Studies Promote Epidurals Without Explaining Risks

By Pat Anson, Editor

Two recent studies presented at a meeting of anesthesiologists are promoting the benefits of epidurals to relieve pain during child birth. But a woman whose spinal cord was permanently damaged by an epidural says new mothers need to be told more about the risks involved.

First, about those studies.

A study of over 200 women presented at the annual meeting American Society of Anesthesiologists found that epidurals – in addition to relieving labor pain – also appear to lower the risk of postpartum depression for new mothers.

"Labor pain matters more than just for the birth experience. It may be psychologically harmful for some women and play a significant role in the development of postpartum depression," said Grace Lim, MD, director of obstetric anesthesiology at Magee Women's Hospital of the University of Pittsburgh Medical Center.

"We found that certain women who experience good pain relief from epidural analgesia are less likely to exhibit depressive symptoms in the postpartum period."

The second study found that women who chose nitrous oxide – laughing gas – to manage labor pain get only limited relief. And a majority wind up getting an epidural anyway once the pain starts.

"Nitrous oxide is gaining interest among expectant mothers as an option to manage labor pain and is becoming more widely available in the United States," said Caitlin Sutton, MD, an obstetric anesthesiology fellow at Stanford University School of Medicine. "However, we found that for the majority of patients, nitrous oxide does not prevent them from requesting an epidural. While nitrous oxide may be somewhat helpful, but epidural anesthesia remains the most effective method for managing labor pain."

Epidurals are effective at relieving pain, but how safe are they?

“By far the gas is safest form of pain relief for women during labor, along with other non-invasive methods,” says Dawn Gonzalez, whose spinal cord was accidentally punctured by an epidural needle during childbirth. “Epidural anesthesia is the most popular form of anesthesia during labor, but women are rarely warned about the long term, devastating effects and consequences that some women will encounter.”

The injury to Gonzalez’s spine during the botched epidural led to the development of adhesive arachnoiditis, a chronic inflammation that caused scar tissue to form and adhere to the nerves in her spine. She now suffers from severe chronic pain and is disabled. Gonzalez says the pain she experiences today is far worse than the temporary labor pain she would have experienced without an epidural.

“The blind insertion of the epidural during birth is basically playing roulette for spinal damage. Normally birthing mothers are told the only side effect possible during epidurals is a spinal headache that lasts a few days. True informed consent is missing from the equation,” says Gonzalez.

“I often wish I could go back and decline the epidural because arachnoiditis has completely turned my life and that of my family upside down. I had so many dreams for the future with my children, and there is so much I miss out on and will never reach due to being injured during my epidural.”

The American Society of Anesthesiologists (ASA) has long defended the use of epidurals, calling the risk of complications a “myth.” The ASA has called the procedure “one of the most effective, safest and widely used forms of pain management for women in labor.”

A study of over a quarter million epidurals by the Society for Obstetric Anesthesia and Perinatology also found the risk of complications to be low. An “unrecognized spinal catheter” – what Dawn Gonzalez experienced – occurred in about one in 15,435 deliveries.

She thinks there are better and safer alternatives.

“Laughing gas, Lamaze, hypnotism, meditation, water birthing and even some medications are the absolute safest and most effective forms of labor pain relief. Every woman deserves to know that when she opts for any kind of invasive spinal anesthesia, the risks are very grave and by far much more common than anybody realizes,” Gonzalez says. “We have a tendency to think it will ‘never happen to me,’ but you do take very serious risks for yourself and your child when opting for an obstetric epidural.”

One hundred years ago, laughing gas was widely used in hospitals to relieve pain during childbirth, but it fell out of favor as more Caesarean sections were performed and women needed more pain relief.  Nitrous oxide helps reduce anxiety and makes patients less aware of pain, but it does not eliminate it. 

In the laughing gas study of nearly 4,700 women who gave birth vaginally at a U.S. obstetric center, only 148 patients chose to use nitrous oxide. Nearly two out of three wound up getting an epidural once labor began.

DEA Bans Opioid Found in Fake Painkillers

By Pat Anson, Editor

The U.S. Drug Enforcement Agency is banning a powerful synthetic opioid linked to dozens of fatal overdoses -- including the death of the late pop star Prince.

Effective Monday, the DEA is classifying U-47700 as a Schedule I controlled substance, making the sale and possession of the drug a felony. Known in law enforcement circles as “pink,” U-47700 is about 8 times stronger than morphine. It was originally developed in the 1970’s as a prescription pain reliever, but was never used for that purpose.  

U-47700 is now being manufactured by illicit drug labs in China and smuggled into the United States, according to the DEA.

“Evidence suggests that the pattern of abuse of U-47700 parallels that of heroin, prescription opioid analgesics, and other novel opioids. Seizures of U-47700 have been encountered in powder form and in counterfeit tablets that mimic pharmaceutical opioids,” the DEA said in a notice published in the Federal Register.

“Abusers of U-47700 may not know the origin, identity, or purity of this substance, thus posing significant adverse health risks when compared to abuse of pharmaceutical preparations of opioid analgesics, such as morphine and oxycodone.”

The DEA said at least 46 overdose deaths have been linked to U-47700 since 2015, including 31 in New York and 10 in North Carolina.

The actual number of deaths is probably higher, according to NMS Labs, a private forensic laboratory in Pennsylvania. The lab said it confirmed U-47700 in toxicology tests involving over 80 deaths nationwide in the first nine months of 2016.

“The recent rise in use of these novel drugs of abuse is contributing to the spiraling of deaths associated with opioid abuse, and is being seen across the country. Their incidence of use is probably underestimated since these drugs are frequently a blind spot for many forensic labs, because they are novel and the labs are not looking for them in their routine procedures,” Dr. Barry Logan, Chief of Forensic Toxicology at NMS Labs said in a statement.

