A Call for Action- 2016

A Call for Action 2016

By Twinkle VanFleet

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‎Since 2012, the estimated rise in addiction and opioid related abuse was an astounding 26.4 to 36 million people throughout the world. The accidental overdose of prescription related deaths were 4 times the amount of similar deaths in 1999.[1] According to the National Survey on Drugs Use and Health, 70 percent of all people who abused prescription analgesics got them from friends or relatives while 5 percent got them from a drug dealer or the internet.[2] While most of the focus has been on patients abusing their medications we must not lose sight that the majority of these patients take their medication as prescribed. The  negative innuendos influence the positive conclusion that long-term opioid treatment does in fact give quality of life to not only cancer patients, but non-cancerous chronic pain patients whose pain cannot be controlled any other way.

In an effort to deter abuse and/or misuse in patients, family, friends or associates, decrease the value in street sales, reduce the drug epidemic in certain populations, abuse deterrent formulations (ADF) are beneficial step forward in the diversion of the prescription drug issue.

OxyContin, Nucynta ER, Opana ER, Oxecta, Embeda, and Targiniq each contain abuse deterrent formulations (ADF) or tamper deterrent formulations (TDF). The most common form of abuse is by swallowing the medication. Other forms are chewing, swallowing, snorting, ingesting, inhaling, and injecting for the fast acting euphoric effect. Naloxone is a narcotic that reverses the effects of other narcotic medicines and can be used to treat drug overdose in emergency situations. Naltrexone hydrochloride blocks the effects of opioids by competitive binding (i.e., analogous to competitive inhibition of enzymes) at opioid receptors. Naloxone and Naltrexone are both opioid antagonists and each conclusively block the body from experiencing the opiate and related endorphins. This occurs by binding of the opioid receptors with higher than affinity than agonists, but do not activate the receptors.

TDFs will protect people who decide to modify the medication’s original form by removing the opioid for prompt use and abuse. Otherwise, extraction acts quickly and the time it takes to produce its effects can be immediate.[3]

ADF’s contain ingredients for safer distribution. Patients would continue to receive the management of pain and physicians would be less likely to stop providing access to pain care.

Not all patients should be diverted to ADF or TDF by their physicians. Patient Evaluation and Risk Stratification should be utilized to mitigate potential risks. Pharmacies and insurance companies should not be allowed to replace an Abuse Deterrent Formulation prescription opioid for a similar generic non ADF opioid. The prescription drug abuse issue has brought an adverse impression onto honest patients with incurable and intractable chronic pain syndromes and diseases and has left some pain professionals feeling perplexed.

With the continued development of these safer opioid medications we are contributing to the future of better health and pain care practices. Pain patients must remain a high priority in the midst of the current and ongoing concern that prescriptions will likely be misused or abused. It is imperative that patients be assessed on an individual basis and not as an assumption to the status quo.

We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drugs and opioid abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic intractable pain patients in mind.

Patients are being labeled for their chronic pain identity. In the last year or more they have not been receiving their medication management either by their physicians, insurance or pharmacy. In one instance, I was informed that a patient with no history of abuse was being referred to what seemed a drug rehabilitation program in order to get her medication. If she did not comply, she would not receive.

Another gentleman, previously prescribed Suboxone for pain management, now cannot receive opioid managed care because the information in his Prescription Drug Monitoring Program insinuates prescription drug abuse.

Steps need to be taken to ensure that notes are added to the PDMP/CURES database on individuals. Suboxone itself is only an implication without verification for what the medication was prescribed for.

On behalf of those who need, not want, but need medication to sustain quality of life, I call upon our legislative leaders to be proactive in this area.  Help stop the abuse without penalizing those of us who are able to live at least a modicum of life due to the effectiveness of these prescription pain medications.

Think about it,  as if you’re needing to… no! really needing to, begging to, ease your Mama. Close your eyes and imagine.

I call on you to not make any compromises for a standard not yet met.

  1. America’s Addiction to Opioids: Heroin and Prescription Drug Abuse. Nora D. Volkow, M.D. May 14, 2014.

Senate Caucus on International Narcotics Control. NIH National Institute on Drug Abuse

http://www.drugabuse.gov/about-nida/legislative-activities/testimony-to-congress/2014/americas-addiction-to-opioids-heroin-prescription-drug-abuse

  1. 2. Prescription Drug Abuse. Office of National Drug Control Policy

http://www.whitehouse.gov/ondcp/prescription-drug-abuse

  1. 3. Tamper-Deterrent Opioid Formulations: Who Needs Them, and at What Cost? Robert Twillman, PhD. Pain Practitioner

http://www.aapainmanage.org/resources/articles/tamper-deterrent-opioid-formulations-who-needs-them-and-at-what-cost/

Twinkle VanFleet, Sacramento resident, pain patient, Executive Board Member and Advocacy Director for the Power of Pain Foundation.

