Prescribing Task Force Meeting | April 13, 2015

Posted by twinklev

Prescribing Task Force
The Medical Board of California
April 13, 2015

I’ve been apart of this Prescribing Task Force since it began. These are the highlights of the meeting as it pertains to current affairs.

Refer to UStream MBC 4-13-2015 (98:02) Monday at 9:52 a.m
http://www.ustream.tv/recorded/61075030

Jason Smith- Generation Lost
Jason’s story begins at 13:00 of MBC 4-13-2015 (98:02) Monday at 9:52 a.m.

Mr. Smith begins his story by showing us photos of what a drug addict doesn’t look like, he immediately tells us that he abused the system 10 years ago. He say’s we have a preconceived notion of what a junkie looks like as he flips through slides of street bums and obvious users in dirty clothing in underground structures. He tells us that when he was 17 years old he became hooked after a car accident. He shares how he was put on Fentanyl, Norco and Soma. He believes his addiction started from Fentanyl. He said prior to the accident he was never interested in a drug “but when this hit my system, don’t get me wrong, I loved it”.

He was never honest with his doctor because he was worried his doctor would cut him off. He does say now, he has to take personal responsibility. He says his doctor didn’t know any better that he was just trying to keep him out of pain.

Additional Commentary-

I appreciate Mr. Smith’s truthfulness to come forward and tell his story. It would be honest if more patients did the same. We know they are out there. I am glad he is alive to tell his story and help the drug abuse problem. However, I can’t hold back. It is because of patients like this who make patients like me look bad. It is doctors like his that were duped that will second guess me now. I say me because I represent many pain patients who are falsely accused and judged for someone else’s deceit.

Jason appears friendly, handsome, not what society perceives an abuser to be. He’s right about the photo’s he’s shared.

Abusers are every day people, in any community, wealthy, poor, religious, strong, weak, and of any race. It is said that certain populations are at higher risk than others. We hear that over and over again. Don’t be fooled! They are in every class of people. Most dress quite well, are physically beautiful and are not just the poor folk, they are corporate managers, they are of the populations we don’t care to consider. If you think their aches and pains are more relevent then some one elses who might be on medi-cal you are misguided by your own misconceptions.

There has to be patient provider communication. There needs to be patient assessment, risk stratification, and screenings for abuse. Labeling a pain patient a potential abuser without merit because of other people who have used and abused our doctors and themselves is unjust.

Overdose means a person didn’t take a medication as prescribed, mixed it with alcohol, or another substance. Generally addiction and abuse occurs when mis using, again not taking as prescribed. Where is the personal responsibility in all of this? It is because of patients who do these things that contribute to the negative stigma and impede in the access to care and analgesic management to responsible chronic intractable pain patients. Much more work needs to be done not just in curbing abuse, but by making sure access to proper pain care on a case by case basis in ensured.

I admire Jason for sharing his story. His honesty actually brings truth and enlightenment to what many of us have been saying all along. You’re looking in the wrong place.

Dr. Rupali Das, Executive Medical Director of the Division of Workers Compensation spoke on Workers Compensation Guidelines, prescription drug misuse and overuse, and the multidisciplinary approach that the guidelines recommend. Treating providers are required to use the Evidence Based Treatment Schedule (MTUS). Opioid Treatment Guidelines- Refer to 57:00 of MBC 4-13-2015 (98:02) Monday at 9:52 a.m. http://www.ustream.tv/recorded/61075030

Dr. Das’ intentions are decent, yet early treatments such as acupuncture, physical and occupational therapy, yoga and other interventional treatments are more often than not, denied. This leads to the progression of disability and in some cases, irreversible disease. There is no wean down program when determining a modification of medication in many situations. Injured worker’s are abruptly halted leaving them in withdrawal. Even if a patient isn’t taking an opioid medication, withdrawal is dangerous. Injured worker’s continue to deal with denials and delays.

Agenda

1. Call to Order
2. The Lost Generation – Jason Smith
3. Update from the Prescription Opioid Misuse and Overdose Prevention Workgroup –
Julie Nagasako, California Department of Public Health
4. Update from Division of Workers Compensation – Rupali Das, M.D. Depart of Industrial Relations
5. Update on Controlled Substance Utilization Review and Evaluation System (CURES) –
Kimberly Kirchmeyer
6. Discussion on Statewide Best Practices
—–
Twinkle VanFleet
Executive Board Member/Advocacy Director
Power of Pain Foundation http://powerofpain.org

In attendence with
State Pain Policy Advocacy Network (SPPAN) Fellow Leader’s
Scott Clark of the California Medical Association (CMA) http://www.cmanet.org/
Maggie Buckley of the Pain Community http://paincommunity.org/

Nicole Hemmenway, U.S. Pain Foundation.