U-47700 and fentanyl, another synthetic opioid, were part of a deadly cocktail of drugs found in toxicology tests on Prince, who died of an accidental drug overdose in April. Investigators believe the musician may have thought he was taking a legitimate painkiller.

Fentanyl and U-47700 have also been linked to an outbreak of deaths and hospitalizations in California involving counterfeit pain medication. A 41-year old woman who suffers from chronic back pain purchased pills on the street designed to look like Norco, the brand name of a prescription drug that contains hydrocodone.  

The woman became unconscious within 30 minutes of taking three of the counterfeit tablets. She next remembers waking up in a hospital emergency room and told hospital staff the pills had the markings of Norco, but were beige in color instead of the usual white. A blood serum analysis revealed the woman had significant amounts of fentanyl and U-47700 in her system.

Fentanyl is legally prescribed in patches and lozenges to treat severe chronic pain, but the DEA believes “hundreds of thousands of counterfeit prescription drugs” laced with illicit fentanyl are on the black market. The agency predicts more fake pills will be manufactured because of heavy demand and the “enormous profit potential” of counterfeit medication.

This temporary scheduling of U-47700 as a controlled substance will last for 24 months, with a possible 12-month extension if the DEA needs more data to determine whether it should be permanently banned.

Pain Patients Say Insurers Interfering with Treatment

By Pat Anson, Editor

It’s no secret that health insurance companies have been raising deductibles and co-pays, and generally making it harder for chronic pain patients to get treatment – whether it’s opioid pain medication or alternative therapy like massage or acupuncture.

But recent actions by some insurers have healthcare providers and patients saying the insurance industry has gone too far in its effort to reduce opioid abuse and is interfering with the doctor-patient relationship.

“My own insurance company just acted as a physician to remove the meds that I need by blackmailing a kind-hearted pain doctor,” says Jennifer Nelson, who has suffered from Reflex Sympathetic Dystrophy (RSD) in her left foot for nearly two decades.

The “blackmail” Nelson refers to is a form letter her pain management doctor received from Blue Cross/Blue Shield of Michigan warning that opioids, benzodiazepines and a muscle relaxant named Soma (carisoprodol) should not be prescribed together. Benzodiazepines such as Valium act as sedatives and are known to increase the risk of overdose when taken with opioids.

But Nelson says she’s used them safely for years to reduce pain, muscle spasms and to help her sleep.   

“Their threat is to pull their coverage from his office if even one patient tests positive for both opioids and benzodiazepines. So now my health insurance has become Big Brother?” said Nelson in an email to Pain News Network. She also included a copy of the form letter sent to her physician.

JENNIFER NELSON

“There is no legitimate medical indication for this combination of controlled substances,” the letter from Blue Cross/Blue Shield (BCBS) says. “If the diagnosis is opioid abuse or dependence, the continued use of sedatives is contradicted and the continued use of opioid analgesics is against DEA regulations. If the diagnosis is legitimately chronic pain, benzodiazepines are still contradicted as they lead to a downward spiral of pain control and function.”   

The only downward spiral Nelson feels is from having her Valium tapered.

“The muscle spasms came back with a vengeance,” she says. “The second night I woke up and I thought someone was pulling my leg off.”

 “I am very concerned that an insurance company states there is ‘no legitimate medical indication’ for the combination of opioids, benzo's and Soma,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine.

“No (insurance) payer nor the DEA should be making this type of dogmatic statement.  Such a statement will be used by the DEA to prosecute any provider who prescribes this combination.  It is inappropriate for either a payer or the DEA to determine what a legitimate medical indication is for any single or combination of drugs prescribed.”  

Webster agrees that combining benzodiazepines with opioids is risky, but says Blue Cross/Blue Shield went too far.

“What is most lacking from the letter is an alternative.  BCBS has a responsibility to offer alternatives to the providers on how to treat anxiety in people who also have pain and or opioid addiction and anxiety,” Webster wrote in an email to PNN.

“I agree the combination of opioids and benzos and other CNS depressants should be avoided, but if the payer wants to practice medicine then they should make it clear that they will pay for cognitive therapy and other alternatives as long as it is needed or pay for other medications that are not as risky as benzos. It is unacceptable to just abandon people with pain, anxiety and/or addiction.”

Aetna “Super Prescribers” Warned  

The insurance company Aetna sent a similar letter to nearly 1,000 physicians in August, warning them about their opioid prescribing habits. The doctors were identified as “super prescribers” by Aetna after a review of insurance claims.

"You have been identified as falling within the top 1 percent of opioid prescribers within your specialty," the letter states.

Aetna’s chief medical officer told The Washington Post the letter was not meant as a threat, but merely a note of caution.

"We're asking you to look at your practice...and identify if the way you're prescribing narcotics is best practice," said Harold Paz, MD. "And if it's not, here's an opportunity to improve."

Kaiser Permanente – an HMO -- is also urging doctors in its network to reduce opioid dosages to those recommended by the Centers for Disease Control and Prevention. The CDC’s guidelines say prescribers “should avoid increasing dosage” over 90 mg of morphine equivalent units a day.

“That dose does nothing for me,” says Scott Michaels, who at age 55 is permanently disabled by severe back pain, arthritis and other chronic illnesses.

Michaels has a genetic condition that causes him to metabolize opioids quickly. For seven years, he’s been taking a daily opioid dose of 330 mg of morphine equivalent units – nearly four times what CDC and Kaiser Permanente recommend as a ceiling.

“I have a terrible metabolism so the medication goes right through me, hence the high dose. As of last month, Kaiser is reducing me 10% a month until I’m at 90 mg. I have no choice they said. The pain is already coming back and they don’t care,” said Michaels, who asked that we not use his real name.

“Kaiser is an insurance company and provider. To me that is a conflict of interest. I just don’t know what to do. It can’t be legal to withhold medication that has proven for me to work.”

