THE PAIN PATIENTS TOOLBOX | Updates to Prescribing Rules?

https://youtu.be/ayPHm7Mcwko

Patients Demand Neurosurgeon, Dr. Mark Linskey’s, Reinstatement To His Former Position In UC Irvine’s Department Of Neurological Surgery

Patients Demand Neurosurgeon, Dr. Mark Linskey’s, Reinstatement To His Former Position In UC Irvine’s Department Of Neurological Surgery

https://www.thepetitionsite.com/takeaction/199/328/446/

Trigeminal Neuralgia is the most painful condition known to mankind. Dr. Mark Linskey is considered one of the top doctors in the U.S. (if not THE top doctor) for treating complex cranial neuralgias. His expertise and patient care is unrivaled. He has alleviated his patients’ misery and restored their lives, for which the patient community is forever grateful. It is not the reputation of UC Irvine that patients seek but rather the outstanding reputation of Dr. Linskey and the high standards he upholds for his patients. The department of Neurosurgery as well as the entire institution, should reward him for his exemplary care.

Litigation is continuing as to whether Linskey can be reinstated to his former position in the department of neurological surgery and the university’s residency training program, after he was moved in retaliation for filing a patient safety complaint. His community of patients band together in support of this highly regarded doctor. If UC Irvine values their patients, who travel from all over the world for his care, they will reinstate his position to the highest level possible. In signing this petition we, the patients, stand together in supporting Dr. Linskey.

Background on case from the Los Angeles Times-

“An Orange County jury awarded $2 million in damages to Dr. Linskey, who filed a lawsuit that the University of California Board of Regents and the former dean of UCI’s School of Medicine breached whistleblower protection laws when he was retaliated against for filing a grievance against his supervisors, expressing concerns about patient safety.

The defendant. Ralph Clayman, former dean of the medical school, along with Johnny Delashaw, former chairman of the department of neurological surgery, collaborated to oust Linskey from the department of Neurology.

In the complaint, Linskey alleged patient safety was put at risk in June 2012 when vascular neurosurgery cases — surgery done under a microscope on blood vessels in or around the brain or under the neck — were removed from the general neurosurgery on-call service and that future emergency neurovascular cases were reserved for Delashaw and another doctor.

Linskey said he requested inclusion in the neurosurgery vascular call schedule and was denied. Linskey filed a grievance with the Committee on Privilege and Tenure in March 2013, naming Clayman and Delashaw.

The lawsuit alleged that Clayman retaliated against Linskey by pushing to have him moved from the department of neurosurgery to the department of general surgery. It also alleged that Delashaw threatened residents by ordering them to not assist Linskey during surgery and discouraged verbal communication with him.

Linskey also named the UC Board of Regents in the lawsuit, saying it failed to protect him even after he submitted a UCI Whistleblower Retaliation Complaint Form in May 2014.

Clayman departed as dean in 2014 to be a professor in the UCI department of urology. He did not immediately return a call seeking comment Thursday, and his attorneys referred questions to UCI, which declined to comment.

UC also referred questions to UCI.

Delashaw, who left in 2013, was originally named as a defendant in Linskey’s lawsuit but was removed in summary judgment by Orange County Superior Court Judge Glenn Salter. That decision is being appealed, according to Gina Fernandes, a spokeswoman for Linskey’s team.

Delashaw could not immediately be reached for comment Thursday.

Litigation is continuing as to whether Linskey can be reinstated to his former position in the department of neurological surgery and the university’s residency training program.

Linskey’s attorney Ivan Puchalt said a judge would hear additional evidence July 22 and make a decision within 30 days.

“[The jury] … only awarded damages for loss of income and emotional distress. They didn’t award future damages,” Puchalt said. “When [Linskey’s] out of his department, his reputation is harmed. It’s kind of like a red flag to anyone in a small community of neurosurgeons to not be in your own department.”

Linskey said he looks forward to “healing this breech, and all outstanding issues, and moving forward with renewed hope and positivism.”

“Despite problems and issues with past, and current, leadership decisions, my loyalty and dedication to UC Irvine as an institution and to training new neurosurgeons as part of the neurosurgery residency training program … have never wavered,” he said.

Delashaw left UCI for a hospital in Seattle, where he faced internal complaints over patient care and a high-volume surgical approach, according to a Seattle Timesinvestigation in 2017. He sued the paper a year later, alleging libel and defamation.