Power of Pain Foundation Co Sponsor Assembly Bill 623

Posted by twinklev

Yesterday 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 Unveiled

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

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.

<end>

—-

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.

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

-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.

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.

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

Posted by twinklev

ADF

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.

Barby Ingle: Tamper-proof pain drugs deserve support

Posted by twinklev

: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

WHAT IS YOUR CAKE? | Barby Ingle

Posted by twinklev

WHAT IS YOUR CAKE?

Barby Ingle, President

Power of Pain Foundation

Author * Advocate * Motivational Speaker

480-882-1342 barbyingle@powerofpain.org

Movie Info:

http://cakemovie.net

https://twitter.com/CAKEtheMovie

https://www.facebook.com/cakemovie?ref=hl

What is CAKE? CAKE is something that you can’t do because you are in pain but wanted to accomplish. When I started to watch this movie, I came in with biases of people in the pain community saying how it was all about addiction and not much on chronic pain. Those people had not yet seen the film. So, I got out may paper and pen and decided to take notes. I thought this movie was a great representation of what I see and hear from millions of pain patients across the United States. This movie is one of the best, in-depth depictions of what we deal with on a daily basis as patients. Here is what I saw in the movie.

I saw the reality of what I have been living with since September 26, 2002 after an auto accident that led me to have no choice but to live with chronic pain. The main character, Claire shows the challenges of living with pain. Her symptoms matched many of the symptoms that I have dealt with on a daily basis. With not only showing the pain that sometimes makes you scream out. They also did a great job showing the loss of energy, balance -coordination issues, body temp regulation problems, depression & anger, dystonia, loss of appetite and vomiting, memory issues (reminders about reminders), and sleeping problems.

The movie also gives a great perspective on some of the treatment options that are available. Claire went through so much to get out of pain, but to no avail. She had to find ways to cope. They showed a wide variety from invasive surgery, medications (not just opioids) but other medication, and aqua therapy. They showed less invasive tools that can help with the coping of life with chronic pain; quiet/dark room or house, music therapy, and even turning to other substances like alcohol.

This movie shows a woman who is processing her own chronic pain from physical injuries, but takes it even further. The script writer was cleaver enough to have the character Claire use of her friend who committed suicide to help process the situation and tell her story (it was easier for us as viewers to follow verses a woman talking to herself, it put a face to the story of the person who committed suicides story). I can say for myself losing over 50 friends in the past 12 years who were living in pain I know how much of a struggle this is and how delicate it is to navigate with those of us still living and fighting this daily battle. We are in a way relieved that our friend is out of pain, but at the same time sad that we are here on earth – left behind. We see how great it would be to be out of pain for eternity, but know that we have a purpose here and it is not our time to go.

CAKE reminded me of a few important lessons. First, you can’t get better by working harder, you have to work smarter. We need to figure out how, where and on what we want to spend our energy pennies[i]. Second, people who don’t live in pain want to know how we do it. We typically say moment by moment, or I don’t know how I do it. We find a way. We negotiate with ourselves to do what must be done, what needs to be done. Does that mean we get to do all we want to be done? No. Does that make us less of a person? No. Thirdly, people in pain take less life for granted. The closet scene where she takes out only a little bit only to make a messy pile outside the closet. That was a step. That was an accomplishment in the daily life of a chronic pain patient. We are not asking for people to save us, we are working to save our energy pennies for what is important in life while still maintaining a life of whatever sort we can muster up.

Opportunity to join Advocacy Committee

Posted by twinklev

As the Committee Chairwoman for Advocacy, I would like to emphasize the importance of connecting a unified populace for better access to care.

Our community constitutes a commonwealth of patients with various diseases and who are in various stages of their illness. The Power of Pain Foundation
advocates for several different distinctive medical conditions.

I am now seeking applicants from those interested in joining my committee. These are all volunteer positions. Since I am diverse, I prefer those choosing to
work with me to be also. I appreciate diversity and so does the Power of Pain Foundation.

If you are ready to help work on access to care, abuse deterrent formulations, prior authorizations, specialty tier’s, step therapy/fail first and other
issues that we can tackle together, please contact me.

I am passionate about my role as Advocacy Director. I am seeking 7 individuals who aren’t afraid to raise their voice when needed.

1- Legislative and Advocacy Assistant (National)
1- Research (National)
1- CRPS/RSD (National)
2- Neuropathy/Nerve (National)
2- Help oversee my Region. Region 1 (NW) including Alaska, California (Northern), Idaho, Montana, Oregon, Utah, Washington, Wyoming

While a pain related illness with experience and knowledge is a plus, it is not necessary.

