SOUTHERN INDIANA — Before she and her doctor found the right medication to treat her restless leg syndrome, Kate Caufield had many sleepless nights. Now she worries that increased restrictions on opioids, in response to the national drug-abuse epidemic, might eventually mean she won't have access to it.
The condition runs in her family, Caufield said. Her father had it, she has it, and she can already see signs of it in her son. It's characterized by an intense urge to move one's legs, accompanied with discomfort. It is more common at night, according to the Mayo Clinic.
"To me, it feels like when your legs fall asleep and they're starting to wake back up, it's before they get prickly," Caufield said. "It's numb, but it's almost like someone is tickling you insanely from inside. And the only thing that makes it better is to get up and walk around."
DIAGNOSIS AND TREATMENT
Before she was diagnosed, Caufield was sleeping only a couple hours every night. It was starting to wear on her. One night, in desperation, she walked barefoot out into the snow to try to stop the sensation in her legs.
"I was in tears," she said. "The moment I walked out in the snow, I was like 'I've got to go to the doctor.'"
She and her doctor tried a non-opioid therapy, a medication also used for Parkinson's, but it was imperfect. And in some patients, the dosage has to keep being increased and eventually may stop being effective altogether, Caufield said.
Around the same time, she had a tooth pulled and was prescribed a five-day supply of either hydrocodone or oxycodone — she doesn't recall which — and stumbled upon medication that for the first time, helped quell her restless legs.
"I slept the best I had in probably 15 years," she said.
Taking an active role in her health, Caufield did some research and learned that opioids are sometimes used to treat the affliction. She took this information to her doctor and asked if she would consider prescribing it. For more than two years now, she's been taking half of a low-dose oxycodone, along with another medication, Mirapex, at bedtime. She said she's never had an urge to abuse the drug, and the low dosage lets her sleep.
Actually getting and remaining on the medication was not simple, however. She had to sign a contract with her doctor, agreeing that she will not abuse the drug and that she will notify the office if she receives another opioid prescription from elsewhere. She also submits to urine testing several times a year and when she gets the prescription, must go in person to pick it up at her doctor's office.
At the pharmacy, she has to show her ID when she turns in the prescription and when she picks it up 15 minutes later.
Some of these checkpoints are in place under law; some are things her doctor opts to do as a prescriber.
Caufield said she doesn't mind having to go through these steps, and she's glad that vigilance is used in her doctor's prescribing process, but she doesn't know where it may eventually lead.
"I'm willing to do what it takes," she said. "But at the same time, I think it's important for people to know that there are so many legit reasons for people to take it, and most of the time it does not end up in a dependence or addictive situation.
"My biggest fear is that we decide as a nation that we can't have these and we just get rid of an entire class of medicine. I feel like there could be limitations placed on it that could be very difficult for people with careers and lives and families."
Dr. James Murphy, a pain specialist practicing in New Albany, said Caufield's fears are not uncommon, or unfounded. Increased focus on prescribing, with little consensus across jurisdictions on what doctors should do, are leading to a "chilling effect" in the doctors' offices.
He said he gets calls regularly from patients whose physicians have stopped the practice of prescribing opioids.
"If a doctor gets in trouble for prescribing, [if] they violate a regulation, they could lose their license, they could lose their livelihood, or they could go to jail even," Murphy said. "So rather than risk that, they more and more are deciding to not have [opioid prescribing] as part of what they do."
And the regulations differ from state to state. Laws passed within the past few years dictate that in Indiana, a person should not be prescribed more than a seven-day supply of opioids if it is their first time with the medication. In Kentucky, it's three days. The level of guidance offered to physicians for following the law is not homogenous, either, Murphy said. He employs a book put out by the state of Indiana called "First Do No Harm," which addresses responsible prescribing and the expectations.
He said he can see the restrictions tightening in coming years, either by direct legislation or through more barriers to the drugs. In some cases, prescribers have to do pre-certification for some inexpensive, low-dosage opioids that they didn't have to before. This means extra paperwork, and some are choosing to skip the process altogether.
Murphy said the Centers for Disease Control and Prevention are also on the verge of achieving regulations that say that if someone is on more than what equates to 90 mg. of morphine, it will not be covered by insurance.
"They're not going to say you can't get it, but they're not going to pay for it," he said.
Murphy said he doesn't mind the extra scrutiny on higher doses. He likened it to driving a car — you've got to be more vigilant at a higher speed, he said.
"I just think all of this adds up to make patients nervous, it makes doctors not want to do it," he said. "My hope is that physicians, if they truly believe a patient needs to be on these medications, they do their homework, they think about it, they make a good decision and then they keep doing what they can to keep the patient well."
State Rep. Ed Clere, R-New Albany, said the recent regulations are not meant to prevent patients from accessing care, but to help limit the opioids being prescribed to help reduce addiction.
"I don't think anyone wants to restrict access in such a way that patients cant get what they need," he said. "Unfortunately, the realities of the opioid epidemic have made things harder in many cases for both providers and patients, even in cases in which there's no concern about abuse."
He said that he thinks new laws passed over the last several years have pretty well covered the main issues from the prescribing side, although updates will be needed.
"I'm sure there will always be things that need to be reviewed and possibly tweaked," he said. "But overall, it's a much better system when it comes to helping prevent opioid abuse than it was several years ago."
But now, he said, the focus needs to be on treatment — a big part of fixing the issued that's not being addressed. The biggest missing piece, he said, is funding for adequate treatment, especially residential in-patient facilities.
Its going to take funding, cooperation and initiative at all levels," he said. "If we want to begin to solve the opioid crisis, if we're going to make meaningful progress in addressing the opioid crisis, we're going to have to spend unprecedented dollars on treatment."
Indiana House Bill 1317, a health bill authored by Clere, became law at the end of March. But to pass it, a provision Clere thought was important — the call for a task force comprised of law enforcement, health leaders and law representatives to "study and determine the resources needed for substance use disorder treatment, law enforcement and substance use disorder prevention" — was cut.
Caufield said if she's eventually not able to get this medicine, she'll work on other treatments. But right now, she hopes that doesn't happen without a better alternative. Through talking with others with her condition in Facebook groups, she's learned that the treatments for restless leg syndrome can be varied in their effectiveness and duration they work.
"So when you find something, you stick with it," she said.