Jennifer Nelson was also on a high dose of opioids that is now being reduced by her doctor to reach the levels recommended by the CDC. She says her health has deteriorated significantly and she’s worried about become bedridden.

“I lived a very high functioning life. My biggest fear is my seven year old not having a Mom to walk him to the bus stop," Nelson says. “Nineteen years and I've never overdosed or used my meds incorrectly. I submit to random urine tests and pill counts, and educated myself on my meds. So what do we do? Can insurance companies legally threaten doctors like that? And why are they quoting CDC guidelines when doing so? I'm infuriated. Exhausted, unable to sleep, gritting my teeth in pain, but infuriated.”

Insurers say their efforts to wean patients off high doses of opioids are producing results. Blue Cross/Blue Shield of California says its Narcotic Safety Initiative has resulted in an 11% reduction in members using the very highest doses and “prevented” 25% of all new opioid users from using the drugs for more than 90 days.  

Will these new policies also reduce the number of people dying from opioid overdoses?

Blue Cross/Blue Shield of Massachusetts – one of the first insurers to adopt tougher prescribing policies – says it has reduced the dispensing of opioids to its members by 15 percent since 2012.    But the new policies failed to slow the growing number of opioid overdose deaths in Massachusetts, which more than doubled.

Marijuana Legalized in Several More States

By Ellen Lenox Smith, Columnist

As we ponder the results of the presidential election, let’s not forget to celebrate the success throughout the country in increasing the number of states allowing access to medical and recreational marijuana.

Congratulations to voters in Florida, North Dakota and Arkansas for approving medical marijuana and providing a choice for patients to turn to. Also, Montana succeeded in expanding its medical marijuana program to include post-traumatic stress as a qualifying medical condition, along with raising the limit on the number of patients a doctor can certify from 3 to 25.

We are so happy for patients in these states! It will take time for them to get their programs up and running. Patience will be needed, but at least they are now on the right road. It will involve years of tweaking the program as patients learn to navigate the system.

Voters in California, Nevada, Massachusetts and Maine also approved the legalization of marijuana for recreational use. A recreational ballot proposal in Arizona was defeated.

It is very important that we keep and improve the integrity of medical marijuana programs as states expand into recreational use. This will become a big money maker for states and I assume the movement will grow fairly quickly as more states realize they can make billions of dollars in tax revenue.

I have always felt that recreational use was not our battle, preferring instead to focus on patients having access to medical marijuana. I appreciate that some want marijuana for use socially, but there are many of us struggling to live life with more dignity, which the use of medical marijuana provides for us. All citizens in the United States deserve the same rights and we are now over halfway there.

Our dream is for all people in this country to have medical marijuana as a choice. All deserve proper education on its use, a variety of strains to accommodate their various needs, patients and caregivers should be allowed to grow their own plants, and marijuana should be available at compassion centers or dispensaries at affordable prices. Also, we look forward to more consistency in qualifying medical conditions, which vary widely from state to state.

If you are in need of advocating in your state to improve your program or to try to get legislation to move forward, feel free to be in touch.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

What Will Trump Election Mean for Pain Care?

By Pat Anson, Editor

The day after one of the biggest political upsets in American history, millions of chronic pain patients are wondering what a Donald Trump administration will mean for them.

President-elect Trump has repeatedly vowed to “immediately repeal and replace Obamacare,” but has not clearly defined what he would replace the Affordable Care Act with. Trump has also supported reductions in the supply of oxycodone, hydrocodone and other Schedule II opioids.

But perhaps the biggest change will be in leadership positions at federal agencies that set health care policies. That happens whenever a new administration takes office, but the changing of the guard this time will almost certainly mean the departure of several politically appointed administrators who played key roles in setting policies that many pain sufferers consider anti-patient.   

Health and Human Services (HHS) Secretary Sylvia Burwell – who presided over key policy decisions such as the CDC’s opioid prescribing guidelines and Medicare’s decision to drop pain questions from patient surveys – will be replaced.

Also likely to depart are CDC director Dr. Thomas Frieden, FDA commissioner Dr. Robert Califf, acting DEA administrator Chuck Rosenberg, and Surgeon General Dr. Vivek Murthy. All have endorsed policies harmful to pain patients.  

Murthy recently sent letters to over 2 million physicians urging them “not to prescribe opioids as a first-line treatment for chronic pain.”

Rosenberg has called medical marijuana "a joke" and recently tried to criminalize kratom as a Schedule I controlled substance, a move the DEA withdrew after widespread opposition from the public and some members of Congress.

In his short time as FDA commissioner, Califf has overruled some of the FDA’s own experts in endorsing the CDC guidelines and has instituted a series of policies at FDA aimed at reducing opioid prescribing.

Frieden’s departure from the CDC will likely lessen the influence of Physicians for Responsible Opioid Prescribing (PROP) at the agency. PROP founder Dr. Andrew Kolodny has a long association with Frieden, having worked for him when Frieden was commissioner of New York City’s Health Department. PROP President Dr. Jane Ballantyne continues to serve as a consultant to CDC, despite complaints that she has a conflict of interest.

The new heads of the CDC and DEA will be appointed by president-elected Trump, while the HHS Secretary, FDA commissioner, and the Surgeon General are nominated by the president and confirmed by the Senate.

According to Politico, one of the front runners to be nominated by Trump as HHS Secretary is Dr. Ben Carson, a former Republican presidential candidate and retired brain surgeon, who Trump has called a “brilliant” physician.

"I hope that he will be very much involved in my administration in the coming years," Trump said at a campaign rally.

Other names being mentioned for HHS Secretary are Florida Gov. Rick Scott, former House Speaker Newt Gingrich, and Rich Bagger, a pharmaceutical executive on leave from Calgene who is the executive director of Trump's transition team.

None of this means that a Trump administration will reverse any of the pain care policies at CDC, FDA and other federal agencies. Like most Republicans, Trump wants to reduce government regulations, not increase them. But as PNN reported last month, the president-elect has already indicated he supports measures to limit the supply of opioids.

