sustained governmental investment, currently to the tune of more than $26 billion in annual federal dollars, the U.S. HIV epidemic is now increasingly being brought under control. At the same time, several city and state governments, such as those in San Francisco, Seattle, and New York City and State, have waged expensive, multifaceted campaigns to help control their own local epidemics.
Consequently, HIV is effectively crossing paths with the contemporary opioid epidemic, as that particular scourge follows a devastating upward trajectory and the governmental response remains woefully inadequate.
According to CDC estimates, the number of new annual transmissions of HIV declined by 14.8 percent between 2008 and 2015, from 45,200 to 38,500, while during that same period annual deaths among people diagnosed with AIDS declined from about 16,000 to 12,800; approximately 1.1 million people now live with the virus. Meanwhile, at least 2.1 million U.S. residents have an opioid addiction, according to government estimates, with those recently struggling with the condition including a long roster of boldfaced names: Macklemore, Demi Lovato, Rush Limbaugh, Cindy McCain, Matthew Perry, Jamie Lee Curtis, Eminem, Charlie Sheen (whose 2015 disclosure about his HIV status led to soaring testing rates), Courtney Love, and Steven Tyler. Some 42,000 Americans died from an opioid overdose in 2016, a rate that has soared fivefold since 1999. During the current century, opioids have already cut short the lives of more than 350,000 Americans, including such celebrities as Glee’s Cory Monteith.
This year, the federal government is ponying up some $27 billion for overall drug control efforts, including $16 billion for enforcement and interdiction and $11 billion for treatment and prevention. Much of this spending is earmarked for tackling the opioid epidemic. But public health experts believe such figures remain paltry given the scope of the opioid crisis, particularly because of insufficient support for what an increasingly widespread consensus says should be at the core of the U.S. response: evidence-based addiction treatment.
“We’re spending too little to address the epidemic, and you get what you pay for,” Caleb Alexander, co-director of the Johns Hopkins Center for Drug Safety and Effectiveness, says of the federal government’s “anemic” efforts so far. Looking to the future, he says, “Treatment costs are going to be enormous, but so is the cost of inaction.”
In April 2016, the legendary musician Prince died of what was eventually revealed as an accidental overdose of fentanyl, the extraordinarily powerful synthetic opioid painkiller that has swept through the U.S. drug supply in recent years. Eighteen months later, the same drug killed singer Tom Petty. Both entertainers fell prey to opioid use disorder the same way many Americans do: They were prescribed painkillers in this class — or in Prince’s case, he apparently got at least one physician to write prescriptions for him in someone else’s name — to treat chronic pain resulting from workplace-based physical trauma. For Prince, who had weathered long-term hip pain, dancing in heels for decades was his rarified version of a factory worker’s repetitive strain injury. Petty had recently concluded a nationwide tour he carried on with despite a hip fracture, on top of knee issues and emphysema.
These men’s awesome celebrity notwithstanding, the overall reaction to Prince and Petty’s overdoses — and to the opioid-driven losses before them of such other popular performers as Philip Seymour Hoffman and Heath Ledger — has amounted to nothing much when it comes to awakening Americans to the scope of the national crisis. By comparison, Rock Hudson’s death, as well as Magic Johnson’s announcement in 1991 that he had HIV, utterly jolted the national conversation about that epidemic.
Melissa Moore, deputy state director in the New York office of the national advocacy group Drug Policy Alliance, reasons that Americans are disinclined to file a celebrity overdose in the same mental folder where they place personal worries that addiction, or HIV, may hit them where they live. Such drug-driven deaths are “looked at as a part of the fast and quick lifestyle of celebrities that isn’t for an average person,” Moore says.
The public’s perception of the HIV and opioid epidemics — which do, of course, overlap given that injection drug use is a major risk factor for HIV transmission — have historically diverged in various other key ways. “People aren’t shocked by drug deaths or overdoses in a way that they are about a new and emerging infectious disease that they don’t understand,” says Kenyon Farrow, the former U.S. health policy director at the ACT UP offshoot nonprofit Treatment Action Group.
While AIDS was brand new during the Reagan era, the nation’s ebbs and flows of mass addiction to opioids date back more than 150 years. Today’s epidemic was brought on in part by excessive prescription of opioid painkillers after Purdue Pharma brought OxyContin to the market in 1995 and then aggressively promoted the drug as a pain-relieving godsend that boasted a low risk of addiction.
The current crisis actually represents history repeating itself. Following the Civil War, the United States saw a surge in the prescription of opioids such as morphine, codeine, and heroin, in part for battle wounds. The advent of modern chemistry in the early nineteenth century had given rise to the synthesis of such drugs, and the advent of hypodermic injection use for medications later that century fanned the flames of the epidemic. By 1900, 1 in 200 Americans were addicted to opioids, about the same rate as seen today.
Better training of the younger generation of physicians — older doctors were notorious for overprescribing opioids for a wide swath of conditions, from pain to diarrhea — helped contain that early epidemic, as did a series of major acts of Congress passed between 1890 and 1924 that progressively taxed opium and eventually banned its importation, required manufacturers to identify the components of medicinal products, and ultimately regulated opioids.
During the first few decades after World War II, addiction to opioids — particularly heroin — largely afflicted inner-city populations, in particular New York City’s. Throughout this period, occasional entertainer overdoses helped remind the general public of the dangers of opioids. Hank Williams, who suffered chronic pain due to a spinal condition, accidentally overdosed on morphine in 1953. During the post-counterculture era, heroin was behind the deaths of Janis Joplin and John Belushi.
Today, the stigmas associated with each epidemic powerfully mediate how people react to news of either HIV or opioid addiction. These involve not only deeply ingrained attitudes regarding race and class, but also by the question of whether individuals are seen to have brought HIV or addiction on themselves, and the perceived degree to which free will dictated their high-risk behaviors.
