Audit Details Misuse of Funds at U.S. Pain Foundation

By Pat Anson, PNN Editor

It’s been over a year since serious “financial irregularities” were uncovered at the U.S. Pain Foundation and former CEO Paul Gileno was forced to resign under pressure. But the Connecticut based non-profit is still dealing with legal and financial fallout from years of nepotism, self-dealing and lax oversight by its management and board of directors under Gileno’s leadership.

A newly released audit of U.S. Pain and its 2018 tax return indicate that Gileno misappropriated over $2,055,000 from the charity from 2016 to 2018. The board did not discover the financial irregularities until April 2018, when it hired an auditor and attorney to investigate.

‘The findings were clear that the former president had engaged in unauthorized transactions involving the misuse of assets of the organization. The Board demanded and received the former CEO’s immediate resignation on May 29, 2018, and shortly thereafter reported the matter to federal authorities,” the audit states. “The criminal investigation is still ongoing into the former president’s activities.”

In addition to the federal investigation, PNN has learned that the Connecticut Attorney General’s office is planning to seek a court order to prohibit Gileno from ever handling charitable funds again.

U.S. Pain is providing few details on how Gileno was able to misappropriate over $2 million from the charity over a three year period. The misused funds were reported to the IRS as “excess benefit transactions,” a broad category that includes unauthorized compensation, reimbursement for Gileno’s personal expenses, and payments to Gileno’s family members for unspecified work.

In addition to the $32,537 that Gileno received in wages for roughly five months of work in 2018, he collected over $166,000 in excess benefits last year. The latter amount includes a $36,000 payment to an unidentified company owned by Gileno. It is not clear what the payment was for.

PAUL GILENO

Gileno’s wife, sister and step-daughter were also on the charity’s payroll, collecting nearly $71,000 in wages in 2018. It is not clear what work they did. Gileno’s sister also received an unspecified amount of severance pay and maternity leave, according to the tax return.

The auditor also reported that U.S. Pain has been unable to recover any money from a $100,000 investment in SMJ Homes, a real estate business owned by Gileno’s brothers. A promissory note from the company was due in February 2019, but has not be repaid.  

Poor Business Decisions

In addition to the questionable payments to Gileno and his family, the audit and tax return show that U.S. Pain entered into a series of poor business decisions.

In 2016, U.S. Pain launched an “unrelated bakery business” that Gileno, a former caterer, established to “further the general mission” of the charity. Nothing in U.S. Pain’s mission statement says anything about a bakery.

The bakery was unprofitable from the start, reporting a net loss of nearly $70,000 in 2017. The board voted to liquidate the business last year at a cost of over $72,000 and recently agreed to pay another $23,900 to settle lease obligations for the bakery. In all, over $165,000 in charitable funds were wasted on the failed enterprise.

After Gileno’s departure, the board agreed to forfeit a non-refundable deposit of $50,000 that Gileno authorized in a failed attempt to purchase PainPathways magazine.

The board also scrapped a $2.5 million prescription co-pay program with Insys Therapeutics, a controversial drug maker whose founder and four former executives were recently convicted of racketeering. U.S. Pain said it would no longer accept funding from Insys, but rather than return leftover funds the board has kept $200,000 from the company in an escrow account.

Dealing with all of these legal and financial issues has been costly. According to its tax return, U.S. Pain paid nearly $514,000 for legal services, accounting and penalties in 2018 — nearly a quarter of its revenue for the year.

Gileno: “I Never Misled Them”

How could the self-dealing and financial irregularities go undetected for so long? Interim CEO and board chair Nicole Hemmenway said in a statement last December that Gileno “repeatedly misled and concealed information from the Board of Directors and staff.”

But Gileno, who has admitted taking money from U.S. Pain for his own personal use, maintains that he kept the board informed. “I never misled them. They were part of U.S. Pain for over 10 years and I talked with them daily. Nicole and I were close like a brother and sister and I never hid one thing,” Gileno told PNN last year. 

Gileno did not respond to a request for comment for this story. Neither did Hemmenway. A spokesperson for U.S. Pain said in an email the tax return and audit “constitutes our public statements on these matters.”

The charity’s 2018 tax return was filed on time, but its 2016 and 2017 returns were delinquent and filed late in 2018. They indicate there was no real oversight of Gileno by the board until last year.

“The former President/CEO controlled the board process. The records maintained under his leadership list the officers and directors… but contain no evidence that election of officers and directors occurred,” the tax returns said.

The audit indicates that U.S Pain “rents its main office from the father in law of an employee” who is not identified. Public records for the city of Middletown, CT indicate the building is owned by Ottavio Monarca, who is the father-in-law of Lori Monarca, U.S. Pain’s Executive Office Manager. Rent of $25,000 was paid for the office in 2018 and the lease continues until 2020.

Hemmenway was paid a salary of $71,750 in 2018. The other two board members, Wendy Foster and Ellen Lenox Smith, a former PNN columnist, did not receive any compensation. Smith’s daughter-in-law, Shaina Smith, was paid a salary of $76,700 in 2018 as Director of State Advocacy for U.S. Pain.

Despite all of these expenses and business losses, U.S. Pain appears to be in fairly good financial shape compared to other charities. It received over $1.8 million in donations and grants in 2018, and ended the year with over $454,000 in cash — an enviable position for most non-profits, which often struggle to raise money.

Major corporate donors to U.S. Pain include Abbvie, Amgen, Lilly, Sanofi, Novartis, Teva, Abbott, Pfizer and other pharmaceutical companies.   

Sen. Ron Wyden (D-OR), the ranking member of the U.S. Senate Finance Committee, sent a letter last December to Hemmenway asking a series of detailed questions about the charity’s relationship with Insys  and other drug makers. According to the senator’s office, Wyden has still not received a full response.  

“A substantial amount of information that Senator Wyden requested from the U.S. Pain Foundation remains outstanding. Staff continues to communicate with the foundation in order to fully understand the financial relationship and contacts it has had with pharmaceutical manufacturers, including Insys, and its compliance with applicable federal laws,” a Wyden spokesman said in a statement to PNN.

Kratom Gave Me Hope

By Dijon Evans, Guest Columnist

I have taken kratom for 2 years now. I was cut off of my pain meds, after 40 years of proper and adhered to treatment.

There was no taper. No discussion. No warning. My pain management doctors just stopped treating all chronic pain patients and, shortly after, all of their terminal cancer patients.