“DEA should reduce the amount of Schedule II opioids -- drugs like oxycodone, methadone and fentanyl -- that can be made and sold in the U.S. We have 5 percent of the world’s population, but use 80 percent of the prescription opioids,” Trump said in prepared remarks at a campaign rally in New Hampshire. “I would also restore accountability to our Veterans Administration. Too many of our brave veterans have been prescribed these dangerous and addictive drugs by a VA that should have been paying them better attention.”

Trump wants the FDA to speed up the approval of opioid pain medication with abuse deterrent formulas. And he wants to increase the number of patients that a doctor can treat with addiction treatment drugs like buprenorphine (Suboxone).

"The FDA has been far too slow to approve abuse-deterring drugs. And when the FDA has approved these medications, the rules have been far too restrictive, severely limiting the number of authorized prescribers as well as the number of patients each doctor can treat," he said.

The president-elect has also pledged to stop the flow of fentanyl and other illegal drugs into the country.

“We will close the shipping loopholes that China and others are exploiting to send dangerous drugs across our borders in the hands of our own postal service. These traffickers use loopholes in the Postal Service to mail fentanyl and other drugs to users and dealers in the U.S.” Trump said.

“When I won the New Hampshire primary, I promised the people of New Hampshire that I would stop drugs from pouring into your communities. I am now doubling-down on that promise, and can guarantee you – we will not only stop the drugs from pouring in, but we will help all of those people so seriously addicted get the assistance they need to unchain themselves.”

Trump has personal dealings with addiction, having lost a brother to alcoholism at age 43. Watching the long downward spiral of his older brother Fred led Trump to a life-long aversion to alcohol, drugs and tobacco.

Fentanyl Deaths Rise Again in Massachusetts

By Pat Anson, Editor

Nearly three out of four opioid overdoses in Massachusetts have been linked to fentanyl, far outnumbering the number of deaths associated with prescription pain medication, according to a new report from the Massachusetts Department of Public Health. 

Massachusetts was the first state to begin using blood toxicology tests to look specifically for fentanyl, a powerful synthetic opioid that is more potent and dangerous than heroin. Toxicology tests are far more accurate than the death certificate codes used by the Centers for Disease Control and Prevention to classify opioid-related deaths. 

Over 1,000 confirmed cases of unintentional opioid overdoses were reported in Massachusetts in the first nine months of 2016. During the third quarter (July-September), 74 percent of the deaths where a toxicology screen was available showed a positive result for fentanyl.

Almost all of those deaths are believed to involve illicit fentanyl, not pharmaceutical fentanyl that is prescribed to treat severe pain.

“The data released today are a sobering reminder of why the opioid crisis is so complex and a top public health priority,” said Secretary of Health and Human Services Marylou Sudders. “This is a crisis that touches every corner of our state, and we will continue our urgent focus expanding treatment access.”

Only about 20 percent of the overdose deaths in Massachusetts were associated with prescription opioids such as hydrocodone and oxycodone, a trend that has held fairly steady since 2014, even as the number of opioid prescriptions in the state has declined.

Massachusetts department of public health

 "I think this points to the fact that cutting scripts for legitimate pain patients and blaming doctors for overdose deaths is pointing fingers in the wrong direction and harming a lot of innocent people living with debilitating pain while doing nothing to reduce overdose deaths – a critical goal,” said Cindy Steinberg of the U.S. Pain Foundation, a patient advocacy group. “People living with the disease of chronic pain and those living with the disease of substance use disorder are two different populations of people with little overlap.

“If we are committed to doing all we can to stop overdose deaths then the only way we can do that is to really understand what exactly is causing them. The fact that illicit fentanyl is the cause points to the need for increased law enforcement efforts to interdict the supply coming into Massachusetts.”

According to the Drug Enforcement Administration, chemicals used to make illicit fentanyl are being smuggled in from China and Mexico. Illicit fentanyl is usually mixed with heroin or cocaine, and it is also appearing in counterfeit pain medication sold on the black market. The drug is so potent that a single pill could be fatal.

Rhode Island is also using blood toxicology tests to help determine the true nature of the opioid epidemic. The most recent data from that state shows that about two out of three opioid overdoses are linked to fentanyl.  Since 2012, overdoses from prescription opioids have fallen by about a third in Rhode Island.

“The shifts in prescription and illicit drug overdose deaths also began roughly when more focused efforts were undertaken nationally to reduce the supply of prescription drugs,” the Rhode Island Department of Health said in a statement.

The CDC uses death certificate codes – not toxicology tests -- in its reports on opioid overdoses. The codes do not indicate the cause of death, only the conditions or drugs that may be present at the time of death. Because of limitations in the data, many overdoses involving illicit fentanyl and heroin are being reported by the CDC as prescription opioid deaths.

Does Canada Need ‘Enforceable’ Opioid Guidelines?

By Pat Anson, Editor

Canada should adopt nationwide “enforceable guidelines” to limit the prescribing of opioid pain medication and doctors should be sanctioned if they fail to follow them, according to a new commentary in the Canadian Medical Association Journal.

The head of the Chronic Pain Association of Canada called the proposed guidelines “another sad effort to punish people with pain.”

Like the United States, Canada has been hit by a wave of opioid overdoses – deaths increasingly attributed to heroin and illicit fentanyl, not pain medication. According to one estimate, over 1,000 Canadians have died so far this year from fentanyl overdoses.

But, like its neighbor to the south, Canada has been trying to fix the opioid problem by restricting access to pain medication.

“This crisis is only getting worse, and Canada urgently needs to implement effective measures aiming at and addressing the underlying drivers of the opioid epidemic,” writes lead author Benedikt Fischer, PhD, of the Centre for Addiction and Mental Health at the University of Toronto.

