Pain pa­tients frus­trated by a crack­down

Doc­tors are di­al­ing back opi­oid pre­scrip­tions as the cri­sis con­tin­ues. Pa­tients say they are be­ing de­mo­nized for sim­ply fol­low­ing med­i­cal ad­vice.

The Washington Post - - FRONT PAGE - BY JOEL ACHEN­BACH AND LENNY BERN­STEIN

Carol and Hank Skin­ner of Alexan­dria, Va., can talk about pain all day long. Carol, 77, once had so much pain in her right hip and so lit­tle sat­is­fac­tion with med­i­cal treat­ment she vowed to stay in bed un­til she died.

Hank, 79, has had seven shoul­der surgeries, lung can­cer, open-heart surgery, a blownout knee and life­long com­pli­ca­tions from a club­foot. He has a fen­tanyl patch on his belly to treat his chronic shoul­der pain. He re­places the patch ev­ery three days, sup­ple­ment­ing the slow-re­lease fen­tanyl with pills containing hy­drocodone.

But to the Skin­ners’ dis­may, Hank is now go­ing through what is known as a forced ta­per. That’s when a chronic pain pa­tient has to switch to a lower dosage of medication. His doc

tor, Hank says, has cut his fen­tanyl dosage by 50 per­cent — and Hank’s not happy about it. He al­ready strug­gles to sleep through the night, as Carol can at­test.

“He’s moan­ing, he’s groan­ing, he’s yelling out in pain,” Carol says.

“Why am I be­ing sin­gled out? I took it as pre­scribed. I didn’t abuse it,” Hank says.

He is part of a sweep­ing change in chronic pain man­age­ment — the ta­per­ing of mil­lions of pa­tients who have been re­ly­ing, in many case for years, on high doses of opi­oids. With close to 70,000 peo­ple in the U.S. dy­ing ev­ery year from drug over­doses, and pre­scrip­tion opi­oids blamed for help­ing ig­nite this na­tional catas­tro­phe, the med­i­cal com­mu­nity has

grown wary about the use of th­ese painkiller­s.

Chronic pain pa­tients form a vast con­stituency in Amer­ica, and mil­lions of them take opi­oids for re­lief. Changes in med­i­cal guid­ance cov­er­ing opi­oids have left many of them frus­trated, con­fused and some­times howl­ing mad. They feel de­mo­nized and yanked around.

Hank Skin­ner has been ta­pered grad­u­ally over the course of the year. The sit­u­a­tion is worse for peo­ple forced to cut back their medication too quickly. Even med­i­cal ex­perts who advocate a ma­jor re­duc­tion in the use of opi­oids for chronic pain have warned that rapid, in­vol­un­tary ta­per­ing could harm pa­tients who are de­pen­dent on th­ese drugs.

There is lit­tle doubt among med­i­cal ex­perts that opi­oids have been pre­scribed at un­sound and dan­ger­ous lev­els, par­tic­u­larly in their mis­use for chronic pain. But at this point there’s no easy way to dial those dosages back. Longterm use of opi­oids creates de­pen­dency. Ta­per­ing can cause ex­treme pain from drug with­drawal, re­gard­less of the un­der­ly­ing ail­ment.

The United States is now in the midst of a “na­tional ex­per­i­ment” as mis­guided as the one it con­ducted 20 years ago, when doc­tors put mil­lions of pa­tients on opi­oids with lit­tle un­der­stand­ing of the con­se­quences, says Tami Mark, se­nior di­rec­tor of be­hav­ioral health fi­nanc­ing and qual­ity mea­sure­ment for RTI In­ter­na­tional, a North Carolina think tank. She has con­ducted one of the few for­mal stud­ies of “forced ta­per­ing” of opi­oid pa­tients.

“This na­tional ef­fort at ‘de-prescribin­g’ is again be­ing un­der­taken with limited re­search on how best to ta­per peo­ple off opi­oid med­i­ca­tions,” Mark says. “You can’t just cut off the spigot of a highly ad­dic­tive medication that rewires your brain in com­plex ways and not an­tic­i­pate neg­a­tive pub­lic health con­se­quences.”