I have full body Complex Regional Pain Syndrome (CRPS), osteomyelitis, osteoporosis, neuropathy, sepsis, and two pulmonary embolisms.  I’ve had 3 amputations and have an artificial hip. My other hip needs replacement, as does my only knee. My spinal vertebrae are either broken, fractured or collapsed.

I've been having my jawbones ground on, drilled into and screwed together, all with no pain medication because of the panic caused by the CDC guideline, DEA enforcement and imprisonment of doctors.

Two years ago, I was leaving my home (after being bedridden for over 10 years) and asked for help getting into my wheelchair. I was on my way out the door to end my own life.

After being abandoned by the medical profession and my government, I lost all hope. I had no quality of life. And I sure as hell wasn't going to be tortured.

That's when I took my first bit of kratom. When my care provider, my boyfriend, showed up later that day, we both cried. He knelt beside me as I was sitting on the couch. Not in bed. Not begging for mercy. But sitting on the couch, smiling.

Yes, I am still terminal. Yes, I have bad days and flare ups. My doctors know I take kratom, follow me and cannot believe that when they see me, for the most part, I am smiling. I push my own wheelchair into my appointments.

DIJON EVANS

I have blood work each month. No, I am not cured. But I now have hope.

My daughter and grandkids are happy to see me, not dreading it. I'm not in the hospital or ER as much. I have a little bit of quality of life -- while I can.

Is this really too much to ask?

I've done my research. I am educated. I'm an intelligent person. A grandma, a daughter, sister, niece, cousin, a mother, a significant person in several lives. I am important. I do matter.

I don't use much kratom, but if I was asked to change the amount and manner and participate in a clinical trial, I would gladly do so in order for the millions who may benefit and have benefited from it.

Dijon Evans lives in California.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

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.

Mindfulness Is More Than Yoga

Barby Ingle, PNN Columnist

For years I’ve used mindfulness meditation techniques to help with my chronic pain. So imagine my surprise last week as I was watching the Pain Management Best Practices Inter-Agency Task Force meeting and a practitioner on the panel said yoga and mindfulness are essentially the same thing.

I’ve never done yoga as part of my mindfulness meditation. But it made me start to wonder. Have I been doing mindfulness wrong for years?

A quick Google search showed me there are more than 25 mindfulness activities. Yoga was one of the items on the list, but not everyone doing yoga is doing it for mindfulness. Most use it for physical exercise.

Another practitioner on the task force said that mindfulness is not a treatment by itself and that it is typically done in conjunction with other modalities. I totally agree. There are many group and individual activities that use mindfulness to reduce stress, anxiety, depression and pain.

Mindfulness is just one form of self-care that I use do to help manage the symptoms of living with chronic conditions. By itself, mindfulness is not enough to sustain me, but in conjunction with other treatments I find it helpful.  

I personally like individual mindfulness activities. Some of the activities are really short and some take up to an hour. Depending on what I need, I choose one that best suites me in the moment. Some of the activities I use for improving my life include virtual reality, self-compassion, reviewing my "I Am" list, meditation, 5 senses exercise, breathing exercises, music therapy and aroma therapy.

If you have trouble practicing mindfulness alone, one of the group activities is known as the FAKE plan, which involves about 8 members meeting for 2 hours every week for 12 weeks. The first portion of each session is devoted to a short mindfulness exercise and discussion, and each week is dedicated to a specific type of mindfulness exercise.

This is great for patients with social anxiety disorder but can also be helpful for others who want to work on their social skills through group mindfulness activities.  

Another mindfulness exercise that I found in my Google search (but have not yet tried) involves staring at a leaf for 5 minutes. A leaf is like a fingerprint or snowflake -- no two are the same. You can focus on the leaf’s colors, shape, texture and patterns. This type of activity brings you into the present and helps align your thoughts.

When I am not able to perform the physical or cognitive tasks I want to because of physical pain, I can get situational depression. For me, this is the best time to use my mindfulness activities. One study identified three ways mindfulness helps when you are depressed:

1.  Mindfulness helps people learn to be present in the moment, take stock of their thoughts and feelings, and choose an appropriate response rather than get caught up in negative emotions.

2.  Mindfulness teaches people that it’s okay to say “no” to others, which helps them balance their own lives and enhance self-confidence.

3.  Mindfulness allows people to be present with others, making them more attentive to their relationships, aware of their communication problems and more effective in relating to others.

These are important tools that can help chronic pain patients better manage their lives. Mindfulness activities help clear your mind of worry about the past or future and allow you to focus on the present.

Whether you are using mindfulness for anger, depression, chronic pain, anxiety or just for overall mental health -- it is important to keep an open mind. I know that is easier said than done when you are in severe pain. But the more you practice mindfulness the easier and more useful it becomes.

Can mindfulness cure you? No. Its purpose is to relax and help put life into perspective. If you are angry and distressed, that’s okay. I go there too sometimes. I use mindfulness to live in the moment and manage my emotions so that I am better able to manage my physical pain.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her 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.

Still No Relief in Sight for Canadian Pain Patients

By Marvin Ross, Guest Columnist

Last month the U.S. Centers for Disease Control and Prevention said the agency’s 2016 opioid guideline does not endorse rapid tapering or discontinuation of opioid therapy. The CDC was responding to mounting criticism that its controversial guideline was causing harm to patients, including uncontrolled pain, depression and suicide.

As a Canadian, I am envious and embarrassed, for it is not over for pain patients in Canada. Americans have had active advocates in the American Medical Association and hundreds of doctors signing a public letter of protest, which resulted in the CDC and Food and Drug Administration finally admitting that forcing people to go off opiates is not good practice.

Canadian docs have said little about this, so I decided to ask the main authors of Canada’s opioid guideline, which is pretty much a copy of the CDC’s. They had written in response to me last year in the Canadian Medical Association Journal that they had “concerns” about inappropriate tapering and would “monitor the emerging literature.” Only one replied to me this time, saying that they speak out whenever they can, but no one will listen to them.

One anonymous doctor going by the name of “doc2help” objected to a piece I did in Medium suggesting that Canadian doctors have lost their moral compass. He thinks I am ill informed and doing damage.

I also let the office of the Canadian Minister of Health know what the CDC and FDA have done, as Health Canada has the same regulatory powers for drug approvals as the FDA. The answer was that they are having internal discussions.

Meetings and discussions make the bureaucracy go round-and-round. The Minister of Health did recently announce the formation of a chronic pain task force, but it has a three year time frame for more meetings.