The Washington medical commission suspended Delashaw’s medical license in 2017 and reinstated it the following year. He sued five commission members in December in relation to the license suspension, alleging they had violated his constitutional rights, interfered with his ability to practice neurosurgery and defamed him.

Both of the lawsuits are ongoing.”

COMPLEX REGIONAL PAIN ASSOCIATION HOSTS 4TH ANNUAL LONG ISLAND WALK

COMPLEX REGIONAL PAIN ASSOCIATION HOSTS 4TH ANNUAL LONG ISLAND WALK

Chronic Pain Disease Rated Worse Than Cancer Unites Long Islanders

To Raise Awareness for Rare Condition

 EAST MEADOW, NY – June 1, 2019 – The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) has announced that Saturday, September 7 will be the date of the Fourth Annual Long Island Awareness Walk and Expo for Complex Regional Pain Syndrome (CRPS).  More than 500 people suffering with the most extreme chronic pain known to man are expected to gather at Eisenhower Park, East Meadow, for the event that is designed to be a community educational day as well as a fundraiser.

RSDSA supports people and caregivers diagnosed with CRPS (aka RSD), a debilitating and chronic disorder that afflicts more than 2,000 Long Islanders with unrelenting neurologic pain that trumps the pain of cancer, amputation and childbirth.  Online registration for this year’s Walk and Expo is ongoing now through August 15.  After that date, participants may register the day of the event at Eisenhower Park.

The goal of RSDSA’ s annual Long Island Walk and Expo is to raise awareness, fund better treatments, and ultimately find a cure for this disabling neuro-inflammatory disorder that can happen to anyone following a trauma of any kind. The 2019 RSDSA event on LI is designed to give patients, caregivers, medical experts, therapists, and businesses the opportunity to network in an informal, supportive environment. 

This year’s Walk and Expo will take place from 8 a.m. until 2 p.m. at Eisenhower Park’s 1K and 2.5K paths reserved for the event.  In addition to almost 500 walkers last year, the 2018 event attracted more than 50 volunteers and more than doubled the money raised from the inaugural walk on LI in 2016.  

“Since its inception on Long Island three years ago by three female patients who suffer with severe CRPS, RSDSA’s awareness walks on Long Island have raised more than $150,000 for the organization,” said Jim Broatch, RSDSA’s executive vice president and director.  “Our LI Walk and Expo has attracted more than 1,500 attendees to date from throughout the metro NY region, as well as other states far and wide.  It has become one of RSDSA’s most successful fundraisers, and is so important to us because our organization relies on these programs for emergency patient services, research, education, advocacy and more.  The event is much more than a walk.  Our hope is to expand the CRPS community by creating awareness of the disorder, offering support, providing education, creating networking opportunities and raising much needed funds. 

CRPS plagues some 200,000 people nationwide; however, it is often under-reported and misdiagnosed. According to one report, only four percent* of medical schools offer dedicated courses on pain, which leaves today’s providers without all of the skills required to detect, treat and manage CRPS.  This further contributes to improper treatment for those diagnosed with CRPS and often leads to overall failure in care and treatment. 

Registered participants may choose to walk, run, roll or simply just attend this year’s RSDSA event.  Anyone can attend regardless of ability.  Walk admission for 2019 will cost $25 for adults (ages 12+); $10 for children ages 6-11, and free for children under 5.  A free t-shirt will be distributed to pre-registered participants.  Day-of admission is also available at the park for $30 for adults and $10 for children. 

Educational resources, sponsors, and health professionals will be on hand during the walk, along with entertainment, and craft activities for children.  Admission includes a complimentary bagel breakfast.  The walk will be followed by a barbeque lunch to encourage socializing with other CRPS patients, care givers, sponsors and medical professionals.  Raffle prizes will help generate additional funds for RSDSA.

For more information about the September 7, 2019, RSDSA Long Island Awareness Walk Event, visit: https://www.firstgiving.com/event/rsds/4th-LI-CRPS-Walk

Formed in 1984, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is an international 501 (c) (3) not-for-profit organization based in Milford, CT. Its mission is to provide support, education and hope to all affected by the pain and disability of CRPS, while driving research to better develop treatments and a cure.  RSDSA, which sponsors similar walks and fundraisers in other cities across the US, aims to improve the lives of those affected by Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. 

