Tuesday, December 29, 2015

A Passion for Compassion




Let’s take a minute to take a step back in time. Imagine it’s 1997. Before the Great Recession, before the housing boom, before the tech bubble, before 9/11, before Bush stole the election, before Y2K. 1997 was a wonderful time in America. I had every reason for hope for the future. I was in college and I was on my way to a career that would both fulfill me and financially support me. I was going to make a difference!

Then I woke up in the ER. My life was turned on its head and nothing has been okay ever since. I came home after class and went to bed. My head hurt. I woke up in the ER. I came to with a phone in my hand. My mother was asking me what happened. I said I didn’t know. Sometime later a doctor came in and told me, “You had a seizure, you have epilepsy, we don’t know why, take these meds and see a specialist.” That was pretty much the last time an ER doctor told me something new and helpful about my epilepsy.

Since then epilepsy has been my entire life. I have researched it deeply. I could edit the wikipedia page about epilepsy. I actually might do that. Just for fun. But I digress. As it is a risk with epilepsy. My brain wanders off for a bit and I might fall down and bite my tongue. Biting my tongue is the worst, the intense pain lasts days and days after a tonic-clonic seizure. You might know it as a Grand Mal seizure, but the scientific term is Tonic Clonic. I cannot predict when it will happen.


Epilepsy has been known as The Falling Sickness or The Sacred Disease. It is one of the first diseases mentioned in Chinese Medical texts dating from BCE. I’ve read some of those texts. I wanted to know more about my medical ball and chain. I am obsessive when it comes to research. I researched the hell out of epilepsy. One of the earliest, effective, medical treatments was marijuana.


It comes up in the texts again and again. Hundreds of years of epilepsy and the one treatment I want to try is illegal. I would try anything to have less seizures. I’m in the wrong state. Epileptics in 24 other states have the chance to treat their seizures. The Pennsylvania House of Representatives are not my friends. Senate Bill 3, The Compassionate Use of Cannabis, will never get voted on in the House of Representatives. They will never give me relief from seizures. I tweet to my advocate friends online, around the world. I envy those who live in the “right states.” People ask me why I haven’t moved yet. I don’t know why. Maybe because I don’t want to sell my house. I shouldn’t have to leave my whole life behind to get medical treatment.


Thousands of Americans are having less seizures because of cannabidiol CBD oil and I could be a criminal just for trying. I wish I could somehow convince Speaker of the House, Mike Turzai, not to cry over medical marijuana legislation and bring it to the House floor, whether or not he likes it. He ran away from cannabis activists once. He cried in committee. I wish he would see someone he loves have a seizure. I don’t want to wish a seizure upon anyone, it’s the worst thing in the world. But maybe if he saw someone he loved fall down and vomit, he might have a little compassion. I wish he could understand what a seizure really is.
I slide in and out of consciousness. Sometimes I can talk and sometimes I can’t. My brain is awash with electricity and consciousness is a dream. I am trapped in my body, half-able to hear what is being said around me and about me. My words cannot come out. Nobody can hear me screaming inside. I can’t even understand everything that is being said. Semi-consciousness is weird. I hate to be called SHE when I am in the same room. “She is unresponsive.” Post-seizure brain is scared and confused and angry. Time is slow and heavy. My lips cannot yet form words. The lights pierce my brain like an ice pick.


Once I woke up in a ambulance and everything sounded scary and German or Japanese. I thought, “This must be what it’s like to be in a foreign land.” My brain couldn't make sense of the noises and voices. It was sensory overload when my brain could not process information. I wondered if I was like that man who had a head injury which caused him to speak fluent Mandarin. Maybe I lost the ability to understand English. I thought it was the time I was in car accident. I was back there again, but this time with a different result. I felt like a time traveler to a parallel universe. I survived that crash with nary a scratch. When the ambulance came they didn’t take me to a random hospital, based on whoever decided to call 911. I didn’t need the paramedics and I could tell them so. I thanked them for coming. I’m not always so lucky.


So back to 1997... Things were medically terrible, but medical marijuana was already legal in California. I figured it couldn’t be long before the rest of the country went that way. I figured I would have access to medical marijuana in Pennsylvania soon enough. It is a known, effective, treatment for seizures. I did my research, I’m an adult. I thought I would be able to make an informed decision for myself. I was wrong. The Pennsylvania House of Representatives chooses to ignore centuries of scientific evidence. They don’t trust me to trust myself.


My advocate friends in Harrisburg are hopeful. I am less than resigned. I’ve watched enough hours of LIVE Pennsylvania General Assembly to already know. Nothing is going to get done. Isn’t it next year already? Surely next year we will get compassion. I have lost all my hope for my home state. I am tired of having seizures. Sometimes I cannot remember my middle name. I slur my words and bump into things. I fall over and hit my head. The diagnosis has been the same since 1997. We don't know why you have seizures. It just happens sometimes.


I am so tired of waiting. I really thought that this would be done by now. 1997-Katie believed in the future. I don’t think that way any more. The House Republicans are happy to push us off. The sick and disabled people of Pennsylvania don’t count for much, when the Chairman of the Health Committee is being paid for by the Pharmaceutical companies.


My local district Representative supports me and medical marijuana, but his support doesn’t matter if there’s no vote. Even when SB3 makes it onto the docket, they just skip right over it, tra la la la la. Please may I introduce the Girls AAA Basketball Team from Wherever, Pennsylvania… The House has been promising and promising that it’s juuuuuuuust about to do something for years now. Next week, next month, next year… Pennsylvania is a big disappointment to me. There are rumors of up to 99 House amendments to the Senate bill that passed months ago. Everyone wants to get their fingers in on it, restricting this, removing that. It is a medical marijuana bill that doesn’t allow for smoking buds. Whatever. I’m just glad I didn’t have a seizure today. I hope to say the same...but you never can tell. I never know when I’ll have a seizure and wake up on the floor or falling down the stairs or dead.