It is so much easier to blame patients and opioid prescribing, as Canadian authorities continue to do, even when most drug overdoses are the result of illicit fentanyl, not prescription opioids.

In Hamilton, Ontario, a medium sized city southwest of Toronto, opioid deaths are going up, while prescriptions are going down. Much of the illicit drugs in that city are due to pharmacy diversion, according to an excellent article in the Hamilton Spectator that revealed vast amounts of prescription drugs are making it onto our streets.

So far, 15 pharmacists have been caught peddling opioids illegally and Health Canada has found that over 1,400 Ontario pharmacies have reported missing drugs that they cannot account for. 

Dr. Anne Holbrook, director of clinical pharmacology at McMaster University, suggested it is patients who are selling their prescriptions on the street, but provided no studies to back up that claim when she spoke to the Spectator reporter. I have asked her directly and via the media relations department at McMaster University, but did not get a reply.  

Blaming patients is easy when you do not want to confront the fact that most street drugs are coming into the country illegally or being diverted by pharmacies.

A Toronto Star investigation found one Ottawa pharmacy that was responsible for putting at least 5,000 fentanyl patches on the street. The investigation found that between 2013 and 2017, nearly 3.5 million doses of prescription drugs disappeared from Ontario pharmacies. Over 200 Ontario pharmacists were disciplined by their professional body for diverting “massive amounts of deadly opioids.”

Our governments are ignoring all of this and blaming the poor chronic pain patients. Those of us in Canada will have to wait while the bureaucrats hold meetings and write papers before anything will be done.

Marvin Ross is a medical writer and publisher in Dundas, Ontario. He has been writing on chronic pain for the past year and is a regular contributor to the Huffington Post.

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.

Record Decline in Opioid Prescriptions

By Pat Anson, PNN Editor

Often lost in the debate over opioid medication is that prescriptions for the drugs have been falling for years — a trend that appears to be accelerating. The volume of prescription opioids dispensed in the U.S. last year fell 17 percent, the largest annual decline ever recorded, according to a new study by the health analytics firm IQVIA. Opioid prescriptions have dropped 43% since their peak in 2011.

“Decreases in prescription opioid volume have been driven by changes in clinical use, regulatory and reimbursement policies and legislation, all of which have increasingly restricted prescription opioid use since 2012,” the report found.

The biggest drop was in high dose opioid prescriptions of 90 MME (morphine milligram equivalent) or more, which account for 43% of the decline. Low dose prescriptions of 20 MME or less have remained relatively stable, falling just 4 percent.

While opioid prescriptions have fallen significantly, addiction and overdose rates continue to soar, fueled in large part by illicit fentanyl, heroin and other black market opioids.

“We saw many more people receiving medication-assisted treatment (MAT) for opioid addiction. Our research shows new therapy starts for MATs increased to 1.2 million people in 2018, nearly a 300 percent increase compared with those seeking addiction help in 2014,” said Murray Aitken, IQVIA senior vice president.

“This is an important indicator of the effects of increased funding and support for treatment programs to address addiction.”

A recent report by the Bipartisan Policy Center estimates the federal government spent nearly $11 billion since 2017 subsidizing the addiction treatment industry, much of it spent on MAT drugs such as buprenorphine (Suboxone).

Drug maker Indivior recently reported the buprenorphine market had double digit growth in the first quarter of 2019, and that “growth continues to be driven primarily by Government channels.”

Hydrocodone Prescriptions Drop

For the 7th consecutive year, prescriptions fell for hydrocodone-acetaminophen combinations such as Vicodin, Lortab and Norco. Once the #1 most widely dispensed drug in the nation, hydrocodone now ranks fifth, behind drugs used to treat thyroid deficiency, high blood pressure and high cholesterol.

Only 68 million prescriptions for hydrocodone were dispensed last year, half the number that were filled in 2011.

U.S. HYDROCODONE PRESCRIPTIONS (MILLIONS)

Source: IQVIA

Due to fears about addiction and overdose, hydrocodone was reclassified by the DEA as a Schedule II controlled substance in 2014, requiring new prescriptions for every refill.

“My hydrocodone has been cut in half and my pain is out of control. I feel like a criminal, like I am committing a crime each time I pick up my prescription. I now have to visit my doctor once a month to receive my script,” one patient told us.

“I was prescribed hydrocodone over the last couple of decades for severe chronic pain with very positive effects. Now I am unable to carry out a lifestyle for a man my age, I'm basically done/finished.  My way of life is over,” a disabled veteran wrote.

“Stop denying the patients that have real pain. I don’t use it to get high. Hydrocodone is the only thing that has helped my back pain. I’ve tried a lot of things but nothing helps. It frees me of enough of the pain that I can function like a normal person,” another patient said.

The shift away from hydrocodone and other opioids has benefited pharmaceutical companies that make non-opioid medications such as Neurontin (gabapentin) and Lyrica (pregabalin).  Prescriptions for gabapentin reached 67 million last year – nearly the same as hydrocodone.

These trends have yet to show much benefit for pain patients, who increasingly report their pain is poorly treated. In a recent PNN survey of nearly 6,000 patients, over 85% said their pain and quality of life are worse since the release of the CDC opioid prescribing guideline. One in five say they are hoarding opioid medication because they fear losing access to it in the future.

Doctors Prosecuted for Opioid Prescribing Should Fight Back

(Editor’s note: In 2016, Dr. Mark Ibsen’s medical license was suspended by the Montana Board of Medical Examiners for his opioid prescribing practices. Two years later, the suspension was overturned by a judge who ruled that the board made numerous errors and deprived Ibsen of his legal right to due process.)

By Mark Ibsen, MD, Guest Columnist

The headlines are pretty typical: “60 Doctors Charged in Federal Opioid Sting.” The story that follows will include multiple damning allegations and innuendos, including a claim by prosecutors that they are “targeting the worst of the worst doctors.”

Sometimes there is a trial, but often the doctors plead guilty to lesser charges and give up their license rather than mount a lengthy and costly legal defense.

Why are doctors losing every case to their medical boards and DEA? Are there that many criminal doctors? If so, what happened to our profession?

I see a pattern emerging: A doctor sees patients and treats pain in the course of their practice. As other doctors give up prescribing opiates for fear of going to prison or losing their license, the ones left end up seeing more and more patients.

They soon become the leading prescribers of opioids in their state and become suspect just based on the volume of opioids they prescribe.