Fischer and his two co-authors specialize in addiction, mental health and epidemiology, not in pain management.

“Evidence of the therapeutic effectiveness of prescription opioids for pain is rather limited. Data show some benefits for treatment of acute pain, but evidence to support using opioids to treat long-term chronic pain is weak and insufficient,” they wrote.

Only in passing do Fischer and his colleagues even mention the rising number of deaths in Canada being blamed on illicit fentanyl – a synthetic opioid 50 to 100 times more potent than morphine.   

They propose several measures similar to the opioid prescribing guidelines released by the U.S. Centers for Disease Control and Prevention:

• Prescribe opioids in “the lowest possible dose and for the shortest possible duration”
• Establish prescription drug monitoring systems across Canada
• Develop a “national surveillance system” for opioid-related overdoses and emergency room visits
• Expand access to opioid addiction treatment

One key difference from the so-called “voluntary” guidelines of the CDC is a recommendation that Canada adopt “enforceable guidelines” that would allow for opioids to be prescribed only as “an exceptional treatment” and only when there is “good scientific evidence” for their use.

The guidelines would be similar to professional medical standards recently adopted in British Columbia and Nova Scotia, which make physicians in those provinces liable for professional, civil or even criminal sanctions if they don’t follow them.

Critics say the guidelines are having a chilling effect on both patients and prescribers.

“Limiting prescriptions of opioids will do absolutely nothing to stop this problem and just the notice of intent has already made the problem for pain sufferers worse,” said Barry Ulmer, executive director of the Chronic Pain Association of Canada.

“They are forcing patients on high doses to come off their medications, stopping family doctors from actually working with patients who have been in their care for years, and even giving names of patients on high doses to the police as potential dealers. One doctor had his practice visited by police with 3 names of patients and took their files for investigation.”

Like the United States, Ulmer says the debate over opioids in Canada is being led by addiction treatment specialists, not by pain management physicians.

As an example, he cites this month’s National Opioid Conference in Ottawa, which is being hosted by Canada’s Minister of Health. The invited keynote speaker is David Juurlink, MD, an academic toxicologist at Sunnybrook Health Sciences Centre in Toronto, who is also a board member of Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group that played an influential role in drafting the CDC guidelines.

“It is not a conference on opioids, but an addiction conference or more probably an effort to restrict opioids or just prohibit them,” said Ulmer. “It is clear what direction they are going in when they invite Juurlink to be the keynote speaker and have not invited some of the preeminent doctors who are experts in the use of opioids. Tantamount to medical malpractice. They don’t want to talk about the illicit problem because that destroys their whole argument.”

Health Canada is currently conducting a review of Canada’s opioid prescribing guidelines, which have not been updated since 2010. The Centre for Addiction and Mental Health in Toronto – Canada’s largest addiction treatment hospital -- released a report today urging Health Canada to pull all high-dose opioid medications off the market, according to The Globe and Mail.

CDC Satire Gets Taken Seriously

By Pat Anson, Editor

Everyone likes to be in on a good joke, but an article recently published online as medical satire is being taken seriously by some pain patients and healthcare professionals.

The article, published by Gomer Blog, claims the Centers for Disease Control and Prevention has released new recommendations urging doctors to ignore patients who have a pain score greater than 4. Pain levels are commonly measured on a scale of 1 to 10.

The Gomer Blog story even has a purported quote from the CDC's director:

“Look, here’s the deal.  When you say your pain is 1, 2, 3, or 4, that’s actually believable to health care providers, so we’ll give you Tylenol, maybe even an NSAID,” explained the Director of the CDC Dr. Thomas Frieden.  “When you start getting into that 5 through 9 territory, it starts getting a little suspicious.  And we all know that pain of 10 or greater than 10 is, well, honestly, just bullsh*t.  So greater than 4?  Ignore.”

That would be funny, except for the fact I can actually see Frieden saying that.

Another quote from the story is from a fictitious doctor:

“In today’s health care climate half of my day is spent arguing with patients about opioids,” said primary care physician Jamela Wilson.  “The other half of my day?  Arguing with patients’ significant others about opioids.”

I could see an actual doctor saying that, too.

Not a word of the Gomer Blog story is true. But in the current Bizarro World of pain care -- where Medicare is afraid to ask patients about their pain treatment, the CDC hires a PR company to improve its image, and the DEA declares kratom an "imminent public health hazard" and then decides maybe its not -- well, some people have trouble sorting fact from fiction. And who can blame them?

“Is this true? I'd love to see you guys write something about this,” asked one PNN reader, who included a link to a nurse’s training center in Florida that republished the Gomer Blog story on its website.  

The FTC Training Center, which says that its mission is “to support the lifelong education of nurses,” never mentions that the Gomer Blog story is meant as satire. The post was made by Florvilus Nessley, a program director at FTC, who offers training and certification for nurses on hepatitis, dementia, the Zika virus, urinary tract infections and therapeutic hypothormia. Interesting curriculum, Florvilus. 

Calls and emails to the FTC Training Center were not immediately returned, as they say.

Gomer Blog describes itself as a “satirical medical news website created by a bunch of wannabe stand up comedians who ended up in healthcare.”

Recent Gomer Blog posts include articles about an infectious disease clinic handing out free chastity belts and hospitals blocking TV coverage of the presidential election to promote healing.

I can see that happening, too.

Zebrafish Could Help Repair Human Spinal Cord Injuries

By Pat Anson, Editor

A freshwater fish popular in many home aquariums might hold the key to repairing damaged spinal cords in humans.

In a study published in the journal Science, Researchers at Duke University say the zebrafish is able to completely heal its spine -- even after it was severed -- because of a protein that helps to rebuild damaged spinal nerves.

"This is one of nature's most remarkable feats of regeneration," said the study's senior investigator Kenneth Poss, a professor of cell biology and director of the Regeneration Next initiative at Duke. "Given the limited number of successful therapies available today for repairing lost tissues, we need to look to animals like zebrafish for new clues about how to stimulate regeneration."

