Tell the Ohio Statehouse:
Your Voice is Not Represented
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PATIENT and caregiver CALL TO ACTION
Monday, October 10, 2016 - Today we're making a public statement about the finalized appointments for the Medical Marijuana Advisory Committee. A committee with the purpose of bringing relevant stakeholders and affected parties together so that each stakeholder group has the opportunity to share their own priorities and concerns. Indeed any successful reform effort does this for strong ‘buy in’ and mutual understanding. This particular Advisory Committee has the job of delivering recommendations to the state organizations charged with creating the actual and final rules for the Medical Marijuana Law.
The reason for this new law is to help people. People who are established patients who have tried many pharmaceuticals with some degree of failure. And there has been a robust effort from the patient community in response to Speaker Rosenberger's invitation to participate. In fact, he identified it as irresponsible for the patient community to do anything but participate within the statehouse effort. Yet, there is not a single member from the leadership of the Cannabis Patient Advocacy Community represented in this state appointed group. From which, there are ample qualified and varied choices.
Within the committee, the member who represents Law Enforcement has many years’ experience in law enforcement. The member representing Labor, has worked in support of unions. The member representing agriculture, has qualification to represent that community from his experience owning and operating a farm. But the patients and their caregiver appointments were handled differently.
During committee hearings, Statehouse Representative Anielski wondered, aloud, “Why are so many people worried about representation, it says right there, a person who represents patients. (And at that time, it was only a patient rep, caregivers weren’t added until later in the process.) But I believe her comment suggests that Rep Anielski truly believed the intent of the words was to acknowledge that the patient community should be represented into the future.
We believe it is incomprehensible and unacceptable that the state has made the choice to exclude members from the cannabis advocacy community. There is precedent in other states, like Pennsylvania and Maryland, having not so long ago, made the appropriate choice to include qualified patients into their advisory commissions.
This statement should in no way be understood as a negative comment directed towards either the appointed patient or caregiver representative. Mr Bibart clearly adds knowledge of policy. However, In listening to his former testimony, I heard a great deal more about Cole Memo compliance than about how, for example, policies in varied states best address the out of pocket cost for medicine. Both of those things are important within the conversation. Who will be in the room to remind the committee of relevant patient issues? And I have every reason to believe that Mr McCarthy genuinely wishes to support good outcomes for patients. I think he has been put in the challenging position of representing the established patient community.
Both of these choices sidestep genuine representation from leadership that says, “We don’t trust you and we're not sure we respect you yet.” To the established patient community in Ohio.
We understand that it is hard to embrace change and that this is a big one. But we truly believe that there are even state house members, once former skeptics, that now believe this law is moving towards the right side of history with regard to cannabis as a therapy. Those people listened and learned a new perspective. That’s how change happens.
We, in the patient community, deserve to be a direct part of the conversation within the Advisory Committee. It would go a long way, for the statehouse to acknowledge and address this oversight. But we will not wait for a formal platform to provide our perspective, knowledge and priorities, like cost protections, access issues of many kinds, quality standards, real medical advice, research, whole plants, procedures for adding future qualifying conditions, and community education; to name a few.
All concerns will naturally be discussed, but likely from perspectives of other appointees, during the charge of the Advisory Committee.
It is important to note that Ohioans paid attention to the unfolding of this bill into law; some of them have loved ones who could likely be helped. This Medical Marijuana Law has at its core, the purpose of helping legitimately sick people access a medicine that is safer for them. Because let me be clear, it’s likely that the vast majority of early participants in this program will be very sick, ailing people. People who are already taking varieties of medications.
We will continue working towards a United Ohio that supports those patients, as well as those who are not yet covered by the law. I hope you’ll join us.
While United Ohio is starting this campaign to address the lack of representation, the reality is, we need your help. If you feel your voice is not being heard, add your name to the list of patients and caregivers to communicate with the statehouse that you don’t feel represented. We’d also like to encourage you to tell your story, using the #DeserveToBeHeard. Tell your story on social media, add a comment below this video, post on the United Ohio Facebook page, write a letter to the editor, or your representative.
But tell your story, because you deserve to be heard.