Given that law enforcement and medical board investigators usually don’t have training in statistics (or medicine), they are unable to see that the number of pain patients remains the same, but there are fewer practitioners willing to treat them.

“The Criminalization of Medicine: America’s War on Doctors” was published in 2007, but is even more relevant today.   

“Physicians have been tried and given longer prison sentences than convicted murderers; many have lost their practices, their licenses to practice medicine, their homes, their savings and everything they own,” wrote author Ronald Libby. “Some have even committed suicide rather than face the public humiliation of being treated as criminals.”

Libby wrote over a decade ago about doctors’ homes and offices being raided, DEA agents posing as pain patients to entrap them, and law enforcement task forces being created to target doctors for fraud, kickbacks and drug diversion.

Sound familiar?

I was reviewing a case about a nurse practitioner in Michigan who recently had her license suspended because she prescribed opioids “contrary to CDC guidelines” and “ranked among Michigan’s highest-volume prescribers of commonly abused and diverted controlled substances.”

This unsubstantiated crap put out by the Michigan Board of Nursing and its investigator is unethical and immoral. It should lead to a mistrial in court or dismissal at hearings. 

Fight Fire With Fire

This is an Amber alert for physicians. While pejorative headlines contaminate the discourse, the prescriber’s reputation bleeds away. The Montana Board of Medical Examiners did this in my case, and since I knew that the board was relentlessly after my license for “overprescribing” opioids, I gave up any hope of fairness.

My proposal: Lawyers representing doctors must counter the negative headlines with their own, and doctors should use whatever goodwill is left to rally their staff and patients, counteracting the pressure to testify against the doctor. 

I used what was left of my bully pulpit to save my own license and freedom. How? My assistant assembled my patients in large crowds at my hearings. I also made myself available to the media to counter the narrative put out by Mike Fanning, the board’s attorney, who went so far as to publicly question my sanity.

Fanning’s title was special assistant Attorney General, which told me the medical board works for DOJ in my state. I knew this for sure when DEA agents came to my office and tried to intimidate me.

“Doctor Ibsen, you are risking your license and your freedom by treating patients like these.”

Patients like what?

“Patients who might divert their medicine.”

Might? Isn’t that everyone? What would you have me do?

“We can’t tell you, we’re not doctors.”

My plea to doctors: Let’s reinvent our defense. The DEA and medical boards have a formula. It’s winning. 

We need a new response: Fight back and hold on. Just like with any bully, reveal their game and fight fire with fire.

Dr. Mark Ibsen continues to practice medicine in Montana, but focuses on medical marijuana as a treatment. He no longer prescribes opioids. Six of his former patients have died after losing access to Dr. Ibsen’s care, three by suicide.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

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.

House Panel Seeks Clinical Trials of Kratom

By Pat Anson, PNN Editor

At a time when several states and cities have banned kratom, a powerful congressional committee is recommending that the herbal supplement be studied in clinical trials because of its “potential promising results” in treating chronic pain.

In a report to Congress, the House Appropriations Committee recommends that the National Institutes of Health (NIH) conduct research on whether kratom can be used as an alternative to opioids in treating pain.

“The Committee requests that NIH expand research on all health impacts of kratom, including its constituent compounds, mitragynine, and 7-hydroxymitragynine. The Committee is aware of the potential promising results of kratom for acute and chronic pain patients who seek safer alternatives to sometimes dangerously addictive and potentially deadly prescription opioids.”

The committee also recommended that the Agency for Healthcare Research and Quality (AHRQ) spend $3 million on clinical trials of kratom and cannabidiol (CBD) as alternatives for treating pain, and that the trials be conducted in “geographic regions hardest hit by the opioids crisis.”

The panel said it was concerned that the continuing classification of cannabis as a Schedule I controlled substance was stifling research “at a time when we need as much information as possible about these drugs.”

“The Committee notes that little research has been done to date on natural products that are used by many to treat pain in place of opioids. These natural plants and substances include kratom and cannabidiol (CBD). Given the wide availability and increased use of these substances, it is imperative to know more about potential risks or benefits, and whether or not they can have a role in finding new and effective non-opioid methods to treat pain.”

The committee said the current state of pain management in the U.S. is “often inadequate for many patients” and that additional treatments were needed. It asked that Congress be given an update on the development of non-opioid chronic pain therapies in the next fiscal year.

To be clear, the 346-page report by the House committee is an ambitious “wish list” of hundreds of various projects that may or may not be included in a final congressional spending bill.  But the inclusion of funding for kratom research is significant, given the campaign against kratom by some public health offiicials.

Kratom comes from the leaves of a tree that grows in southeast Asia, where it has been used for centuries as a natural stimulant and pain reliever. In recent years millions of Americans have discovered kratom and use it as a daily treatment for pain, addiction, depression and anxiety.  

Although kratom is not an opioid, health officials have warned that it has “opioid-like” qualities, can be addictive and is not approved for any medical condition. Last month the CDC said kratom was listed as the cause of death in at least 91 overdoses and the FDA said it discovered dangerous levels of heavy metals in dozens of kratom products.

Kratom has been banned in 6 states and dozens of counties and cities have enacted or are considering their own bans. Last year, the Department of Health and Human Services (HHS) recommended to the DEA that kratom be classified as a Schedule I substance – which would effectively ban it nationwide.

Ironically, HHS oversees both the NIH and AHRQ, the same agencies the House Appropriations Committee wants to fund for kratom research.   

‘Radical Shift’ Predicted in Fibromyalgia Diagnosis and Treatment

By Pat Anson, PNN Editor

New research has uncovered a previously unknown connection between fibromyalgia and the early stages of diabetes, which could dramatically change the way the chronic pain condition is diagnosed and treated.

In a small study of 23 fibromyalgia patients and two control groups, researchers at The University of Texas Medical Branch at Galveston (UTMB) were able to separate patients with fibromyalgia (FM) from healthy individuals using a common blood test for insulin resistance, or pre-diabetes. They then treated the fibromyalgia patients with a medication targeting insulin resistance (IR), which dramatically reduced their pain levels.

“Although preliminary, these findings suggest a pathogenetic relationship between FM and IR,  which may lead to a radical paradigm shift in the management of this disorder,” researchers reported in the online journal PlosOne.

Fibromyalgia is a poorly understood disorder that causes widespread body pain, fatigue, insomnia, headaches and mood swings. The cause is unknown, the symptoms are difficult to treat and there is no universally accepted way to diagnose it.