For more information about RSDSA, visit http://rsds.org, call 877-662-7737, or email RsdsaLongIsland@gmail.com 

Twitter: @rsdsalongisland

Facebook: https://www.facebook.com/pg/RSDSA/events/?ref=page_internal

Instagram: https://www.instagram.com/rsdsa_official/  #RSDSA2019LIWalk 

## #

 *Based on the less than 200,000 people across the United States with the diagnosis.

NOTE:  MEDIA INTERVIEWS AND QUALITY IMAGES FROM LAST YEAR’S RSDSA WALK ON LONG ISLAND ARE AVAILABLE UPON REQUEST

Media Contact:

Stacey Udell
631-379-7784 cell

sudell@staceyudell.net

Stacey Udell

Melville, NY

631-379-7784 cell

sudell@staceyudell.net

https://www.facebook.com/stacey.udell

https://twitter.com/staceyudell

Co-Chair, RSDSA’s 4th Annual Long Island Awareness Walk & Expo for Complex Regional Pain Syndrome (CRPS) 

Pre-Register or Donate now through Aug 15: https://www.firstgiving.com/event/rsds/4th-LI-CRPS-Walk #RSDSALIWALK2019 @rsdsalongisland

 

If anyone had noticed… I have been AWOL for about ONE WEEK

We have been down to our condo at Panama City Beach, FL trying to deal with the aftermath of Hurricane Michael which came ashore Oct 9, 2018 – Nearly EIGHT MONTHS AGO !!
The first estimate was that everything would be back to NORMAL by March 1, 2019… we are now MAYBE be back together by Aug 1, 2019.
Hurricane Michael was just the first “domino” in a long daisy chain of SCREW UPS.

Right now, I am not going to name names… but … there is a whole list of “guilty parties” … General Contractors, Insurance adjusters, Moving company, Condo’s Board of Directors
Our condo complex is 134 units and about 100 of those units are rented by the owners to help pay the cost of maintaining a unit. In Panama City Beach the “summer rental season” – about 8 weeks and the “spring break rental season” about 6 weeks.. will generate about 50%-66% of the annual potential rental income. “snow birds” provide the balance… In the Panama City beach a condo will rent for 2-3 times for a week in the summer/spring break as they do for a MONTH IN THE WINTER.

Some of owners in our complex may end up losing their condos because they DEPEND on that rental income to pay the overhead cost of keeping a condo. On top of that, the insurance policy for the condo has a $400,000 DEDUCTIBLE and these same people are going to get – at a minimum – a $3.00 – $4.00/sq ft ASSESSMENT to pay for at least the DEDUCTIBLE. The vast majority of the units range in size from 750 Sq ft, 1050 sq ft and 1400 Sq ft.

Our unit has been our “second home” since 2000… so we have not depended on generating rental revenue to pay the bills… Our unit is safe but we are not too happy about not being able to spend the last winter down there, the first time in nearly TWO DECADES 🙁

It may take me a week or more to catch up … out of the six days AWOL… two days were spent on the road – 650 miles each way. The other 4 days were spent tracking down why something done to my unit, why wasn’t something done to my unit that was suppose to be done by now… I got a lot of “I don’t know”… “someone else must have done that”… “someone else was suppose to have that done by now “

 

why should a national health care program penalize people for shopping at nearby locally-owned businesses?

Guest column Elaine Ulman: Local prescription drug wars

https://www.gazettenet.com/Guest-column-Elaine-Ulhman-25067368

Americans pay the highest prescription drug prices in the world. Yet independent pharmacies in small towns and rural communities like western Massachusetts struggle to survive. You may not see the pharmacist tied up and gagged beside an empty cash register, but independent pharmacies have been systematically robbed for years. Medicare Part D and Medicaid, insurance programs created to help people pay for prescription drugs, have also been cheated, along with state and local governments.

I stumbled upon this problem when the price of my daily thyroid pill, covered by Medicare Part D, suddenly tripled. Instead of 90 pills for $36, I received 30 pills for the same price. My local independent pharmacist told me he could no longer sell more than one month’s supply, though I could still get 90 pills for $36 from a chain drugstore in town or by mail order.