Email me: Twinkle.CA@powerofpain.org

With the position you are interested in, Tell me about yourself and how can we help each other to help others?
List any experience. Please don’t over-think it.

Together, we can!
~Twinkle VanFleet
Executive Board Member/Advocacy Director Power of Pain Foundation

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

Posted by twinklev

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

August 19, 2014 at 8:08am

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:

Help define ADF technology. States need advocates to help define ADF based on FDA guidance.
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.
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.
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

2014 National P.A.I.N. Summit ATTEND IN PERSON OR ONLINE – FREE

Posted by twinklev

Power of Pain Foundation is hosting a charity event at the Chandler Center for the Arts on November 14, 2014.

Its education by day and entertainment at night…

Please let your group members know about this great twofer event… 2 events, 1 date, 1 location.

The 8th Annual P.A.I.N. Summit (Preparing Against Intrusive Neuropathy) hosted by the Power of Pain Foundation. This event provides a great avenue to pain education for providers, patients and their caregivers. This year’s conference consists of an exhibit area and educational sessions that focus on better diagnosis and treatment options for pain patients, motivational presentations, chronic pain issues (as a whole) and an integrative approach to pain care. From 9am-5pm
RSVP FREE via Eventbrite: http://www.eventbrite.com/e/pain-summit-tickets-11811537627?aff=efbevent

Comic Pain Relief featuring hypnotist, Tom DeLuca. Tickets at: http://chandlercenter.org/performances/1114.html#comic Doors open at 6pm Show starts at 7:30. Pre-event activities: Orange Carpet, Silent Auction, Patient Talent Showcase, display of the International RSD Awareness Quilt Project, Presentation of the Melanie McDowell Pain Awareness and Advocacy award and more. Tickets from $10.

If you have any questions please email or call me: Barby Ingle, 480-882-1342 or barby@powerofpain.org

Can’t wait to meet you there! 🙂

Faces of Pain Video 6 Presented by the Power of Pain Foundation (English and Spanish)

Posted by twinklev

The Power of Pain Foundation presents Faces of Pain 2014. The video features neuropathic information in both English and Spanish.

Faces of Pain 6th edition for Power of Pain Foundation

Thank you to everyone who participated in this video. Without you it would not have been possible. Thank you Jane Gonzales for writing the beautiful song, My Only Consolation.

Thank you Vanessa Lara-VanFleet, California Representative POPF for the translations. You did amazing as I knew you would.

Thank you Kurtis VanFleet National Youth Ambassador POPF for the unique Photo’s. One taken in West Sacramento, the other in Sacramento CA.

Thank you Barby Ingle, Ken Taylor.

Together we can! And we do!

Power of Pain Foundation is a National 501(C)(3) Nonprofit charity serving the pain citizens of America through education, awareness, social events, and access to care services.

Living With Hope: Patient Spotlights

Posted by twinklev

Featured Blog Talk Radio Host Trudy Thomas puts the Spotlight on Youth related pain and diseases. Each Monday at 4:00 p.m Pacific time/7:00 p.m Eastern.

Patient Spotlight Night to spotlight youth in pain stories of the @powerofpain youth fundraisers –

Tune in to hear about 4 different diseases and how the kids and the families are working to overcome the challenges.

Living with Hope Radio Show on the Body, Mind and Spirit Network

Listen to: Living with Hope Patient Spotlights Monday July 21, 2014

To join the shows, Call (347) 884-9691 Stay on the line to listen, press 1 to speak to the Host or Guests. You can also follow the link above and log in from your computer, use a headset and join in the chat room.

Trudy has been the Nevada Ambassador for the Power of Pain Foundation for years now.

She started her show in 2007. It has excelled to it’s ‘featured” status on Blog Talk Radio.

The Power of Pain Foundation‘s Patient Fundraiser Program for Youth offers front page exposure on POPF’s main page for those fundraising for medical related issues, treatment, equipment, life saving measures, and more for those between 0-20 years of age.

Power of Pain and Living with Hope offers parents or the youth themselves a chance to tell their stories, teaching us about illnesses we may not otherwise know of, raise awareness in new areas, learn more about illnesses that we do, and show these parents, children, pre teens and teens, we care.

If you know someone who qualifies, please contact us

POPF National Youth Ambassador, Kurtis VanFleet Kurtis@powerofpain.org

Feel welcome to contact me also.

Trudy is also live Friday morning’s at 9:00 a.m PST. Each show is pain related, whether holistic or conventional. There is always something to learn. Episodes are archived, available to listen to and ready for download.