"Earlier studies discovered that insulin resistance causes dysfunction within the brain's small blood vessels. Since this issue is also present in fibromyalgia, we investigated whether insulin resistance is the missing link in this disorder," said Miguel Pappolla, MD, a professor of neurology at UTMB.

Pappolla and his colleagues found that patients with fibromyalgia can be identified by their hemoglobin A1c levels, a protein in red blood cells that reflects blood sugar levels. A1c tests are widely used to diagnose type 2 diabetes and pre-diabetes, and are routinely used in diabetes management.

Researchers say pre-diabetics with slightly elevated A1c levels carry a higher risk of developing widespread body pain, a hallmark of fibromyalgia and other chronic pain conditions.

"Considering the extensive research on fibromyalgia, we were puzzled that prior studies had overlooked this simple connection," said Pappolla. "The main reason for this oversight is that about half of fibromyalgia patients have A1c values currently considered within the normal range.

“However, this is the first study to analyze these levels normalized for the person's age, as optimal A1c levels do vary throughout life. Adjustment for the patients' age was critical in highlighting the differences between patients and control subjects."

After identifying the fibromyalgia patients with elevated A1c levels, researchers treated them with metformin, an oral medication that manages insulin resistance by restoring normal blood sugar levels. The patients showed dramatic reductions in their pain levels, with half (8 of 16 patients) having a complete resolution of pain.

“Our data provides preliminary evidence suggesting that IR may be a pathological substratum in FM and sets the stage for future studies to confirm these initial observations. If confirmed, our findings may translate not only into a radical paradigm shift for the management of FM but may also save billions of dollars to healthcare systems around the world,” researchers reported.

Drug Diversion Widespread in Healthcare Facilities

By Pat Anson, PNN Editor

The Drug Enforcement Administration recently completed another National Prescription Drug Take Back Day, collecting over 468 tons of unused or expired medications. The idea is to get risky drugs – particularly opioids – out of medicine cabinets before they wind up on the streets.

“The current opioid crisis continues to take too many lives, and many people get their first pills to abuse from the home medicine cabinet,” said DEA New Jersey Special Agent in Charge Susan Gibson.

But the DEA’s Take Back program overlooks a growing problem in the healthcare industry: Opioid medications are increasingly being stolen before they even reach home medicine cabinets.

According to a new report by the healthcare analytics firm Protenus, over 47 million doses of medication were stolen in 2018 by doctors, nurses, pharmacists and other healthcare workers, an increase of 126% from the year before. Opioids were involved in 94% of the incidents, with oxycodone, hydrocodone and fentanyl the most common drugs stolen.

“For both doctors and nurses, the high stress of the profession, long shifts, fatigue, physical and emotional pain, along with easy access to controlled substances, contribute to why they might divert medications,” the report found.

“Drug diversion poses a great deal of harm to patients because it puts them at risk of being treated by care providers working under the influence of controlled substances as well as receiving the incorrect amount or type of medications.”

Among the incidents cited in the report are a Texas nurse stealing opioid medication from elderly patients and a Maryland pharmacist filling bogus opioid prescriptions in return for sexual favors. According to Protenus, the average amount of time it took to discover a case of healthcare drug diversion was 22 months, giving diverters plenty of time to continue their thefts and cover their tracks.

To combat in-house drug diversion, Protenus recommends that hospitals, pharmacies, nursing homes and other healthcare providers establish drug monitoring programs – similar to those used for patients – and educate their employees about detecting and preventing diversion.

“Drug diversion occurs in virtually every hospital and health system in America, but many are in denial that it is happening in their own organization,” said Russ Nix, Director of Drug Diversion Prevention at MedStar Health. “Very few resources exist today on how to identify and combat drug diversion, and what’s out there is siloed.”

Nix belongs to the advisory board of Healthcare Diversion Network, a new non-profit that has an online portal where healthcare employees can report drug thefts anonymously. The goal is to collect data and raise awareness about drug diversion in healthcare facilities. 

“I was really shocked when we put our initial database together at how many of those thefts were out of hospitals.”

— Tom Knight, Healthcare Diversion Network

“I think thefts out of home medicine cabinets happen, but I also know that thefts out of healthcare systems and hospitals happen,” said Tom Knight, Chairman of the Healthcare Diversion Network. “Many of those thefts are for self-use, where the person stealing is going to consume them themselves. But sadly, many of those thefts are where the person is planning to distribute them, typically for profit on the street illegally.

“I was really shocked when we put our initial database together at how many of those thefts were out of hospitals. There are numerous cases where people working in hospitals stole hundreds of thousands of doses that were sold on the street for years before they were eventually caught.”

Knight says about 10 percent of all healthcare workers are stealing opioids and other controlled substances. He told PNN there is no good data to indicate how much of the stolen medication sold on the street comes from medicine cabinets and how much comes from healthcare facilities or the drug distribution system.

“Pretty much anywhere they exist they’re being stolen. We’re trying to raise the visibility, particularly on the part of the healthcare facilities,” he said.

The Prescription Opioid Crisis Is Over

By Roger Chriss, PNN Columnist

In a very real sense, the prescription opioid crisis is over. But it didn’t end and we didn’t win. Instead, it has evolved into a broader drug overdose crisis. Opioids are still a factor, but so is almost every other class of drug, whether prescribed or sourced on the street.

The main players in the crisis now are illicit fentanyl, cocaine and methamphetamine. The vast majority of fatal overdoses include a mixture of these drugs, with alcohol and cannabis often present, and assigning any one as the sole cause of death is becoming tricky.

Connecticut Magazine recently reported on rising fentanyl overdoses in that state. According to the Office of the Chief Medical Examiner, fentanyl deaths in Connecticut spiked from 14 in 2012 to 760 in 2018. Fentanyl was involved in 75% of all overdoses last year, often in combination with other drugs

Meanwhile, overdoses involving the most widely prescribed opioid — oxycodone — fell to just 62 deaths, the lowest in years. Only about 6% of the overdoses in Connecticut were linked to oxycodone.

Similar trends can be seen nationwide, mostly east of the Mississippi. Opioids still play a major role in drug deaths, with the CDC reporting that about 68% of 70,200 drug overdose deaths in 2017 involving an opioid. But more than half of these deaths involved fentanyl and other synthetic opioids obtained on the black market.

According to the National Institute on Drug Abuse, overdoses involving prescription opioids or heroin have plateaued, while overdoses involving methamphetamine, cocaine and benzodiazepines have risen sharply.