It’s a sorry day when I consider moving to Detroit. At least Michigan has medical marijuana. The city of Detroit might be a better choice for me than the entire state of Pennsylvania. Philly and Pittsburgh are decriminalizing marijuana but that doesn’t do me any good. I should have been treating my seizures with CBD decades ago.



~ Kathryn Slagle




Thursday, November 5, 2015

URGENT CALL TO ACTION!

Patients were promised the House would vote on compassionate medical cannabis legislation this Fall. It is now November and while no language has been made public, reports about the House draft raise several serious concerns including a 10% THC cap, an explicit prohibition on dried flower and plants, and a regulatory board composed largely of law enforcement instead of medical experts and patient advocates.

PLEASE CALL YOUR STATE REPRESENTATIVE TODAY!

Let him or her know that unless these issues are resolved, Pennsylvania’s medical cannabis program will be ineffective and patients will not get the medicine that is best for their condition. You can click here to find your representative’s name and Harrisburg number. Below you will find talking points to guide your call.

The House working group passed along reasonable recommendations for the House version of SB3. Many of the flaws in the current draft do not reflect to the work group’s recommendations and lack the components that make for a successful program. We appreciate the efforts of the workgroup, and the work of many House members who are doing their best to ensure the final draft is the best possible program for Pennsylvania patients.

We encourage you, as advocates for a comprehensive medical cannabis program, to call your state representative NOW and express your concerns. Let them know that compassionate use legislation should be focused on the needs of patients and rather than arbitrary rules that reflect the misguided views and lies that stripped this medicine from patients over 70 years ago.

Urge them to tell their leadership that the current House draft needs to be significantly improved in order to create a compassionate program that won’t force sick patients to turn to the black market.

Then, please forward this to other compassionate residents of the Commonwealth. Our legislators need to hear from the 90% of Pennsylvania citizens, who according to Quinnipiac’s most recent polling, are in favor of medical cannabis.

TALKING POINTS:


THC Cap:


• Like any other medication or treatment, medical cannabis affects each patient differently. Patients should have access to the treatment that works best for them and a THC cap prohibits countless treatment options.

• High THC medical marijuana has been effective in the treatment of many conditions including severe pain and nausea and Crohn’s disease. Additionally, high THC products can be administered as a rescue medication during status seizures, and is far safer than other existing rescue meds.

• Neither SB3 nor the House workgroup’s recommendations include a cap on THC. It should also be noted that Marinol, is 100% synthetic THC and is completely legal as a prescription medicine under existing federal law.

Whole Plant Prohibition:


• Patients need access to every safe treatment option. For many patients, using dried flower is the most effective form of treatment. Prohibiting it as part of the program will force those patients to either use less effective treatments or acquire their medication through illegal means.

• Many patients who need access to medical marijuana are on fixed incomes due to disabling ailments and high medical bills and insurance will not cover medical cannabis treatment. In many cases dried flower is the least expensive form of medical cannabis.

• Neither SB 3 or the House workgroup’s recommendations explicitly prohibit the use of dried flower.

Advisory Board:


• In its currently proposed form, the advisory board must include representatives from the Department of Drug and Alcohol Programs, the Commission of Professional and Occupational affairs, the State Police, the Pennsylvania Chiefs of Police and the District Attorney’s Association. In addition, several medical professionals, whose focus is addiction, are included, but not a single patient or caregiver is included!

• While it is not uncommon for some states to include a representative from the law enforcement community on an advisory board, the majority of the board should be medical professionals, experts, and patients’ rights advocates.

• Appointing law enforcement, and drug and alcohol counselors undermines the medical applications for cannabis and stigmatizes its use as criminal behavior.



Saturday, October 17, 2015

Call for Compassion

If members of our community plan to visit a place of worship this weekend, please consider asking your faith leaders to sign on to clergyforcompassion.com to show their support for the compassionate use of cannabis. Also, please urge them to join Clergy for Compassion on Wednesday, October 21st at 11:00am at the Capital in Harrisburg. 

Below, you can read thoughts from Clergy for Compassion member and our dear friend, Pastor Shawn.


My name is Pastor Shawn Berkebile. I serve a conservative, Adams county congregation of the Evangelical Lutheran Church of America. Two years ago I joined the efforts of Campaign for Compassion and began lobbying for Medicinal Cannabis legislation. I have always believed that God calls us to speak for the voiceless, the suffering, and the hurting. However, my involvement in this particular cause started with one young girl and her family.

Annie is a nine year old girl diagnosed with intractable epilepsy. Annie’s parents and grandparents are long time members of our church and they have been doing everything imaginable to provide her with the quality of life all children deserve. It seemed that every month she was on a new medication with very few positive results. Side effects of the synthetic cocktail she was prescribed sent her to the hospital more times than aggressive seizures. It was heartbreaking to watch Annie (and her family) struggle. Of course we offered our prayers and our support, but I still wished I could do more to help. Then I learned that the one thing that could provide relief was unavailable in the Commonwealth of Pennsylvania. So I started to educate myself about the compassionate use of marijuana and I joined Annie’s parents in their lobbying effort. 

My formal involvement started with one town hall meeting about two years ago, and has continued to rallies on the steps of the Capital building, individual meetings with lawmakers, letter writing campaigns, and more. Now I am supporting a charge of clergy to pass legislation for medicinal marijuana. It started with helping the voiceless child in my congregation with epilepsy and now I see how the compassionate use of marijuana can help so many people that are struggling. 

