UN­IN­TENDED TAR­GETS

How pain pa­tients suf­fer in the opi­oid cri­sis.

Austin American-Statesman Sunday - - FRONT PAGE - By Mary Hu­ber mhu­ber@states­man.com

For many chronic pain pa­tients, the day doesn’t start un­til the af­ter­noon.

They say their joints are es­pe­cially stiff in the morn­ing. It takes a cou­ple of hours of move­ment and stretch­ing to feel even close to how healthy folks feel when their feet hit the floor.

Sonya Gib­son said she doesn’t sched­ule any­thing be­fore noon. She usu­ally gets in a few good hours fold­ing laun­dry and clean­ing the house be­fore she has to lie down

again at about 5 p.m.

She said she can’t sing or per­form the way she used to, be­fore the two car crashes that wrecked her pelvis and spine and per­ma­nently al­tered her life.

“If I do too much, my back be­comes un­bear­able,” she said.

Things have got­ten even worse this year, since Gib­son went off her opi­oid pain med­i­ca­tion. She’s no longer will­ing to bat­tle doc­tors over in­creas­ingly lower doses of the drugs be­cause of re­stric­tions amid the opi­oid cri­sis.

“The doc­tor low­ered my dose so much that I wasn’t get­ting re­lief. I was just phys­i­cally de­pen­dent,” she said. “Right now, I feel com­pletely aban­doned.”

Many pa­tients with le­git­i­mate pain say they are be­ing un­fairly tar­geted by sweep­ing leg­is­la­tion meant to curb pre­scrip­tion opi­oid abuse.

Hun­dreds plan to protest Sept. 18 across the coun­try to draw at­ten­tion to ne­glect they say they face be­cause of new reg­u­la­tions. The Don’t Pun­ish the Pain Rally in Austin is planned from 11 a.m. to 1 p.m. at City Hall.

Those in chronic pain can suf­fer from nu­mer­ous ail­ments, in­clud­ing arthri­tis, mus­cu­loskele­tal dis­or­ders, de­gen­er­a­tive disc dis­ease, pe­riph­eral neu­ropa­thy, mul­ti­ple scle­ro­sis and kid­ney dis­ease. They re­quire pain med­i­ca­tion to live nor­mal lives.

But in on­line fo­rums and per­sonal in­ter­views, some de­scribe an at­mos­phere of shame, em­bar­rass­ment and sus­pi­cion at doc­tors’ of­fices — where many are forced to un­dergo urine tests that screen for il­le­gal drugs — and say they feel un­due stress from be­ing cast as opi­oid ad­dicts on top of their in­sur­mount­able pain.

A host of new re­stric­tions put in place over the past decade also have made it more dif­fi­cult to ob­tain these drugs, in­clud­ing lim­its on how many doc­tors can pre­scribe opi­oids to a pa­tient, how many mil­ligrams are al­lowed and how much a phar­macy can fill.

The goal has been to cut the num­ber of opi­oid med­i­ca­tions be­ing dis­pensed as an in­creas­ing num­ber of peo­ple have be­come hooked on the drugs. Thou­sands have died from tak­ing them.

Nearly 12 mil­lion peo­ple in the U.S. mis­use opi­oid med­i­ca­tion, ac­cord­ing to the Sub­stance Abuse and Men­tal Health Ser­vices Ad­min­is­tra­tion. At the same time, more than 25 mil­lion Amer­i­cans suf­fer with daily pain, stud­ies find.

“The is­sue that we are left with now is that we have a whole gen­er­a­tion of pa­tients re­ally who have been of­fered and pre­scribed opi­oids ... and are now caught in the mid­dle of what is es­sen­tially a very large, some­what heavy-handed pol­icy and prac­tice shift in the use of opi­oids for chronic pain,” ad­dic­tion spe­cial­ist Car­los Ti­rado said.

A re­cent study of more than 1,000 pain pa­tients with 300 vary­ing con­di­tions found that 68 per­cent used more al­co­hol and to­bacco to treat their pain and 28 per­cent had con­tem­plated sui­cide. The Al­liance for the Treat­ment of In­tractable Pain, a non­profit that ad­vo­cates for pain pa­tients, tracked 98 peo­ple who killed them­selves af­ter cut­backs in opi­oid med­i­ca­tion or de­nied pre­scrip­tions.

Deaths on both sides

Last year, Mered­ith Lawrence scat­tered her hus­band Jay’s ashes near the Delaware River in New Jer­sey where he used to play as a kid, a month af­ter he shot him­self near the cou­ple’s Ten­nessee home.

The 58-year-old had bro­ken his back in a trac­tor-trailer crash in the 1980s and de­cided against surgery then be­cause he was young and strong. He started hav­ing prob­lems years later and un­der­went two fu­sion surg­eries in his neck and back and was placed on a mor­phine pump to treat his chronic pain.