Written Thursday, ‎December ‎04, ‎2014

Updated Wednesday October 14, 2015

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Power of Pain Foundation Co Sponsor Assembly Bill 623

california-sacramento-state-capitol-1Yesterday the Power of Pain Foundation Co-Sponsored AB 623 with Assembly Member Wood at the California State Capital in Sacramento where the bill was officially introduced.  I spoke on behalf of both pain patients and opioid abuse. In attendance with me and on behalf of POPF and the bill was Erik VanFleet, Kharisma VanFleet, Debbie Ellis, and Brandy Ellis.

Speaking at the event was: Assemblymember Wood (author), Assemblymember Levine, Mendocino County Sheriff Tom Allman,  Ralph A. Cansimbe, Chapter Commander PFC Alejandro R. Ruiz Chapter, American G.I. Forum, Representatives from bill sponsors US Pain Foundation, Power of Pain and American Chronic Pain Foundations and the CA Academy of Physician Assistants.

Legislation to Curb Prescription Drug Deaths UnveiledAB623_March242015_POPFCoSponsorWithAssemblymanWood

Published on Mar 26, 2015

(Sacramento) – California legislators, public health representatives and law enforcement officials announced new legislation at a State Capitol news conference to curb prescription drug abuse and deaths. Assembly Bill 623, authored by Assemblyman Jim Wood (D-Healdsburg), aims to reduce prescription drug abuse-related deaths by reducing their access to those most prone to abusing them. More than 60 people die every day in the United States from prescription drug overdoses. Approximately 6.5 million people in the US abused prescription drugs in 2013, more than double those that abused heroin, cocaine and hallucinogens combined. “Narcotic pain medications, or opioids, have an important role in our health care system,” said Assemblymember Wood, who is a licensed dentist. “They provide effective relief for the millions of Americans who suffer from chronic pain. But too easily they are getting into the wrong hands.” Here’s more in this Assembly Access video.http://www.asmdc.org/wood

Watch the Press Conference on Assembly Live

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My speech-

Hello, My name is T. VanFleet, I am the Advocacy Director and Executive Board Member of the Power of Pain Foundation. I am also a pain patient myself. Through painful trial and error, my physicians and I have finally found the appropriate combination of medications to provide some relief from my debilitating symptoms. The prescription medications that I take allow me to do things that most people take for granted. Now, I celebrate small triumphs such as cooking, occasionally attending a function, and watching my grandson grow. One of the medications that helped give me my life back is a prescription opioid. A type of medication which has recently come under increased scrutiny due to heavy abuse by some.

Unfortunately, people who use prescription medications as intended can become unfortunate casualties of efforts to regulate opioid abuse, as we end up getting lumped in with those who misuse treatments. It is difficult to obtain refills,, denials and delays by pharmacists and insurance, including workers compensation leave patients in withdrawal and un-manageable circumstances including suicidal ideation.

Fortunately, there are new weapons available to help combat prescription opioid abuse which do not sacrifice the many patients who legitimately use the medications to fight pain. New “abuse deterrent formulations” (ADF) for opioids have properties that make it difficult or undesirable for someone to tamper with them. These medications are made with physical and chemical barriers, such as a special kind of coating or hardness to the pill itself, that won’t allow them to be chewed, crushed, cut, grated, ground up, or melted with water or alcohol.

The Power of Pain Foundation strongly believes that California policymakers must enact policies such as AB 623 to help develop a strong, lasting solution to the health crisis of prescription opioid abuse. We must find a balance that separates patients who truly need opioid medication to live productive lives and those who are abusing them. Responsible patients should not be punished in an attempt to crack down on prescription drug mis-use and abuse. Legislators, health care professionals and pharmaceutical companies must work together to stop opioid abuse while keeping the needs of chronic pain patients front-of-mind.

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I was honored to support this bill with Assemblyman Wood on behalf of the Power of Pain Foundation. It’s important that we assist in the prescription opioid drug abuse problem. This will help responsible pain patients get access to the care they need. Too many are denied now because of the stigma attached to their chronic pain identity. Abuse deterrent formulation’s will assist both issues.

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Press Release Article Tuesday, March 24, 2015

Legislation to Curb Prescription Drug Deaths Unveiled by Assemblyman Jim Wood

For more information on the Power of Pain Foundation’s Policy Efforts, please visit-

Power of Pain Foundation | Policy Efforts | PatientAwareness.org

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-Friday March 20, 2014 Episode of

The Burning for a Cure show

With Hosts POPF President, Barby Ingle and POPF Executive Board Member & Marketing Director and Promotions Chairman – Joeygiggles and Co-Hosts Executive Board Member and Advocacy Chairwoman Twinkle VanFleet with Power of Pain Foundation Executive Director Ken Taylor.

