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Is Hysteria Over Opioids Getting in the Way of Good Medicine?

Pain patients say they are being neglected because of opioid overdose fears

"I think that for most of my life I have had this problem trapped inside of me. Right now, I am much more aware of it because I just woke up. I am sweating and freezing at the same time. I am being tortured. My whole body hurts. I'm shaking. I feel electricity coursing through me."

They are some of the last words of a young man gone too soon. They are a cry for help from a child, brother and friend who struggled for years with mental illness and chemical dependency.

And when Elaine Werner-Hudson reads the words of her son's diary, she's reminded that her 27-year old son Josh was a victim not only of the opioids that killed him but of a failure to treat what she considers the true cause of what's being labeled an opioid epidemic.

"We're talking about people who are using opioids to get high so they don't have to feel. We're not talking about people that are using it solely for the pain," said Werner-Hudson who is now a drug counselor and founder of a nonprofit opioid education program called Project Josh.

Werner-Hudson says her son suffered from mental health issues and chemical dependency. Through her drug counseling work she believes 85 percent of drug abusers she sees suffer from a dual diagnosis, meaning they have other mental health conditions contributing or even causing their drug use.

"It doesn't matter if it's mental health or the chemical dependency which happens first. The most important thing is that they're both treated," said Werner-Hudson.

And she says that didn't happen in Josh's case. Even after Josh ended up in the hospital following an overdose of opioids, she couldn't get him the care he needed.

"I begged. I begged. I said, please can my son stay, he's going to die? And they said nope," recalls Werner-Hudson.

Now 10 years after his death, Werner-Hudson is concerned with how the opioid epidemic is being fought and discussed. She says it's not the pills per se causing problems but how we are treating those with mental illness and addiction. She wants to see a greater awareness of the underlying cause of opioid abuse, a reduction in the stigma of mental illness, and better access to treatment programs for those who need them.

"The awareness of the opioids is coming out more but then it's creating a problem for the people that really need it for the chronic pain," said Werner-Hudson.

People like Amanda Greene who has Lupus, an autoimmune disease where the body attacks its own tissues and organs, have been suffering with chronic pain for decades.

"On a bad pain day for me, I can't even get out of bed. Every muscle and joint hurts," said Greene.

Greene relies on over-the-counter treatments, holistic remedies, and on occasion, prescription opioid medication for keeping her pain manageable.

"If I'm in so much pain that I need opioids to relive my pain, I need to be able to have access to them," said Greene.

But according to a recent survey by the International Pain Foundation and in interviews NBC conducted with other pain patients, the crackdown on prescription opioids is making it harder, if not impossible, for them to get the pain medications they say they desperately need.

In the 2017 survey, 70 percent of pain patients said they are no longer getting prescription opioids or are getting them at lower doses. More than 84 percent of the respondents said they have more pain and a worse quality of life. And nearly half said it's become harder to find a doctor willing to treat their pain.

"There's a difference between chronic pain patients and addicts, and the stigma of taking opioids is now affecting the chronic pain patient community," said Greene who is also an advocate for chronic pain patients and a member of the International Pain Foundation.

Data appears to support this notion. According to a comprehensive review of medical literature performed by the Cochrane Library, less than 1 percent of chronic pain suffers end up addicted to prescription opioids. Other studies find the rate of opioid addiction under 10 percent for those use them for pain relief.

"Are chronic pain patients being hung out to dry? I would say sometimes, yes," said Dr. Kelly Pfeifer of the California Health Care Foundation. "We've heard terrible stories about patient abandonment and we've heard horrible stories about people in hospice and palliative care who can't get what they need"

Pfeifer says some physicians are doing a good job of finding non-opioid alternatives for their patients' pain relief needs. But in other cases, she's concerned about medical groups cutting off their patients cold-turkey and refusing to write any more opioid prescriptions. She says that's dangerous and can lead pain patients to seek out illegal drugs like heroin or highly addictive synthetic pain killers.

"We shouldn't punish them for having pain or punish them for taking medications that their doctors prescribe. We need to work with them to get them to safer doses so they're no longer at risk of death," Pfeifer said.

But she is optimistic about California's progress on finding a balance between effective pain management and reducing abuse of pain pills.

"California across the board is dropping opioid prescribing," said Pfeifer. "We are definitely headed in the right direction."

According to CDC data, California ranks 41st among states in the number of opioid overdoses. Doctors in the state also write far fewer prescriptions per capita than many other places in the country. And while some states are seeing triple digit increases in drug overdoses, in California it's less than 9 percent over the last 5 years.

"The opioid epidemic is not impacting California to the same degree that it's impacting places like West Virginia, Kentucky, New Hampshire," said Dr. Gary Tsai, FAPA, FASAM, Medical Director & Science Officer for Substance Abuse Prevention and Control at Los Angeles County's Department of Public Health.

Tsai says Los Angeles is in particularly good shape when it comes to reducing and preventing opioid abuse. He says the region has a strong treatment infrastructure and a coalition of health providers and public health agencies called Safe Med LA which is focused on addressing prescription drug abuse. He says the region's diversity also plays an important role in stemming opioid abuse.

"Certain ethnic groups don't reach for pain medications, prescription medications in the same way as other ethnic groups specifically Latino groups and Asian groups," said Tsai.

While overdoses are lower in Southern California and the number opioid prescriptions being written are is dropping, Dr. Tsai does have some concerns. He says emergency room visits and hospitalizations for opioid abuse are on the rise in Los Angeles and he worries that overdoses may eventually follow.

"The concern is that will eventually translate over to deaths," Tsai said.

Still, he joins Pfeifer's optimism about our state's ability to keep opioid abuse in check and in finding a balance between providing pain relief while not over-prescribing the medications. He also believes that we should speak openly about our successes and not just the fear of opioid overdoses.

"The risk of the gloom and doom messaging is that people might start tuning it out," Tsai said.

A snapshot of the opioid problem in the US:

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Prescription Opioids: Hydrocodone's Spotty Decline

Sales of hydrocodone, the opioid in Vicodin, have fallen sharply in much of the Northeast, the upper Midwest and Texas in the past five years – a result, perhaps, of the concerted effort by health care workers and regulators to prevent addiction and overdoses. At the same time, however, sales of the drug have risen in a broad "V" stretching from Michigan to Louisiana back north to the Dakota oil fields. Parts of the West are also seeing a spike in sales.

Prescription Opioids: Oxycodone Rises on the Plains

Retail sales of oxycodone, the opioid in OxyContin and Percocet, rose in the past five years in the Plains and much of the South and Rocky Mountain West while declining elsewhere in the U.S. Public health authorities have tried to discourage use of the drug to prevent fatal overdoses. After rising rapidly for a decade, the death toll for natural and semisynthetic opioids such as oxycodone and hydrocodone has stabilized in the past five years, while deaths from heroin and synthetic opioids such as fentanyl have soared.

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