New state law leaves patients in pain
It was meant to curb rising overdose deaths. But Washington's new pain-management law makes it so difficult for doctors to treat pain that many have stopped trying, leaving legions of patients without life-enabling medication.
Seattle Times staff reporters
What is methadone?
• Methadone is a synthetic opioid developed by a German company in the 1930s. It is a mainstream painkiller, although many associate it with the treatment of people addicted to heroin and other drugs.
• Methadone can cost less than a dollar a dose and is 12 times cheaper than brand-name OxyContin.
• While pain relief from methadone might last four to eight hours, the drug can linger in the body for days, potentially building to toxic levels.
Part 1: Silent deaths
Part 2: Politics of pain
Part 3: A troubled clinic
Charles Passantino stared at his doctor in disbelief.
A 64-year-old patient with a crippling liver disease, Passantino had received treatment for eight years for chronic pain. He took small doses of oxycodone, a generic painkiller, to free his muscles from stiffness and swelling.
With the pills, he got by. Without them, just walking from bedroom to living room proved unbearable.
Now, with little explanation and no warning, he was being dumped.
In March, Passantino's doctor told him that his Pierce County clinic, part of the Community Health Care network, was no longer treating chronic-pain patients. The doctor wrote one last oxycodone prescription — 25 pills, 5 milligrams each, good for maybe a week — and suggested that Passantino cut the tablets into pieces, to make them last longer.
Good luck finding another doctor, the physician said.
What happened to Passantino is a scene that has played out in medical offices across Washington, thanks to new state rules governing the prescribing of painkillers. Those rules — which, among other things, impose restrictions upon doctors once certain dosage levels are reached — have driven so many health-care providers from the field that many pain patients now struggle to find care.
State officials say Washington's new pain-management law will help reverse a rising tide of overdose deaths.
But the law does nothing to specifically address the risks of methadone — by far, the state's number-one killer among long-acting pain drugs.
What's more, hundreds if not thousands of patients have been denied life-enabling medications, cut off or turned away by doctors leery of the burdens and expense imposed by lawmakers, according to hospital representatives and consumer advocates.
At least 84 clinics and hospitals now refuse new pain patients, and some have booted existing patients, The Times found.
The growing legion of untreated pain patients has become so troublesome that some clinics, like one in Everett, post signs that ward off walk-ins: "We do not treat pain patients."
Across the nation, the annual death toll from prescription painkillers continues to escalate, more than tripling from 1999 to 2008, according to statistics that federal health officials released last month.
Confronted with this epidemic, health officials in other parts of the country have been eying Washington's groundbreaking law with special interest, says Dr. Lynn R. Webster, medical director of a Utah pain-research center and a national expert on preventing abuse of narcotic painkillers.
But Washington's approach, he says, is not a model worth emulating. He told The Times: "If other states follow suit, many patients could suffer needlessly."
Desperate to ration what pills he had left, Passantino quartered his oxycodone tablets into tiny, chalky nuggets, each one good for just a single milligram of relief.
But by April, his supply ran out.
Most days he curled up in bed. Even simple pleasures — watching television or reading a book — became unbearable.
His wife, Jennifer, hunted down a list of 60 physicians and clinics that work with Medicaid patients. With help from a relative she called every provider on the list, pleading for someone to treat her husband. She tallied the answers in a journal. Every answer was no.
They once could have afforded good care and expensive medication. Jennifer earned a six-figure income as an executive for a consumer health company. Charles home-schooled their two daughters.
But in his 40s, Charles was diagnosed with diabetes. By his 50s, he developed end-stage liver disease — the kind associated with non-alcoholics — linked to fatty deposits that cause inflammation and scarring.
Struggles at work pushed Jennifer into unemployment. She later landed two part-time jobs — neither with health insurance — at a local department store and an accounting firm.
Today, they are poor by every state standard. Charles is enrolled in Medicaid to cover his $2,700 to $3,200 monthly prescription costs. To stay in the program, the couple's annual income cannot exceed $35,000.
In May, a month after Charles finished his last pill, Jennifer wrote to Gov. Chris Gregoire. Though not yet in effect, the state's pain-management law was creating a devastating impact, her letter said.
"Please help me get the care my husband needs," she wrote.
Charles had never felt more depressed or hopeless, the letter said, and his condition was "continuing to deteriorate."
Then, after months of closed doors, Charles secured an appointment at Seattle's Swedish Medical System.
