Hello Everyone! My name is Krista. I have a connective tissue disorder called Ehlers Danlos Syndrome as well as skull and spine abnormalities that I was born with. I have spent most of my life in pain. I have been a cannabis patient for the past 6 years. Prior to cannabis I was reliant on round the clock narcotics that made it possible for me to barely function, and I spent much of my time on the couch. But in the last 6 years with the help of cannabis I have become a patient advocate, I started a support group for others with my condition and we have been meeting for the past three years. I’ve been able to progress with my physical therapy program and stay in the best shape I can while battling the constant injuries that are a part of living with EDS. In March I will be having my 14th surgery. This one is to reconstruct the lateral ligament in my ankle using a cadaver tendon, and that isn’t even the most interesting operation my body has endured over the last 38 years.
Cannabis has allowed me to live a good life, to help others, and contribute to the world, it has made my life worth living again. The Governor’s proposal would make the medication that I rely on completely unaffordable for me.
I am treating a severe condition that will never improve. I currently use at least an ounce of medication a week, when I have surgery that amount will increase. I currently grow my own medicine because that is the cheapest option for me
Plants are susceptible to mold, rot, bugs, they get damaged from too much humidity, heat fluxuations and interruptions in electricity. This is farming, anything can happen. If I only have one or two plants to work with at each stage I can’t possibly have a perpetual grow that provides my medicine year round, it just won’t work with those numbers. Even if I somehow managed to create a monster plant that would give me over 4 ounces…I’m not currently able to have that much dry medicine at a time, so how would I be able to provide for myself year round? The proposed changes to bring my plant count down to a total of 6 plants from my current 24 wouldn’t just make it difficult, it would make it completely impossible for me to be able to afford my medication. I would not be able to provide for myself, and instead of paying 3 thousand dollars a year for my medication I will be forced to buy at the Compassion centers that don’t carry the specific thc/cbd ratios that I require and would cost me over 16 thousand dollars a year! (40 dollars and 1/8th, 320 an ounce, 320x52=16,540) I have been on disability from before I turned 30, I don’t have that kind of money, I don’t know any sick people who do.
My medication should not be taxed. It should not be taxed at the compassion centers and it should not be taxed by how many plants I am growing. Adding 150 dollars annually per plant based on the idea that I somehow make 17 thousand dollars by growing my own medication is flawed. I cannot make money on something I am consuming as my medication. I do not sell it. I am not a corporation to be taxed but a real live human with a catastrophic disease that causes constant pain and medical emergencies and I am just barely getting by as it is. Adding a tax to this, adding any more financial burden to my already overburdened state will simply collapse me. I will be forced to either move to a friendly state like Maine or Colorado, or stay in RI and become a criminal growing outside of the program.
I’m not a criminal. my only crime is that I was born with a devastating illness with no cure, no treatment, a guarantee of pain for the rest of my life, and a strong desire to live my life the best way I can!
If gifting hadn’t existed when I first started out I wouldn’t even know what medicine helps me and what to avoid. I’ve also benefitted from the gifting program when I lost my garden to a bug infestation. Removing gifting would make it much more difficult for new patients to navigate the program as well as low income patients who can’t afford to pay and people like myself who sometimes have a garden emergency and need a little help until we get back on our feet.
We have such a great program in RI right now, it isn’t perfect, there are still too many patients suffering stigma, too many going without because they can’t afford the medicine or the license fees. The proposed changes would make this medication unaffordable to the sick, and isn’t that who it is for? If we want to generate income I urge the governor to look into taxing and regulating recreational use and help, not harm our patient community. Please keep this medication affordable, we need less fees not more.

