The first thing Maggie Buckley does when she wakes up every morning is scan her body to make sure that none of her body parts dislocated in her sleep. “I make sure that everything is in position and that I am not going to pass out or fall over when I stand up,” she said.
Buckley suffers from Ehlers-Danlos Syndrome, a painful connective tissue disorder. Her condition causes fragile skin, fragile organs, and joints that dislocate easily. Buckley can dislocate her shoulder by simply reaching up to take a heavy coat off a coatrack. Because it is a genetic condition, her condition will not get better and it has no cure.
Even with medication, Buckley says her baseline pain on a scale of one to ten is a three or a four. “You can just manage the symptoms,” Buckley says, unassumingly.
Buckley is one of 100 million people suffering from chronic pain in the United States, according to the Institute of Medicine. Charles Kim, a doctor and expert in integrative pain management, says more people live with chronic pain than with heart disease, cancer, diabetes, and other medical conditions combined. “So we are looking at the most common medical condition known to man,” Kim said.
For some, pain management includes the use of opioid painkillers. It is a common option available to doctors because it is readily provided by insurance companies for treating patients suffering from chronic pain.
But it is an option that is facing increased scrutiny from policymakers and the government. Opioids have even become a hot-button topic in the 2016 presidential campaign trail, getting bipartisan attention, for example, from Democratic candidate Hillary Clinton and from Chris Christie, a Republican candidate and New Jersey’s governor. Clinton has proposed a $10 billion policy plan to address the opiate addiction and Christie called for a more humane look at people facing drug addiction, urging treatment not jail time.
But there seem to be unintended consequences to all this attention. While opioid addiction is an important issue to tackle, people from the country’s pain sector are crying foul. They feel policies are being put into place to tackle addiction at the cost of the quality of life of chronic pain patients.
“It is actually, in my opinion, increasing the difficulties of legitimate chronic pain patients from receiving the help they need,” Kim said.
Opioid painkillers—like Hydrocodone, Vicodin, and OxyContin—were created with individuals suffering from chronic pain in mind. “The opioids are a fantastic treatment for pain due to trauma and severe end-of-life pain,” said Anna Lembke, director of the Stanford Addiction Medicine Program in California.
But opioids are being illegally sold and abused by a small segment of the population; an even smaller percentage of whom are chronic pain patients as well.
In 2011, the CDC declared a prescription drug epidemic. A 2014 report by the National Institute on Drug Abuse estimated that 2.1 million people in the United States abused prescription opioid painkillers in 2012. The abuse led to a quadrupling in overdose deaths since 1999. The devastating increase has led to strict regulations and policies across the country, regulating and limiting the number of prescriptions written out for opioids.
Here in New York, Martin Golden, the Brooklyn-based state senator, helped push through a law to curtail that figure. It is called “Internet System for Over-Prescribing Act” or I-Stop. I-Stop electronically monitors prescriptions. Golden said the law has reduced the supply of the pills out on the streets.
But there is backlash. People like Buckley are frustrated. She says managing chronic pain is a separate issue from treating people suffering from addiction. “Addiction is a completely different disease,” she says. “And unfortunately all of the 100 million (chronic pain sufferers) are being lumped together and being told that ‘We are going to reduce the medication that works to your manage pain.’”
Bob Twillman, executive director of the American Academy of Pain Management, said people with chronic pain are reporting increased difficulty getting the medications they need to treat their pain. Twillman said the issue is particularly prominent in Florida.
“In Florida, there was a woman who died within a month with advanced cancer who was not able to get her prescriptions filled. There was a four-year-old boy with a brain tumor who could not get his prescription filled. So it has become a real problem. We are getting those stories from all over the country now,” he said.
Buckley says she has experienced a disruption too. She said the additional steps that she now has to take to fill her prescription sometimes results in a delay receiving her pain pills. Buckley says this is because the government has rescheduled Hydrocodone to a Schedule II drug, and therefore it receives more scrutiny. “So I try to plan ahead and anticipate my needs,” she said. “Because now a doctor has to physically sign a paper and I have to physically bring that in.”
Twillman provides two more explanations for the bottleneck: He said pharmacies are not receiving enough supply of the pills from wholesale distributors. And that there is greater emphasis on urging pharmacists to screen patients’ prescriptions, to be sure the prescriptions are appropriate. “But unfortunately, pharmacists don’t always have all the information they need to make that decision. And they tend to err on the side of not filling that prescription rather than filling that prescription,” Twillman said.