Poss and his colleagues say when the zebrafish's spinal cord is severed, dozens of genes are activated by the injury. Within days, they produce new molecules and proteins to bridge the gap between the severed spine. One of the proteins, called connective tissue growth factor (CTGF), appears to play a key role in regenerating glia nerve cells.

Within 8 weeks, new nerve tissue has filled the gap in the spinal cord and the zebrafish has fully reversed its paralysis.

"The fish go from paralyzed to swimming in the tank. The effect of the protein is striking," said lead author Mayssa Mokalled, a postdoctoral fellow at Duke. “We thought that these glial cells and this gene must be important.”

The zebrafish belongs to the minnow family and is native India, Pakistan and the Himalayan region. It is widely used in scientific research because if it’s regenerative abilities, and was the first vertebra to be cloned. A 2012 study published in The Journal of Neuroscience also documented the fish’s ability to bridge the gap between spinal nerve cells.

Humans and zebrafish share many genes, and the human CTGF protein is nearly 90% similar in its amino acids to the zebrafish’s.

Remarkably, when Duke researchers added the human version of CTGF to the severed spinal cords in zebrafish, it boosted regeneration and the fish began swimming two weeks after the injury.

Healing damaged spinal cords is more complex in mammals, in part because scar tissue forms around the injury. Researchers say CTGF is probably not sufficient on its own for people to regenerate their spinal cords, but further animal studies are needed.

"Mouse experiments could be key," Mokalled says. "When do they express CTGF, and in what cell types?"

The Duke research team also plans to follow up with other proteins that were secreted after injury, which may provide further hints into the zebrafish's ability to regenerate nerve cells.

"I don't think CTGF is the complete answer, but it's a great thing to have in hand to inform new ways to think about the real challenge of trying to improve regeneration," Poss said.

This research was supported by the National Institutes of Health, the Max Planck Society, and Duke University School of Medicine. Duke is seeking patent applications related to the research.

Medicare Pain Questions Being Dropped in 2017

By Pat Anson, Editor

Hospital patients will no longer be asked about the quality of their pain care under new rules released this week by the Centers for Medicare and Medicaid Services (CMS) for 2017.

Medicare uses a funding formula that rewards hospitals that provide good care and are rated highly in patient satisfaction surveys. Critics claimed that three questions in the survey asking patients about the quality of the pain care created a financial incentive for doctors to prescribe opioid pain medication to boost their hospital’s scores.

The three questions being dropped, which don’t even mention opioids, are as follows:

During this hospital stay, did you need medicine for pain?

During this hospital stay, how often was your pain well controlled?

During this hospital stay, how often did the hospital staff do everything they could to help you with your pain?

CMS said it was still developing and field testing alternative pain questions to replace the ones being eliminated.

“Today’s final rule would address physicians’ and other health care providers’ concerns that patient survey questions about pain management in the Hospital Value-Based Purchasing program unduly influence prescribing practices," CMS said in a statement.

"While there is no empirical evidence of such an effect, we are finalizing the removal of the pain management dimension of the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Survey… to eliminate any financial pressure clinicians may feel to overprescribe medications.”

The American Medical Association (AMA), one of the groups that lobbied CMS to drop the pain questions, applauded the move.

"CMS understands that these policies effect how physicians practice medicine and how patients receive treatment," said AMA President Andrew Gurman, MD, in a statement. "By listening to our concerns, CMS made clear that patient care was the top priority. We look forward to continuing to work with CMS to improve patient health and enhance access to affordable quality care."

CMS was under intense political pressure to drop the pain questions. Twenty-six U.S. senators sent a letter to Health and Human Services Secretary Sylvia Mathews Burwell claiming “physicians may feel compelled to prescribe opioid pain relievers in order to improve hospital performance."

Physicians for Responsible Opioid Prescribing (PROP), an anti-opioid activist group,also said the patient survey "fosters dangerous pain control practices."

But a top Medicare official disputed those claims in an article published in JAMA, saying “nothing in the survey suggests that opioids are a preferred way to control pain.”

Pain patients have long complained about the poor quality of their treatment in hospitals. In a survey of over 1,250 patients by Pain News Network and the International Pain Foundation, nine out of ten said patients should be asked about their pain care in hospital satisfaction surveys. Over half rated the quality of their pain treatment in hospitals as poor or very poor, and over 80 percent said hospital staffs are not adequately trained in pain management. 

Scientists Use Light and Sound to Reduce Pain

By Pat Anson, Editor

British researchers have found that pain can be significantly reduced if the brain if “tuned in” to a particular frequency, a discovery that could potentially lead to new visual and sound therapies to treat chronic and acute pain.

"This is very exciting because it provides a potentially new, simple and safe therapy that can now be trialed in patients,” said Professor Anthony Jones, director of the University of Manchester Pain Consortium. “The potential is for this to be another treatment for chronic pain.”

Jones and his colleagues say nerve cells in different parts of the brain communicate with each other using different frequencies.  

Nerves in the front of the brain associated with a placebo analgesic effect are tuned in at 9-12 cycles per second, and apparently use that frequency to influence how other parts of the brain process pain.

To test their theory, researchers had 64 healthy volunteers wear goggles and headphones, and exposed them to different flashing lights and sounds while heat pain was induced with a laser on the back of their arms.

The volunteers who were exposed to an alpha frequency at 9-12 cycles felt significantly less pain than those who were exposed to other light and sound levels.

“This study provides new evidence that visual and auditory entrainment in the alpha range can influence the perception of acute pain independently of arousal and negative emotional influences,” the researchers said. “Overall, visual entrainment produced a larger effect than auditory entrainment in the mid- and lower alpha frequencies. This provides further evidence that external stimulation can modulate pain perception and requires further study to ascertain its relevance to clinical pain states.”

