Early this morning, Joshua Weaver, whose daughter Amelia lives with Dravet Syndrome, contacted Bluestem with regard to questions about the timeline of developments in Minnesota's medical marijuana debate.
Bluestem had raised questions about Representative Carly Melin's claim that the Weaver family's dilemma--seeking legal access to low-THC medical cannabis that has produced profound improvements for many children living with Dravet Syndrome--led to her introducing HF1818 on May 2, 2013. Read our posts Pass the stealth dutchies: Melin disses former allies in pediatric cannabis Facebook group and Update: new pieces emerge in Carly Melin's medical marijuana inspiration mystery.
Mostly, we were curious about Melin's claims since December 2013 that the Weavers had led her to introduce the first bill in May 2013. We had not been able to find any record of Melin discussing pediatric cannabis or the Weavers before December 2013.
We asked Weaver to provide a statement for the record about his family's journey from private citizens insearch of remedy to public advocates for legal access to medical cannabis, and he has done so. Here's his emailed statement:
Ms. Sorensen
Hopefully I can clear up a timeline for you. My daughter, Amelia, was diagnosed with Dravet Syndrome at the end of January 2013. It was a difficult diagnosis to get because of the limited number of treatment options. Over the next few months, we started doing our own research into those treatment options. Of course, medical cannabis was not on that list. I did find a story of a boy in California using medical cannabis for intractable epilepsy with some amount of success. Sometime in the summer of 2013, my coworker forwarded me the video of Charlotte Figi. Of course, this was overwhelming to us because she also has Dravet Syndrome (many times diagnosed with a gene panel). Charlotte's story drove us to find out more.
We first started seriously talking about moving to Colorado in the Fall months of 2013. However, as we quickly found out, it was not as easy as just moving and immediately starting medicine. On top of that, we did not have the means or support to be able to move immediately. In November 2013, we were told that Representative Melin had introduced a bill for medical cannabis in Minnesota. After some amount of discussion, we decided to contact Representative Melin to make her aware of our situation and how her legislation could help us. My wife and I are not political activists by any means, but we thought that it was the least we could do for our daughter. Representative Melin and Representative Murphy stopped by to visit my daughter and talk with us about our situation in December 2013. [emphasis added] They happened to be in town for some reason that I do not remember. We visited them and told them our story.
I do believe my wife submitted a personal testimony with Amelia's story to the Minnesotans for Compassionate Care website sometime in January of 2014. It was before the session started. After that, we were contacted by interested news organizations looking to tell Amelia's story. In the middle of February, we were invited to bring Amelia down to the Capitol and speak with legislators about Amelia's story. I don't remember everyone who showed up to meet Amelia, but there were about a dozen lawmakers that stopped by. We never did meet the Governor, but we were able to talk with members of his staff that same day.
Then the session started and I believe the rest is fairly well documented. We were at the Capitol yesterday for a truly wonderful moment and we are beyond thankful to the lawmakers who made this happen. At the beginning of the process, I was very skeptical that anything would get accomplished. The Governor made is position very well known and it was a hurdle that just kept looming. Seeing a compromise emerge and having a bill that could pass into law was overwhelming for my wife and I. We are ecstatic with this dramatic turn of events.
This account conforms fairly precisely with what Bluestem has found online at the Weaver's blog, Cupcakes and Home School.
Weaver adds in a separate email that Melin's father taught classes at Hibbing Community College for many years, but retired as a colleague sometime back:
I'm sorry I don't know the exact date. It must be a couple years by now. I don't know if he fully retired or just retired and continued part time work here and there. He was a law enforcement instructor here for many years.
In news reports, the Weavers were never the ones to claim that they were the inspiration for Melin; those statements come entirely from Melin, and the media appear to have never asked why Melin changed her story to focus on the Weavers as the impetus for her signing on to the bill.
Since the Weavers themselves hadn't learned about medical cannabis as a treatment for their daughter before HF1818 was introduced, and would not learn themselves about pediatric cannabis applications until later that summer, it's difficult to believe that Representative Melin happened to have that insight.
Especially since she never mentioned the family until after they approached her.
What should we make of this?
It's apparently a mispresentation of matters on her part, and it's an apparent misrepresentation that has had resounding consequences on the end result of the legislative process. Melin was able to take bows for seeming to call out law enforcement, but then deliver on a highly restrictive bill once Scott Dibble started getting the process rolling again with the stronger bill. Dibble's bill also became stronger as it moved through the committee process.
