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The Coalition for Medical Marijuana New Jersey

Third ATC opens...

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The headline reads: third dispensary opens in NJ.  A bit misleading, wouldn't you agree?  While it is technically true that three dispensaries have opened, there are only two currently filling the needs of patients statewide.

http://www.nj.com/politics/index.ssf/2013/11/third_medical_marijuana_dispensary_in_nj_now_accepting_patient_registrations.html

What about the children?

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 http://www.ladybud.com/2013/10/21/interview-with-heather-jackson-executive-director-of-realm-of-caring/
(
used with permission from LadyBud - visit their site for the full article and associated links)
Interview with Heather Jackson, Executive Director of Realm of Caring

Interview with Heather Jackson, Executive Director of Realm of Caring

On October 4, 2013, 10-year-old Zaki Jackson celebrated his “One Year Seizure Free Anniversary.”

Zaki stopped having seizures when he began using Charlotte’s Web, a high-CBD strain of medical cannabis that his mother, Heather Jackson, credits for saving her son’s life.

Yesterday, friends and family gathered in Colorado Springs for a big party to rejoice in Zaki’s good health, and to raise funds for the Realm of Caring, a Colorado-based foundation that helps families obtain special strains of medical cannabis for their specific health care needs.

Heather took a break from celebrating to chat with Ladybud about her son, her role at Realm of Caring, and why she wants the world to know about Charlotte’s Web.

Heather Jackson

Heather Jackson

Ladybud: What was life like for Zaki before he started on Charlotte’s Web?

Heather Jackson: Zaki has a rare severe form of epilepsy called Doose Syndrome. His seizures started at 4 months old (and he’d) had 500,000 seizures by the time he was 5 years old. Zaki has had peaks and valleys over the years, like many children with a catastrophic epilepsy diagnosis. Just before we started CBD, he was in a valley, having an average of 200 seizures a day as well as having seizures in which he stopped breathing. He was receiving hospice palliative services.

LB:  How did you first learn that medical cannabis could be helpful for Zaki?

HJ: The catastrophic epilepsy community is pretty close knit. I learned of cannabis as an option when I heard of Jason David’s story with his son Jayden. And I remember thinking, this isn’t just some story on the internet, I know them. This is when I started researching, like I had done for all previous treatment options we used for Zaki.

LB: How did you first connect with the Stanley brothers and Realm of Caring?

HJ: Actually that is an interesting story. I heard about them through our social worker through the hospice waiver my son was on. Her position would not allow her to make recommendations, so she carefully asked if we had thought about it as an option. I told her I had thought a lot about it, and had been talking to our doctor about it for about 4 months at that time. She connected me with many resources, the lab, and other families. It was providential. I will always be thankful to Ms. Cate for being brave enough to say something.

LB: And now you work for the Realm of Caring?

HJ: I am working for the Realm of Caring as the Executive Director. I came on about 8 months ago when the volume was picking up quite a bit. It is really fun because nothing like this exists; we are truly inventing the wheel.  I don’t think I could find anything more important to do with my life after how life-altering this has been for my family.

Charlotte's Web

Charlotte’s Web

LB: We’ve heard about a lot of families moving to Colorado to get Charlotte’s Web for their children. Can you tell us a little about that process?

HJ: It is so unfortunate that families have to pull up roots and leave family, friends, and their medical services to seek this as therapy. But they are doing it! We have 85 families that have done that now, with over 200 wanting to. There is such a wonderful community waiting here for them. The thing that warms my heart the most is the level of commitment and love that everyone has for one another.

Once a family makes the decision to start the Realm of Caring program, they should get on the wait list, they must establish residency, seek two physician recommendations for their red card, and establish all of their follow up care with neurology. But there is much more! They have to learn to navigate a whole new state, services, neighborhoods, schools, therapies, and specialists. It is not easy at all. But they have what I call an “end of earth kind of love,” for their child and they are figuring it out with help from families who have done it themselves.

The heartbreaking part and the hardest part of what I do is having to talk to the families who cannot do it. They just can’t. And the families who can do it, are medical hostages here in CO because if they leave with their child’s life saving medication, they are drug traffickers! It’s ridiculous and wrong on so many levels. I believe it is a human rights issue. I am hopeful this will change. It has to. Legislation has to change!

LB: How did you and your family celebrate Zaki’s 1 year seizure-free anniversary?