Early HIV activists moved mountains to combat the hostile attitudes society initially levied against those living with the virus. Media reports of celebrities such as Magic Johnson or Ryan White, the HIV-positive boy whose harsh discrimination at the hands of his middle-American town propelled him into the national spotlight, helped lend humanity to those living with the virus. White, in particular, seemed custom-made to inspire a more caring attitude toward people with AIDS: a sweet-faced boy who had contracted HIV “blamelessly” through hemophilia treatments and whose poetic last name, in tandem with his pale skin tone, projected a nonthreatening image of angelic purity to the nation’s racial majority.
Stigma toward those with HIV is generally driven by two main factors: fear of contagion, and judgment about what stigmatized behaviors an individual may have engaged in to contract HIV, including various forms of condomless, non-missionary-position, non-heterosexual sex, as well as injection drug use. Sex between men is, of course, much less stigmatized today than in the 1980s, when it was still illegal in half the states. But ignorance still abounds about how HIV is and is not transmitted, and that ignorance certainly drives people’s fear of contact with those living with the virus.
The predominantly white face of the opioid epidemic has helped drive a more forgiving public reaction to that crisis — a fact that invites painful historical parallels, given the harshly punitive response to people of color affected by the the heroin scourge of the 1960s and 1970s and the crack epidemic of the 1980s.
Additionally, the American public may be more sympathetic toward those addicted to opioids because they tend to perceive the epidemic as largely driven by doctors prescribing painkillers to individuals with legitimate medical conditions. The truth is, most of those who misuse opioid pills obtain them without a prescription. Additionally, droves of those who initially became addicted to prescription painkillers have migrated to heroin, which can be cheaper and easier to obtain.
All this said, drug addiction remains one of the most highly stigmatized human conditions, a fact that significantly limits the ability for celebrity narratives to help inspire the nation’s reaction to the opioid epidemic.
“Katie Couric getting a colonoscopy and everyone going to check their colon is not the same as Katie Couric coming out and saying she struggles with heroin addiction,” says Kassandra Frederique, New York State director at Drug Policy Alliance. “Celebrity can only carry you so far when it comes to stigmatizing behaviors.”
Perhaps the most crucial difference between the AIDS and opioid epidemics lies in how each has inspired troops of activists to fight for the respective causes. David France notes that, compared with today’s population of individuals addicted to opioids, gay men provided a much richer pool for potential activist foot soldiers during the 15-year crisis period of the AIDS epidemic, because such men were often either facing death themselves or thought they were.
“My study of ACT UP has led me to believe that self-interest was [AIDS activism’s] major component and major driving influence,” France says.
By comparison, those addicted to drugs like heroin or Vicodin, France argues, may not see overdose as a clear and present danger — and so may be less inclined to fight for their lives and those of others by, say, joining an activist movement or howling at their elected representatives. Additionally, the everyday lives of those in the throes of addiction may be so chaotic or otherwise compromised that these individuals lack the wherewithal to commit themselves to activism and political organizing.
Oftentimes, however, family members are indeed motivated to advocate for change. According to France, it’s such moms, sisters, daughters, and nieces who contact him pleading him to make a documentary about the opioid crisis.
“But they’re also not leaving their ordinary life to go full bore in the opioid movement,” he adds.
The comedian Russell Brand is one of the rare celebrities who has a history of opioid addiction and has thrown himself into advocacy work — although his is quite a problematic voice. In Brand’s 2012 documentary on addiction treatment, he is sharply critical of opioid substitution therapy such as methadone or buprenorphine. In the face of competing scientific evidence that supports such medically based treatment as an effective, if imperfect, means of reducing the risk of opioid-use relapse and overdose, Brand clings stubbornly to the abstinence-centered dogma of Narcotics and Alcoholics Anonymous as the preferred route to fighting the opioid crisis.
Celebrated photographer Nan Goldin, who suffered a recent bout of active opioid addiction that took hold after she was prescribed OxyContin for chronic wrist pain, has waged a vociferous and creative activist campaign against the Sackler family, the wealthy owners of Purdue Pharma. Calling for nonprofits to refuse donations from the highly philanthropic dynasty, she has orchestrated colorful, headline-grabbing protests at various art institutions, including in the Metropolitan Museum of Art’s Sackler Wing.
Having started her own opioid-addiction-related advocacy group, Goldin is among those pushing for a massive, multipronged federal investment in combating the opioid epidemic, to the tune of $100 billion over the next decade. Called the Comprehensive Addiction Resources Emergency Act, or CARE, the proposed legislation is not as pie-in-the-sky utopic as the extraordinary price tag may make it sound. Importantly, CARE is modeled after the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, itself a multipronged federal program that passed with bipartisan zeal in 1990 — during a Republican presidency — and which has been reauthorized enthusiastically ever since. Today, that legislation provides about $2.3 billion annually in vital healthcare-based response to the HIV epidemic.
Repeating the success of the Ryan White Act on the opioid front would require a massive advocacy movement in the coming years. Longtime activist Jennifer Flynn Walker, director of mobilization and advocacy at the Center for Popular Democracy, argues that with a continued accumulation of grassroots organizing against the epidemic, such a corps of foot soldiers could harness the publicity generated by a future celebrity overdose and channel it into considerable progress.
“If Prince died next year, I think you would see the same kind of response,” she says, referring to the kind of impact that Rock Hudson and Magic Johnson had on the HIV movement, with “everybody going wearing overdose ribbons to the Oscars.”
If Walker is right, the next famous person to overdose on opioids could yield a tipping point. “The celebrity death,” she says, “only becomes the watershed moment because there was the base organizing happening first.”