ACLU-NH, state medical society look to block DEA access to prescription drug records

ACLU-NH, state medical society look to block DEA access to prescription drug records

https://www.unionleader.com/news/courts/aclu-nh-state-medical-society-look-to-block-dea-access/article_eab66edb-ffa8-5579-82bf-3c5a1c118b4b.html

The American Civil Liberties Union of New Hampshire and the New Hampshire Medical Society filed a brief in federal court Wednesday, saying the state should continue to fight a request made by federal law enforcement for access to the state’s prescription drug database.

The brief, also filed by the national ACLU and four other ACLU affiliates, is part of the federal case U.S. Department of Justice v. Jonas, and explains that not only are these types of searches unconstitutional, but they can also have adverse consequences and deter patients from receiving needed medical care.

“The State of New Hampshire is sticking up for the privacy rights of all Granite Staters, and we are proud to stand with them,” said Henry Klementowicz, staff attorney at ACLU-NH. The federal Drug Enforcement Administration (DEA) “cannot ignore state law and request these sensitive records with an administrative subpoena instead of a signed warrant. That’s not the New Hampshire way, and we are proud to stand with the New Hampshire Department of Justice to protect patient rights.”

New Hampshire, along with 48 other states, the District of Columbia and Puerto Rico, has established a statewide Prescription Drug Monitoring Program (PDMP), a system allowing physicians and pharmacists to look at a patient’s past prescriptions for medications that have addictive potential. State law prevents law enforcement agents from accessing the database unless they have a search warrant signed by a judge.

“The DEA’s most concerning argument in this case is that medical patients have no reasonable expectation of privacy in their prescription records. The medical community rejects this view,” says James Potter, executive vice president of the New Hampshire Medical Society. “Not only is this argument legally incorrect, but it undermines why medical confidentiality is so important. Protecting patients’ medical information is essential to ensuring that patients feel comfortable to seek medical care from health care providers. Patients who trust their health systems to protect their data receive better outcomes. Maintaining patient privacy is also essential to protecting our patients’ dignity.”

The dispute involves a subpoena New Hampshire received last June from the DEA seeking two years’ worth of a patient’s PDMP records. The state Attorney General’s office refused to comply, claiming that doing so would violate state law and infringe on privacy rights. The DEA sued in court, with the state’s Attorney General arguing the subpoena was improper under federal law and the Fourth Amendment to the U.S. Constitution.

“Our medical records can reveal our most sensitive and private details, which is precisely the kind of information the Fourth Amendment is intended to protect,” said Nathan Freed Wessler, staff attorney with the national ACLU’s Project on Speech, Privacy, and Technology. “Requiring a search warrant for law-enforcement access to our private health information isn’t just good Fourth Amendment law; it’s good policy. Robust protections against unjustified police searches of prescription-monitoring databases help ensure that the opioid addiction crisis is primarily addressed using public health tools, not a broken criminal justice system.”

What if we talked about physical health the absurd way we talk about mental health?

Oklahoma Pain Patients Voice Concerns Over Opioid Trial

News9.com – Oklahoma City, OK – News, Weather, Video and Sports |

Oklahoma Pain Patients Voice Concerns Over Opioid Trial

https://www.news9.com/story/40585476/oklahoma-pain-patients-voice-concerns-over-opioid-trial

CLEVELAND COUNTY, Oklahoma – The historic opioid trial has entered week two in Cleveland County. Monday, attorneys for the state of Oklahoma presented documents to try and prove Johnson and Johnson promoted the use of opioids while downplaying the risks.  

Pain patients who currently rely on opioids are among those watching the trial closely.

Oklahoma has a large and increasingly vocal group of pain patients who say they depend on opioids just live their daily lives. They are concerned about how the trial will impact them.

“I think it’s a witch hunt, honestly” said AJ, one of those pain patients who asked News 9 not to use her real name.

She says she’s not addicted, but she uses opioids to help her pain after a series of surgeries. She has attended the trial along with Tamera Stewart, who also relies on opioids for pain management. Both women say at this point, they don’t believe Johnson and Johnson’s marketing is any different than any other business.

“If all the other pharmaceutical companies and all the other gun manufacturers, car manufacturers, anything that anyone can or will abuse get harmed with, if they are held to the same standards maybe it would be different,” said Stewart.

Stewart even tried to explain her side to one of the state’s expert witnesses.

“We’re on opposite sides, but I think we have a lot more in common,” she told Andrew Kolodny.

