Pa­tients say they are hurt by rules

Colorado listed new guide­lines in 2014 for pre­scrib­ing opioids.

The Denver Post - - FRONT PAGE - By John In­gold

When the first doc­tor told her no, Katie Con­lin grit­ted her teeth against the pain and tried a se­cond physi­cian.

When that one told her no, she called an­other, then an­other — any­one who could pos­si­bly write a pre­scrip­tion for the drugs that would ef­fec­tively man­age a painful tho­racic con­di­tion. For years while on the medicines, she had been able to live a hap­pier life: earn­ing her GED, tak­ing on­line col­lege cour­ses, go­ing on pho­tog­ra­phy out­ings with her fa­ther. She could leave the house. She felt like her­self.

But as her own life blos­somed, the drugs that aided her — opi­oid painkillers — also be­came re­spon­si­ble for the with­er­ing of mil­lions of other lives across the coun­try, an epi­demic of abuse and over­doses that is one of the great­est pub­lic health crises in the coun­try. Colorado an­nounced new guide­lines in 2014 for doc­tors pre­scrib­ing opioids.

The Cen­ters for Dis­ease Con­trol and Preven­tion fol­lowed with its own even more cau­tious guid­ance last spring.

Now, across Colorado and the rest of the na­tion, these poli­cies in­tended to ad­dress opi­oid abuse have un­ex­pect­edly harmed pa­tients who de­pend on the drugs to treat chronic con­di­tions, pain spe­cial­ists and pa­tient ad­vo­cates say. The poli­cies are sup­posed to of­fer guid­ance — help­ful ad­vice to doc­tors to be cau­tious in pre­scrib­ing more than a cer­tain amount of opioids to any one pa­tient.

But Dr. Steven Stanos, the pres­i­dent-elect of the Amer­i­can Acad­emy of Pain Medicine, said doc­tors often in­ter­pret the guide­lines as some­thing more con­crete — strict or­ders not to pre­scribe opioids above the listed lev­els.

“I think the guide­lines were ap­pro­pri­ate,” Stanos said. “The prob­lem is the peo­ple use the guide­lines the wrong way.”

Doc­tors, he said, “mis­in­ter­pret the guide­lines to think that pa­tients should not be on opi­ates at all.”

When Con­lin, who lives in Leadville, went to her reg­u­lar clinic in March, she said she found out that her long­time doc­tor had left and none of the other doc­tors would con­tinue pre­scrib­ing her opioids. They told her she should look into re­hab, she said. Af­ter more than a dozen phone calls, she even­tu­ally found a new doc­tor who would take her — only if she agreed to take her­self grad­u­ally off opioids.

“There is no one,” Con­lin said the new doc­tor told her, “who is go­ing to pre­scribe nar­cotics for chronic pain.”

The guide­lines — at least so far — do not ap­pear to have had much of an im­pact on opi­oid over­dose deaths in Colorado. In 2014, when the state’s guide­lines first came out, the death rate from opioids was 6.1 peo­ple for ev­ery 100,000 res­i­dents. In 2015, the rate was 5.8, ac­cord­ing to a re­port from the Colorado De­part­ment of Pub­lic Health and En­vi­ron­ment.

But Con­lin’s sit­u­a­tion in not unique in Colorado, said Dr. Steve Wright, the vice pres­i­dent of the Colorado Pain So­ci­ety. Some pa­tients whose pain was well con­trolled at higher doses of opioids now are be­ing told they need to ween to lower doses. Some in­sur­ance car­ri­ers have re­fused to pay for high-dose opi­oid pre­scrip­tions, he said.

“There are some in­di­vid­u­als who do not have a life if they are not on opioids,” he said.

Of­fi­cials at the Colorado De­part­ment of Reg­u­la­tory Agen­cies are look­ing at re­vis­ing the guide­lines. The Colorado Con­sor­tium for Pre­scrip­tion Drug Abuse Preven­tion, a group of med­i­cal and drug ex­perts, is also work­ing on ideas to pro­tect pain pa­tients while crack­ing down on opi­oid abuse.

“The goal isn’t to re­strict things,” said Rob Valuck, the con­sor­tium’s di­rec­tor. “The goal is to treat peo­ple’s pain bet­ter.”

But, when Den­ver res­i­dent David Orth­man went search­ing for a new pain­man­age­ment spe­cial­ist af­ter the guide­lines came out in 2014, he soon dis­cov­ered how far Colorado is from achiev­ing that goal.

Orth­man has a form of cys­tic fi­bro­sis that at­tacks his pan­creas — caus­ing un­bear­able pain in his back and stom­ach. At one time, he had been pre­scribed mul­ti­ple patches a day of the pow­er­ful opi­oid fen­tanyl. Any­thing less left him curled up in bed.

“The un­for­tu­nate part of it is there just is not any other way to treat it,” he said.

Orth­man and his wife, Mar­jorie Zim­dars-Orth­man, called 16 dif­fer­ent doc­tors look­ing, un­suc­cess­fully, for some­one who would be will­ing to pre­scribe David longterm opi­oid ther­apy. They fi­nally found one who would pre­scribe a fen­tanyl nose spray. But Orth­man said the guide­lines mean that doc­tor is try­ing to re­duce lev­els of other med­i­ca­tions, and they worry that fur­ther changes in the state guide­lines to make them more re­stric­tive could worsen their sit­u­a­tion.

“Most long-term opi­oid ther­apy pa­tients are not ad­dicts,” Mar­jorie said last month at a pub­lic meet­ing on the guide­lines. “They are peo­ple in chronic pain.”

Con­lin’s pain be­gan when she was 14, af­ter a di­ag­no­sis of tho­racic out­let syn­drome, a con­di­tion that re­quired surgery. Now 33, she has lived in pain for more than half of her life.

As her dosage of opioids has grad­u­ally de­creased, Con­lin said so, too, has the qual­ity of her life. No more on­line classes. No more vis­its to see fam­ily.

In­stead, Con­lin says she spends her days mostly home­bound — the one high­light be­ing the hot baths she takes ev­ery morn­ing. Soon, when she is off opioids en­tirely, they will be her only pain con­trol.

“I don’t have a qual­ity of life right now,” she said. “This is not a life. This is an ex­is­tence. And it’s an ex­is­tence of suf­fer­ing.”

John Leyba, The Den­ver Post

Den­ver res­i­dent David Orth­man – who has a form of cys­tic fi­bro­sis that at­tacks his pan­creas, caus­ing un­bear­able pain in his back and stom­ach – went search­ing for a new pain-man­age­ment spe­cial­ist af­ter guide­lines for opi­oid pre­scrip­tion came out in 2014. He soon dis­cov­ered how far Colorado is from help­ing to treat peo­ple’s pain bet­ter.

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