On good days, he would walk the dogs and do chores. On bad days, he couldn’t move from the couch.

“It re­ally im­pacted him men­tally,” said Lawrence, who stood by her hus­band through years of doc­tors’ ap­point­ments and pro­ce­dures. “He went through a lot of the de­pres­sion that any­one with a chronic ill­ness goes through.”

Lawrence said her hus­band had fi­nally got­ten to a place where he was func­tional on opi­oid med­i­ca­tion when doc­tors in 2017 told him they were go­ing to cut his dose by 75 per­cent be­cause of new U.S. Cen­ters for Dis­ease Con­trol and Pre­ven­tion guide­lines.

“You could see it on his face, he just pan­icked,” she said. “We were not even back in the car, and Jay said to me, ‘This is not go­ing to work. And I’m not go­ing to do it.’ ”

A month later, he killed him­self.

The guide­lines doc­tors were ref­er­enc­ing in Jay Lawrence’s case were put out by the CDC in 2016 to curb un­in­ten­tional over­doses and rec­om­mend pre­scribers limit opi­oid doses to a max of 90 mil­ligram mor­phine equiv­a­lents, equal to two 30 mg Oxy­codone pills per day.

That’s not a small dose, said Wes­ley Fore­man, a pain doc­tor in Austin. But for many who have been on the drugs for years and built up a tol­er­ance to the med­i­ca­tion, it doesn’t feel like much.

“Peo­ple could be very func­tional at 100 mg of mor­phine,” Fore­man said.

The guide­lines are merely rec­om­men­da­tions — they aren’t man­dated by law — but many pre­scribers have cho­sen to adopt them. These and other reg­u­la­tions have led to a wide­spread cut in the amount of opi­oid drugs be­ing pre­scribed.

In Travis County, the num­ber of opi­oid pre­scrip­tions has dropped 27 per­cent in a span of 10 years, from 69.8 pre­scrip­tions per 100 peo­ple in 2006 to 51.2 pre­scrip­tions per 100 peo­ple in 2016, CDC data shows.

This ac­counts for peo­ple who have mul­ti­ple opi­oid pre­scrip­tions, said Dr. Philip Huang, the city of Austin’s med­i­cal di­rec­tor and health au­thor­ity.

How­ever, cut­ting pre­scrip­tions hasn’t trans­lated to a drop in fa­tal opi­oid over­doses. While the opi­oid pre­scrib­ing rate in Travis County hit an all­time low in 2016, fa­tal opi­oid over­doses that year were at an all-time high, the data shows.

Pain pa­tients point to these num­bers to show why doc­tors and phar­ma­cists shouldn’t be the ones tar­geted in the opi­oid cri­sis — in­stead the fo­cus should be on il­le­gal street drugs, namely fen­tanyl, a po­tent opi­oid about 50 times stronger than heroin that’s smug­gled into the U.S. from China. That drug has con­trib­uted to an in­creas­ing num­ber of fa­tal over­doses na­tion­wide.

The lat­est CDC num­bers show the sharpest rise in over­dose deaths in 2017 were from syn­thetic opi­oids like fen­tanyl.

“The tox­i­c­ity death we are see­ing from your stan­dard pain pa­tients are not frankly on the rise,” Ti­rado said.

Death cer­tifi­cates in Texas of­ten don’t in­clude drug tox­i­c­ity in­for­ma­tion, so it’s hard to gauge ex­actly how peo­ple are dy­ing. If opi­oids are listed as a con­tribut­ing fac­tor, the in­for­ma­tion isn’t teased out to show what kind — whether it was heroin, fen­tanyl or pre­scrip­tion drugs, and if it was pre­scrip­tion drugs, whether they were legally pre­scribed or il­le­gally man­u­fac­tured, like many pain pills are to­day.

As opi­oid over­doses in Texas con­tinue to rise, state law­mak­ers have be­gun to look at the cri­sis and sub­stance use in gen­eral as they craft new bills for the leg­isla­tive ses­sion that starts in Jan­uary. At a public hear­ing in Austin in Au­gust, many pain pa­tients told leg­is­la­tors they are con­cerned about pos­si­ble man­dates that would force doc­tors to cut their opi­oid doses, like laws al­ready passed in Cal­i­for­nia and Maine.

‘No one wants to be the out­lier’

Kristin, who did not want to use her last name out of fear of re­tal­i­a­tion, has suf­fered for 20 years from a rare, in­cur­able con­di­tion called in­ter­sti­tial cys­ti­tis/blad­der pain syn­drome, or IC/BPS. She said the pain feels like knives are cut­ting into her blad­der. The opi­oid med­i­ca­tion she takes has al­lowed her to work, marry and raise a fam­ily.