HJ: It only seemed fitting that we had a big bash! We have been calling it “Zaki’s seizure free birthday.” Zaki asked, “how old momma?” I told him he was “One! Incredible.” We invited the community to come celebrate with us. We received a $10,000 match for the Realm of Caring, so we are working hard to raise at least that much!

There is no paid staff at the Realm of Caring. This is terrific, but not a sustainable model. They need money to be able to continue their life changing work, and to help more families as well as put systems and infrastructure in place to bring this treatment to more people who need it, and do not have the time to wait for it.

LB: What would you say to people who still oppose medical cannabis?

HJ: I would say that I understand how you feel, I understand there is a lot of propaganda and myths surrounding the plant. But I would ask them to take a look at our journey and have an open mind. If they are inclined, please look at the research. There is actually a ton of it!

Have them understand that we aren’t trying to make a statement. We have no agenda. We were simply trying to save Zaki’s life, and give him a better quality of life. His overwhelmingly positive response is making the statement. We then had an obligation to tell the story. We are just trying to spread the word. Don’t walk a mile in my shoes. Simply hold your child one time while they seize and turn blue because they have stopped breathing. Tell me, what would you do if it were your child?

LB: How can people support/donate to Realm of Caring?

HJ: Donations are tax deductible through a fiscal sponsorship through this link.  Please help us meet our 10k match.

 

From the pen of Terry Stern

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 Terry is a member of the Friends of the Coalition for Medical Marijuana, NJ.  He has submitted the following for your enjoyment (and, hopefully, to motivate your activism):

The Infamously Unknown Weeyallnoe Foundation

 

There are people, Bill O’Reilly and Chris Christie among them, who point to California and Colorado and say, “Pot bad. Case closed,” O’Reilly with the condescending smirk of a 7th grader who’s just seen his rival caught masturbating in the lunch room, Christie with the look of a parent about to ground us for a month.

 

These are charismatic people, and, if you’re standing face-to-face with one, it’s hard not to turn purple and stammer. But we can remember that here, in a calm place, not worried about whether we look fat or sound stupid, only thinking about what makes rational sense, we have this single, unshakable truth:

 

Every bit and scrap of their proof has been debunked as fraud or proven to reflect the misuse of study data.

 

Everything they serve up is either smokescreen or red herring. No matter how eloquently or compulsively they insist, their arguments are standing on air.

 

Ours are grounded. 

 

Even if an opponent is quicker on her feet, she cannot spin proof out of clouds. The constant, inexorable march of truth is on our side. If you can’t think of anything else to say, “Smoke and mirrors,” or “your proof does not stand up to scrutiny,” will do. Just wash, rinse and repeat. And repeat. And repeat. 

 

These folks rely on a little-known institute of social science research in the United States called the Weeyallnoe Foundation. Though little known, it has a reputation which proudly befits its fame.

 

The social conservatives quote its findings all the time. They state them as a series of citations, such as, “Weeyallnoe: marijuana leads to dangerous paranoia” and “Weeyallnoe: if we legalize marijuana, our children will become fat, unemployed, addicted schizophrenics.” “Weeyallnoe: multiple studies prove this.”

 

For a wonderful rundown of Weeyallnoe pronouncements, watch Rep. Frank Wolf (R-VA) speak against an amendment which would stop DEA marijuana enforcement on medical marijuana dispensaries in states with cannabis laws. Though recorded in 2012, the arguments are basically the same, although support for them is eroding:

http://www.youtube.com/watch?v=_OShxW9tta0&list=PL71467B9C3DD67CAE

 

Of course, “we all know” there is no Weeyallnoe Foundation.  Weeyallnoe is simply the pseudo-scientific justification used by people out of touch with the real science and sociology when they attempt to justify irrational positions on marijuana prohibition.

 

The single source of weight and power of these “we all know” arguments is the emotion behind their expression. When they speak of their own, inaccurate portrait of the impact of drugs, their faces glow with religious zeal and terror. When they speak of ours, they smirk in disgust or sneer in stern disapproval.

 

When faced with an opposing view, I have found an empathetic response like this useful: “I know this is scary, and I understand it means giving up things you’ve believed in all you life, but people are dying as we stand unable to decide about cannabis, and we can’t make this decision on feeling alone. We must let science speak for itself.“

 

And when that tanks, “Hey, shit-for-brains: quit your verbal masturbation and throw a towel over it.”  But this rarely works.

 

Here’s a rundown of the Honorable Mr. Wolf’s (R-VA) Weeyallnoe-backed arguments :

 

States’ Rights:

     Weeyallnoe: if states passed laws permitting sexual trafficking of minors, we would be compelled to intervene. This is the same thing.

