COMPLEX REGIONAL PAIN ASSOCIATION HOSTS 4^TH 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 

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 *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

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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 “

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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.

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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.

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Portage 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

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www.youtube.com/watch?v=r8c1JaAhUsw

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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.

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https://www.apnews.com/f311f61e42684838bb5fd52a4b486215

A half-price version of Eli Lilly’s popular Humalog insulin is now available, following the company’s promise in March to offer diabetics a more affordable option amid fierce criticism of soaring insulin prices.

Lilly, one of the three top insulin makers, said Wednesday that it has begun selling its own generic version of Humalog U-100 under the chemical name insulin lispro.

The Indianapolis drugmaker said insulin lispro will cost $137.35 per vial, or $265.20 for a package of five KwikPens, an easier-to-inject option.

Those figures are half the list price Lilly charges for Humalog. The fast-acting insulin, which diabetics inject shortly before each meal, is used by about 700,000 Americans.

Lilly said the biggest savings will go to patients who are uninsured, have high-deductible health insurance or have Medicare Part D plans.

Insurers generally pay drugmakers far less than the list price, but many patients must pay a percentage of the list price or the full amount until they meet their health plan’s annual deductible.

Because insulin lispro is identical to Humalog, pharmacists will be able to substitute the half-price generic. However, Lilly noted that some patients will still pay less for Humalog than insulin lispro, depending on their insurance plan.

Patients with diabetes don’t produce enough insulin to control their blood sugar, or their body uses insulin in efficiently, forcing them to inject the hormone, usually several times a day.

The average insulin price nearly tripled from 2002 through 2013, and prices have risen 10% or more a year since then, forcing many diabetics to ration their insulin. Some have ended up in hospitals and a few have died as a result, which has led to congressional hearings on the issue.

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DEA and U.S. Attorney in the Western District of Louisiana announce settlement with drug distributor

https://www.therolladailynews.com/news/20190524/dea-and-us-attorney-in-western-district-of-louisiana-announce-settlement-with-drug-distributor

Morris & Dickson Company LLC has agreed to pay the United States $22 million in civil penalties to resolve claims that it violated the Controlled Substances Act by failing to report suspicious orders of hydrocodone and oxycodone, announced Drug Enforcement Administration Special Agent in Charge Brad L. Byerley and United States Attorney David C. Joseph.

“The failure to report suspicious orders as required by federal regulations contributes to the opioid epidemic, which has caused devastating harm to individuals and our communities,” said Special Agent in Charge Byerley. “The settlement with Morris & Dickson demonstrates the resolve by DEA to use all available tools to address this crisis at every level and reduce the availability of highly addictive, dangerous drugs.”

“The fight against opioid abuse is among our nation’s most pressing law enforcement and public health initiatives,” said U.S. Attorney Joseph. “Opioids are now the leading cause of accidental death in the United States – killing approximately 130 Americans every day. About 40 percent of these deaths involve prescription drug abuse. This settlement demonstrates the Justice Department’s continued commitment to use all of the tools at its disposal to stem the opioid epidemic. Louisiana citizens should know that my office and our local DEA agents will continue to investigate and aggressively prosecute any manufacturer, distributor, pharmacy or doctor who, whether negligently or intentionally, fail in their duty to appropriately control the distribution and use of these deadly drugs.”

In addition to paying $22 million in settlement funds, Morris & Dickson also agreed during the course of the negotiations to make significant upgrades to its compliance program by investing millions of dollars to hire additional staff and implement new protocols and standards to ensure compliance with federal regulations requiring them to report suspicious orders of controlled substances.

This settlement arises from a DEA Office of Diversion Control investigation into Morris & Dickson’s failure to report suspicious orders of hydrocodone and oxycodone. Since January 2014, DEA Diversion agents have identified more than 12,000 allegedly suspicious retail pharmacy orders that should have been reported. Under the Controlled Substances Act and its implementing regulations, distributors are required to report suspicious orders to the DEA. Reporting suspicious orders and maintaining effective controls against diversion of controlled substances are critical components of the government’s effort to stop the illegal distribution and sale of opioids.

Morris & Dickson is the largest privately owned wholesale pharmaceutical distributor in the United States and the fourth largest wholesale distributor in the country, reporting total revenues of over $4 billion in its fiscal year ending Jan. 31, 2018. Since January 2014, Morris & Dickson distributed controlled substances to approximately 800 retail pharmacies across 17 states, distributing over 600,000,000 dosage units. Morris & Dickson services hospitals, alternative and other health care providers, and retail pharmacies out of its Shreveport, La., facility.

The Centers for Disease Control and Prevention estimates that more than 630,000 Americans died from drug overdoses from 1999 to 2016. In 2016 alone, approximately 42,000 people died of opioid-related causes. The number of opioid-overdose deaths has reached epidemic proportions: In 2016 there were five times as many such deaths as there were in 1999.

To report suspected opioid-related crimes, the public is encouraged to contact the DEA at www.deadiversion.usdoj.gov/tips_online.htm.  

Stool Pigeon Hyperlink ——–> www.deadiversion.usdoj.gov/tips_online.htm.  

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