And once Melin held out suffering children as her original inspiration for getting involved in medical cannabis policy making--a statement examined by no one in the media--she and her defenders think themselves able to cry foul on any critics of the "compromise" law enforcement desired and Dayton so desperately needed for re-election as he fumbled the issue.
Bluestem is happy that Amelia, Luella and 5,000 other people wil have a chance at receiving medical cannabis, if the compromise can be made to work.
We cannot, however, forget about the 30,000 other people who are left out, as we have long believed that there should not be a hierarchy of the ill, nor are we comfortable on putting happy DFL face on while apologizing to veterans we know who suffer from PTSD who experience rather frightening side effects from existing treatments.
Thus we have a hard time time not agreeing with SF1641 co-author Senator Branden Petersen who writes in his statement about the compromise:
Perhaps the most disappointing aspect of this limited proposal is that it was completely unnecessary. Over two-thirds of the state, and a majority of my legislative colleagues, support proposals that do not cost the state a cent while more efficiently protecting a greater number of patients. Much of this “compromise” is the direct result of hyperbole, fear, and rigid intransigence from Gov. Mark Dayton.
Ignoring the overwhelming body of evidence that medical cannabis is a viable and highly effective treatment for tens of thousand of Minnesotans, the governor forced the legislature to put forward an inadequate bill that leaves so many patients and families on the outside. Gov. Dayton consistently required language that would treat medical cannabis as a highly toxic and dangerous substance and those who use it as untrustworthy drug addicts. These suggestions were, and are, far from reality. Medical cannabis has been used for thousands of years and is much less toxic and addictive than many legal prescription drugs. The patients who seek to use medical cannabis do so in order to get better, not to get high.
NOTE: OUR QUESTIONS TO JOSH WEAVER
Note: In the interests of full transparency, here are the questions we asked Weaver after he contacted us, and to which he responded with the statement above. The questions:
Thanks. News accounts from earlier this year make it appear that Amelia, who had lived with seizures since she was a toddler, was diagnosed with Dravet Syndrome when she was six. (About a year before the articles were written). The newspapers are unclear about the timeline from the diagnosis to your family's exploration of medical cannabis as a potential tool in aiding Amelia.
The next step is your family's move from concerned parents to passionate advocates for legal access to medical cannabis for all children living with seizure disorders; this journey is first reported by news media in December 2013 (ECM Publishing, a statewide newspaper chain, published and reprinted an article about the pending legislation) and continues through this day. Angie's testimony also occurs on the website kept by Minnesotans for Compassionate Care, although the date when this document was first posted is unclear.
If you could sketch out this timeline of personal discovery to public activism for a statement for publication, that would be very helpful for my readers. Including specific mileposts, such as finding videos, television shows, and newspaper articles about cannabis as a treatment--as well as dates of initial contacts with public officials such as Governor Dayton, legislators and organizations like Minnesotans for Compassionate Care that worked to achieve yesterday's deal--would be helpful.
Thanks.
Photo: Amelia Weaver, via WDIO.
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Senator Petersen's remarks hit the nail on the head. There was no need to water down or eviscerate the MPP-written bill, originally identical between Sen. Dibble and Rep. Melin. It was super-restrictive as it was and already excluded many patients. Parenthetically, I doubt that figure of 5,000 patients expected to receive processed cannabis products under the Melin pretended compromise version.
Because it will be difficult and intimidating for physicians to participate, most of them won't. It will be difficult, intimidating, and expensive for patients to participate--most will continue to seek clandestine sources or will move to one of the free states.
It seems Rep. Melin wanted to provide relief for the constituents who came to her from her district; the predicament of other patients somehow didn't seem to command as great a degree of commitment from her, when push came to shove.
It is my impression that Marijuana Policy Project actually recruited Rep. Melin as the main sponsor of the bill that MPP wrote.
The voters of Minnesota may have a chance to weigh in on Governor Dayton's despicable performance on this issue. While Dayton will be renominated and the Republicans will also predictably nominate a prohibitionist candidate against him, the Grassroots Party (now re-styled officially as the Grassroots-Legalize Cannabis Party) will begin circulating petitions on Tuesday to place a gubernatorial ticket on the ballot for the general election.
Chris Wright, candidate for Governor, ran against Dayton in 2010; David Daniels, the Lt. Governor candidate this year, was the Grassroots challenger when Dayton ran for US Senate in 2000. Mr. Daniels, a long-time cannabis reform advocate, is also a survivor of stage-IV cancer, and will bring an interesting personal perspective to the contest.
Passing the Melin bill won't be the last word.
Posted by: Oliver Steinberg | May 16, 2014 at 11:43 PM