Lembke, who treats patients who suffer from both chronic pain and opioid addiction, said the strict guidelines has created “opioid refugees,” a term coined by pain expert, Dr. Steven Passik.
“Opioid refugee describes this population of people who for years got pain medicine from doctors and now doctors are saying they will not prescribe them anymore. So now they are sort of wandering around from clinic to clinic,” Lembke explained.
Kim referenced the I-Stop law to explain a reason for the creation of opioid refugees. “New York State mandated that all prescribers had to use the I-Stop database when prescribing substances. That was a big direction for prescribers. They are busy enough but now all of a sudden they have to spend more time hunting down websites. That has really taken a lot of physicians back, particularly for those who do not have computer experience. So now what is happening is that you are seeing a lot of doctors telling their patients, ‘You know, I am not going to write for this anymore. I am sorry but you are going to have to find someone else to write this prescription.’”
Kim said the chronic pain patients are left high and dry as they try to find new doctors and that there is a strong correlation between what is going on and the rise of heroin, particularly in the New York Tri-State area because heroin is cheaper and more accessible.
Access to treatment is only one of the unintended consequences to the shift in the public discourse around opioids. Addiction is a highly stigmatized issue that is affecting people suffering from chronic pain. Some discrimination is subtle, Buckley says, while some is direct.
“I was at the emergency room and all I wanted was a bedpan and a nurse refused to come to the room. He said, ‘Oh, I see you are a chronic pain patient and you are here for pain. I do not know what to do with people like you. I do not want to even come in the room. I do not even want to be in the room with you,’” Buckley said.
And recently a neighbor recanted her request to Buckley to babysit her children after finding out about her condition: “She said, ‘Well if you are a person with pain, you probably have drugs in your house. How can I trust you to take care of my children?’ I told her my medications are locked in a safe and currently I am healthy enough and fortunate enough that I haven’t needed to take them in a couple of weeks and she was just like ‘Yeah, uh huh.’ And she still hasn’t spoken to me even though she lives very close by.”
Buckley said people suffering from chronic pain are also targets for crimes like mugging and theft. And with the strict guidelines on smaller quantities, with no refills, people with limited incomes whose prescriptions are stolen have to wait in pain until they are able to renew them.
Doctor Kim calls the impact recent restrictions on opioids have had on chronic pain patients the “800-pound gorilla in the room that nobody wants to talk about.”
“Nobody wants to touch chronic pain because you cannot measure it. There is no blood test. But chronic pain is there. It is such a big problem. Everyone sees it but no one is really addressing it,” he said.
He said stricter regulation on the pills is the wrong answer, and so is the liberal prescription of it.
So what should be done about it? Doctors say a good starting point is more education on pain management and addiction.
“There was a recent study that showed that students in veterinary school obtained five times more training in pain management in veterinary school than students in school to treat human patients,” Kim said.
Lembke added: “You can go back 200 years and see doctors advocating for more addiction education and even today we are still where we were 200 years ago.”
Twillman calls on policymakers to invest in alternate pain treatment options, such as increasing funding and insurance coverage of chiropractic services, massage therapy, physical therapy, yoga, acupuncture, and nutritional services.
According to the National Center for Complementary and Alternative Medicine, Americans spent $34 billion in out-of-pocket expenses to cover the cost of alternative forms chronic pain treatment in 2007.
This multi-faceted approach to the treatment of pain is what Buckley tries to follow everyday. Her day-long treatment plan includes aerobic exercise, meditation, and couple of hours of walking—if she can. She says managing her chronic pain is a full-time job.
But as politicians tout policy change on opioids, they must remember chronic pain patients like Buckley. “Without the pain medication, I can’t do anything. I cannot get up, I cannot care for myself, I literally pass out because the pain is so bad. But with the pain medication, I am able to get up, sit up, talk, interact with people, survive a car ride to the doctor’s and participate in life,” Buckley said.
Twillman said he hopes policymakers recognize that taking away the pills doesn’t take away the pain. “What we have here is two chronic public health problems: prescription drug abuse and chronic pain. And we have to be very careful to find solutions that do not turn that into a zero-sum game where one gets better as the other gets worse. Unfortunately, a lot of the really simplistic policy today pushes us in the direction of that zero-sum game,” he said.