Across Pennsylvania, there are people suffering from cancer, multiple sclerosis, ALS, epilepsy, post-traumatic stress disorder, chronic pain, and other debilitating conditions for which medical marijuana can provide significant medical benefits. With additional research and funding we can no doubt find even more ways this medicine can be used to safely and effectively treat a wide range of conditions. There are hundreds, if not thousands, of people suffering right now – in our homes, at our places of work, in line at the grocery store, and sitting in our houses of worship. People who are suffering and need effective treatment. This is why I cannot remain silent. 

Medical marijuana is providing hope for the hopeless and I want the lawmakers of Pennsylvania to realize this. The Pennsylvania Senate has been bold enough to address this issue and move legislation forward. Now it is time for action on the floor of the PA House of Representatives. 90% of Pennsylvanians support medical marijuana, yet we still see politicking and stall tactics at play. We must move medical marijuana legislation to the floor of the House for a vote.

On Wednesday, October 21st clergy and faith leaders can show their support and press our lawmakers to pass medical marijuana legislation. At 11:00am we will gather on the second floor of the Capitol Rotunda and speak in support of Senate Bill 3 and medical marijuana legislation. Along with your in-person support on the 21st, here are some other ways clergy can get involved:

 Show your support by signing the petition on clergyforcompassion.com 

 Write a letter to the editor of your local paper 

 Call, e-mail, or meet with your state representative and the representatives of your congregants.

 Get updates by signing up for alerts at mpp.org 

 Visit campaignforcompassion.com, the Pennsylvania patient advocacy group that has been the driving force behind medical cannabis legislation in Pennsylvania.







Monday, October 5, 2015

Having Faith


Faith is something that can be hard to come by these days in the fight for medical cannabis in Pa. We have fought so hard for what seems like an eternity yet still we don’t have a bill passed. We hear from inside the Capitol, read newspaper articles and watch TV news stories and the only clear message we get is that there is still no clear path to the finish line.

A small group of House members has been tasked with working through medical cannabis legislation to ensure it is “palatable” to the rest of the House. Unfortunately, while this task force works through issues that have already been vetted in the Senate, the people of the Commonwealth who need it most are still left wondering when this will be the year they will get the relief they have been waiting for.

Just a few days ago the task force released their recommendations for a medical cannabis bill in Pa. Several members from the task force requested input from Campaign for Compassion. Throughout the process of putting those recommendations together, we worked diligently to give them suggestions that were reasonable and patient focused. We were pleased to see that some of our ideas were included. Sadly, some were not. Perfect is the last word I would use to describe the list of recommendations, BUT they are just that, a list of recommendations. A jumping off point, nothing has been carved in stone. Still, with all this being said, I have to feel grateful that we have a handful of Reps that are truly dedicated to making medical cannabis a reality in Pa.

So, call me na├»ve. Call me overly optimistic. Call me crazy! But, I have FAITH that this will be our year!! We have more support than ever before. Not just “boots on the ground” support but men and women inside the walls of the Capitol building that want this to happen. They are truly in our corner. They have come to know us and our families by name. They recognize our voices when we call their offices. We have come to learn that many of them have reasons themselves to want this legislation to pass, quickly.

There are still those who oppose us, don’t get me wrong, but that number is growing ever fewer and their voices ever softer. Truth and right will always prevail in the end. Herein lies my ability to have faith. It’s not always easy and it’s not always fun but it’s always necessary.

To those who give us a reason to keep having faith, thank you!

Faith doesn’t make things easy, it makes them possible. – Luke 1:37


~Dana Ulrich



Visit our site - Campaign4Compassion.com


Thursday, October 1, 2015

Campaign4Compassion, PAMED Share Perspectives on Medical Marijuana Bill

Last month, Campaign4Compassion reached out to the Pennsylvania Medical Society (PAMED), in an effort to learn more about their organization, and foster a better understanding of their fierce opposition to medical cannabis. While we appreciated the opportunity to participate in the below exchange, we do not support the ideas expressed in their communication. C4C cannot stand with any organization that encourages suffering patients to "just wait" for FDA approved options. It is a common misconception that FDA approved means safe and effective.  We will continue to stand with patients and caregivers in need of help NOW and the medical professionals that treat them.



READ PAMED PERSPECTIVE     |     READ C4C PERSPECTIVE


PAMED PERSPECTIVE

By Karen A. Rizzo, MD, PAMED President
Who is the Pennsylvania Medical Society (PAMED), and why aren’t they in favor of medical marijuana as some have said?

Those are questions that have been asked, but not directly to PAMED until recently when Latrisha Bentch reached out and was kind enough to offer our organization this guest blogger opportunity that you are now reading. Until that offer, most involved in this issue relied on political-speak to define our organization and our position.

Let’s start off with the easier of the two questions: who is PAMED?

PAMED is a statewide association consisting of 17,000 members and growing. The organization consists of medical and osteopathic physicians, medical residents, and medical students.  We are the largest physician-led organization headquartered in Harrisburg that is committed to the good health of all Pennsylvania residents and engaged in the advancement of the practice of medicine.

Some Pennsylvania-specific issues that we’ve addressed in recent years to improve the health of all Pennsylvanians are ones that you may have seen in the news.  They include the fight against prescription drug abuse, smoke-free environments, EpiPens in schools, and health insurance access. And, yes, we do work on issues that impact the business side of practicing medicine such as credentialing and truth in advertising.

PAMED is an organization that follows a democratic process to develop positions on issues. Physician members have the opportunity via various channels to raise meaningful debate on issues from the grassroots up. These debates have the ability to ultimately develop the organization’s policy on many different issues.  At the end of the debate, positions developed come from the majority who participate.

This process is much like voting for president of the United States.  Those who participate have a say in the matter.  Those who don’t participate, but disagree with the outcome, really should participate.