That seemed unfair. Why was this rural pharmacy unable to sell what CVS, Walgreens and mail-order pharmacies could provide? And why should a national health care program penalize people for shopping at nearby locally-owned businesses? My pill bottle was empty and I didn’t want to waste a gallon of gas driving into town, so I paid the $36 and went home determined to find answers.

The website, PBMwatch.com, tracks state and federal actions on prescription drug pricing. PBM stands for pharmacy benefits managers. They are “third-party administrators contracted by insurance companies, employers, unions, and government entities to handle the prescription drug benefit component of health care plans.” PBM’s are often referred to as “middlemen,” but don’t be fooled. The four largest — CVS Caremark, OptumRX, Walgreen/Boots Alliance and Express Scripts — are owned by or affiliated with large insurance companies or national drugstore chains. This creates a conflict of interest between increasing corporate profits and reducing costs for consumers. Independent pharmacies are caught in the middle.

PBM’s have tremendous power. They choose drugs for formularies, negotiate prices and discounts with pharmaceutical companies and drug wholesalers, process insurance claims from hospitals, nursing homes and other health care providers, and reimburse pharmacies for retail prescription sales. Operating without government regulation has allowed PBM’s and their corporate affiliates to profit from every transaction using unfair business practices, according to the National Community Pharmacist Association.

Four independent pharmacists I talked with in western Massachusetts confirmed that the PBM contracts they had to sign included a gag clause forbidding the pharmacist to tell customers about cheaper generic drugs or alert them when an insurance copay costs more than paying in cash. Violating the gag clause could lead to fines or cancellation of contracts.

PBMs routinely reimbursed the pharmacists for less than the wholesale cost of a drug, meaning pharmacists actually lost money on retail prescription sales. The discounts and rebates PBM’s squeezed from manufacturers and wholesalers were not passed on to customers. Instead they disappeared, buried in corporate profits.

Congress has outlawed PBM gag clauses and held hearings to “open the black box” and shine a light on high prescription drug costs. Meanwhile, 41 states, including Massachusetts, are considering PBM reform bills.

In 2018, Massachusetts Attorney General Maura Healey sued Walgreen/Boots for routinely overcharging on prescription drug claims submitted by the state’s workers’ compensation plan. Walgreens settled for $5.5 million. This year, Healey filed another suit against Walgreens for fraudulent overcharges on prescription sales to MassHealth and falsifying claims for reimbursement for insulin from 2006-2018. The company paid $2.2 million without acknowledging wrongdoing. The Massachusetts penalties were a slap on the wrist for a drugstore/PBM with $131.5 billion in revenue for fiscal 2018.

An Iowa pharmacist/whistleblower who serviced his county jail triggered a lawsuit when CVS Caremark reimbursed him less than $6 for a bottle of generic antipsychotic pills, then billed the county $198 for the prescription. “Middlemen have to make some money,” the flabbergasted pharmacist told Bloomberg reporters, “but we… figured everyone was playing fair.”

Independent community pharmacists do more than play fair. They reach out to help customers in ways chain stores cannot. They told me about driving through snowstorms after hours to deliver medications for elders or mothers with seriously ill children. They agonized about whether to send away loyal customers with expensive prescriptions or keep the customer while losing money on every sale. They chaffed as big drugstore chains undermined them by cutting reimbursements and then offered to help their struggling business by buying out the store.

Fortunately, independent community pharmacists are a hardy breed. We need their expertise and integrity. Here are ways to support them:

■Buy local! Neighborhood pharmacists give honest advice on drug choices and savings. Their prices for generic non-prescription drugs, readers, sunglasses, and other health aids are often less than those in chain stores.

■ Call state Sen. Cindy Friedman, a health finance expert on the Senate Ways & Means Committee, at 617-722-1432, and your individual state senators. Ask them to support H1133/S.706, an act to ensure prescription drug cost transparency and affordability, as written before recent amendments were added.

■Congressman Richard Neal pushed a weak transparency bill through the House Ways & Means Committee. Demand that he fight for stronger, enforceable drug pricing and PBM regulations.

Elaine Ulman lives in Goshen.

 

Denial of treatment for chronic pain is GOING INTERNATIONAL ?

Daphne Bramham: Tougher new regulations promise more agony for chronic pain-sufferers

https://vancouversun.com/opinion/columnists/daphne-bramham-tougher-new-regulations-promise-more-agony-for-chronic-pain-sufferers

One in five Canadians lives with chronic pain, but the cries of an estimated 800,000 British Columbians are not only being ignored, their suffering is being exacerbated by regulators limiting their access to both drugs and treatment.