In other words, deaths attributable to prescription opioids alone are in decline. Deaths attributable to fentanyl are spiking, and deaths involving most other drug class are rising rapidly. The CDC estimates that there are now more overdoses involving cocaine than prescription opioids or heroin.

Moreover, the crisis is evolving fast. At the American College of Medical Toxicology’s 2019 annual meeting, featured speaker Keith Humphreys, PhD, remarked that “Fentanyl was invented in the sixties. To get to 10,000 deaths took 50 years. To get to 20,000 took 12 months.”

In fact, provisional estimates from the CDC for 2018 suggest we have reached 30,000 fentanyl deaths. And state-level data show few signs of improvements for 2019.

Worryingly, methamphetamine use is resurgent. And cocaine is “making a deadly return.”  Illicit drugs are also being mixed together in novel ways, with “fentanyl speedballs” – a mixture of fentanyl with cocaine or meth – being one example.

Drug Strategies ‘Need to Evolve’

The over-emphasis on prescription opioids in the overdose crisis has led to an under-appreciation of these broader drug trends. Researchers are seeing a need for this to change.

“The rise in deaths involving cocaine and psychostimulants and the continuing evolution of the drug landscape indicate a need for a rapid, multifaceted, and broad approach that includes more timely and comprehensive surveillance efforts to inform tailored and effective prevention and response strategies,” CDC researchers reported last week. “Because some stimulant deaths are also increasing without opioid co-involvement, prevention and response strategies need to evolve accordingly.”   

It is now common to hear about the “biopsychosocial” model for treating chronic pain – understanding the complex interaction between human biology, psychology and social factors. This same model has a lot to offer substance use and drug policy.

Substance use and addiction involve a complex interplay of genetic and epigenetic factors combined with social and cultural determinants. Treatment must be more than just saying no or interdicting suppliers. At present, medication-assisted therapy for opioid use disorder remains hard to access. And other forms of addiction have no known pharmacological treatment.

Addressing the drug overdose crisis will require not only more and better treatment but also increased efforts at harm reduction, decriminalization of drug use, improvements in healthcare, and better public health surveillance and epidemiological monitoring. Further, the underlying social and cultural factors that make American culture so vulnerable to addiction must be addressed.

None of this is going to be easy. Current efforts are misdirected, making America feel helpless and look hapless. Novel and possibly disruptive options may prove useful, from treating addiction with psychedelics to reducing risks of drug use through safe injection sites and clean needle exchanges.

We are long past the prescription opioid phase of the crisis, and are now in what is variously being called a “stimulant phase” and a “poly-drug phase.” Recognition of the shape of the drug overdose crisis is an essential first step toward changing its grim trajectory.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

Is the DEA Overreaching Its Authority?

By Lynn Webster, MD, PNN Columnist 

The U.S. Department of Justice (DOJ) does not have the legal authority to determine which health care activities constitute a “legitimate medical purpose.” However, an increasing number of prescribers have been subjected to DOJ criminal investigations that operate under an expanded interpretation of federal law.

In 1970, Congress passed and President Nixon signed into law the Controlled Substances Act (CSA). In its broadest sense, the CSA regulates every aspect of controlled substances, from production to delivery, distribution, prescribing, possession and use. The CSA’s impact is far-reaching, touching many different sectors of our society, including healthcare, pharmaceuticals, law enforcement, politics, and state and federal judiciaries.

According to the CSA, a prescription for a controlled substance “must be issued for a legitimate medical purpose by an individual practitioner acting in the usual course of his professional practice.” This statutory language is at the root of the issue. But who decides what is a legitimate medical purpose?

The Drug Enforcement Administration (DEA) is the branch of the DOJ that is tasked with enforcing the controlled substances laws and regulations of the United States.

In the context of trying to address the opioid crisis, the DEA has taken a proactive approach in determining which medical practices have a legitimate medical purpose and which do not. This hands-on approach is in direct contravention with the CSA. 

The DEA is effectively preempting state law as it relates to the regulation of controlled substances. In Gonzales v. Oregon, the U.S. Supreme Court ruled in 2006 that the authority to determine a legitimate medical purpose rests with state governments.

This means it is state lawmakers, not federal officials, who should regulate the practice of medicine. Medical boards are established by the authority of each state to protect the health, safety and welfare of patients through proper licensing and regulation of physicians and other practitioners.

If a doctor engages in an obviously nefarious activity, such as selling or trading prescriptions for sex or money, then that doctor is not in any way prescribing for a legitimate or legal medical purpose under the CSA. Remedies for this conduct would be within the authority of the DOJ, as well as state regulators.

The key phrases -- "legitimate medical purpose" and "in the usual course of a professional practice" -- are not defined in the CSA. This omission, unfortunately, has invited conjecture about the meaning of the phrases in recent years. The only way the phrase "legitimate medical purpose" would have any legal meaning would be if the concept of an "illegitimate medical purpose" were defined by the CSA -- and it is not.

Moreover, the words "legitimate" and "medical" are redundant. The practice of medicine is inherently legitimate, according to the CSA. The phrase "legitimate medical purpose" can be reduced to "medical purpose" without changing its meaning.

Any practice that is medical is legitimate and should be deemed consistent with the CSA regulation. The CSA, in other words, precludes the possibility that doctors who prescribe high doses of opioids have behaved criminally based only on the level of doses they prescribe.

Standard of Care

The DOJ is now using deviation from the “standard of care” to determine whether or not practitioners have a legitimate medical purpose to prescribe opioids. A standard of care is generally considered the customary or usual practice of the average physician.

In an attempt to address the opioid problem, the DOJ has hired medical experts who claim that any deviation from standard of care amounts to practicing without a legitimate medical purpose. In some instances, the government's experts have even used the CDC opioid guideline’s dose recommendation as a test of whether or not the prescribing of opioids has a legitimate medical purpose.

Using deviations from "standard of care" as criteria for compliance with the CSA is in direct conflict with the Supreme Court ruling in Gonzalez v Oregon, which found that the Attorney General “is not authorized to make a rule declaring illegitimate a medical standard for care and treatment of patients that is specifically authorized under state law.”

Even substandard treatment by providers is not necessarily criminal behavior and should rarely involve prosecution by the DOJ. This is supported by a 1983 statement in a DEA newsletter that declares acts of prescribing or dispensing controlled substances lawful when they are done within the course of a provider’s professional practice. Even if a physician's behavior reflects the grossest form of medical misconduct or negligence, it is nevertheless legal.