And that brings me to the issue of medical marijuana.  This is not a new issue for us. It’s an issue that comes up periodically.  We’ve heard from members.  We’ve read the studies.  And, we’ve talked to researchers conducting studies.

PAMED supports reclassifying marijuana at the federal level to make it easier for research.  PAMED supports research.  And PAMED supports a thorough process of research that leads to final FDA-approved medications.

Because of this, we do want physicians to consider using medicines like Marinol that was FDA-approved as Schedule I drug for both appetite stimulation (1992) and for nausea (1985); and later moved to Schedule III in 1999. Marinol contains synthetic versions of chemicals naturally found in marijuana. Another FDA-approved medication with cannabis-related properties is Cesamet. This was reapproved by the FDA in 2006 for treatment of nausea and vomiting in patients undergoing cancer treatment.

Our hope is that other medications currently being researched will meet FDA approval soon and made available to those who suffer.

In forming our position, what we’ve been told by researchers is exactly what was reported in a national investigation by investigative journalism fellows with the News21 project from the University of Arizona.  In their recently released report titled America’s Weed Rush, the journalism teams at News21 were told by researchers in both Philadelphia and Utah who are studying Epidiolex and its impact on children with epilepsy that there’s a “need to conduct further studies before they would consider Epidiolex a valid treatment option.”

Regarding trials that America’s Weed Rush reported, GW Pharmaceuticals, the manufacturers of Epidiolex, said parents “will have a consistent pharmaceutical medicine they can trust once Epidiolex gains FDA approval.”

America’s Weed Rush also reported “But until that happens, many medical experts urge parents to wait.”

Why wait? To avoid skewed results … better and more accurate testing ... and ultimately more trustworthy medications.

Consider what’s happening in Colorado in terms of having trustworthy medications.  This was recently reported to Pennsylvania legislators by the American Epilepsy Society (AES).  In Colorado, products are not regulated for purity or uniformity like they do when they meet FDA approval.  A study by a team from Children’s Hospital Colorado found that artisanal “high CBD” oils resulted in no significant reduction in seizures in the majority of patients.  Additionally, according to AES, seizures worsened with the use of cannabis in 20 percent of cases reviewed and in some patients there were significant adverse events.

These are real cases and stories that are not being told.

The fact is families and children going to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil being prescribed, in most cases, by physicians with no training in pediatrics, neurology, or epilepsy.  Because these products are unregulated, there is no way to tell if these dangerous adverse reactions are due to CBD or because of contaminants found in artisanal preparations.

Meanwhile, desperation has led to disappointment for many families after they’ve spent large sums of money while chasing hope through a poorly designed, legislatively-built medical cannabis industry.

PAMED understands the struggle families face and we are sympathetic to parents involved with Campaign for Compassion.  We applaud each of them for their courage to step up through the legislative process, to raise awareness of this issue, and to fight for their loved one’s cause.

We also wish they would agree with PAMED that the right system to build is one that both patients and their physicians could trust.

Unfortunately, PAMED can’t support SB3 or any similar bill.  There are many problems with the approach offered by such bills that would not help in creating medications you and your physicians can trust. This has been the Colorado experience. Such bills do not take into consideration how to create medical-grade cannabis or advance research while protecting it from being skewed.

We must find a careful balance to help current children with epilepsy, while also helping children yet to be born who will also someday be diagnosed with epilepsy. This applies to all medical conditions of patients of all ages.

And that’s why PAMED, through a democratic process involving physician members throughout the state, has taken a position similar to many other medical and healthcare organizations throughout the country.




CAMPAIGN for COMPASSION PERSPECTIVE

By Lolly Bentch Myers, Campaign4Compassion
We agree with the Pennsylvania Medical Society’s (PAMED) call for marijuana to be rescheduled by the federal government.  However, Campaign4Compassion, an overwhelming majority of doctors across the country, 23 states, and the people of Pennsylvania do not think that patients should have to wait for the federal government to change their classification in order to use this plant medicinally.

Campaign4Compassion (C4C) is a grassroots advocacy group that was started by mothers of sick children and other patients to advocate for the compassionate use of medical cannabis. Our goals are to educate residents and lawmakers in Pennsylvania and to pass comprehensive, compassionate medical cannabis legislation so that all patients with qualifying conditions have access to medication without fear of criminal prosecution. 


Several national medical associations including the American Nurses Association, the American Public Health Association, the American Academy of HIV Medicine, the Leukemia & Lymphoma Society, the Epilepsy Foundation of America, and many others support the compassionate use of medical marijuana. A recent poll from the New England Journal of Medicine found that 76% of doctors would recommend medical marijuana to their patients, with 96% support from Pennsylvania doctors who participated in the poll. The Pennsylvania Medical Society claims to represent Pennsylvania doctors, but according to their own numbers only 37% of doctors in the state are current members of the group. 


While PAMED expresses their opposition to SB 3 and any similar legislation, they never provide a specific problem with the content of the bill. As Dr. Bruce Nicholson, Chief, Division of Pain Management, Lehigh Valley Health Network and member of PAMED has stated: 


“The intent of this legislation is to control and ensure that there is acceptable dosing of THC & Cannibidiol for both the therapeutic use in the patient population as well as further studies of medical cannabis regarding specific conditions. It is my opinion that the current position of PAMED is not one of constructive dialogue further identifying the potential benefits of medical cannabis."


Like many other opponents of medical marijuana legislation, PAMED stakes their position on the need for more research and FDA approval. Since 1976, there has been a congressional mandate placed on the National Institute on Drug Abuse (NIDA) to study drugs only as substances of harm. Since NIDA owns the only researchable source of cannabis in the United States, research has been slanted to find only the negative effects of these drugs. However, in other countries where laws are different, researchers have found that cannabis can be used safely within the confines of a medical program.  


