Tag Archives: Epidiolex

Campaign for Compassion Leads Pennsylvania Legislature

Is CBD from Marijuana for Epilepsy Really About Compassion?

Parents Opposed to Pot supports every effort to find cures for children who suffer, but it’s unclear if Pennsylvania legislators who passed a medical marijuana bill on April 13 really understood the subject.   Dr. Michael Privitera, President of the Epilepsy Society urged legislators to vote “no” on SB-3, but the legislators voted to follow anecdotal evidence rather than the science.  (Portions of the letter are below.)

Cannabidiol
Compassion should lead to testing all medicines. GW Pharmaceuticals had 3rd phase trials for Epidiolex, a marijuana extract that could help for seizures.

The manipulations of the marijuana lobby are typical: give people false hope, play the “compassion” card to manipulate public opinion and shame people into adopting their view.  Because there is so much drama behind the people who advocate for marijuana use to treat epilepsy, many parents are expecting miraculous cures that are not always forthcoming.  The pro-marijuana advocates need to warn that any relief CBD oil gives for epilepsy is not necessarily permanent.

The Children Given Marijuana for Seizures who Died

(GW Pharmaceuticals Epidiolex is for Dravet Syndrome, and for Lennox-Gestaut Syndrome   The question is wheter or not a

A family in Arizona who was part of a lawsuit to get the extracts for their son saw a dramatic difference in the boy, an improvement in all levels of functioning.  Yet the poor boy died. The family still advocates for marijuana extracts.  We understand the view of the parents — they saw their son have a better life for a brief period before his death.

A girl who had been the poster child for medical marijuana recently died. She no longer needed a wheelchair after moving from Connecticut to Maine for CBD.   It is estimated that 85% of patients with Dravet Syndrome survive to adulthood, although life expectancy is not well understood.

At the end of Dr. Sanjay Gupta’s Weed 3, it was mentioned that Vivian, the little girl whose family moved to Colorado because to have extracts of marijuana not available in New Jersey, was no longer being helped as much as she had been at first.

We are sorry for the parents who must go through so much to help their children.   We would hope they can be assured of purity — free from mold, fungi and pesticides.

How Marijuana Passed in Pennsylvania

Pennsylvania passed its bill on April 13 after legions of people worked tirelessly to emphasize that medical marijuana offers hope for epilepsy.  One of the moms who was part of the PA grass-roots movement, Campaign for Compassion, is Cara Salemme.  She has a 9-year-old son who has been suffering from seizures since age 5.  Salemme’s passion is understandable.  We hope that Salemme and other moms are not let down.

Lori Robinson, co-founder of Moms Strong said, “Apparently, only young kids who have disorders that break the heart can move mountains because parents whose kids are suffering egregious consequences from this plant really don’t garner any attention by legislatures.”  Compassionate Pennsylvanians should learn both sides of an issue.

So, MIchael Privitera MD, President of the American Epilepsy Society, who wrote a heartfelt letter on March 15, 2016, to Rep Matt Baker and the Pennsylvania Legislature, noting scientific studies and warning of the dangers of making law on such scant evidenceLegislators voted against Dr Privitera’s pleading of a “no” vote on SB-3. There are those kids  who develop the adverse condition like status epilepticus.  Here are excerpts from Dr. Privitera’s letter:

“Additionally, in 13% of cases reviewed seizures worsened with use of cannabis and in some patients there were significant adverse events. These are not the stories that you have likely heard in your public hearings or have read in popular press, but they are the reality of AES members who are practitioners at Children’s Hospital Colorado who have cared for the largest number of cases of children with epilepsy treated with cannabis in the U.S.

Unlike the product used in the GW Pharmaceutical study, the families and children moving to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil prescribed, in most cases, by physicians with no training in pediatrics, neurology or epilepsy. As a result, the epilepsy specialists in Colorado have been at the bedside of children having severe dystonic reactions and other movement disorders, developmental regression, intractable vomiting and worsening seizures that can be so severe they have to put the child into a coma to get the seizures to stop.”    (GW Pharmaceuticals is a British Company)

The Dark Side of Marijuana and the Money

Rep Matt Baker
Rep Matt Baker is a legislator from Pennsylvania with compassion. Before serving in the House, he worked for a law firm where he specialized in serving people with disabilities, helping them obtain disability benefits before federal administrative law judges.

Rep. Matt Baker, Head of the House Health Committee had studied marijuana’s effects on various health conditions for a long period of time.  He expressed very reasonable concerns about the horrible side effects of marijuana and what can happen if medical marijuana is diverted to children and teens, as has happened in so many states.

(An 18-year-old in Washington state who had been given medical marijuana for a digestive issue experienced numerous psychotic symptoms which killed him in September of last year. Washington state has experienced an uptick in psychotic patients since legalizing marijuana.  The boy in Pennsylvania who recently died had a combination of marijuana wax and Xanax in his body which contributed to cardiac arrest.  He had a prescription for Xanax but not the marijuana wax.  His marijuana use probably preceded the anxiety, since marijuana is known to cause anxiety.)