Further studies are needed to test the effectiveness of alpha wave therapy in patients with different pain conditions. Researchers say the simplicity and low cost of the technology should facilitate more clinical studies.

"It is interesting that similar results were obtained with visual and auditory stimulation, which will provide some flexibility when taking this technology into patient studies,” said Dr. Chris Brown, a lecturer in Psychology at The University of Liverpool who was involved in the research. “This might be particularly useful for patients having difficulty sleeping because of recurrent pain at night."

The study, which was self-funded as part of a PhD project, is being published in the European Journal of Pain.

Safety Tips for Living with Ehlers-Danlos Syndrome

By Ellen Lenox Smith, Columnist

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an "up-slip," where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.  

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Low Impact Exercise Reduces Pain in Seniors

By Pat Anson, Editor

Even a modest amount of exercise is effective at easing pain from arthritis, and other muscle and joint conditions in older adults, according to the latest study by the Hospital for Special Surgery (HSS) in New York City.

Since 2011, HHS has offered free, low-impact exercise programs at senior centers in Chinatown, Flushing, and Queens – and tracked the health of those who participated. Researchers presented their latest findings at the annual meeting of the American Public Health Association in Denver.

"Joints will often stiffen if not used, and muscles will weaken if not exercised. Our bodies are meant to move, and inactivity leads to weakness and stiffness, and joints with arthritis often worsen with inactivity," said Theodore Fields, MD, director of the Rheumatology Faculty Practice Plan at HSS.

The exercise program takes place once a week for eight weeks. Participants perform chair and floor mat exercises using stretch bands and other gentle exercises led by certified bilingual instructors.

The program was originally developed for Asian seniors 65 and older, many of whom live in poverty and suffer from arthritis and musculoskeletal conditions.

A survey was distributed to participants before classes began and after they ended to evaluate pain, physical function, stiffness, fatigue, balance and other health indicators. A total of 256 adults completed the questionnaires, the vast majority of them elderly women.

HOSPITAL FOR SPECIAL SURGERY IMAGE

"Overall, the program was very well-received," said Minlun (Demi) Wu, an HHS research coordinator. "After completing the classes, statistically significant differences were found in pain intensity, physical function, balance, and confidence about exercising without making symptoms worse."

Eight out of ten participants said they had less pain after participating in the program. Over 90 percent said they had less stiffness, fatigue and their balance improved. There was also significant improvement in their ability to perform daily activities, such as lifting or carrying groceries; climbing stairs; bending, kneeling and stooping; and bathing and getting dressed.

"The study results are consistent with the experience of rheumatologists and with prior studies showing that exercise, even of mild degree, helps with pain," said Dr. Fields. "Getting people up and moving does appear to help with mood, pain and overall functioning."

"Our findings indicate that implementing a bilingual low-impact exercise program can play an important role in pain relief, improved quality of life and improved levels of physical activity in the underserved Chinese community," said Wu, adding that the classes have become so popular there is a waiting list.

According to the CDC, Asian seniors have some of the highest rates of physical inactivity. Chinese Americans are also less likely to seek health care because of cost and language and cultural barriers.

Would This Meal Give You a Migraine?

By Pat Anson, Editor

The dinner on the right looks inviting – but to some people prone to migraines it could leave them with a bad headache.

Many migraine sufferers have learned to avoid or limit their consumption of foods and beverages that can cause a migraine attack. Wine, chocolate, coffee, nuts, and milk are often named as likely triggers, but did you know that some diets can actually help prevent migraines?

The role of diet in the treatment and prevention of migraine is poorly understood and somewhat controversial in the field of headache medicine because few rigorous studies have been performed.

In an effort to bring some clarity to the issue, two professors at the University of Cincinnati College of Medicine performed a comprehensive review of over 180 research studies on the subject of migraine and diet. Their two-part review, "Diet and Headache" is being published online in Headache: The Journal of Head and Face Pain. You can also see it by clicking here and here.

"One of the most important triggers for headache is the withdrawal of caffeine," says Vincent Martin, MD, a professor in the Department of Internal Medicine at the University of Cincinnati (UC) College of Medicine. “Let's say you regularly pound down three or four cups of coffee every morning and you decide to skip your morning routine one day, you will likely have full-fledged caffeine withdrawal headache that day."

Martin and co-author Brinder Vij, MD, an associate professor in the UC Department of Neurology and Rehabilitation Medicine, say there are two different approaches to preventing headaches with diet. The first is an elimination diet that avoids foods and beverages known to trigger headaches. The second approach is to adopt low fat and low carbohydrate diets that may actually help prevent headaches.

"The beauty of these diets is that they not only reduce headaches, but may produce weight loss and prevent heart disease," says Vij.

One of the most promising diets for those with frequent migraine attacks is one that boosts omega-3 fats while reducing omega-6 fatty acids. That means avoiding polyunsaturated vegetable oils (corn, sunflower, safflower, canola and soy) in favor of flaxseed oil. Foods that are rich in omega-3 fats include flaxseed, salmon, halibut, cod and scallops, while foods to avoid would be peanuts and cashews.

Martin and Vij say gluten-free diets are only helpful in lessening headaches if someone suffers from celiac disease, which can be established through a blood test or intestinal biopsy.

Other foods to avoid include anything with monosodium glutamate (MSG), a flavor enhancer used in many processed foods, including frozen or canned foods, soups, snack foods, salad dressing, seasoning salt, ketchup, barbecue sauce, and in some Chinese cooking.

"You eliminate it by eating fewer processed foods," explains Martin. "You eat more natural things such as fresh vegetables, fresh fruits and fresh meats. MSG is most provocative when consumed in liquids such as soups."

About 5 percent migraine suffers are likely to have an attack on days they consume nitrites, a preservative often used in processed meats such as bacon, sausage, ham and lunch meat. The use of both nitrites and MSG has declined, but Martin says checking food labels is a good idea.