Even within the United States, despite the restrictions on research, over a dozen recent small-scale Phase 2 trials support marijuana’s medical efficacy. Studies like these and research from other countries was sufficient evidence for 23 states and the District of Columbia to enact sensible medical marijuana legislation. Lawmakers, residents, and doctors in those states decided patients should not have to wait for this bureaucratic process to be changed. 


To support their claims that medical marijuana has harmed patients with epilepsy, PAMED sites the Chapman study presented to the American Epilepsy Society (AES). Out of 75 patients using medical cannabis, 57% reported improvement in seizure control with 33% reporting more than a 50% reduction in seizures. In a patient population that has only a 1% response rate to the 22 other FDA-approved antiepileptic medications, this efficacy rate is impressive. PAMED also indicates that medical marijuana was responsible for the 20% who experienced an increase in seizures. However, they fail to mention pharmaceutical anticonvulsants can also cause an increase in seizures in some patients. 


We would like to mention that although PAMED focused on pediatric epilepsy, many seriously ill Pennsylvanians could benefit from access to medical marijuana. Chronic pain, nausea, lupus, spasms related to multiple sclerosis, and Crohn's disease all have strong evidence supporting the efficacy of medical marijuana, including, in several cases, small-scale double-blind placebo-controlled trials.


We would also like to make it very clear that as parents and potential patients we know there is no guarantee that any treatment will be effective. We are only asking for access to another option by our trusted medical professionals and the patients that they treat. The diseases that we face are debilitating, life-altering and often times life threatening. We do not have time on our side.


PAMED asks us, “Why not wait”? 


To ask patients and their loved ones to wait years for the federal government to reschedule marijuana, for research to advance, for our legislature to act, is cruel. 


Why not wait? 


We should not have to wait one more minute. The people we love are suffering, and there is a safe, effective treatment that could help. Every day we wait means more pills, more hospital stays, more seizures, more pain, more tears.Now is the time to move forward on this critically important legislation.


Recently, Campaign4Compassion joined a bipartisan group of lawmakers, potential patients and caregivers inside the Pennsylvania State Capitol to demand that lawmakers stop waiting and take action.  We urged movement for patients suffering today, the ones that have passed waiting and for future generations not yet diagnosed with disease. We would have loved to have had the support of PAMED.


We respectfully request that the Pennsylvania Medical Society reconsider their position. We implore them to remember that at the end of the day, we simply don’t want to bury our loved ones knowing that there is a medicine that could have facilitated healing and a better quality of life.  


Why would anyone want to stand in the way of that?



C4C PERSPECTIVE

CAMPAIGN for COMPASSION PERSPECTIVE

By Lolly Bentch Myers, Campaign4Compassion
We agree with the Pennsylvania Medical Society’s (PAMED) call for marijuana to be rescheduled by the federal government.  However, Campaign4Compassion, an overwhelming majority of doctors across the country, 23 states, and the people of Pennsylvania do not think that patients should have to wait for the federal government to change their classification in order to use this plant medicinally.

Campaign4Compassion (C4C) is a grassroots advocacy group that was started by mothers of sick children and other patients to advocate for the compassionate use of medical cannabis. Our goals are to educate residents and lawmakers in Pennsylvania and to pass comprehensive, compassionate medical cannabis legislation so that all patients with qualifying conditions have access to medication without fear of criminal prosecution. 

Several national medical associations including the American Nurses Association, the American Public Health Association, the American Academy of HIV Medicine, the Leukemia & Lymphoma Society, the Epilepsy Foundation of America, and many others support the compassionate use of medical marijuana. A recent poll from the New England Journal of Medicine found that 76% of doctors would recommend medical marijuana to their patients, with 96% support from Pennsylvania doctors who participated in the poll. The Pennsylvania Medical Society claims to represent Pennsylvania doctors, but according to their own numbers only 37% of doctors in the state are current members of the group. 

While PAMED expresses their opposition to SB 3 and any similar legislation, they never provide a specific problem with the content of the bill. As Dr. Bruce Nicholson, Chief, Division of Pain Management, Lehigh Valley Health Network and member of PAMED has stated: 

“The intent of this legislation is to control and ensure that there is acceptable dosing of THC & Cannibidiol for both the therapeutic use in the patient population as well as further studies of medical cannabis regarding specific conditions. It is my opinion that the current position of PAMED is not one of constructive dialogue further identifying the potential benefits of medical cannabis."

Like many other opponents of medical marijuana legislation, PAMED stakes their position on the need for more research and FDA approval. Since 1976, there has been a congressional mandate placed on the National Institute on Drug Abuse (NIDA) to study drugs only as substances of harm. Since NIDA owns the only researchable source of cannabis in the United States, research has been slanted to find only the negative effects of these drugs. However, in other countries where laws are different, researchers have found that cannabis can be used safely within the confines of a medical program.  

Even within the United States, despite the restrictions on research, over a dozen recent small-scale Phase 2 trials support marijuana’s medical efficacy. Studies like these and research from other countries was sufficient evidence for 23 states and the District of Columbia to enact sensible medical marijuana legislation. Lawmakers, residents, and doctors in those states decided patients should not have to wait for this bureaucratic process to be changed. 

To support their claims that medical marijuana has harmed patients with epilepsy, PAMED sites the Chapman study presented to the American Epilepsy Society (AES). Out of 75 patients using medical cannabis, 57% reported improvement in seizure control with 33% reporting more than a 50% reduction in seizures. In a patient population that has only a 1% response rate to the 22 other FDA-approved antiepileptic medications, this efficacy rate is impressive. PAMED also indicates that medical marijuana was responsible for the 20% who experienced an increase in seizures. However, they fail to mention pharmaceutical anticonvulsants can also cause an increase in seizures in some patients. 