But the examination came to an abrupt halt when a nurse practitioner refused to write a prescription for oxycodone. Instead, she suggested methadone, Passantino says.
With Medicaid patients, the state saves money by restricting their access to costlier drugs. Washington designates methadone, which costs less than a dollar a dose, as a preferred painkiller. Oxycodone, three to four times more expensive, isn't on the list.
But Passantino recognized the danger placed before him. He knew methadone could kill him.
Unlike other narcotic pain drugs, or opioids, which dissipate from the body within hours, methadone lingers in the bloodstream for days, potentially building to toxic levels. The drug can paralyze respiratory muscles; victims fall asleep and stop breathing.
Doctors had warned Passantino that his damaged liver couldn't process drugs with such extended duration. That was why the state had allowed him to get oxycodone in the first place.
The nurse practitioner apologized, said there was nothing more to be done, and sent Passantino home with no relief.
Lawmakers argue from experience
When the state Legislature deliberated over the pain-management bill in 2010, the most striking voice of opposition belonged to Sen. Darlene Fairley, D-Lake Forest Park, a paraplegic whose spine had been crushed in the 1970s in an accident with a drunken driver.
"I worry that this legislation gets in the way of longtime patients and their doctors," Fairley warned her fellow lawmakers.
Fairley feared her medication — 5 milligrams of oxycodone daily — would become difficult to obtain. Supporting herself on a crutch, she said, "It worries me because obviously I take pain medications — and I can tell what may happen in later years as the pain gets worse."
But the bill's supporters assured the public that longtime patients — like Fairley, like Charles Passantino — would not be turned away and made to suffer.
Lawmakers heard testimony about patients' growing reliance on narcotic pain drugs, which contributed to addiction and diversion. Other medical experts cited a steep climb in prescription-drug deaths, surpassing the state's annual toll of traffic fatalities.
The law's co-sponsor, Rep. Jim Moeller, D-Vancouver, recounted his experience as a chemical-dependency counselor helping people hooked on prescription drugs.
Sen. Karen Keiser, D-Kent, rallied support with her account of receiving a prescription for vast amounts of OxyContin, a powerful narcotic painkiller, after she slipped and broke a knee.
"I didn't need that much medication," she said of her 2009 accident. "Doctors pass out pain medications almost without thinking. What we're trying to do is put guidelines in place and give doctors pause."
For lawmakers, there was also a financial incentive. The Department of Labor & Industries, which oversees medical compensation for injured workers, predicted the new law would result in fewer prescriptions for opioid medications, saving the state an estimated $13 million a year, according to legislative fiscal notes.
The law passed with minimal opposition, 96-1 in the House and 36-12 in the Senate.
Coupled with new rules passed by medical licensing boards, the law requires practitioners to document patient backgrounds and track behavior; conduct random urine screenings; and — most important of all — consult with a pain specialist if daily doses exceed the equivalent of 120 milligrams of morphine. Cancer and hospice patients are exempt, as are post-surgical patients and those with pain from sudden injury.
The law already applies to all medical providers except for doctors and physician assistants. The two remaining groups will be covered as of next month, although many doctors have already begun reacting to the law.
The requirement to consult a specialist whenever daily doses climb above 120 milligrams has caused the most anxiety among medical providers.
Washington has at least 1.5 million people who struggle with chronic or acute pain, the American Academy of Pain Management estimates. The state has thousands of practitioners with prescribing privileges. But as of last month, the state's sanctioned list of pain specialists numbered just 13.
Moeller told The Times that he's heard from frustrated patients, mostly on Medicaid or Medicare, who have been denied pain medications since the law's passage. Most had been taking doses below the 120-milligram threshold. "We're kind of scratching our heads, thinking, 'Why are they being denied then?' We don't understand," Moeller said.
At the same time, he's heard from medical providers grateful for being able to point to the new rules as a basis for refusing large amounts of painkillers. Moeller said he thinks patients are being turned away not because of the law, but because prescribers have become frustrated with trying to distinguish patients in legitimate pain from addicts or scammers. "I think this is a change in the right direction, not the wrong one," he said of the law.
Moeller called it "unfortunate" that Medicaid covers narcotic painkillers but not such alternative treatments as acupuncture, physical therapy and massage.
Lawmakers plan to hold a work-study session on the state's new pain-management framework in the coming months, hearing from patients and from providers who helped write the rules. "With the rules," Moeller said, "I think you'd have to live under them for a while before you'd know exactly what to change."