Lori Robinson stated: “Now that we have medicinal marijuana in 24 states, why is it that the federal government not demanding disclosure of marijuana’s adverse effects on mental health, particularly for those ages 25 and under?”   Recently, Arizona’s governor signed a law stating that medical marijuana dispensaries must post prominent signs warning pregnant and breastfeeding women not to use.

She added, “I wish I believed this was more about compassion, but I don’t.   More likely it’s about the money.”

It should be noted that the marijuana industry donates heavily to state legislators with the hope of getting state-by-state medical marijuana in advance of legalization, using Colorado as a model.  If there is a silver lining in Pennsylvania’s program, it is that smoked forms of marijuana are banned.  However, this program will allow for vaporized marijuana, and it foolishly added PTSD and autism to allowed conditions that may be treated with marijuana.

We believe that presidential candidate Bernie Sanders, who supports marijuana legalization, is disingenuous when he criticizes the Koch Brothers and Wall Street bankers while not calling out the fact that George Soros and Peter Lewis have given millions and millions of dollars for the legalization of marijuana.  The marijuana lobby also donates to Congress.

 

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American Epilepsy Association Statement on CBD Oils

The following letter was written by Dr. Amy Brooks-Kayal to a state representative in Pennsylvania.  Here is an article where the letter had been published.

March 22, 2015

Dear Representative,

As Pennsylvania considers enacting new cannabis legislation (HB 193), I write to offer the perspective of the American Epilepsy Society (AES), the leading U.S. organization of clinical and research professionals specializing in the treatment and care of people with epilepsy. Continue reading American Epilepsy Association Statement on CBD Oils

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Judge Upholds the Schedule I Classification

On Wednesday, April 15, 2015, Judge Kimberly J Mueller of the US Court in Sacramento upheld the constitutionality of marijuana’s Schedule I designation in the 5-tier classification set down by Congress in 1970.   Schedule I drugs must have a high potential for abuse.

On April 16, 2015, Governor Butch Otter of Idaho issued an executive order allowing for expanded access to Epidiolex, a pure, pharmacy version of cannabidiol (CBD). He vetoed a bill that would have allowed non-pharmacy grade CBD for the treatment of seizures.

Parents Opposed to Pot calls on the national media to clarify the distinction between cannabidiol (CBD) Continue reading Judge Upholds the Schedule I Classification

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Medical Marijuana Risks

Editor’s Note: There is much misunderstanding about “medical” marijuana.  National Families in Action explains when a controlled substance becomes medicine. NFIA has also published some helpful leaflet on the difference between marijuana and “medical” marijuana.   

It’s hard to protect kids when the names of medical marijuana dispensaries are so enticing.  The stores using “health,” “wellness,” “medicinal” and “candy” in their titles make pot very alluring.  Imagine if a liquor store, tobacco store, or pharmacies did the same.  (See our investigation into medi-pot dispensaries.)

In states with medical marijuana, 12-17 year-old teens use marijuana to a much greater degree than in states without medical marijuana.  States that voted down medical marijuana, Arkansas and South Dakota, have some of the lowest rates of youth marijuana usage. Before legalization in Colorado, a study showed that more than half the teen users surveyed said they had obtained pot from a medical marijuana ‘patient’.

Parents Opposed to Pot calls on those who support medical marijuana to address how to prevent substance abuse and secondary sales to children. The best laws have been adopted by state legislatures, as in New York and New Jersey.  Whenever there have been statewide votes, as in California, Oregon, Washington, and Colorado, the records for protecting children are poor.

Teen usage has been going up since 1996, when medical marijuana was voted upon in the 1st state, California.  Additionally, the teen perceptions of the risks in using marijuana have been going steadily downward since the 1991. Certain states with medical marijuana, especially  Vermont, Oregon and Colorado, also have some of the highest usage of opiate pills, cocaine and alcohol in children and adults.  It looks like marijuana is the gateway drug, when comparing state statistics for marijuana usage with all other drug usage.  Vermont has been having a heroin problem this year, and Oregon has had problems with pill abuse over the past several years.Marijuanausebystate

Testing and Approval of Drugs

As Americans have learned to expect easy, medicinal solutions to complex problems, the prescription drug and medical marijuana industries have grown.

While it is completely understandable that somebody that is sick, or the family of a patient, will want to use any means necessary to ease the pain and to cure, we would hope that there would be the correct information out there necessary to make a sound decision about the pros and cons of use.

Pharmaceutical drugs must undergo rigorous testing by the Food and Drug Administration (FDA) before approval.  During these tests, placebos can work almost as well as the drugs being tested.  Approved pharmaceutical drugs must warn of any and all potential side effects.