We would like to mention that although PAMED focused on pediatric epilepsy, many seriously ill Pennsylvanians could benefit from access to medical marijuana. Chronic pain, nausea, lupus, spasms related to multiple sclerosis, and Crohn's disease all have strong evidence supporting the efficacy of medical marijuana, including, in several cases, small-scale double-blind placebo-controlled trials.

We would also like to make it very clear that as parents and potential patients we know there is no guarantee that any treatment will be effective. We are only asking for access to another option by our trusted medical professionals and the patients that they treat. The diseases that we face are debilitating, life-altering and often times life threatening. We do not have time on our side.

PAMED asks us, “Why not wait”? 

To ask patients and their loved ones to wait years for the federal government to reschedule marijuana, for research to advance, for our legislature to act, is cruel. 

Why not wait? 

We should not have to wait one more minute. The people we love are suffering, and there is a safe, effective treatment that could help. Every day we wait means more pills, more hospital stays, more seizures, more pain, more tears.Now is the time to move forward on this critically important legislation.

Recently, Campaign4Compassion joined a bipartisan group of lawmakers, potential patients and caregivers inside the Pennsylvania State Capitol to demand that lawmakers stop waiting and take action.  We urged movement for patients suffering today, the ones that have passed waiting and for future generations not yet diagnosed with disease. We would have loved to have had the support of PAMED.

We respectfully request that the Pennsylvania Medical Society reconsider their position. We implore them to remember that at the end of the day, we simply don’t want to bury our loved ones knowing that there is a medicine that could have facilitated healing and a better quality of life.  

Why would anyone want to stand in the way of that?

READ PAMED PERSPECTIVE

PAMED PERSECTIVE

PAMED PERSPECTIVE

By Karen A. Rizzo, MD, PAMED President
Who is the Pennsylvania Medical Society (PAMED), and why aren’t they in favor of medical marijuana as some have said?

Those are questions that have been asked, but not directly to PAMED until recently when Latrisha Bentch reached out and was kind enough to offer our organization this guest blogger opportunity that you are now reading. Until that offer, most involved in this issue relied on political-speak to define our organization and our position.

Let’s start off with the easier of the two questions: who is PAMED?

PAMED is a statewide association consisting of 17,000 members and growing. The organization consists of medical and osteopathic physicians, medical residents, and medical students.  We are the largest physician-led organization headquartered in Harrisburg that is committed to the good health of all Pennsylvania residents and engaged in the advancement of the practice of medicine.

Some Pennsylvania-specific issues that we’ve addressed in recent years to improve the health of all Pennsylvanians are ones that you may have seen in the news.  They include the fight against prescription drug abuse, smoke-free environments, EpiPens in schools, and health insurance access. And, yes, we do work on issues that impact the business side of practicing medicine such as credentialing and truth in advertising.

PAMED is an organization that follows a democratic process to develop positions on issues. Physician members have the opportunity via various channels to raise meaningful debate on issues from the grassroots up. These debates have the ability to ultimately develop the organization’s policy on many different issues.  At the end of the debate, positions developed come from the majority who participate.

This process is much like voting for president of the United States.  Those who participate have a say in the matter.  Those who don’t participate, but disagree with the outcome, really should participate.

And that brings me to the issue of medical marijuana.  This is not a new issue for us. It’s an issue that comes up periodically.  We’ve heard from members.  We’ve read the studies.  And, we’ve talked to researchers conducting studies.

PAMED supports reclassifying marijuana at the federal level to make it easier for research.  PAMED supports research.  And PAMED supports a thorough process of research that leads to final FDA-approved medications.

Because of this, we do want physicians to consider using medicines like Marinol that was FDA-approved as Schedule I drug for both appetite stimulation (1992) and for nausea (1985); and later moved to Schedule III in 1999. Marinol contains synthetic versions of chemicals naturally found in marijuana. Another FDA-approved medication with cannabis-related properties is Cesamet. This was reapproved by the FDA in 2006 for treatment of nausea and vomiting in patients undergoing cancer treatment.

Our hope is that other medications currently being researched will meet FDA approval soon and made available to those who suffer.

In forming our position, what we’ve been told by researchers is exactly what was reported in a national investigation by investigative journalism fellows with the News21 project from the University of Arizona.  In their recently released report titled America’s Weed Rush, the journalism teams at News21 were told by researchers in both Philadelphia and Utah who are studying Epidiolex and its impact on children with epilepsy that there’s a “need to conduct further studies before they would consider Epidiolex a valid treatment option.”

Regarding trials that America’s Weed Rush reported, GW Pharmaceuticals, the manufacturers of Epidiolex, said parents “will have a consistent pharmaceutical medicine they can trust once Epidiolex gains FDA approval.”

America’s Weed Rush also reported “But until that happens, many medical experts urge parents to wait.”

Why wait? To avoid skewed results … better and more accurate testing ... and ultimately more trustworthy medications.

Consider what’s happening in Colorado in terms of having trustworthy medications.  This was recently reported to Pennsylvania legislators by the American Epilepsy Society (AES).  In Colorado, products are not regulated for purity or uniformity like they do when they meet FDA approval.  A study by a team from Children’s Hospital Colorado found that artisanal “high CBD” oils resulted in no significant reduction in seizures in the majority of patients.  Additionally, according to AES, seizures worsened with the use of cannabis in 20 percent of cases reviewed and in some patients there were significant adverse events.

These are real cases and stories that are not being told.