Many peo­ple who rely on th­ese drugs are scared. In interviews and cor­re­spon­dence with The Wash­ing­ton Post in re­cent days, chronic pain pa­tients have de­scribed their anx­i­ety about the na­tional re­ver­sal on opi­oids. They say they’re not drug ad­dicts or crim­i­nals, they’re just peo­ple in pain who were fol­low­ing the doc­tor’s or­ders.

And then the or­ders changed. “I’m scared. I’m scared of the pain. Be­cause it’s com­ing back now, lit­tle by lit­tle,” says Ni­cole Acuña, 41, of Flem­ing­ton, N.J., who has se­vere back and neck pain from arthri­tis and has so far been ta­pered from 120 mil­ligrams of oxy­codone a day to 105, with more ta­per­ing com­ing.

Other chronic pain pa­tients com­plain of how hard it is to get any pills at all. Pain man­age­ment clin­ics have closed. Many doc­tors have stopped prescribin­g opi­oids al­to­gether, and some pa­tients have be­come “opi­oid refugees,” trav­el­ing long dis­tances to find any­one will­ing to write a script.

Valerie Nord­strom, 56, of San­dia, Tex., who has been on opi­oids since a novice driver ran a red light and slammed into her car dur­ing her lunch hour eight years ago, is fu­ri­ous that her 30-day opi­oid pre­scrip­tion can’t be trans­ferred to a dif­fer­ent state. That caused her to miss be­ing with her daugh­ter re­cently when she gave birth.

“I’m an­gry. I’m hurt. I’m not out there sell­ing my pills. I’m not out there do­ing any­thing other than what they’re pre­scribed for,” Nord­strom said.

Sarah Ward, 37, of Chat­tanooga, Tenn., has been tak­ing opi­oids since hav­ing com­pli­ca­tions from an­kle surgery in 2011. Last year she was ta­pered to zero, be­cause her in­sur­ance com­pany wouldn’t pay for the drug test­ing re­quired by the pain clinic.

So she hurts, a lot: “I de­scribe my pain as walk­ing in lava while on fire be­ing dipped in acid and my bones be­ing pul­ver­ized by a jack­ham­mer. That’s what it feels like ev­ery sin­gle sec­ond.”

‘An ex­per­i­ment gone wrong’

Pain is not eas­ily mea­sured. The main way doc­tors gauge the de­gree of pain is to ask a pa­tient how it rates on a scale of 1 to 10.

In the 1980s and early 1990s, in­flu­en­tial re­searchers and doc­tors be­gan push­ing the idea that opi­oids had been un­der­used be­cause of their as­so­ci­a­tion with street heroin — the drug of “junkies.” They spoke of pain as the fifth vi­tal sign, a mea­sure of health as im­por­tant as blood pres­sure, pulse, tem­per­a­ture and res­pi­ra­tion. Pain re­lief be­came ac­cepted as a fun­da­men­tal hu­man right.

This philosophi­cal evo­lu­tion did not take place in a vac­uum. A hand­ful of re­search stud­ies in the 1990s seemed to sup­port a be­nign view of opi­oids as a chronic pain treat­ment, but the re­search was of­ten funded by drug com­pa­nies. Some of the most vo­cal ad­vo­cates for opi­oids were doc­tors who ac­cepted fees from drug com­pa­nies for speeches.

Some of those com­pa­nies mar­keted their opi­oids ag­gres­sively and made false claims about their safety and ef­fec­tive­ness. Phar­ma­ceu­ti­cal com­pany rep­re­sen­ta­tives were reg­u­lar vis­i­tors to the of­fices of gen­eral prac­ti­tion­ers, by tra­di­tion buy­ing lunch for ev­ery­one on the staff.

Doc­u­ments cited in a mas­sive law­suit by the state of Ok­la­homa against John­son & John­son showed the com­pany tar­geted physi­cians that pre­scribed high vol­umes of opi­oids: “Our ob­jec­tive is to con­vince them that DURAGESIC is ef­fec­tive and safe to use in ar­eas such as chronic back pain, de­gen­er­a­tive joint dis­ease, and os­teoarthri­tis,” the com­pany wrote.

In 1996, Pur­due Pharma in­tro­duced and heav­ily pro­moted OxyCon­tin, a slow-re­lease for­mu­la­tion of oxy­codone that soon was bring­ing in more than $1 bil­lion of rev­enue an­nu­ally — and then $2 bil­lion. The com­pany claimed OxyCon­tin would be less likely than fast-act­ing opi­oids to be abused or lead to addiction.

That un­der­es­ti­mated hu­man in­ge­nu­ity. Peo­ple dis­cov­ered that they could crush a pill and snort it for an im­me­di­ate, pow­er­ful high. Or they could mix the crushed pow­der with wa­ter and in­ject it.

In a plea deal in fed­eral court in 2007, Pur­due Pharma and three ex­ec­u­tives pleaded guilty to de­cep­tive mar­ket­ing of the drug and paid $635 mil­lion in fines. But by that point an en­tire gen­er­a­tion of pain doc­tors had been trained to view opi­oids as a safe, ef­fec­tive, rel­a­tively non­ad­dic­tive treat­ment for chronic pain from com­mon ail­ments such as bad backs, torn ro­ta­tor cuffs, headaches and arthri­tis — and mil­lions of pain pa­tients had be­come de­pen­dent on opi­oids.

“You prac­tice ac­cord­ing to what you’re taught and ac­cord­ing to the text­books you read and ac­cord­ing to the lec­tures you go to,” said Jane Ballantyne, who came to the United States in 1986 from Britain, trained as a pain spe­cial­ist and be­came chief of the pain pro­gram at Mass­a­chu­setts Gen­eral Hospi­tal. “You don’t re­ally have time to look into it deeply. As soon as I be­gan look­ing it into it more deeply, it was clear the evidence is weak.”

What she and many oth­ers found was that opi­oids sim­ply didn’t work very well when it came to re­liev­ing pain over long pe­ri­ods of time. Pa­tients de­vel­oped tol­er­ances and needed greater dosages. Opi­oid pa­tients weren’t thriv­ing in gen­eral.

“It was an ex­per­i­ment gone wrong,” Ballantyne said.

A flood of opi­oids

In July, The Post pub­lished a Drug En­force­ment Ad­min­is­tra­tion data­base that revealed drug com­pa­nies had flooded the U.S. with 76 bil­lion oxy­codone and hy­drocodone pills in a seven-year pe­riod, from 2006 to 2012. The data­base was unsealed af­ter The Post and HD Me­dia of West Vir­ginia, pub­lisher of the Charleston Gazette-Mail, won a le­gal bat­tle in con­nec­tion with a law­suit against drug com­pa­nies filed by roughly 2,000 ci­ties, coun­ties and other lo­cal ju­ris­dic­tions and pend­ing in fed­eral court in Cleve­land.

Other govern­ment records show that in­di­vid­ual opi­oid pre­scrip­tions in the United States peaked at 255 mil­lion in 2012. Af­ter that, the num­bers fell steadily, to 199 mil­lion by 2017.

As the dosages dropped, drug deaths didn’t, be­cause the epi­demic mu­tated. Some peo­ple ad­dicted to the opi­oid high turned to street heroin when they couldn’t get pills. A surge of heroin into the United States was fol­lowed by an even dead­lier ar­rival of il­licit fen­tanyl. In 2017 in the United States, 47,000 peo­ple died of opi­oid over­doses — more than the death toll from traf­fic ac­ci­dents, and more than all the gun deaths, in­clud­ing by sui­cide.

The drug in­dus­try now faces a reck­on­ing. A state judge in Ok­la­homa ruled on Aug. 26 that drug­maker John­son & John­son must pay $572 mil­lion to the state for the com­pany’s role in the opi­oid epi­demic. The next day came the news that Pur­due Pharma has of­fered to set­tle state and lo­cal law­suits by pay­ing up to $12 bil­lion and fil­ing for bank­ruptcy.