Their concern – a verdict against Johnson and Johnson would further limit the painkillers they rely on or the costs of a multi-million dollar decision would be passed onto them. However, they both say they will listen to the evidence and keep an open mind.

“If they purposely withheld information that directly led to the deaths of these patients, then absolutely they need to have their feet held to the fire about that,” said AJ. 

Advocates for pain patients say they are also concerned a verdict against Johnson and Johnson will discourage companies from researching other pain relief options.

Senate committee focuses on pain sufferers denied painkillers amid opioid crisis

Senate committee focuses on pain sufferers denied painkillers amid opioid crisis

https://www.foxnews.com/health/chronic-pain-patients-opioids-senate-committee-hearing

As the national focus on the opioid crisis centers on cracking down on overprescribing practices and addressing addicts, Sen. Lamar Alexander, who chairs the upper chamber’s health committee, is putting a spotlight on a critical side of the debate that has been neglected — people who suffer chronic debilitating pain.

The veteran Tennessee Republican lawmaker is holding hearings — one was in February, and another may take place this summer — to hear from sufferers of debilitating pain, who in the last two years have reported being forcibly tapered down or outright abandoned by doctors who had been treating them.

The senator said he is determined to expand the focus on opioids at the same time other federal and state officials have begun to acknowledge that many doctors are taking drastic and medically dangerous steps out of fear of being targeted by authorities in the current anti-opioid climate.

The result is what public health experts are calling a “pain crisis,” with numerous patients across the country being undertreated for intense pain that has driven many to consider or carry out suicide, and others to turn to heroin.

“As we address the opioid crisis, we must keep in mind the millions of Americans who are in chronic pain,” Alexander said in an email to Fox News.

Alexander said that the next hearing before the Senate Health, Education, Labor and Pensions Committee will take up a federal task force’s just-released recommendations on how to balance the needs of pain patients against policies tightening opioid prescription practices. The task force is an advisory committee of the Department of Health and Human Services that was authorized by the Comprehensive Addiction and Recovery Act (CARA), which was signed into law in July 2016.

“I am grateful for the work of this task force, and I’m reviewing the final report,” Alexander said. “Earlier this year, the Senate health committee held a hearing on the causes of pain and how we can improve care for patients with pain. I plan to hold another hearing this year to discuss the recommendations of the task force.”

Chronic pain patients number 50 million, and for at least half of them, prescription opioids are the only – or a crucial part of – treatment that brings enough relief to allow them to get out of bed without suffering. They are medically dependent on, but not addicted to, legal opioids.

But the drug overdose epidemic that has claimed tens of thousands of lives has resulted in a sweeping war on prescription painkillers, even though most of the fatalities or emergency room cases have involved black-market opioids such as illicit fentanyl and heroin.

“The main impetus for the hearing,” Alexander told Fox News in a telephone interview, “was knowing that in a country where you have more than 50 million Americans who have chronic pain, and 20 million who have high-impact chronic pain, when you put in concerted efforts to take away the most effective painkiller for them, you’re going to have trouble.”

Alexander said it’s been eye-opening to learn about the unintended consequences of hardline actions to address the overdose epidemic.

“There’s no doubt that the goal was not to end the use of opioids, which are effective painkillers,” Alexander said. “Our goal was to stop abuse of opioids, which was caused by overprescribing by doctors or diversion by people who got their hands on opioids and used them for the wrong purpose.”

At least 33 states have enacted some type of legislation related to prescription limits, according to the National Conference of State Legislators. Many of the policies and regulations put into place have been based on a since-revised 2016 guideline by the Centers for Disease Control and Prevention (CDC) that was meant as a resource, not a mandate for primary care physicians prescribing opioids to patients who were taking them for the first time.

Earlier this month, both the Food and Drug Administration (FDA) and the CDC warned doctors not to abruptly stop prescribing opioid painkillers to patients who are taking them for chronic debilitating pain, generally lasting more than three months.

The FDA is also amending labels on opioids that inform doctors how to taper them.

“We found that there was a good deal of misunderstanding about what the CDC guideline was intended to do,” Alexander said. “They’re not supposed to be a substitute for an individual doctor’s decision about what the appropriate prescription is for a patient. We have this problem when the federal government or a government agency issues guidelines, they suddenly become ‘law.’ People become afraid. You have insurance companies refusing to reimburse for opioid prescriptions. It’s easier just to follow [the guidelines] rather than make your own decision.”