The fact is families and children going to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil being prescribed, in most cases, by physicians with no training in pediatrics, neurology, or epilepsy.  Because these products are unregulated, there is no way to tell if these dangerous adverse reactions are due to CBD or because of contaminants found in artisanal preparations.

Meanwhile, desperation has led to disappointment for many families after they’ve spent large sums of money while chasing hope through a poorly designed, legislatively-built medical cannabis industry.

PAMED understands the struggle families face and we are sympathetic to parents involved with Campaign for Compassion.  We applaud each of them for their courage to step up through the legislative process, to raise awareness of this issue, and to fight for their loved one’s cause.

We also wish they would agree with PAMED that the right system to build is one that both patients and their physicians could trust.

Unfortunately, PAMED can’t support SB3 or any similar bill.  There are many problems with the approach offered by such bills that would not help in creating medications you and your physicians can trust. This has been the Colorado experience. Such bills do not take into consideration how to create medical-grade cannabis or advance research while protecting it from being skewed.

We must find a careful balance to help current children with epilepsy, while also helping children yet to be born who will also someday be diagnosed with epilepsy. This applies to all medical conditions of patients of all ages.

And that’s why PAMED, through a democratic process involving physician members throughout the state, has taken a position similar to many other medical and healthcare organizations throughout the country.


Monday, September 28, 2015

Let Nothing Stand In Her Way

In another life, many moons ago, I sat in a crowded auditorium listening to a seasoned psychologist lecture a group of trainees on substance abuse, as it relates to families. His objective was to coach us on an understanding of what would possibly cause a mother to neglect. I remember so vividly the question he asked that stumped the audience.

“What is the one driving force every mother has?” The audience was thoughtfully still.

“C’mon, there’s one thing every single mother on earth feels she was put here to do.” Silence... I wracked my brain, searching for the answer. Feed her kids? Provide for them? Love them? I couldn’t possibly raise my hand until I knew I had the right answer. Reluctantly, I said, “Protect her children.”

Nailed it.



It’s that simple. Every mother, even those who have not yet birthed their child, generally feels the overwhelming urge to protect them. The concept of protection, of course, encompasses providing for their every need, including emotional support, consequently protecting them from deep-rooted psychological damage. Many mothers, I speculate, even feel their children are an extension of themselves; therefore protecting the child is almost a form of self-preservation.

When their child cries, do they not cry too? When their child is in pain, do they not ache to find a suitable remedy to alleviate their suffering? There is no time for pause if their child is in need of help, no time to deliberate the outcome. There is only pure, unadulterated love that compels her to instinctually offer a resolve for whatever woes her precious little one.

And let nothing stand in her way.


Imagine a mother watching her son on the playground. A bully approaches. She’s an eagle... eyes locked. The bully grabs her child’s shirt around the neck, and throws him to the ground, laughing. Does the mother sit quietly minding her manners, assuring herself that the situation will handle itself? Kids will be kids, right?

Not likely.



She will make a mad dash across the rubber chips, tossing her bag aside, with no other care except to save her baby from harm. Gloves off. God help that bully.

Now we all know moms get tired, some of us know all too well. Special needs moms are a different kind of tired, the kind of tired that makes you question how you will ever survive. But tired or not, a mother still has that driving force. She still wakes early, goes to bed late. She still makes sure the babies are fed, their clothes are clean, and she will give her life to protect them, even when she lacks the energy to change out of sweatpants to run to the grocery store.

The only thing that changes in the tired mother is the level of patience she maintains. She will still provide, she will still protect, she will still fight with every ounce of her might to ensure her child’s well being. But she may not always smile about it.

I am a tired mom. I am a tired mom, who is advocating for medical cannabis for my sick child. I need to protect her. I need to help her. I need to get her safe, legal access to the appropriate course of treatment for pharmaceutical resistant epilepsy. It is my driving force, raw and fierce. I have been calm, I have been kind, but my patience is wearing terribly thin.

Our community has taken a lot of criticism for some of our actions over the past several months as we waited for the House of Representatives to take action on SB3. To our critics, I say this: Members of our legislature who deliberately hold up medical cannabis legislation are the equivalent to a bully on the playground, dangling my child’s hope right above her head, sneering, with no intention of relenting.

Should I sit quietly, minding my manners, assuring myself that the situation will handle itself? Politics will be politics, right?

Not likely.


I’m about to take my gloves off. You were sorely mistaken thinking our community had gone wild. That was us being mild mannered. This tired mom is just getting started.


~ Latrisha Bentch


Visit our site - Campaign4Compassion.com

Thursday, August 6, 2015

Would Cannabis Stand Up to the Scrutiny of the FDA?

Written by Deena Louise
Last week Speaker of the House, Mike Turzai, told the Pennsylvania Press Club that he still has questions about medical marijuana...questions pertaining to the proposed legislation and about why the FDA isn't involved more. Then he issued statements saying the current bill was "so broadly written" and "far reaching". He said he cares about every kid in high school because "marijuana is an 'entry level drug'" and then concluded by saying we still need a "full vetting" of this issue before we move forward. Once again, I shook my head in absolute astonishment that he would make statements covering the scope of the bill, the criminality of cannabis and the "safety" of high school children without once ever mentioning the patients. This is and has always been about very sick people who have nowhere else to turn, yet he never once mentioned them. 

I thought about his question concerning the FDA as I watched my TV today. I saw a commercial for a newly released pharmaceutical for insomnia. I watched, mouth agape, as I heard the myriad of side effects, some benign, but yet some, quite dangerous and risky. It got me wondering about the comment made by Speaker Turzai about why the FDA wasn't involved more. The first thing I wondered was why is Pennsylvania the only state concerned with this? None of the other 24 medically legal states ever echoed this concern. Then I wondered if cannabis would hold up to the scrutiny that other medications have been put through? Is it unreasonable to assume that cannabis could make it through the rigorous protocol of an organization that approved rat poison to thin your blood, allowed derivatives of chemical warfare as chemotherapeutic agents, approved an injectable toxic poison to erase wrinkles and recently approved a combination pill for weight loss, containing an anticonvulsant that carries a warning of suicidal tendencies? Let's examine this...