 

     Response: smokescreen. We would also expect the Federal authority to step in should Alabama develop a nuclear bomb. But what does that have to do with medical cannabis? The kindest thing to be said about the Congressman’s disfigured analogy comparing medical cannabis with child pornography is that it is disingenuous. No matter how many minor sex slaves you may have, Congressman Wolf, they, unlike cannabis, will never be able to kill the cancer cells in your brain.

 

Medical Oversight:

     Weeyallnoe: many of these “dispensaries” are fronts for illegal dope sales.

 

     Response: and we all know many bars and liquor stores are fronts for illegal sales to minors. But you have no more reliable statistics for you claim than I have for mine.

 

     Weeyallnoe: we can’t count on doctors to be honest. There are pain clinics in Florida where bus-loads of people arrive every day to get prescriptions for oxycontin, and people get addicted and die.

 

     Response: you have made an argument for medical cannabis. Not only does it work more effectively with fewer unwanted effects than pharmaceuticals, it is the only medication effective against serious conditions which cannot kill no matter the size of the overdose. Oxy, as you say, kills people every day.

 

Medical Legitimacy:

     Weeyallnoe: marijuana has absolutely no recognized medical value in the US.

 

     Response: it is interesting how he adds, “in the US,” as if once across the Canadian border marijuana has wonderful medical effects just not so on the US side. There are hundreds of studies published since 1837 contradicting this assertion.  For the past decade, studies from Israel, Luxemburg, Italy, Spain, England, California, Colorado, et al, plus the recent unmasking of DEA evidence belies this claim in no uncertain terms. It is simply untrue.  

 

Social Danger:

 

     Weeiyallnoe: allowing medical cannabis increases the profits of Mexican drug cartels.

 

     Response: only because we ban its cultivation here.

 

     Weeyallnoe: letting our 15-year-olds see medical marijuana stores in our communities is an invitation to them to start using it.

 

     Response: in the way bars and liquor stores encourage them to drink or tobacco stores urge them to smoke? What do Victoria’s Secrets stores in malls invite our 15-year-olds to do?

 

     Weeyallnoe: marijuana is highly addictive and shows immense potential for abuse.

 

     Response: red herring. There is no proof of that. These are DEA claims based on evidence collected by Harry J. Anslinger in the 1930s to persuade Congress to outlaw marijuana, the “corrupting drug” being brought here by the “inferior races” (Mexicans and Black jazz musicians). All DEA proofs have been publicly debunked as fraudulent. In fact, they were simply made up by someone trying to rig proof to manipulate folks into believing hemp was evil.

 

     Weeyallnoe: there is substantial proof that marijuana causes cancer, brain damage, IQ loss and schizophrenia.

 

     Response: there is no proof marijuana causes cancer, brain damage, IQ loss and schizophrenia. Studies claiming to prove the first two charges were made up. They were never conducted. Studies claiming to prove the last two were shown to prove only coincidence, not causality.

 

     Weeyallnoe: marijuana is a gateway drug.

 

     Response: in the only study which exists on the matter, marijuana use was found to offer no indication of the potential for future hard drug abuse. Alcohol and tobacco use were more likely gateways.

 

     Weeyallnoe: reducing enforcement on this dangerous substance is a wrong message to the youth.

 

     Response: what message does it send our youth to waste $15 billion per year on enforcement which has negative results year after year, mounting up a debt which they will likely be called upon to resolve? What message does it send our youth that the substances we will permit can kill you while the one we prohibit can’t?

 

     Weeyallnoe: there is more danger of traffic accidents when people drive stoned than when they drive intoxicated.

 

     Response: now you’re just making stuff up.

Debunking the myths

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Very interesting bit from Terry Stern, a member of the Friends of the Coalition for Medical Marijuana, NJ.  I like it so much I may ask him to write a weekly piece.

CHRISTIE MYTHS and how to answer them

Christie Myth: Marijuana is a gateway, therefore medical marijuana will lead to dangerously increased hard drug use.

In a study commissioned by The White House, the Institute of Medicine shaved this shaggy dog naked years ago. Those who make such claims are confusing cause with correlation. People who use harder drugs often also used marijuana first. But they also often used alcohol, tobacco, hand soap and underwear before hard drugs as well, none of which are blamed for their harder drug use. The Institute of Medicine concluded that marijuana didn’t even make the list of top causes for hard drug use. This claim is stamped “fraud”.