First, in a move unprecedented in North America, the B.C. College of Physicians and Surgeons imposed mandatory opioid and narcotic prescription limits on doctors in 2016 in an attempt to avoid creating additional addicts and having more prescription drugs sold on the street.

Physicians who don’t comply can be fined up to $100,000 or have their licences revoked.

Now, the college is setting tough regulations for physicians administering pain-management injections.

“I’m enraged,” says Kate Mills, a 33-year-old, palliative care nurse who has been on disability leave for the past 18 months. “People like me are living in chronic, intractable pain and being ignored by doctors who are either too scared or too callous to care.”

She has an uncommon, congenital condition that causes chronic inflammation near her sacroiliac joint and in her lower back, which pushes down on her nerves causing “exquisite pain” down her leg.

Her first doctor essentially fired her, refusing to treat the pain. The next one prescribed Oxycodone to help Mills through until she was able to receive a steroid injection at a clinic, which kept the pain in check for several months.

But by the time the injection’s effects were wearing off, her GP went on extended medical leave. The locum assigned to Mills refused to prescribe her any medication and told her to go to an emergency room where she was given a prescription.

After numerous ER visits, Mills finally found a doctor two weeks ago who is willing to provide medication for her between injections. But he agreed only after Mills signed a contract agreeing that she won’t sell the drugs, will only go to one pharmacy and take the drugs only as prescribed.

She is lucky, though. Her pain management clinic will likely meet the college’s new standards that were developed by an advisory panel over the past three years out of concern about patient safety.

“Increasingly,” the college says on its website, “Procedural pain management is being provided in private clinics and physician offices, but without much guidance on appropriate credentials, settings, techniques and equipment.”

The new regulations would require physicians’ offices or clinics to become accredited facilities with standards on par with ambulatory surgery centres.

That means having tens of thousands of dollars’ worth of equipment including resuscitation carts, high-resolution ultrasound, automated external defibrillators and electronic cardiograms with printout capability.

The college acknowledges that “patients do not require continuous ECG monitoring. However, the cardiac monitoring equipment must be available in the event a patient has an unintended reaction to the procedure.”

The disruption for patients will be huge, according to Dr. Helene Bertrand, a general practitioner, pain researcher and clinical instructor at UBC’s medical school.

She estimates that up to 80 per cent of the offices and clinics where the injections are currently being done won’t measure up and already wait times are up to 18 months.

When the new requirements come into force, Bertrand predicts patients will be waiting anywhere from four to seven years for treatment.

Bertrand herself will have to quit doing prolotherapy, which she has done for the past 18 years on everything from shoulders to necks to spine to ankles. That’s despite the fact she’s never been sued, never had a complaint filed with the college and has published, peer-reviewed research that revealed an 89 per cent success rate among 211 patients in her study group.

(Prolotherapy involves injecting a sugar solution close to injured or painful joints causing inflammation. That inflammation increases the blood supply and deposits collagen on tendons and ligaments helping to repair them.)

The college will not grandfather general practitioners already doing injection therapies. Instead it will restrict general practitioners to knees, ankles and shoulders. All other joint injections must be done by anesthetists or pain specialists.

For Joan Bellamy, that’s a huge step backward.

She’s suffered from chronic pain since 1983 and “undergone the gamut of medical approaches, often with excessive waits: hospital OP (outpatient), pharmacology, neurology, orthopedics, spinal, physiatry and private.”

Since 2000, she’s had multiple injections that have made a difference. But her doctor doesn’t meet the new qualifications.

“I am afraid that without her expertise … that pain will become an intolerable burden, and any search for treatment will result in inconceivable wait times and will debilitate me,” Bellamy wrote in a letter to the college and copied to me.

The near future for pain-sufferers looks grim with most physicians able to offer them little more than over-the-counter painkillers.

Ironically at a time when the provincial medical health officer and others are lobbying hard to have all drugs legalized so that addicts have access to a safe supply, chronic pain-sufferers are being marginalized. For them, it’s more difficult than ever to get what they need.

It’s forcing many of them facing a lifetime of exquisite and unbearable pain to at least contemplate one of two deadly choices: Buy potentially fentanyl-laced street drugs; or worse, ask for medically assisted dying.