Any ac­tion leg­is­la­tors take could change all that, she said.

“The law you write will ba­si­cally de­cide if I can keep my life or if I have to spend the next 40 years ba­si­cally dis­abled in a bath­room,” she tes­ti­fied to a House se­lect com­mit­tee Aug. 8. “So I am ask­ing, when you write new law, re­mem­ber the lives lost to the drug trade, and please also re­mem­ber me.”

Texas law­mak­ers have said they have no plans to reg­u­late how much opi­oid med­i­ca­tion chronic pain pa­tients can take.

“The fo­cus of our work has been on try­ing to un­der­stand the is­sue and the re­lated is­sues that sur­round ad­dic­tion and bad pre­scrib­ing prac­tices, bad doc­tor prac­tices and bad pa­tient prac­tices, be­cause they are out there,” Rep. Four Price, R-Amar­illo, chair of the House opi­oid com­mit­tee, said at the hear­ing. “It seems like not a day goes by that some­body doesn’t say, ‘Don’t take away our med­i­ca­tion.’ That’s re­ally not the fo­cus of this com­mit­tee.”

But Med­i­caid pa­tients in Texas are al­ready be­ing hit by the CDC guide­lines. By Jan­uary, any­one re­ceiv­ing the govern­ment health care as­sis­tance won’t be able to get more than the 90 mil­ligram mor­phine equiv­a­lent rec­om­mended af­ter the Texas Health and Hu­man Ser­vices Com­mis­sion lim­ited in­sur­ance re­im­burse­ments to any­thing within that amount.

Medi­care is fol­low­ing suit, as well as pri­vate in­sur­ance com­pa­nies like Unit­edHealth­care and Aetna, which re­quire prior au­tho­riza­tion for higher doses.

Pain doc­tors say, re­gard­less of man­dates, they feel pres­sured into com­ply­ing with CDC guide­lines, fear­ing mal­prac­tice law­suits and pun­ish­ment from the Drug En­force­ment Ad­min­is­tra­tion. Many are leav­ing their prac­tices or won’t take new pa­tients. Sev­eral have got­ten let­ters from in­sur­ance com­pa­nies warn­ing them of ex­ces­sive pre­scrib­ing.

“No one wants to be the out­lier, so to say,” Fore­man said. “No one wants to be writ­ing a lot of med­i­ca­tion when this be­comes a sweep.”

Fore­man said this has led to a cookie-cut­ter, one­size-fits-all ap­proach to treat­ing pain that ad­heres to dosage lim­its that aren’t ef­fec­tive for ev­ery­one. “Care should be in­di­vid­u­al­ized to pa­tients,” he said. “We do a dis­ser­vice if (this) is how we are treat­ing them: ‘Ev­ery­one gets two of these, one of these and ther­apy.’ ”

Doc­tors say they rarely rely on pain med­i­ca­tion as a first op­tion and agree with the CDC that opi­oids are not the most ef­fec­tive way to treat chronic pain. They pre­fer a more mul­ti­modal ap­proach, which em­ploys ex­er­cise like yoga and al­ter­na­tive treat­ments like acupunc­ture, as well as non-opi­oid med­i­ca­tions like Gabapentin and Lyrica, which are used to treat nerve pain.

“There are tons of other treat­ment op­tions ... but we are sig­nif­i­cantly lim­ited in that sim­ply by what the op­tions of what in­sur­ance can pay for,” Fore­man said. “It is much eas­ier to get opi­ates cov­ered.”

In­sur­ance com­pa­nies don’t al­ways pay for al­ter­na­tive treat­ments and of­ten charge higher co­pays for non-opi­oid med­i­ca­tions. Some in­sur­ers re­quire pa­tients to try cheaper drugs first be­fore they will pay for the more costly op­tions. Unit­edHealth­care lists the opi­oid med­i­ca­tion mor­phine as a Tier 1 drug, mean­ing it is among the cheap­est and eas­i­est to ob­tain. The non-opi­oid Lyrica and Sub­ox­one, a med­i­ca­tion used to treat opi­oid ad­dic­tion, are Tier 4, the most ex­pen­sive.

“They want to take away ev­ery­thing, but they don’t want to pay for the things that would help you,” said Sandi Daniels, who suf­fers from de­gen­er­a­tive disc prob­lems and rheuma­toid arthri­tis. “It’s rip­ping it out from un­der you. No one is of­fer­ing any help. In­sur­ance doesn’t want to pay for it.”

But Dr. Dan Knecht, vice pres­i­dent of clin­i­cal strat­egy for Aetna, said a lot of non-opi­oid op­tions are avail­able and mem­bers and doc­tors sim­ply don’t know it. Aetna’s ef­fort to crack down on the opi­oid epi­demic in­cludes a goal to in­crease ac­cess for pain pa­tients to non-opi­oid al­ter­na­tives by 50 per­cent by 2022.

“The epi­demic is like a bal­loon, if you squeeze only one part of the bal­loon, it re­shapes,” Knecht said. “We need to have a real com­pre­hen­sive strat­egy that ad­dresses all pieces of the epi­demic, in­clud­ing those strug­gling with chronic pain.”

An­other way

Gib­son re­cently started tak­ing kratom, a sub­stance de­rived from an ev­er­green plant na­tive to South­east Asia, to treat her pain. It’s bet­ter than noth­ing, she said, and af­ter years of un­der­go­ing costly surg­eries, she’s at the end of her rope.

“I have done count­less in­jec­tions, to the point where I feel more dam­aged,” she said.

Dr. Daniel Crowe said physi­cians for a long time re­lied on steroid in­jec­tions or surgery to treat is­sues like low back pain, the No. 1 cause of chronic pain in the United States, with­out get­ting to the root of the prob­lem.

“Un­for­tu­nately, all the clin­i­cal ev­i­dence doesn’t re­ally sup­port that as a long-term ben­e­fi­cial ap­proach to man­ag­ing chronic pain,” he said. “Peo­ple get into these kinds of traps where they keep go­ing in for pro­ce­dure af­ter pro­ce­dure, and they don’t show im­prove­ment.”

Crowe ad­vo­cates for treat­ing the whole per­son, in­clud­ing un­der­ly­ing pain fac­tors like stress and psy­cho­log­i­cal trauma. He also be­lieves in a shared sav­ings model for health care, which re­wards pa­tients who show suc­cess­ful out­comes, rather than sim­ply pay­ing for tem­po­rary in­ter­ven­tions.

“We are start­ing to see the tides turn­ing,” Crowe said. “The opi­oid cri­sis is re­ally fo­cus­ing down on it. Un­for­tu­nately, we see these un­in­tended con­se­quences. When your pri­mary care doc­tor says, ‘I am not go­ing to pre­scribe opi­oids for you any­more,’ that’s go­ing to turn into a night­mare.”

Ju­lia Heath said when she was taken off all her painkillers, her hus­band had to push her through the hos­pi­tal in a wheel­chair be­cause she couldn’t walk. On a nor­mal day with opi­oids, she still feels a con­stant burning un­der her skin and wide­spread body aches, which her doc­tors di­ag­nosed 20 years ago as fi­bromyal­gia.

She had taken a painkiller once that re­lieved nearly all her symp­toms. It was so ef­fec­tive she stopped tak­ing ev­ery­thing else. But the in­sur­ance com­pany stopped cov­er­ing it years ago, and since then her doc­tors have re­duced her other opi­oid pre­scrip­tions.

Heath said she is luck­ier than most. Her in­sur­ance com­pany will still pay for more than the CDC guide­lines dic­tate.

“For now, I am safe,” she said. “I am go­ing to con­tinue do­ing what I have al­ways done, in­ves­ti­gate other treat­ments, other sup­ple­ments, what other peo­ple have done, and try it my­self. That’s what I had done this whole time, and that’s what I will con­tinue to do . ... I can’t sit here and live in fear of the fu­ture, it doesn’t do me any good. ... One day the pen­du­lum will swing the other way. This will pass, and there will be a lot of col­lat­eral dam­age from it.”

Pain pa­tients have told the Amer­i­can-States­man they want the CDC to re­peal the 2016 guide­lines, or at least is­sue a state­ment ex­empt­ing peo­ple with chronic con­di­tions. They say they want doc­tors to con­trol their care, not law­mak­ers. And they want peo­ple to know that not ev­ery­one who takes opi­oids is an ad­dict, though they have sym­pa­thy for those who are.

More than any­thing, they want com­pas­sion, for their lives as well as those lost to the opi­oid cri­sis.

“Each per­son here is one ill­ness, one ac­ci­dent or one surgery away from be­ing in our shoes,” Heath said. “How would you want your se­vere pain to be treated?”

LYNDA M. GON­ZA­LEZ / AMER­I­CAN-STATES­MAN

Sonya Gib­son, who has chronic pain af­ter two car ac­ci­dents, shows her col­lec­tion of medicines at her home on Aug. 9. Gib­son plans to at­tend the “Don’t Pun­ish the Pain” rally at Austin City Hall on Sept. 18 for a na­tion­wide day of ac­tion rais­ing aware­ness about how new leg­is­la­tion and guide­lines de­signed to tackle the opi­oid cri­sis un­fairly af­fect chronic pain pa­tients.

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