Most of the drug com­pa­nies tar­geted in law­suits have mounted a vig­or­ous le­gal de­fense, and some have re­leased state­ments de­fend­ing their ac­tions and deny­ing that they are the source of to­day’s opi­oid drug epi­demic. Although the com­pa­nies do not speak with one voice, in gen­eral they have ar­gued that they were man­u­fac­tur­ing and sell­ing le­gal drugs that have le­git­i­mate med­i­cal uses, and the com­pa­nies have some­times blamed the cri­sis on over­pre­scrib­ing by doc­tors, il­licit di­ver­sion to street mar­kets and abuse by pa­tients or recre­ational drug users.

By Oc­to­ber of last year, 33 states had im­posed some kind of le­gal limit on opi­oid prescribin­g. In Jan­uary of this year, Medi­care Part D en­acted a limit for some new opi­oid pa­tients. Veter­ans Af­fairs re­duced the num­ber of pa­tients re­ceiv­ing opi­oids by 52 per­cent be­tween 2012 and 2019. Un­der or­ders from the DEA, the phar­ma­ceu­ti­cal in­dus­try cut the quan­tity of opi­oids it pro­duced by 38 per­cent be­tween 2016 and 2018.

In March 2016, the U.S. Cen­ters for Dis­ease Con­trol and Pre­ven­tion pub­lished a new guide­line on the prescribin­g of opi­oids for chronic pain. It proved con­fus­ing.

The guide­line said doc­tors should not in­crease an opi­oid dose to more than 90 MME (mor­phine mil­ligram equiv­a­lents). But many pa­tients al­ready were tak­ing far more than 90 MME, and doc­tors — think­ing the CDC num­ber was a hard cap — were ta­per­ing them back to 90.

Hun­dreds of doc­tors and other ex­perts, in­clud­ing three for­mer U.S. drug czars, signed a let­ter to the CDC in March of this year say­ing that the guide­line had been widely mis­in­ter­preted, and the CDC con­curred. In an ar­ti­cle in the New Eng­land Jour­nal of Medicine, the guide­line au­thors ac­knowl­edged that med­i­cal ex­perts don’t re­ally know what hap­pens to peo­ple forced to ta­per sud­denly from high dosages: “We know lit­tle about the ben­e­fits and harms of re­duc­ing high dosages of opi­oids in pa­tients who are phys­i­cally de­pen­dent on them.”

In a re­mark­able study of Ver­mont Med­i­caid pa­tients who used large daily doses of opi­oids for at least 90 con­sec­u­tive days, Mark’s team found that half the pa­tients were cut off with just a sin­gle day’s no­tice and 86 per­cent were dis­con­tin­ued in less than 21 days. Though 60 per­cent had an opi­oid use dis­or­der be­fore ta­per­ing, fewer than 1 per­cent of the pa­tients in the study were given anti-addiction medication such as buprenor­phine when their opi­oids were taken away. Pre­dictably, 49 per­cent of them were hos­pi­tal­ized or vis­ited an emer­gency room af­ter they were cut off.

“Peo­ple shouldn’t be forced to ta­per,” Mark said.

Ste­fan Kertesz, an addiction medicine spe­cial­ist at the Univer­sity of Alabama at Birm­ing­ham, said some pa­tients forced to ta­per will suf­fer an­he­do­nia, the in­abil­ity to feel plea­sure.

“Some peo­ple will be fine. Some peo­ple will ac­tu­ally thank you and say, ‘I feel a lit­tle more awake now,’ ” said Kertesz, one of the lead­ers of the group that pe­ti­tioned the CDC to clar­ify its pain opi­oid guide­lines. “The cases that draw my con­cern are the cases where the pa­tient says, ‘I don’t think I can sur­vive what you’re go­ing to do to me.’ ”

When re­searchers sur­veyed 194 pri­mary care clin­ics in Michi­gan in 2018, they found that 79 of them would not ac­cept new pa­tients tak­ing opi­oids, ac­cord­ing to a study pub­lished last month in JAMA Net­work Open.

“We’ve en­tered a new era of opio­pho­bia,” said Sally Sa­tel, a psychiatri­st and resident scholar at the Amer­i­can Enterprise In­sti­tute who is crit­i­cal of the way some chronic pain pa­tients are be­ing treated. Some “have the kind of pain that’s un­bear­able. Ev­ery day of your life. Un­bear­able. And those are the peo­ple who are suf­fer­ing. And their doc­tors are ter­ri­fied.”