In legislation he has co-sponsored to combat the overdose epidemic, Alexander said, “We resisted federal rules on opioid prescription limits…It was the wisest thing we did in the entire legislation. That’s why our hearing [in February] was important and why another hearing, on the HHS task force review and possible revision of the CDC guidelines, [is] in order.”

“Now that we have started to turn the train around and head in a different direction on the use of opioids, everyone – doctors, nurses, insurers, and patients – will need to think about the different ways we should treat and manage pain,” he said.

Though they are an accepted tool to treat severe pain from serious injuries, surgery and cancer, opioid medications can be addictive and dangerous even when used under doctors’ orders. Prescriptions have fallen in the U.S. by nearly a quarter since peaking at more than 255 million prescriptions in 2012.

But health care experts and pain patients argue that targeting legal opioids has done nothing to solve the overdose fatality rate, which has continued to rise.

One of the most often-heard complaints by prescribers about why they are undertreating or abandoning pain patients who long have been given opioids for their conditions is that they fear the Drug Enforcement Administration (DEA) coming after them, which has been happening with more frequency when the agency suspects that a doctor may be prescribing beyond what is necessary.

The DEA did not respond to requests for comment, but in past interviews, told Fox News that contrary to the criticism, they are not gunning for doctors or other prescribers.

Alexander said that requesting DEA officials go to the next hearing to respond to the criticism of prescribers and explain how they decide whom to pursue “seems to be in order.”

Texas Medical Board President Dr. Sherif Zaafran, who served on the HHS task force, said it would be an important move for Alexander to have DEA officials testify.

“It would be very helpful if the hearing and Congress hold them accountable,” Zaafran said. “Doctors know they’re prescribing correctly, but they’re afraid to keep prescribing. They say ‘Yeah, but the DEA comes on my neck.’ It creates a lot of confusion, the DEA puts them in a bind, the DEA is practicing medicine without a license.”

“Congress can direct the DEA to work more closely with state regulatory agencies,” he said. “There has to be clear direction to make sure patients’ needs are balanced with illicit use of drugs that are out there.”

Many pain patients, along with the doctors who treat them and advocacy groups — long frustrated by discussions about prescription opioids that excluded their voices — are starting to feel optimistic that their experience with painkillers as being safe and crucial to their ability to have a quality of life is finally gaining attention.

“Things are really starting to shift,” said Kate Nicholson, a former federal prosecutor who credits her opioid treatment with allowing her to function after years of being bedridden. “There’s the work of the HHS task force, the HHS, and other federal agencies saying there’s a problem with the CDC guideline.”

“Senator Alexander has been a leader on the issue, he’s courageous, he’s been willing to hear from people with chronic pain,” said Nicholson, who has met with the senator’s aides about the issue.

Earlier this month, both the Food and Drug Administration (FDA) and the CDC warned doctors not to abruptly stop prescribing opioid painkillers to patients who are taking them for chronic debilitating pain, generally lasting more than three months.

The FDA is also amending labels on opioids that inform doctors how to taper them.

Does this mean that the FDA still suggests that pts be “properly tapered” from opiates ?

The DEA did not respond to requests for comment, but in past interviews, told Fox News that contrary to the criticism, they are not gunning for doctors or other prescribers.

Alexander said that requesting DEA officials go to the next hearing to respond to the criticism of prescribers and explain how they decide whom to pursue “seems to be in order.”

Does Senator Alexander really expect the DEA representative to actually TELL THE TRUTH ? Anyone believe DEA’s response to past Fox interviews that “they are not gunning for doctors or other prescribers “

Just like DEA’s opinion/belief is their version of “probably cause” to raid a prescriber’s office and shut down the practice.. throwing hundreds or thousands of legit chronic pain pts TO THE CURB.

Unless Senator Alexander makes the DEA representative being “under oath” … does anyone really believe that he is expecting THE TRUTH ?  Of course, how many times have DEA agents been caught breaking our laws – and NO CONSEQUENCES for doing so.   After all, who is going to prosecute them.. .their boss the Federal Attorney General ?

 

Contact Form  Senator Lamar Alexander

Note: Fields marked with an * are required.

This form is for correspondence only.  To request a meeting with the Office of Senator Lamar Alexander, please fax your request to (202) 228-3398, ATTN: Scheduler.

https://www.alexander.senate.gov/public/index.cfm/email

Hallelujah Veterans Version

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.