Portage woman’s family says she died because she couldn’t get her painkillers

Amputee Dawn Anderson talks about opioid pain reliefPortage woman’s family says she died because she couldn’t get her painkillers

https://www.nwitimes.com/news/special-section/opioids-in-nwi/portage-woman-s-family-says-she-died-because-she-couldn/article_084ea51b-74c5-5566-8049-923c6dc961bd.html

Amanda Latronica says her mom died of a “soft suicide.”

She didn’t put a gun to her head and pull the trigger — but the result was the same.

Earlier this year, Dawn Anderson, Latronica’s mother, went into kidney failure. It was another in a string of health problems that had left Anderson, a 53-year-old former nurse from Portage, severely disabled.

She had two amputated legs and was missing an eye, both complications from Type 1 diabetes.

And she was in extreme pain, she said, because of the opioid crisis.

Anderson was the face of a July 2018 Times story about the plight of chronic pain patients who feel they’re the inadvertent victims of that epidemic. Amid a rash of opioid overdose deaths — caused in part by physicians liberally prescribing the drugs — the U.S. Centers for Disease Control and Prevention in 2016 issued guidelines recommending that doctors not prescribe large doses of opioids, or prescribe them long term, to patients who weren’t at the end of life or undergoing cancer care.

That, along with the Drug Enforcement Administration going after doctors for overprescribing painkillers, left many physicians fearful of dispensing pain meds.

“The safest thing is to err on the side of safety and be overly strict in prescribing,” said Dr. Shaun Kondamuri, a Munster pain management specialist. “So legitimate pain patients are suffering. They may not get medications. They may not get enough medications.”

He said pain medicine prescribing went from one extreme to another, from doctors handing out painkillers like candy to not giving them to people who actually needed them. Many primary care doctors now refer pain patients to specialists because they don’t want to deal with them.

But last month, the CDC published a report saying that doctors were misinterpreting the guidelines. It clarified that the recommendations did not advocate for abruptly tapering or cutting off patients from pain meds, particularly for people already on high dosages.

The original suggestions said physicians should not increase patients to 90 or more milligrams of morphine, or its equivalent, per day. But many doctors incorrectly thought that meant not having any patients on that high a dose.

That was the case for Anderson. She had been on 90 milligrams of morphine, but her doctor reduced her dosage and gave her a shorter-acting form of the medication. That, she said, left her unable to go up and down stairs, to drive, to garden, to function much at all. She tried pain injections, CBD, kratom — but nothing worked.

She told The Times in July that she was tempted to look for a “Dr. Kevorkian type,” someone who would help put her out of her misery.

She found that, her family said, in the form of not seeking medical treatment that would have kept her alive.

Rushed to the hospital

In early March, Anderson’s husband tried calling her at home, but she didn’t answer. He called police to do a wellness check. They found her on the floor, disoriented.

An ambulance took her to the hospital, where doctors confirmed she was in kidney failure. They said dialysis was an option. She refused it.

A few days later, her condition deteriorating, she chose to go home and die peacefully, her family and hospice by her side.

“If she knew she would have had pain medication and wouldn’t have had to suffer, she absolutely would have agreed to do dialysis,” said Latronica, a 29-year-old truck driver from Diamond, Illinois.

“She said, ‘This is my way out.'”

Anderson had organized and led a local Don’t Punish Pain rally last September in Valparaiso. The national founder of that movement, Claudia Merandi, said that despite the CDC’s clarifications, things are actually getting worse for chronic pain patients. That’s because many doctors are increasingly afraid they’ll get arrested if the DEA decides they’re prescribing too many painkillers.

“The fear of retribution is very real, it’s very great, and it needs to stop,” said Merandi, 50, a former stenographer from East Providence, Rhode Island who is on disability because of Crohn’s disease.

She said the one thing that has changed is that chronic pain patients’ voices are being heard. Also, lawmakers are starting to introduce legislation to protect pain patients, doctors and pharmacists who are legitimating using and prescribing painkillers. But it’s still not enough, she said.

Merandi said people in her movement are killing themselves or opting to die rather than seek medical care on a monthly basis, often veterans.

“They’re too weak to fight. They don’t want to fight. What are they going to fight for?” she said. “They’re going to come back into a life of no medication. What’s the point of living? That was Dawn. Dawn didn’t want to live.”