Discussion: Legislation- Abuse Deterrent Formulation (ADF), more  Listen Here

Out in the real world, I try not to identify as a pain patient. We will be judged. You know it, and I know it. It becomes our label. As I attempt to go forward in advocacy it can sometimes be a little awkward. Not in my physical appearance, but In my inability to speak properly, delays, memory, forgetfulness, stuttering, wake-sleep, sleep-wake. I’m heading into my 15th year with CRPS type 2. My Neurocognitive deficit seemed a rapid decline. It’s part of the story that helps me fight to go on, for my family, for you.

You have to hang on to you! It’s okay to not be perfect. It’s okay to not be your “yesterday”.

The struggle is real. We are who we’ve become.  And it really is okay in all that it is. We might not like it, but we have to learn to accept it.

POPF-CoSponsor-AB623_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015PostPressConferenceCaliforniaStateCapital

Perfection is all that you can achieve in the here and the now. Getting that shower, getting dressed, combing our hair. Those are the triumphs.

There’s so much worth in the smallest things.

I believe in you! Believe in you, too.

Thank you Barby Ingle for always believing in me and my ability even when I didn’t.

POPF_AB623_KharismaVanFleet_BrandyEllis_DebbieEllis_TwinkleVanFleet_March242015
Lets try to remember to not pre-judge a chronic pain patient on appearance or preconceived notions, but instead, assess on diagnosis, and credibility. ~Twinkle V.

Power of Pain Foundation- ADF and Access to Care

 

AZ State Capitol BuildingADF

Power of Pain Foundation recognizes that Abuse Deterrent Formulations are only a step forward
toward drug diversion. We know this isn’t the final answer. It allows an option for patients to
continue to be treated with opioid analgesics and removes many of the barriers involved in non abuse
deterrent medication.

 

POPF Pain Community Needs Assessment Survey

We are not focusing on any one treatment option, we are improving upon the patient/provider
relationship.

The purpose of our survey was to determine who is having trouble getting access to quality care.
who is being dismissed, who is being cared for by a primary physician, who is being sent to pain
management and who is having difficulty receiving ongoing pain care.

We are aware of many individuals who are not receiving proper medication management or treatment
and others who had been receiving care that are now facing obstacles.

Our goal is continued access to care. Our goal is patient empowerment.

Recent Articles

INEFFECTIVE TREATMENT ASSOCIATED WITH THE CHRONIFICATION OF PAIN by Barby Ingle
http://www.lynnwebstermd.com/ineffective-treatment-associated-with-the-chronification-of-pain/

BARBY INGLE ON CHRONIC PAIN AND OPIOIDS by Barby Ingle
http://www.lynnwebstermd.com/guest-post-barby-ingle-on-chronic-pain-and-opioids/

The Unintended Side Effects of Fighting Prescription Drug Abuse by Twinkle VanFleet
http://www.californiaprogressreport.com/site/unintended-side-effects-fighting-prescription-drug-abuseTwinkleV_SB1258

 

 

 

 

 

 

Barby Ingle: Tamper-proof pain drugs deserve support

http://www.desertsun.com/story/opinion/contributors/2015/02/28/ingle-pain-medication-%20tech/24144627/
With the Power of Pain Foundation as a sponsor of the new bill AB 623 on Abuse Deterrent
Formulations, the above article  Op-Ed by our President has special significance being published 2/28/2015.
#RareDiseaseDay http://www.rarediseaseday.org/

Our President also wrote articles for for WA, NV, AZ, and CA.
She wrote letters to legislators in MD, MO, UT, CO, AZ.
BarbyIngle-FillYourPrescriptionOfHope
We are committed to you!

 

Power of Pain Foundation Advocacy Committee
Twinkle VanFleet, Board Member, Advocacy Chariwoman

Barby Ingle: Tamper-proof pain drugs deserve support

:04 p.m. PST February 28, 2015

It’s no secret that the abuse of pain medications has led to a growing public health problem across the country. The numbers are alarming, and they are growing.

But also alarming is the number of people who suffer with chronic pain, including many who come to the desert seeking the arid climate for relief.

The problems are complex and multi-layered and I always applaud solutions that help to balance pain management with the cost that prescription drug abuse has on society. Promising technological advancements in recent years are proving to be an important part of the battle. Among these are so-called “abuse deterrent formulas” of commonly prescribed narcotic painkillers that are being developed to prevent some of the most deadly forms of pain pill abuse.