​Hello, my name is Wendy and I am a Rhode Island resident.  In December, 2012, I was diagnosed with lung cancer, Stage III.  I had four rounds of IV chemotherapy and 30 doses of radiation (5 times a week for 6 weeks) following my biopsy.  Needless to say, chemo and radiation had turned me into a hollowed out human being.  At first, the doctors thought it helped.  Well, lo and behold, they were wrong.  My lung tumor increased in size and they wanted to start me on oral chemotherapy.  I did as they asked and ended up in the hospital 3 times in 3 months, almost dying in the doctors’ office and experiencing total kidney failure.  During my hospitalization, I was also informed that they had “missed” the fact that I had bone cancer.  I was suffering – badly.  And there was no treatment left for me.  As a result, my cancer metastasized to my brain, twice.  I had to have Cyberknife radiation therapy both times to eradicate the brain cancer spots.  After all of this treatment and the fact that there was nothing available to me, or so I thought, I just gave up.  I refused to go to the doctors, refused a “trial” oral chemo and decided I wanted to live my life in a way that would be quality over quantity.  I did not want to spend the rest of my life in and out of hospitals, constant testing and restrictions.  Fortunately, I was able to see a bio-magnetic therapist in Mexico.  He informed me that I could beat my cancer and treated me twice in a way that only he and others like him understand.  He forbade me from having further radiation as he could not use the magnets on me due to the high amount of radiation my body gave off.  He suggested many helpful daily things, like limiting dairy, sugar and ingesting alkaline food/water to thwart the growth of cancer, since cancer cannot thrive in an alkaline environment.  The luckiest day came when I was contacted in late 2015 by an angel.  He indicated that he and his partner were making marijuana oil and that I should give it a try.  I had my medical marijuana prescription card, but was not finding much relief in their flowers or edibles.  I met this gentleman and bought the oil.  Immediately I could see a change in myself.  This was confirmed when I went to the have a head MRI in December, along with a  PET scan to determine the status of my cancer.  Keeping in mind that I had only been using the oil for approximately 3 months, I was hesitant to return to the doctors.  On the day of my head MRI, I got an “all clear” from the neuro-oncologist and his nurse calls me her “little miracle.”  Then I went to my medical oncologist for the PET scan in mid-December.  My doctor was very happy with my vitals (I fixed my own kidneys, after dropping to 95 pounds), my appearance and my general well-being.  But the PET scan was going to be the true test.  Several weeks went by and I heard nothing.  I was sitting on edge – and then I got the call.  To say I was nervous is the understatement of the century.  My doctor had ordered copies of my old PET scans to use as comparisons to the December, 2015 scan, which had resulted in the long wait for the results…..which were that I had LESS cancer.  Less bone cancer and less lung cancer and my brain was cancer free as well.  My doctor has 2 doctorates and she is quite brilliant.  She was astounded and did not know what to say.  She said that she had never used the word “miracle,” but said that I seemed to be one.  My cancer seemed to be reversing itself, all because of the marijuana oil.  In fact, she recently called me to ask my permission to present my case at a medical conference.  To even think that I may not be able to obtain the marijuana oil is something I cannot even fathom.  Not only is it prescribed, but unlike other prescriptions, I have to pay the entire price out of pocket.  If the government starts taxing the growers unnecessarily, it will cause me to make a choice between paying my bills or saving my life.  I think we know which I will choose.  In no uncertain terms, I want MY representatives to know that this is saving my life.  And it could save SO many more.  There is no reason that the growers are not subsidized by the state!  The use of this oil has saved my health insurance thousands and thousands of dollars.  One bag of my IV chemo was $18,000.  I could have medical marijuana oil for the rest of my life for the cost of one bag of chemotherapy.  This fiscally does not make sense to any rational human being.  In total, I have probably accrued over $1M in medical costs “treating” my cancer via conventional methods employed by physicians and hospitals thus far.  If only I had known about the marijuana oil back in 2012 or 2013 and I probably could have saved myself a lot of physical suffering, as well as the cost of all the prescriptions I paid for and co-payments and deductibles.  I can never thank my angel of life enough – if it were not for him, I probably wouldn’t be here.  The people need to STOP the government from denying out right to healthcare, in any form.  By overtaxing a lifesaving medication, the government is essentially issuing death sentences.
 
Thank you for your time.