Alcohol is another headache trigger for about a third of migraine sufferers, and studies suggest that red wines, especially those with high histamine content, are the worst. Interestingly, one study found that beer was associated with fewer headaches and migraines.

"Persons with headache and migraine have more dietary options than ever. Ultimately a healthy headache diet excludes processed foods, minimizes caffeine and includes a lot of fruits, vegetables, fish and lean meats,” Martin says.

Martin and Vij say identifying dietary triggers is challenging because there are so many different foods and ingredients that migraine sufferers are exposed to. They recommend keeping a food diary to help determine which foods to eliminate.

“It is not reasonable for persons with headache to avoid all know dietary triggers, as individuals may only be susceptible to a small number of foods or beverages,” they wrote. “The triggers could be identified by simple observation if the association is strong or through the use of a food diary if it is less obvious. The ideal would be to use a food diary as part of an app that would then determine statistically if a given food or beverage was associated with headache.”

Migraine affects about three times as many women as men. In addition to headache pain and nausea, migraine can cause vomiting, blurriness or visual disturbances, and sensitivity to light and sound. About half of people living with migraine are undiagnosed.

What Grade Should Your State Get for Pain Care?

By Pat Anson, Editor

Millions of Americans who suffer from chronic pain are having trouble finding doctors, obtaining pain medication, and getting health insurance to cover their treatment. So imagine their surprise when a recent study gave passing grades to all 50 states for their pain care policies and said there was “an overall positive policy environment across the nation.”  

“We saw that report and were disgusted. At a time when chronic pain patients across the country are losing their medications and treatments to manage their pain, giving no state a grade below a 'C' is insulting,” said Amanda Korbe, who suffers from Reflex Sympathetic Dystrophy (RSD) and is a founder of Patients Not Addicts, a patient advocacy group.

“Achieving Balance in State Pain Policy” was released over the summer by the Pain and Policy Studies Group at the University of Wisconsin School of Medicine. The report looked at state laws and regulations in 2015 that governed drugs, prescribing and pain care practices.

“This evaluation is meant to identify relevant language in each state’s legislation or regulatory policies that have the potential to influence appropriate treatment of patients with pain, including controlled medication availability,” the study says.

The study gave 13 states an “A” for the quality of their pain care policies:  Alabama, Georgia, Idaho, Iowa, Kansas, Maine, Michigan, Oregon, Rhode Island, Vermont, Virginia, Washington and Wisconsin.

Thirty-one states were given B’s and the rest got C’s. No state was given a failing grade. A complete list of grades for all 50 states and Washington DC can be seen at the end of this story.

“I know that as an Oregon chronic pain patient, I can say my state does not deserve an 'A' right now. We have too many under treated patients, and too many that can't get care at all. For those of us that can't get proper pain management, these high grades are a slap in the face. It invalidates our experiences and struggles to get proper pain management,” said Korbe.

“Would pain management be in such a sorry state if these ‘grades’ actually meant anything? I personally think they are worthless,” said Janice Reynolds, a retired nurse, pain sufferer and patient advocate in Maine, which received an “A” grade.  

Rather than look at state policies and regulations, Reynolds said the study would be more meaningful if it examined whether opioids were being prescribed appropriately, if patients were having a difficult time finding providers, and if untreated pain was leading to more suicides.

“Every state would get a D or F if this was done,” she said.

Study Looked at Pain Policy, Not Practice

“To really look at this comprehensively, it requires a broader analysis to really get an understanding of things,” admits Aaron Gilson, PhD, the lead researcher for the study, which was funded by the American Cancer Society.

Gilson told Pain News Network the study only looked at state policies and regulations as they exist on paper – not how they were being implemented or even if they were effective.

“There’s not necessarily a 100% correlation between policies and practice. The policies in and of themselves don’t create barriers to pain management that we’ve identified. The grade that each state earned is really based on policies that can improve pain management for patients when put into practice,” he said.  

“Sound policy that's not implemented is only words wasted,” says Anne Fuqua, a pain sufferer and patient advocate, whose home state of Alabama was given an “A” grade.

“I'd give Alabama a 'C' for being better than the worst states like Ohio, Kentucky, Tennessee, Florida, West Virginia, Washington, and Oregon.  On paper the policy is excellent and it deserves the 'A' it gets. It just needs to be implemented.”

The study also didn’t look at insurance reimbursement issues or how doctors are responding to federal policies such as the CDC’s opioid prescribing guidelines, which were not released until this year and are having a chilling effect on both patients and doctors.    

Gilson said the methodology used to prepare the next pain care policy report – which was first released in 2000 – probably needs to be updated.

“That’s the first order of business in terms of continuing to do this, to really understand how policies have changed,” Gilson said. “I think it’s really time to examine the criteria that we use to see to what extent we might be missing policy because we’re not looking at the right thing, because barriers are erected in other ways than when we constructed this type of evaluation 16 years ago.”

Patient Survey Underway

One way to better understand those barriers is to simply ask patients what they are experiencing.

“Legitimate patients report the entire move to reduce (opioid) production and restrict prescribing is having a profoundly negative impact on their treatment protocols. Understanding how they are being impacted is important,” says Terri Lewis, PhD, a patient advocate and researcher.

Lewis is conducting a lengthy and detailed 29-question survey of pain patients to see how they are being impacted by efforts to reduce opioid prescribing. To take her online survey, click here.

Lewis will be able to breakdown the data state-by-state to get a real indication of how pain care policies and practices are being implemented.

“We will get that patient voice into this conversation,” she says. “Reports from patients are important and add value to the public conversation.  Reports will be analyzed and compared to months long data collection to look at trends, the impact of increasing restrictions, the fear of physicians to treat patients in this climate, and the influence of other factors like insurance restrictions and red flagging. This is a complex problem.”

SOURCE: PAIN & POLICY STUDIES GROUP, UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE