MPAA  press con Steve Sailing  ALS cannabis patient
Channel: Compassionate MedicineMA
Date: 01/05/2014

MPAA Press conference
April 24, 2014
Boston State House

Matthew Allen
Executive Director
Massachusetts Patient
Advocacy Alliance

Steve Saling 
Condition: ALS
paralysis and
Chronic-pain

Executive Director of the Massachusetts Patient advocacy alliance, but before we get started with the press conference I just wanted to make a couple of announcements. The first is that we're here to talk about implementation of the medical marijuana law, that the voters passed in 2012. So this event is not related to certain bills, that are being heard in the judiciary committee today, around taxation and regulation of marijuana for recreational use. This is a seperate issue, and we're here to talk about medical marijuana. Finally I just want to say, that after this press conference... I'm going to say a few words, the patients will speak for a little bit, and after that we're going to deliver a letter to the Governor. First we're open to questions from the floor, then we're going to travel down this hallway here, take the elevator down to the first floor and deliver a letter. 

So let's get started. As I said my name's Matt Allen, and I'm the Executive Director of the Massachusetts Patient Advocacy Alliance, which is a coalition of medical marijuana patients, family members, and medical professionals & public health groups, working to promote safe access to medical marijuana for patients in the commonwealth. We're the group, that backed the medical-marijuana initiative, and since then we've been working to make sure the implimentation of the law; works for patients and communities. Today we will hear from patients and family members of patients with:MA,ALS,epilepsy,severe chronic-pain, ulcerative-colitice, and other serious conditions urging the Governor to advance implementation on two fronts. Number one we're asking the Governor to register dispensaries to operate immediately. It's been over a hundred days since the statute mandated, that the state do this. 

I want to emphasize, that all registrations are probationary. and they can be revoked at any time. They can be revoked if any implementation issues come up, or if it's determined; that applicants are unsuitable for any reason. So there is no reason, for further delays. It's time to finish the verification process and issue registrations to these dispensaries. We particularly need a dispensary in Boston, due to it's population, proximity to public transportation, and the density of medical facilities here. 

So we hope the city will work with operators, to get their doors open as soon as possible. We also need dispensaries in other metro areas. And we're concerned about access in areas like BERKSHIRE, franks, dukes, and Nantucket counties, where at this point no dispensaries are slated to open. 

And this brings us to our second point, which is the need to change the caregiver regulation. If the caregiver system, which is the home cultivation system, was functional that would be a real option for patients, where implementation of dispensaries is delayed. But however, right now the caregivers, can only cultivate for one patient. And this system, just does not work under this restriction. It means that a patient, who's given a medical marijuana recommendation, that has to find a caregiver, and wait three to four months, for that medicine to grow. In Road-Island & Maine caregivers, can cultivate, for up to five patients. So there's an existing network of experience, reliable, and compliant caregivers, that patients can easily connect with. Furthermore there's not much difference in cost, if a caregiver is supplying for just one patient Verses five patients. So expanding that regulation, will bring savings to patients. The caregiver system will not be a viable option, unless this regulation is changed.
    My name is Steve Saling, and I had a very active life until eight years ago. That is when I found out I had ALS, also known as Lou Gherig's disease. The nerves that control my muscles, have mysteriously withered and died. No one knows why, and there is no cure. I have to speak with this computer, because my adenoids became to weak to speak. Through lack of use my muscles, are wasting away. The discomfort of my severe spacticity, can be terribly uncomfortable.
~
I understand the need for responsible regulation, but the limitations need to provide viable access to people like me. Regulations must be changed, to find a better balance, between the perceived risk, and the very real danger; that the law will leave people to suffer needlessly. 
    Governor Patrick I am asking for your support once again. Thank you all for your time. 

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