All drugs that get approval or disapproval have to go through pre-clinical assessment, then phase 1, 2 and 3 clinical trials. From there it goes to a review process and after the drug is released, it goes through post market analysis to determine if anything else was of concern that was not found during the clinical trials. So, where does cannabis stand in all of this?

Pre-clinical assessment consists of a sponsor developing a "new drug compound". The new compound is then tested on numerous animals to assess safety and efficacy. At this point, that same sponsor submits an IND (investigational new drug) application to the FDA . Although cannabis would not qualify as a "new drug compound" because it is a plant designed by nature, not man, it has been tested extensively on numerous species of animals and found to have no toxicity. Cannabis has already been through a 14 year IND application brought forth by the U.S. government. Therefore, I feel that it is safe to say that it would clearly pass pre-clinical assessment.

Phase 1 trials involve 20-80 people to determine the drug's safety. Side effects and how the drug is excreted and metabolized are also examined during this phase. Technically, cannabis has already passed phase 1 clinical trials if you count the 34 patients who were enrolled under the CIND (Compassionate Investigational New Drug) program that the federal government set up 1978 in response to the Robert Randall lawsuit. Although the CIND program was closed to new patients by President George H.W. Bush in 1992 with no explanation given, 37 years later, it is still active with two remaining patients who were "grandfathered" in. All of the patients enrolled in that program remained safe, got relief from their respective illnesses and suffered no long term side effects.

Phase 2 trials involve hundreds of people and its focus is on effectiveness. Safety continues to be studied in this phase as well. Although cannabis has not been studied federally at this level, the CMCR in California has conducted what would amount to phase 2 double blind placebo controlled clinical trials, and have found inhaled cannabis to be both safe and effective in hundreds of patients.


Phase 3 trials involve thousands of patients and it is at this point that the drug is tested using different dosages and is used in combination with other drugs. Cannabis has strong anecdotal evidence numbering in the thousands, but has not yet made it to this level of examined testing. However, THC (tetrahydrocannabinol), the only part of cannabis that can make one "high", has been through this level of testing and was approved as the drug Marinol in 1985 as a schedule 2 drug. Despite the fact that it is more psychoactive than herbal cannabis, Marinol was considered so safe that is was dropped to Schedule 3 in 1999, an absurdity that has not gone unnoticed by patients who were tested and found herbal cannabis to have less side effects than Marinol. Arguably, THC and its mind altering effects are the only reason that cannabis is illegal in the first place yet, it is the one part that has been tested, found safe and effective thus earning approval. So, why is the milder herbal cannabis still considered to be more dangerous?

As the safety of cannabis has been well established, at least in comparison to other pharmaceuticals, there remains two very big hurdles to getting FDA approval. The first is that cannabis was erroneously placed into schedule 1 of the controlled substances act. Schedule 1 substances are not allowed to seek FDA approval as they are already pre-determined to have no medicinal value. The second is that someone or some entity would have to sponsor it and present it to the FDA for clinical trials. The only drugs that get sponsored are those that can be patented so the sponsor can recoup the exorbitant costs involved with bringing a drug to market. As cannabis is a plant found in nature, it cannot be patented in its whole form. The only way to make money from it would be to extract and isolate a few key components and make a "new drug compound". Is it ok to do this to cannabis? Of course it is. GW Pharmaceuticals is doing this now with Sativex for Multiple Sclerosis and Epidiolex for epilepsy. However, the problem is that by isolating the compounds, it becomes more narrow in its ability to treat, leaving those that don't respond with no more options. One example of the limitation of pharmaceutical cannabis, inhaled herbal cannabis shows efficacy for treating pain, but in phase 3 clinical trials, Sativex failed to produce the same results. Further, Israel has released research that compared single cannabinoid (CBD) medication to full plant extract cannabis concentrates and found that single molecule CBD produced a narrow bell shaped curve dose response that did not occur with the full plant extract.

As Pennsylvania patients are asking for the "compassionate" use of cannabis for medical reasons, the only question that remains is this...does cannabis at least meet the requirements for compassionate use? Yes! With research from Yale concluding that one third of today's pharmaceuticals receive approval based on a single clinical trial, cannabis, having gone through at least a dozen clinical trials that meet phase 1 and 2 requirements, certainly qualifies for at least compassionate use, even by FDA standards.

So, if all I have said above is true, then what is the answer to Speaker Turzai's question about why the FDA hasn't gotten more involved? Is it because of the addictive potential of cannabis? No...the addiction rate falls well below all other substances at a rate of 9%. The FDA has approved many drugs with much greater addiction potential such as benzodiazepines, barbituates, and opiates. Is it because of the alleged harm to the brain? If that were the case then they would have never approved certain anticonvulsants, antidepressants and antipsychotics that have serious side effects including cerebral atrophy, neurotoxicity and suicidal/homicidal thoughts. Clearly the FDA has approved some medications that make cannabis look timid in comparison. So, why hasn't the FDA gotten more involved? The answer to that is simple...they aren't allowed to be based on government restrictions placed upon this plant. The FDA can only prove or disprove what is brought before them. Cannabis can't be brought before them until the laws change. The federal government said it will change when enough states change their own laws first, which means the ball is in your court, Pennsylvania General Assembly. It is time to follow the lead of 24 other states and tell the U.S. government that you are exercising your states' rights out of concern for your sick and suffering citizens!