Christie Myth: Marijuana smoke is deadlier than tobacco smoke. Any potential benefit is offset by its carcinogenic qualities.

Dr. Donald Tashkin, a leading pulmonologist, found that even regular and heavy smoking of marijuana does not lead to lung cancer. In fact, daily cannabis users not only showed a huge reduction of risk compared with tobacco smokers, they showed a slightly reduced risk of contracting lung cancer compared with total non-smokers. It seems counterintuitive, yet it is the case. And cannabis does not need to be inhaled as smoke in any event. This claim is stamped “fraud”.

Christie Myth: Allowing the medical use of marijuana will send the wrong message to children and lead to more teens using the drug.

Of 13 medical marijuana states which have before-and-after data, some show increased use, some show decreased among teens. Teens also decreased and increased usage In states with no data or no programs. The conclusion of the study by the University of Wisconsin is that there is no correlation between medical marijuana programs and teen marijuana use. This claim is stamped “fraud”.

Christie Myth: Supporting medical marijuana is politically risky.

Across the country, public support for medical marijuana is strong and steadily rising. It cuts across demographic and party lines. More than 78% of Americans support medical cannabis. New Jersey’s figure is 85%. It would, rather, seem politically risky to stand against medical marijuana. This claim is stamped “desperate”.

It's LAW, baby!

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 Recently, our efforts appear to be gaining traction. We have asked for, and received, an amendment to the guidelines (as law) to abolish the three strain limit (dispensaries can grow what they want, and better serve the patient), and allow for a simpler approach to treating children (such as Jennie Storms son and Meghan and Brian Wilson's daughter, in addition to Tina DeSilvia and; both of these children suffer from intractable seizures which cannabis HELPS).

If you read just the headlines, you could form the opinion that our Governor, Chris Christie, has come to his senses and determined that the scientific findings are sound enough to make policy decisions on. However, we on the front lines can offer a different opinion. Yes, the Governor has appeared to relent under pressure from his constituents. Some count this as a victory, but it is a dual-edged victory. Certainly the Governor sees the political equity in this issue. He wants to appear to be meeting the needs of his contituents. However, after repeated requests to sit down with him and educate him, it doesn't appear that such a meeting is forthcoming.

Terry Stern, a respected member of the Friends of the Coalition for Medical Marijuana, NJ, had this to say in a recent op-ed: In all the flap about medical cannabis in New Jersey, a moderately plump elephant in the room is getting very little attention.

Statistics gathered from all states with medical cannabis programs show the national average of cannabis patients is 7.7 per thousand population.

There are states with as high a number as 14 per thousand and states as low as 3.

And then there’s New Jersey, which has one patient per 3,000 population. That’s like a car tracking gas usage in gallons per mile.

Unless we can show why living in New Jersey is a whole lot healthier than living anywhere else, there ought to be approximately 50,000 to 60,000 medical cannabis patients in a population this size.

Where are all the patients?

TERRY H. STERN

Pennsauken

What Mr. Stern is alluding to is that the very guidelines of the program implemented by Governor Christie is the impediment to getting patients enrolled in the program and receiving the medicine they need. Those guidelines have literally choked the life out of what would have been the strictest program in the states that have adopted medical cannabis programs. In a state with the population we have, 6 dispensaries are not enough. Currently, the one dispensary we have operating has closed its doors for lack of product. Where are the other five? Of those 1200 or so registered patients, only about 10 percent have been able to secure product under the program's guidelines, legally. So, Mr. Stern poses a very pertinent question: where are the patients? I can tell you only about my personal experience: my condition (failed back surgery, spinal cord stimulator implanted, 14 year relationship with my doctor, 10 years on narcotic pain killers) does not qualify. Nor do the vast variety of other conditions that could benefit by using cannabis. I have a prescription for Marinol, which i take 10mgs three times a day. It's fairly expensive, about $2500 per month. Why should I be relegated to take a THC-only pill when it's been scientifically proven that the other components of cannabis are much better suited to deal with pain? Because of our Governor's guidelines. Like it, or not, Governor, THIS is your program. If you had just implemented the law and not had the DHSS draw up the guidelines, you may have been able to side-step that. But, you didn't. You, in conjuction with the DHSS, have made the program unworkable. Where are the patients? We're waiting for a sign from the Governor that we will be able to get the medicine we need in a timely manner.

-- Jim Price, CMMNJ website administrator, non-qualifying patient and cannabis activist

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