Ballantyne, the pain spe­cial­ist, is now a pro­fes­sor of anes­the­si­ol­ogy and pain medicine at the Univer­sity of Wash­ing­ton and also pres­i­dent of Physi­cians for Re­spon­si­ble Opi­oid Prescribin­g. She is among the most in­flu­en­tial lead­ers of the move­ment to cut down the coun­try’s de­pen­dency on opi­oids. The United States still is the world leader in the re­liance on opi­oids.

But even she says that “the pen­du­lum did swing too rapidly.” Some pa­tients who have been tak­ing high doses of opi­oids for a long time may be bet­ter off stick­ing to what’s worked for them, she said. The most im­por­tant change in med­i­cal prac­tice — one adopted by Veter­ans Af­fairs— is to cut down on “new starts,” the pa­tients tak­ing opi­oids for the first time for ail­ments that might not re­quire that kind of painkiller.

There’s no sim­ple fix to the drug epi­demic, no sim­ple rule that can ap­ply to ev­ery pa­tient. So many of the big questions about opi­oids and chronic pain can be an­swered only with palms fac­ing straight up: It just de­pends.

“Un­for­tu­nately, very few things in medicine are quite that clear, and pain man­age­ment is cer­tainly not one of them,” says Suzanne Amato Nes­bit, a clinical phar­ma­cist at Johns Hopkins Hospi­tal in Bal­ti­more and the pres­i­dent of the Amer­i­can Col­lege of Clinical Phar­macy.

For Hank and Carol Skin­ner, med­i­cal care has been one long strug­gle, some­times a com­edy of er­rors. They joke that the hospi­tal is their sec­ond home.

Carol has had her own bizarre ex­pe­ri­ences with opi­oids. At one point dur­ing the or­deal with her in­fected right hip she took a high dose of mor­phine that caused her to hal­lu­ci­nate. She thought she saw the neigh­bor’s house on fire and called 911. At least a dozen firetrucks showed up. She could swear she saw the fire­fight­ers walk­ing atop her fence like gym­nasts on a bal­ance beam. She cut her dosage and then later went off opi­oids for good.

They don’t like the term “opi­oid cri­sis.” But they also know the stuff that Hank needs ev­ery day can be dan­ger­ous. He’s care­ful never to leave one of his fen­tanyl patches ly­ing around where a child might pick it up.

And there’s another shadow hanging over their home: Hank’s great-nephew over­dosed on heroin, pos­si­bly laced with il­licit fen­tanyl, ear­lier this year, they say. His name was Kevin Sa­muel Crath­ern. He was 26. The Skin­ners say the young man’s par­ents de­cided to scat­ter his ashes along his fa­vorite trail in Yosemite Na­tional Park.

SAL­WAN GE­ORGES/THE WASH­ING­TON POST

Hank Skin­ner and his wife, Carol, are no strangers to pain, hav­ing col­lec­tively ex­pe­ri­enced mul­ti­ple ill­nesses and surgeries. Hank, of Alexan­dria, Va., re­lies on a fen­tanyl patch and is be­ing forced to lower his dosage. “Why am I be­ing sin­gled out?” he asks.

PHO­TOS BY SAL­WAN GE­ORGES/THE WASH­ING­TON POST wapo.st/Opi­oid­sPain2.

Hank Skin­ner’s doc­tor re­cently low­ered his slow-re­lease fen­tanyl patch pre­scrip­tion from 75 mi­cro­grams per hour to 50. Soon, he’ll have to cut back even more. He is part of a sweep­ing change in chronic pain man­age­ment — the ta­per­ing of mil­lions of pa­tients who have been re­ly­ing on high doses of opi­oids, some­times for years. Hear from Hank:

Hank at home in Alexan­dria, Va., with his 3-year-old grand­daugh­ter Mira. Hank and his wife, Carol, have both strug­gled with pain, but she no longer takes opi­oids.

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