The information provided in the newsletter isn't an opinion. It's the law.

Unquestionably, prescribers should be held to a high standard of care at all times. However, it is the responsibility of state medical boards to hold them to that standard. It is not the DOJ's role to determine the quality or boundaries of the practice of medicine.

 Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is a former president of the American Academy of Pain Medicine and the author of “The Painful Truth.”

You can find Lynn on Twitter: @LynnRWebsterMD. 

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.

Cancer Patient's Rite Aid Video Goes Viral

By Pat Anson, PNN Editor

April Doyle was frustrated and angry when she left a Rite Aid pharmacy Monday in her hometown of Visalia, California. A pharmacist there had once again refused to fill her prescription for opioid pain medication, so she got into her car and tearfully recorded a video that she uploaded to Twitter.

“I’m frustrated and that’s why I’m crying,” Doyle said, looking into her cell phone camera. “I’ve had a hard time getting my pain pills filled from them.”

Doyle’s story is a familiar one to millions of pain sufferers, who often have trouble getting their opioid prescriptions filled at pharmacies across the country. But her story is a bit different. The 40-year old single mom has Stage 4 terminal breast cancer that has metastasized into her lungs, spine and hip.  Doyle’s oncologist wrote a prescription for Norco — an opioid medication — to relieve some of her pain.  

“And when you have metastatic cancer in your bones, you need it.  Because sometimes the pain is so much you can’t even function. And I just want to function. I want to be able to go to work and I want to be able to sleep. And I want to be able to do things with my child.  I just want it not to hurt all the time,” Doyle said.

Within days, Doyle’s 6-minute video would go viral on Twitter and Facebook, where it’s been viewed over 200,000 times.  She’d also get apologies from a Rite Aid vice-president, the store manager and the pharmacist who refused to fill her prescription.

Doyle was no stranger at that Rite Aid store. It’s right around the corner from her house and she’s been shopping there for 20 years. It’s where she’s been getting her prescriptions filled for chemotherapy, anti-depressants and anti-nausea drugs — all written by her oncologist. But Rite Aid always seemed to have trouble filling that prescription for Norco. 

“I have to take 20 pills a day just to stay alive,” Doyle explains in the video. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

Federal and state prescribing guidelines – and those of insurers – specifically exempt cancer pain from restrictions on opioid medication.  But some cancer patients still get turned away at pharmacies. According to Doyle, the Rite Aid pharmacist told her he was worried about being fined or even losing his job if he filled her opioid prescription.   

Some of that caution is understandable. Rite Aid and other major pharmacy chains were recently added as defendants in opioid lawsuits filed by the firm of Simmons Hanly Conroy. In the current climate of opioid hysteria and litigation, every step of the drug supply chain, from manufacturers to wholesalers to retailers is under scrutiny. Billions of dollars are at stake. Caught in the middle are pharmacists and patients like April Doyle.

“It’s not right. I’m not a criminal. I’m not a drug addict. I don’t even take them as often as my doctor says to take them. It’s not fair,” she said.

Astonished at Reaction

Doyle has been shocked at the response her video has gotten from the pain community. And surprised at how common her story is. Hundred of people left comments on Doyle’s Facebook page after watching her video.

“Stop giving your money to Rite Aid! You deserve dignity and great customer service,” one supporter wrote. “This whole opioid epidemic is making it impossible for those who medically need the meds. We all have our own story to share. This has to stop!”

“It’s hard to be sick and have people who don’t understand what you’re going through judge you,” said another supporter. “I hope you can find a pharmacy that will treat you with dignity and the compassion you deserve.”

“I know this oh too well trying to get my mom’s scripts filled when she was battling cancer running from store to store feeling and looking like a junkie. It was the most horrible part of it all!”  said another.

 “It’s astonishing the reaction it has gotten. I had no idea this was so common. It’s actually kind of sad how common it is,” Doyle told PNN. “It really struck a nerve with what’s apparently a big problem. I’m just dumbfounded by it.”

A Rite Aid spokesman said he could not comment on Doyle’s case.

“At Rite Aid, we are committed to providing high-quality care to all of our customers and patients. Rite Aid is not able to provide additional detail due to patient privacy,” Chris Savarese, Rite Aid Director of Public Relations said in an email.

Although the company has apologized to Doyle, she does not intend to go back to her neighborhood Rite Aid.

“I have decided to find a locally owned mom and pop pharmacy that really wants the business,” she said.

Shades of Grey

By Mia Maysack, PNN Columnist

A blonde walks into the mall, minding her own business, and sits down at a table in the food court.

A random dude calls out, "Don't you know it's rude to keep sunglasses on in here?"

That line felt like a punch to me.

"Well good sir, what can I say? My migraine lacks proper manners."

Yes, I wear sunglasses indoors because I'm cool like that. But it's also because after living with persistent and debilitating head pain for almost two decades, I need to wear sunglasses as a shield against the brutal assault of fluorescent lighting.

And sunglasses are one of the few ways I can make my seemingly non-existent illness visible to the rest of the world.  

There are specially designated migraine glasses that provide relief by strategically dimming light. Brightness levels on cell phones and other devices can also be turned down by a special app that filters blue light.   

Despite these helpful tools, walking under the bulbs in any public place feels as though light is raining down on me and, like a sponge, absorbing all of my energy.

That is why a trip to the grocery store could go well, but afterwards I'm out for the count and barely able to make it up the stairs.

Within the last couple years, my mobility has continued to be compromised -- especially when it comes to either sitting (driving) or shifting positions (sitting to standing). At a conference recently, after noticing my navigation or lack thereof, a dear colleague suggested what I had been silently dreading: the possibility of using a cane. There's nothing wrong with canes, I'm grateful for all medical devices, but suffice to say they aren’t exactly what I had pictured at the ripe old age of 29.  

I've become accustomed to losing a lot as a result of chronic pain and illness, but confronting a limited physical future is my newest anguish.

The combination of chronic cluster headaches, daily intractable migraines and now fibromyalgia not only heighten the pain scale number, it hinders even the simplest of daily tasks. It impacts the few things I am still able to do that bring me joy, such as participate in creative body movement through yoga or dance.

I smirk thinking back to the days I could go out and dance for hours on end. There's a certain spark that comes alive in me when bass throbs its way through a loudspeaker. I'm quite aware that is contradictory to head pain, yet somehow, I cannot live without it. My soul begins to vibrate in the most calming way as I am enticed by the rhythm and it takes over.