On the other hand, marijuana is recommended without warnings, and providers often do not need to prove their qualifications. Claims of cures by medical marijuana are promoted without testing.  The marijuana plant holds 480 chemical components.  If one component holds curative properties, another component could work against that property or have negative side effects.

Even if marijuana helps Multiple Sclerosis (MS), it also increases the brain fog in MS in patients.  Why aren’t we discussing side effects when we talk medical marijuana?   According to former Congressman Patrick Kennedy of Project SAM, the Institute of Medicine has concluded that if there is a future for marijuana as medicine, it lies in isolated components.

Epidiolex, a derivative of CBD in liquid form, is available to children with epilepsy in 10 states.  It  is being fast-tracked for FDA-approval, along with Sativex for Multiple Sclerosis.  Sativex, a derivative of marijuana will be used for as a tongue spray.  Both products were developed by GW Pharmaceuticals of Great Britain.

Conventional and Alternative Medicine

Getting a dog has been shown to be a very good solution for those who suffer from Post-Traumatic Stress-Syndrome (PTSD).   Both yoga and dogs can bring back connectivity, open up energy and free blocked emotions.  Quite the opposite could occur with use of marijuana.  It may bring relief by numbing feelings even more, but it is known to harm memory and may not allow PTSD survivors a recovery back to their prior state of functioning.

There are problems with conventional treatments for cancer, but there are also problems with alternative treatments for cancer. The marijuana lobby has yet to explain why marijuana is often not the drug of choice for cancer patients in medical marijuana states.   Is it because there are better drugs out there?  Marinol, a synthetic marijuana, has been available to address the nausea and vomiting from cancer treatments and AIDs.

In Montana a few years ago, Cashy Hyde’s father claimed to have cured his son of cancer using cannabis oil.  Sadly,  the boy eventually died, after dramatic announcements that he had been cured.  The constant nurture and love from his parents probably helped to extend his life.  Any parent may have tried the same thing, maybe preferring it over harsh chemotherapy treatments.

When reading about the remarkable claims advocates of medical marijuana propose, please remember the placebo effect.  We don’t know why placebos cure some people and not others.   It could be the power of belief, or the result of a person’s own immune system having the ability to fight the disease.

Diet change can treat many of the autoimmune diseases which medical marijuana advocates list as conditions to be treated with marijuana: Crohn’s Disease, Rheumatoid Arthritis and Multiple Sclerosis.  Medical marijuana treatments address the symptoms of disease, rather than the underlying causes.  Diet and environmental changes can bring us closer to addressing the root causes of autism, autoimmune disease and epilepsy.

The ketogenic diet is a very successful means of controlling Dravet’s Syndrome and other types of epilepsy in children, a fact not discussed by those advancing medical marijuana.

Sometimes psychiatric medications are blamed for the actions of disturbed mass killers, such as Adam Lanza.   However,  James Holmes, Jared Loughner and Johar Tsarnaev were heavy marijuana users.  Even the recent Santa Barbara killer, Elliot Rodger, had made a video about using marijuana every day.

We do not know the extent to which marijuana or pharmaceutical drugs contribute to teen violence.  While the pharmaceutical industry has flaws, at least rigorous testing is required.  The government has the ability to take a drug off the market.

Where’s the Expertise?

In this day and age, when people want miracles and pharmaceutical drugs can fall short of expectations, the marijuana industry looks for potential openings.

All claims of marvelous, miraculous cures need to be viewed with skepticism, whether considering pharmaceutical medicine or marijuana as medicine.

The push to reschedule marijuana from a schedule I to schedule II drug comes from Rick Doblin, the same person who wanted the FDA to approve MDMA (Ecstasy) as medicine.  Doblin holds a  PhD in Political Science.  He doesn’t have the credentials you’d expect from someone making medical judgments.

The designation of marijuana as a Schedule I drug, meaning “high probability of abuse,”  was upheld by the Federal Appeals Court for the DC Circuit, on January 22, 2013.  Three pot advocacy groups had appealed a Food and Drug Administration (FDA) ruling of July 8, 2011, a ruling backed up by evidence by the Department of Health and Human Services.   Previous reviews were in 1972 and 1986.  Pot has become more potent since that time.  There were 455,000 hospital emergency room visits for marijuana in 2011, a reason the FDA  and Health and Human Services are reluctant to change.

The decision-making should come from the health and medical professions, using their expertise, not from political advocates.

Most doctors don’t agree with medical marijuana, but some see isolated components of the plant most helpful . The Pro-Con website lists 105 double-blind studies, and the conclusions from these studies are inconclusive: 40% suggest it can be helpful, 30% find no possible medical usage and 30% find it neither favorable or unfavorable.

If your state has a referendum, study the details.  How does it protect children and prevent profiteering in the secondary markets?

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