Woman battling rare 'suicide disease' says chronic pain condition is 'excruciating'
In Jan. 2018, Amy Pohl was diagnosed with a rare chronic pain condition known as complex regional pain syndrome (CRPS), which is dubbed the "suicide disease."
As the national focus on the opioid crisis centers on cracking down on overprescribing practices and addressing addicts, Sen. Lamar Alexander, who chairs the upper chamber’s health committee, is putting a spotlight on a critical side of the debate that has been neglected — people who suffer chronic debilitating pain.
The veteran Tennessee Republican lawmaker is holding hearings — one was in February, and another may take place this summer — to hear from sufferers of debilitating pain, who in the last two years have reported being forcibly tapered down or outright abandoned by doctors who had been treating them.
AS DOCTORS TAPER OR END OPIOID PRESCRIPTIONS, MANY PATIENTS DRIVEN TO SUICIDE
The senator said he is determined to expand the focus on opioids at the same time other federal and state officials have begun to acknowledge that many doctors are taking drastic and medically dangerous steps out of fear of being targeted by authorities in the current anti-opioid climate.
The result is what public health experts are calling a "pain crisis," with numerous patients across the country being undertreated for intense pain that has driven many to consider or carry out suicide, and others to turn to heroin.
“As we address the opioid crisis, we must keep in mind the millions of Americans who are in chronic pain," Alexander said in an email to Fox News.
Alexander said that the next hearing before the Senate Health, Education, Labor and Pensions Committee will take up a federal task force's just-released recommendations on how to balance the needs of pain patients against policies tightening opioid prescription practices. The task force is an advisory committee of the Department of Health and Human Services that was authorized by the Comprehensive Addiction and Recovery Act (CARA), which was signed into law in July 2016.
"I am grateful for the work of this task force, and I’m reviewing the final report," Alexander said. "Earlier this year, the Senate health committee held a hearing on the causes of pain and how we can improve care for patients with pain. I plan to hold another hearing this year to discuss the recommendations of the task force.”
Chronic pain patients number 50 million, and for at least half of them, prescription opioids are the only – or a crucial part of – treatment that brings enough relief to allow them to get out of bed without suffering. They are medically dependent on, but not addicted to, legal opioids.
But the drug overdose epidemic that has claimed tens of thousands of lives has resulted in a sweeping war on prescription painkillers, even though most of the fatalities or emergency room cases have involved black-market opioids such as illicit fentanyl and heroin.
“The main impetus for the hearing,” Alexander told Fox News in a telephone interview, “was knowing that in a country where you have more than 50 million Americans who have chronic pain, and 20 million who have high-impact chronic pain, when you put in concerted efforts to take away the most effective painkiller for them, you’re going to have trouble.”
LIBERTY VITTERT: THE OPIOID CRISIS IS REAL BUT DON'T PUNISH PATIENTS WITH LIFE-THREATENING PAIN
Alexander said it’s been eye-opening to learn about the unintended consequences of hardline actions to address the overdose epidemic.
“There’s no doubt that the goal was not to end the use of opioids, which are effective painkillers,” Alexander said. “Our goal was to stop abuse of opioids, which was caused by overprescribing by doctors or diversion by people who got their hands on opioids and used them for the wrong purpose.”
At least 33 states have enacted some type of legislation related to prescription limits, according to the National Conference of State Legislators. Many of the policies and regulations put into place have been based on a since-revised 2016 guideline by the Centers for Disease Control and Prevention (CDC) that was meant as a resource, not a mandate for primary care physicians prescribing opioids to patients who were taking them for the first time.
Earlier this month, both the Food and Drug Administration (FDA) and the CDC warned doctors not to abruptly stop prescribing opioid painkillers to patients who are taking them for chronic debilitating pain, generally lasting more than three months.
The FDA is also amending labels on opioids that inform doctors how to taper them.
"We found that there was a good deal of misunderstanding about what the CDC guideline was intended to do," Alexander said. "They're not supposed to be a substitute for an individual doctor's decision about what the appropriate prescription is for a patient. We have this problem when the federal government or a government agency issues guidelines, they suddenly become 'law.' People become afraid. You have insurance companies refusing to reimburse for opioid prescriptions. It's easier just to follow [the guidelines] rather than make your own decision."
In legislation he has co-sponsored to combat the overdose epidemic, Alexander said, “We resisted federal rules on opioid prescription limits...It was the wisest thing we did in the entire legislation. That’s why our hearing [in February] was important and why another hearing, on the HHS task force review and possible revision of the CDC guidelines, [is] in order.”
CLICK HERE FOR VIDEO OF FEBRUARY SENATE HEARING
“Now that we have started to turn the train around and head in a different direction on the use of opioids, everyone – doctors, nurses, insurers, and patients – will need to think about the different ways we should treat and manage pain," he said.
Though they are an accepted tool to treat severe pain from serious injuries, surgery and cancer, opioid medications can be addictive and dangerous even when used under doctors’ orders. Prescriptions have fallen in the U.S. by nearly a quarter since peaking at more than 255 million prescriptions in 2012.
But health care experts and pain patients argue that targeting legal opioids has done nothing to solve the overdose fatality rate, which has continued to rise.
One of the most often-heard complaints by prescribers about why they are undertreating or abandoning pain patients who long have been given opioids for their conditions is that they fear the Drug Enforcement Administration (DEA) coming after them, which has been happening with more frequency when the agency suspects that a doctor may be prescribing beyond what is necessary.
The DEA did not respond to requests for comment, but in past interviews, told Fox News that contrary to the criticism, they are not gunning for doctors or other prescribers.
Alexander said that requesting DEA officials go to the next hearing to respond to the criticism of prescribers and explain how they decide whom to pursue "seems to be in order."
Texas Medical Board President Dr. Sherif Zaafran, who served on the HHS task force, said it would be an important move for Alexander to have DEA officials testify.
"It would be very helpful if the hearing and Congress hold them accountable," Zaafran said. "Doctors know they’re prescribing correctly, but they’re afraid to keep prescribing. They say ‘Yeah, but the DEA comes on my neck.’ It creates a lot of confusion, the DEA puts them in a bind, the DEA is practicing medicine without a license."
"Congress can direct the DEA to work more closely with state regulatory agencies," he said. "There has to be clear direction to make sure patients’ needs are balanced with illicit use of drugs that are out there."
Many pain patients, along with the doctors who treat them and advocacy groups — long frustrated by discussions about prescription opioids that excluded their voices — are starting to feel optimistic that their experience with painkillers as being safe and crucial to their ability to have a quality of life is finally gaining attention.
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"Things are really starting to shift," said Kate Nicholson, a former federal prosecutor who credits her opioid treatment with allowing her to function after years of being bedridden. "There's the work of the HHS task force, the HHS, and other federal agencies saying there's a problem with the CDC guideline."
"Senator Alexander has been a leader on the issue, he's courageous, he's been willing to hear from people with chronic pain," said Nicholson, who has met with the senator's aides about the issue.
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