Champion of Pain Relief, Siobhan Reynolds Dead in Plane Crash

The pain community loses a pioneering activist

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All of us are irreplaceable to someone—but few are irreplaceable in the public sphere.  Siobhan Reynolds, 50, founder of the Pain Relief Network, who died in a plane crash Christmas Eve, was the exception. She tirelessly, compassionately and at huge financial and emotional cost to herself, worked to debunk myths about opioid treatment of chronic pain that continue to emerge even now.

The aspiring documentary filmmaker and mother of one was moved to activism by the overwhelming chronic pain suffered by her husband. Further spurred by learning that her son had inherited the same genetic disease, Reynolds was relentless.

Why, she asked, when opioids can help treat chronic pain, are they frequently only available to the dying—but not if your agony will last years?  Why, when addiction to opioids is actually rare, do we treat them as though everyone who takes these drugs is likely to get instantly hooked?  And why do we seem to see addiction—even in the dying— as a worse side effect than agony or even death?

To answer these questions, she educated herself in the intricacies of pharmacology, public policy, medicine and law.  A master at simplifying complex stories for the media, Reynolds then used every means at her disposal to bring what she found to public attention.

MORE: Report: Chronic, Undertreated Pain Affects 116 Million Americans

When her husband’s doctor, William Hurwitz, was repeatedly prosecuted in the early 2000’s for “overprescribing,” she spoke out, helping bring the plight of patients whose pain he treated more squarely into view.

Before his last case was ruled on by its final judge—significantly reducing his sentence— U.S. District Judge Leonie Brinkema told the AP, “The amount of drugs Dr. Hurwitz prescribed struck me as absolutely crazy.”  But after she’d heard testimony from experts versed in the data that Reynolds so often cited, the judge said, “I totally turned around on that issue… The mere prescription of huge quantities of opioids doesn’t mean anything.”

Later, in Florida, Reynolds came upon the story of Richard Paey, a man whose chronic pain was clearly documented in obvious medical conditions.  A 1985 car accident had left him with severe back pain—surgery intended to make it better was botched so badly that the surgeon responsible paid out massive malpractice judgments, not only in Paey’s case but in others as well.  On top of that, the wheelchair-using Ivy League law school graduate had multiple sclerosis.

Under a doctor’s care, Paey found that only massive doses of opioids  allowed him to take care of his three children.  But after he moved from New Jersey to Florida in 1994, suspicious pharmacists called the police, believing that the large amounts of prescriptions he filled meant he was selling, rather than consuming, such doses.

MORE: Are Doctors Really to Blame for the Overdose Epidemic?

Although he was put under surveillance for weeks and never found to sell a single pill, he was nonetheless arrested for trafficking, convicted and sentenced to a mandatory 25-year prison term in 2004, based merely on the weight of the drugs he possessed.  In prison, ironically, he was surgically implanted with a morphine pump that gave him doses higher than the opioid levels he had been convicted for taking.

Reynolds sprung into action, drawing attention to the case in the New York Times, 60 Minutes, and countless other major media outlets— generating such persistently bad publicity that Florida’s governor ultimately pardoned Paey.

A cousin of the Kennedy’s, Reynolds shared both the family’s commitment to public service and, seemingly, its undue portion of tragedy.  Using her own money and whatever donations she could gather, she traveled the country. She gave strategic advice and legal referrals to doctors prosecuted for prescribing high doses of opioids.

Indeed, although her critics are now claiming that there is no evidence to support long term use of opioids for chronic pain, as she argued, compared to the vast majority of other drugs, there’s actually more data favoring  long term opioid use. That’s because the FDA only requires short term testing for approval, a context often not mentioned in these attacks.

And although she’s been accused of it, Reynolds did not take money from pharmaceutical companies. While others who support opioid pain treatment have recently been attacked as pharma shills, data and personal experience, not monetary gain, drove her. Beyond that, some of her views were so radical—for example, she wanted the Controlled Substances Act that makes drugs illegal declared unconstitutional—no company would dare associate its brand with her.

Before Reynolds, prosecution of opioid-prescribing doctors was simple: hold a press conference, label a medical practice a “pill mill,” call the physicians “pushers with pens,” and file murder charges against them for every patient under their care who died with opioids in their bodies.  For good measure, invite both the grieving relatives and the addicts who blame the doctor for their problems speak out.

Reynolds told the other side of the story.  Her press conferences were dominated by patients who’d been helped by the doctors, who were now in agony because other physicians wouldn’t prescribe for them for fear of being charged. Unlike the patients in the overdose cases—80% of whom mixed their drugs with alcohol or illegal drugs and 95% of whom, one study in a region hard-hit by overdose found, have indications of drug abuse—these patients were following doctors’ orders and much more sympathetic to the media.

MORE: Study: Most Addicts Get Painkillers from Friends or Family, Not Doctors

“By making the pain patients real, we made the good guys and the bad guys change places—and that’s hard to do,” she once told me.

Moreover, the attorneys she worked with often demonstrated in court that the people the physicians were charged with killing frequently hadn’t even died of overdose.   In one notorious case, a woman’s spine was severed as she died as a passenger in a van crash.  Her doctor was charged with killing her because she had high doses of opioids in her blood at the time of death. That charge was dropped and the doctor was not convicted of trafficking.

Reynolds increasing success at changing the narrative of these cases drew resistance from the DEA and prosecutors.  In the last case she took on, Kansas prosecutor Tanya Treadway tried to issue a gag order on her, but was denied by the court. Undeterred, Treadway subpoenaed Reynolds for obstructing justice, presumably because the activist had put up a billboard proclaiming the innocence of the doctor being prosecuted. But bizarrely, the actual charges against her remained secret and over $40,000 in fines related to the case bankrupted Reynolds’ organization.

Her appeal of the secrecy element of the case went all the way up to the Supreme Court. In this battle she was supported by the ACLU on the left and by the libertarian Institute for Justice on the right, but the Court allowed the secrecy to stand so we may never know the government’s rationalization for its attempts to silence her.

Only death could do that. Those of us who benefited from her fierce intelligence will profoundly miss her.  Like fellow activist Larry Kramer (who took on AIDS by founding both GMHC and Act Up), she could sometimes be as hard on her allies as she was on those she opposed. Nonetheless, she was as loyal and devoted and kind as she was tough.  Although her marriage broke down during her husband Sean Greenwood’s decades-long battle with pain, she stayed with him and fought for him until he died in 2006.

She died with her new partner, Ohio attorney Kevin Byers, who was piloting the plane when it crashed and was also killed, along with the only other passenger, his mother. Reynolds’ teenage son is now an orphan. The same might be said for the chronic pain patients and doctors she supported.

Maia Szalavitz is a health writer for TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland‘s Facebook page and on Twitter at @TIMEHealthland.

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