And even if health care providers go back to prescribing more painkillers for legitimate pain patients, it’s already too late for families like Anderson’s.

“Without a doubt, I know she would still be alive if she had the medication she needed,” Latronica said. “That was the only thing that allowed her to live functionally and manageably. When they took it away, that took away her will to live.

“She had three granddaughters and two daughters and a husband. She wanted to live. She tried. She just couldn’t do it any longer.”

Latronica said that even as her mother struggled during her final months, the fight on behalf of other chronic pain patients sustained her, gave her something to be proud of, gave her life.

“The pain community needs justice. My mom needs justice,” Latronica said. “I don’t want her death to be in vain.”

In Memory America’s Fallen

www.youtube.com/watch?v=r8c1JaAhUsw

Is the chronic pain community ON THEIR OWN TO CHANGE THEIR DESTINY ?

Another Pain Organization to Shut Down

www.nationalpainreport.com/another-pain-organization-to-shut-down-8839923.html

Another pain organization apparently is going out of business.

The American Pain Society is filing for bankruptcy and ceasing to exist in its current form.

“It’s a sad day for U.S. pain research, education, advocacy and patient care,” said Stanford’s Beth Darnall, Ph.D., in a tweet this week.

APS is the second pain organization this year to announce it’s shutting down.

The Academy of Integrative Pain announced it was closing down in February. The reasons appear to be similar.

All membership organizations are struggling with the fact that the new generation of doctors are simply joining as previous generations.

“People entering practice after training just aren’t seeing the value in joining organizations. They still want the educational materials and the networking, but much more of that can be done online these days,” said Bob Twillman, Ph.D., who ran AIPM.”

As a result, he said, there’s no need to attend big meetings at resorts or in expensive hotels which tend to attract sponsorship from companies that do business in the specialty.

U.S. Pain Foundation, the largest patient advocacy group in the country, also expressed its sadness that APS is shutting down—terming it “heartbreaking.”

“There are 50 million Americans living with #pain. Hard to believe there are so few orgs left for pain providers. When providers don’t have support and resources, it hurts patients,” US Pain tweeted this week.

One critic of the opioid companies was less charitable.

Andrew Kolodny, M.D. of Physicians for Responsible Opioid Prescribing (PROP) tweeted:

“Good riddance! Despite having many members who understood opioids were lousy drugs for chronic pain, APS took millions from opioids makers, downplayed opioid risks, exaggerated opioid benefits, and lobbied against limits on opioid manufacturer,” he said.

Twillman indicated he believes the reasons for the demise of both AIPM and APS—notably the lack of support from industry and declining membership—may existentially threaten other organizations in the future.

Calls to APS offices in Chicago were not returned.

As thirty odd state AG’s suing more and more parts of those entities and businesses involved in the chronic pain disease management.  More and more are pulling back on their support of various non profits that are advocates for chronic pain treatment and in turn those organizations are losing funding and having to fold their tent.

It all started with Siobhan Reynolds and her Pain Relief Network that was “put out of business” by being targeted by law enforcement and several bureaucratic agencies .. .which in essence forced the non-profit into bankruptcy  https://www.legacy.com/obituaries/santafenewmexican/obituary.aspx?pid=155321117

Now we have two more non profit advocacy groups that are “folding their tents” because of direct/indirect actions of the various bureaucratic agencies.

Does this mean that those in the chronic pain community are ON THEIR OWN to defend their right to appropriate medications and therapies ?  Given what has happened, it is probably best that any non-profit that will be established should seek donations on a monthly basis $5 – $10 for a few million chronic painers would allow the non profit to be active and successful and not sitting on all that many dollars in reserve so that it is less attractive as a target for the bureaucrats.   They come after the non profit… the non profit sends out a notice to all those contributing to STOP… and if somehow they confiscate the $$ in reserve…  the non profit declares bankruptcy and create a new non profit because there is a legion of chronic painers willing to continue to contribute their $5-$10/month to the new non profit.  As far as the bureaucrats are concerned the agenda of the chronic painers will be like trying to catch a “greased pig”.  When the bureaucrats are using the laws against you…  you use the legal system to blunt their attempts to stop you.

A post from SIX YEARS AGO.. has anything changed for the better ?