Warnings about methadone
While lawmakers embraced anecdotes of patient abuse and provider excess, the state's new rules sidestepped any special measures to account for methadone's complexity and risk.
Dr. Sean Emami of the American Academy of Pain Management urged legislators to consider additional restrictions or public warnings when methadone was prescribed for pain.
"Methadone deserves special attention here," he testified.
At least 2,173 people died in Washington by accidentally overdosing on methadone between 2003 and 2010, a Seattle Times analysis of death certificates shows. Among long-acting painkillers — a group that includes OxyContin, fentanyl and morphine — methadone accounts for less than 10 percent of the drugs prescribed but more than half the deaths, The Times found.
The drug has taken a particularly dramatic toll among the poor, who account for about half of the fatalities. To save money, the state steers Medicaid patients and recipients of workers' compensation to methadone, one of only two long-acting painkillers on the state's list of preferred drugs.
Emami detailed a federal study that found for every 1,000 pain patients given methadone, two died within the first two weeks.
Methadone victims often die within the first days of use — sometimes after just one 5-milligram dose — and at levels far below the new law's 120-milligram threshold, according to autopsy findings by the King County Medical Examiner's Office.
Other physicians submitted research that showed many patients — even family practitioners — were unaware of methadone's unique risks, such as how it lingered in the body for days or its volatility when combined with other common medications.
The state's new rules, passed by licensing boards, give a nod to methadone — but in an odd way that suggests the drug is different without treating it as so. The rules say "long-acting opioids, including methadone, should only be prescribed" by medical providers "familiar with its risk and use." Anyone prescribing long-acting opioids "should" complete at least four continuing-education hours relating to the topic, the rules say.
The rules single out methadone by name but do nothing to demand additional warnings or training when the drug is prescribed. And the rule's language — using "should," not "shall" — turns the rule's elements into a suggestion rather than a requirement. Doctors and other medical providers should pursue continuing education about prescribing long-acting opioids — but they don't have to.
Hopes raised and dashed
Charles Passantino's wife, Jennifer, continued to work the phone, determined to find a way to relieve her husband's pain.
She enlisted the American Pain Foundation, which provided a contact to Dr. Jeff Thompson, who oversees Medicaid prescription programs for the state.
Informed of Passantino's plight, Thompson was stunned and sympathetic, Jennifer says. He became an advocate for the family and reported back with good news: He'd convinced Community Health Care to reinstate Passantino as a pain patient.
"After talking to both parties, I got them hooked back into the system," Thompson told The Times.
Passantino, hopes raised, showed up for an appointment at Community Health — only to have a practitioner refuse to provide oxycodone or any other opioid. The state couldn't order otherwise; Community Health is a private clinic. Once again, Passantino was turned away.
"There was no light in my life, no happiness," Passantino says. He thought of suicide, but his faith sustained him. A plaque over his front door was a talisman: "Jesus is The Head of this House."
Desperation led to one more option: medical marijuana. Without hesitation, a doctor authorized a state-required patient card.
"The irony did not escape us," Jennifer says. "We can't get a legal pain drug anywhere in the state of Washington. But we can have all the pot we want."
'They saw a responsible patient'
Passantino's quest for care became a crusade for Elin Bjorling, who oversees the Washington office of the American Pain Foundation, a nonprofit group that serves as an advocate for patients.
This fall, Bjorling released a survey that found dozens of health clinics have adopted new policies refusing to treat chronic-pain patients.
"This is a crisis that is causing widespread and needless suffering," she says.
In Passantino's case, Bjorling canvassed dozens of doctors and marshaled her organization's forces to alert the Governor's Office and lawmakers to Passantino's situation. In September, she broke through: A University of Washington clinic agreed to examine Passantino.
"They took a look at me and saw a responsible patient who had taken small doses of pain pills — no more than what they give infants — for more than eight years without problems," Passantino says.
The clinic agreed to treat Passantino — and put him back on oxycodone, six months after he'd been cut off.
Once more, with each dose, Passantino is temporarily freed from pain. He enjoys short walks with his wife along their tree-lined neighborhood.
"As happy as I am," Jennifer says, "I know that we had extraordinary help in finding care. We're an exception. Others won't be able to follow in our footsteps.
"There are many other people suffering in pain out there, and there's nobody to help them."
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