Since 2002, I have been battling Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body. I know firsthand how difficult the journey for relief can be, particularly the sidelong glances and disbelief from medical professionals. One in three people (116 million) in the United States are affected with a condition that causes pain.

But what if there were medications that can offer pain sufferers relief, while also protecting those who might be prone to abuse them?

There are. These little known, new tamper proof formulas of strong narcotic pain medications provide patients with the same pain relief as conventional opioids, while incorporate breakthrough technology designed to protect against tampering and abuse.

Several states are considering legislation this year to improve and safeguard patient access to these new formulas of painkillers.

Abuse-deterrent formulations have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress, and the National Association of Attorneys General — including California Attorney General Kamala Harris.

Abuse of pain medications has led to a growing public health problem in California and nationwide. Each year approximately 4.5 million Americans use prescription pain medications for non-medical purposes, contributing to more than 16,000 deaths annually.

This technology is only part of the solution; but it is a solution nonetheless. Patients that have struggled with addiction or substance abuse in the past, those who live with others who are current or recovering addicts and those who live with teens or young adults who may seek opioids for recreational use can all benefit from ADFs.

Abuse-deterrent formulations have received widespread support as part of a comprehensive effort to combat prescription drug abuse and promote appropriate pain management, including support from the Office of National Drug Control Policy, the Community Anti-Drug Coalitions of America, members of Congress and the National Association of Attorneys General.

To date, the Food and Drug Administration (FDA) has approved abuse-deterrent labeling for four drugs, with other abuse-deterrent opioids in various stages of development.

For the sake of those with legitimate, life-altering pain and for the safety of those prone to use these medications for non-medical use, I urge our lawmakers to stand up for policies that preserve and improve patient access to this new technology. Failing to do so would be failing to do all we can to protect our residents.

Barby Ingle is a chronic pain educator, patient advocate and chairman of the board for the Power of Pain Foundation.

via Barby Ingle: Tamper-proof pain drugs deserve support.

Another excellent article “urging our lawmakers to stand up for policies that preserve and improve patient access”. With the Power of Pain Foundation as a sponsor of the new bill CA AB623 on Abuse Deterrent Formulations addressing Opioid Abuse, this Op-Ed by our ‪#‎POPF‬ President has special significance being published today, ‪#‎RareDiseaseDay‬

Abuse Deterrent Formulations (ADF) Allow People in Pain Better Access to the Medications They Need

Abuse Deterrent Formulations (ADF) Allow People in Pain Better Access to the Medications They Need

By Ken Taylor, Executive Director

Power of Pain Foundation

7/7/14

I have been an advocate for people in pain for eight years. I’m also a caregiver. Over the years, I have noticed a shift in the discussion of opioids; it seems less about patients who use them properly and more about the possibility of abuse. Opioids remain an important option in the treatment of chronic pain,but even patients who take medications as prescribed may feel their access to opioid analgesics restricted.

People in pain need safe, effective and accountable access to the proper medications. While providers, pharmaceutical companies and the Food and Drug Administration (FDA) continue to address abuse issues while ensuring appropriate access to opioid analgesics, there is more that can be done.

An important step is the creation of safer opioid analgesics.Referred to as Abuse Deterrent formulations (ADF), these opioids are developed and formulated to resist alteration and therefore deter abuse. The FDA considers the development of these products a high public health priority. And I agree.

Four Ways to Ensuring Proper Access to  Care

Strong and lasting solutions to the opioid health crisis depend on state and national pain policy. I encourage the pain community to help ensure that access to care remains a high priority for the millions of patients who need and take medications responsibly. As advocates, we can:

  1. Help define ADF technology. States need advocates to help define ADF based on FDA guidance.
  2. Support and create legislation which allows non-ADF products from being substituted by pharmacists for ADF,without approval of the prescribing health professional. This legislation should ensure that unless the substituted opioid is also a non-ADF or consent is obtained from the prescribing health professional, a pharmacist would be prohibited from substituting another opioid for an ADF.
  3. Advance patient safety. State legislation should place a high priority on ADF opioid market places where more ADF treatment options exist; and pharmaceutical companies should create these safer medications making them more readily available for pain patients.
  4. Support the removal of barriers to non-opioid therapies as a first line of treatment for pain.

As a leader in the pain community, I work hard to provide access to care for people in pain. I encourage patients and caregivers to learn more about ADF and pain legislation. I hear from patients around the country almost daily who are having trouble filling prescriptions as written. ADF’s can be a step in the right direction. There is a balance between safe opioid use and abuse;but it will require individuals to speak up and take action.

To learn more, visit www.powerofpainfoundation.org

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