My name is Shane. I am a caregiver in Rhode Island. I personally can not believe the way that we are not being represented in this states government. My patients and I do not receive anything close to 17,000 dollars per plant. That is simply preposterous. The facts are that one plant, if grown in optimum conditions with an experienced grower will yield anywhere from 1 pound to tops 1 and 1/2 grown indoors, as we are allowed by law to do. Now I can't even release proper numbers or say much because as we all know the medical laws only allows caregivers and patients to have at maximum 2 ounces, which is ridiculous in itself as it defies the logic in how much you can receive per plant as mentioned above. But given, at maximum, street value of a pound of pot is 3000 dollars. Let's remember now, patients cannot afford street prices of marijuana, that's why we grow it for them. So theoretically we are receiving less than 3000 per pound, which at most per plant is 4500, which rarely ever happens. So if I were to be taxed 350 dollars per plant, that would be 4200 dollars a room with 12 plants in a room. That is not including the electric bill due to the high requirement of electricity with the lights the cost of nutrients and the cost of trimming the plant would cause me to go bankrupt. I am not a greedy person, I am in this business to offer a decent alternative to opioids or other prescription medication at a lower cost. But I will no longer be able to do that if the governor is allowed to tax what ever she likes with no repercussions. I would urge any person in this state that would be upset if their medicine was taxed to stand up and say no to this, no tax for medical marijuana. If the governor is so desperate to create revenue, legalize and tax recreational use. Do not put the burdon on sick people. 

Thank you,
Shane the grower

My name is Ellen lenox Smith. I live in N Scituate, am 65 years old , was a former middle school teacher, master swimmer, and high school swim coach. I raised four sons on a small farm with my husband, Stu and am now the proud grandmother of three grandsons.

I live with two incurable conditions - Ehlers Danlos and Sarcoidosis. I  spend every moment of my life making the conscious decision to try to make the best of what I have been given for this is the only life I get. I am not able to metabolize aspirin, tylenol, any of the opiates among other medications. Due to this, in 2007, it was suggested I try medical marijuana for pain since things were destined to get worse. I was scared,  for I hate the feeling out of being out of control of my body. On my mind was remembering the time in college I tried it and reacted and was in bed for the day. However, I discovered that 1 tsp of indica oil at night suddenly allowed me rest and renewed ability to be able to live life with better quality and meaning. In time, both my husband and I became caregivers and grew for others, since the safe supply was limited before the opening of the compassion centers. Doing this, added more value to my life too, for helping others is the biggest gift one can give and it helps you better accept your trials in life. On top of this, I gained new energy with this rest at night that allowed me to take on other forms of volunteering. Today we are RI Ambassadors for the Arthritis Foundation, on the board and co-directors for medical marijuana advocacy for the US Pain Foundation, on the board for RIPAC, appointed by the governor as a patient for ATEL and am a staff writer for Pain News Network.

So, if this proposal goes through,  due to the increased outrageous cost for tags, decrease of plants and more limitation of the number of people I could grow for, we would have to end our grow. The stress, even having to put this on paper is frightening to feel. This would be it for my life, for I would have so much pain to endure that the breathing issues would increase and my heart would give out. My nights of peaceful sleep from my one teaspoon of oil, would no longer be there to help me so I could then be productive the next day. Since there is nothing more for me to turn to, this would be my sentence of earlier death.  It is that scary and real!  So, if this governor does not find her heart, there will be one less person to feed in this world, one less advocate, one less mother, wife, grandmother, and friend.

We will have to shut down our grow, let go of my people I have been caregiver for and have depended on me for years, and will attempt to see if we can still just afford to grow for me or will have to turn to the compassion center. Whichever happens, it will be a hardship for us financially.

May she find and listen to her soul and do the right thing and stop hurting those of us that are the sickest and weakest. This feels like bullying and we don’t deserve it and I know that we all find it hard to find the endurance and strength to fight this proposal.

Ellen Lenox Smith

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ellen lenox smith
https://ellenandstuartsmith.squarespace.com/
RI Arthritis Foundation Ambassador
RI US Pain Foundation Ambassador
Co- Director for Medical Marijuana Advocacy
2010 INvisible Project subject for Ehlers Danlos; www.invisibleproject.org
Pain News Network - staff writer for medical marijuana
RI Ehlers Danlos Support Group
Public Relations Coordinator;
 http://eds.timix.org
 www.ednf.org
 http://www.ehlersdanlosnetwork.org
ATEL Board
RIPAC Board; Director of Communications