Fast forward to today and I'm fortunate to get a couple minutes of dancing in before symptoms worsen. I cannot go as hard or as long as I used to, but it has caused an evolution in my movement, leading me to a whole-body present moment acceptance.  

Last week at an appointment, I mentioned that a cane will likely be needed daily in the near future. Initially the provider skipped over the remark entirely, but when I brought the conversation back around to ensure we were on the same page, she reacted with “Oh yes, your question about a cane.” 

I don’t recall needing an answer so much as an acknowledgement, as I do not feel the need to ask for permission to do what’s going to be best for myself. 

It’s never too far from my mind that I walked away from bacterial meningitis. If it is now catching up to me, there’s never an ideal time for that to happen and I am fortunate to have had moments with an abundance of blessings. No matter how dark life can get, it’s imperative we make the absolute most of every breath and make a conscious commitment for the sake of ourselves to never give up. 

Whether we live inflicted with physical ailments or not, none of us know what the future holds, nor when our number may be up. All it takes is a slight change in circumstance to alter our lives forever, so we must take time to appreciate and find ways to enjoy the gifts we have. 

The blonde kept the shades on and walked out with her cane like the bad ass that she is!      

Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook support group, and Peace & Love Enterprises, a wellness coaching practice focused on holistic health.

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.

Out-of-Pocket Costs for Neurology Drugs Rise Sharply

By Pat Anson, PNN Editor

Out-of-pockets costs for medications to treat multiple sclerosis, peripheral neuropathy and other neurologic conditions rose sharply over 12 years, according to a new study that found the average monthly cost to patients for MS drugs rose nearly 2,000 percent.

One in six people lives with a neurologic disease or disorder, according to the American Academy of Neurology. The annual cost of treating neurologic disorders in the United States is more than $500 billion.

“With many new, high-priced neurologic drugs coming to market and a recent rise in use of high-deductible insurance plans, which shift costs to patients, it is likely out-of-pocket costs will continue to increase,” said lead author Brian Callaghan, MD, of the University of Michigan in Ann Arbor.

The study was published online in the journal Neurology.

Callaghan and his colleagues examined out-of-pocket costs for over 912,000 people with MS, neuropathy, epilepsy, dementia or Parkinson’s disease who were privately insured from 2004 to 2016.

Researchers found that out-of-pocket costs for MS drugs showed the steepest monthly increase. Patients paid an average of $309 a month in 2016, compared to just $15 in 2004. Costs for MS patients in high-deductible health plans were even higher, averaging $661 per month or nearly $8,000 a year.

Co-pays and deductibles for brand name medications for neuropathy, dementia and Parkinson’s disease also rose considerably.

“Everyone deserves affordable access to the medications that will be most beneficial, but if the drugs are too expensive, people may simply not take them, possibly leading to medical complications and higher costs later,” said Ralph Sacco, MD, President of the American Academy of Neurology.

Researchers said neurologists and other physicians usually do not know the cost of drugs they prescribe, so they don’t discuss alternative medications based on a patient’s disease, insurance plan, pharmacy and deductible.

“Out-of-pocket costs have risen to the point where neurologists should be able to consider the potential financial burden for the patient when prescribing medication, but they do not have this information available to them,” Callaghan said. “Neurologists need access to precise cost information for these drugs in the clinic so when they meet with patients to make treatment decisions, they can help minimize the financial burden.”

Even when a generic version of a drug becomes available, it can take years for out-of-pocket costs to drop substantially. It took five years for out-of-pocket costs for gabapentin, for example, to drop to those of other tricyclic anti-depressants after gabapentin went generic in 2004.

A 2015 study found an “alarming” increase in costs for MS drugs and suggested the price increases were coordinated by drug companies.

Why I’m Fed Up with the Healthcare System

By Nyesha Brooks, Guest Columnist

I'm so fed up with the healthcare system. I was diagnosed a year ago with a chronic invisible illness known as fibromyalgia. I also have depression and anxiety. I was relieved to finally have a name for what I was going through.

My journey with this illness has been pure hell. I live with chronic pain every day of my life. I had to resign from my employment of 8 years because I could not bear the pain any longer.

Suicide is a BIG concern when people have fibromyalgia. I had to reach out to the crisis hotline due to feeling like nobody understood. The pain is so unbearable, constant fatigue, numbness in your body parts, and crippling back pain at times. You also get brain fog that can cause memory loss and mood swings. It’s all isolating.

While there is no cure for fibromyalgia, doctors say it’s not fatal. But if you live your life in pain every day, it will cause all kinds of health problems that can lead to death.

My issue with the doctors today is they don't listen anymore and they stereotype everyone as opioid abusers. I’ve never done drugs or abused medications in my life. Even when I'm in severe pain, I still take only what is prescribed for me. It's almost like they want you to go home and suffer.

The problem with fibromyalgia is there's no detection or extensive research on it. There’s not a lot of information out there. To the naked eye I look fine and healthy. However, that’s not my reality. I have nerve damage. When I'm home I wear something very comfortable and I'm in bed most of my day. We are very sensitive to loud sounds and light. I listen to a lot of relaxing sounds on Youtube such as the rain falling.

NYESHA BROOKS

I have big help from my family that assist me throughout the day because I have limitations. I take all kinds of medications that I keep in a bag. The medication doesn't work at all. It just makes you very drowsy and increases the pain that you’re already in. Due to the opioid epidemic, we're restricted from getting the right medications.

I’ve been to the ER so many times because I get flare ups that can last all day or weeks. I'm on high blood pressure medicine due to being in severe pain. I'm telling you I don’t wish this on my worst enemy.

I have been fighting for my social security disability for a year now. I was rejected the first time and now I’m waiting on my appeal decision. It’s very upsetting because I'm a mother and I just want to take care my children.

Plan B is not even an option for me because I can't handle a day-to-day job. One task burns me out or takes me hours to do. My therapist says because I'm always stressing, I'm not going to be here to see my benefits. Today my doctor looked at me and suggested because of my age I should go back to the work world. I'm fed up. My doctor bases my reality on his research. How is research more accurate than my truth?

I met so many fibro warriors from a support group on Instagram and we all have similar stories with the healthcare system. I need help getting this awareness out because fibromyalgia matters and is real. The doctors need to take our illnesses seriously and listen. One rejection can cost a person their life. We need love, support and understanding.

Nyesha Brooks lives in South Philadelphia.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

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.