Patients say they are hurt by rules
Colorado listed new guidelines in 2014 for prescribing opioids.
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.”
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.