Intractable Pain Certified Patient Comments - Minnesota Dept. of Health

Intractable Pain Certified Patient Comments

Comments posted 10/2/15

  1. [Second public testimony] I’ve been in remission from Crohn’s disease. I’m actually testifying in memory of my father who passed away suddenly one year ago at the age of 46 from a form of arthritis where the vertebrae fuse together. My grandma has the same condition and Crohn's disease as well. He never went to the doctor for this because he knew that all he could get were opiates. He raised us while my mom worked. The definition of intractable pain in Minnesota is so restrictive that if he wanted to try it he wouldn’t have ever had that opportunity. I know the advisory panel has the option to change that definition and I am asking you to do that and there’s no reason to send people to get opioids when cannabis is a perfectly nonlethal form of treatment. [Follow up question: Which parts of the definition do you find most restrictive?] The definition now requires two pain specialists to sign off, which is a massive barrier. People can’t even find one doctor to certify them. It also forces you to go through all other standard means of treatment. I would suggest not forcing people to go through opiates first.

  2. I’m 33 years old and a disabled citizen of Spring Lake Park, Minnesota. For over 5 years I’ve been using cannabis to treat my life threatening gastrointestinal autoimmune disease; Crohn’s disease; and 3 inflammatory diseases associated with my Crohn’s disease; Sacroilitis, Cervical Spondylits, and Pancreatitis. I was also born with a genetic mutation, Ehlers Danlos Syndrome Type 2 and live with chronic intractable pain every day. My life almost ended prematurely because of conventional pharmaceutical drug treatments due to the dangerous side effects with anti-TNF biologics, steroids and anti-cancer medications. I’m also unable to treat my chronic intractable pain with oral opiate based pain medications due to my Pancreatitis. The medical option to treat with cannabis is the right of any Minnesota patient suffering for the chronic intractable pain of any medical condition. Cannabis protects my universal right to life, liberty and pursuit of happiness, but returning a sense of normalcy to my daily life by treating my chronic nausea, chronic intractable pain and deadly inflammation from my complex medical conditions. I was able to get my medical conditions, Crohn’s disease and Ehlers Danlos Syndrome legally covered by Minnesota’s Medical Cannabis Law, under the limited qualifying medical conditions of Crohn’s disease and severe and persistent muscle spasms. The only reason I was able to become certified into Minnesota’s Medical Cannabis program is because our state’s law discriminates in favor of my medical conditions. Patients don’t get to choose or decide if we want to become ill, disabled, or have our lives prematurely come to an end due to any medical condition. Minnesota’s Medical Cannabis Law discriminates against a patient’s medical conditions. Patients of Minnesota might not share the same exact medical conditions, but the one medical condition we all share and have in common ins chronic intractable pain. Chronic intractable pain does not discriminate. Every patient has pain, every patient lives, breathes, eats and battles chronic intractable pain, every moment of our lives. Imagine suffering from the second you wake up, every decision you make is based off pain, to the second you fall asleep, (if you sleep). Your whole life is filled with a never-ending battle with chronic intractable pain. Patients living with pain understand there’s a natural cycle to life. We’re aware everyone dies on our planet, all the stars, and everything in the universe. Death comes for us all and we accept it. The one thing we cannot tolerate, not can we accept, is the unnatural progression of the end. The State of Minnesota can end the premature loss of life, please expand Minnesota’s legal definition of intractable pain and please add chronic intractable pain to Minnesota’s Medical Cannabis Law. Thank you for your time.  [Follow up question: How does medical cannabis help you?] Relief of pain now. The two manufacturers are not producing strong enough products. [Showed strongest product.] One gram of this is $200, and I would need 10 per month, so I need $2000. I live on $799 per month from Social Security Disability. So I’m not sure where extra $1300 will come from let alone the money for other things. I wouldn’t be here if I didn’t have cannabis. I’d be dead. Minnesota has lots of problems that have to do with costs and potency. I was chemically burned in my mouth due to additives added by MNMed. It’s been reported and led to MNMed changing the additive in its products. There are very powerful emotional stories.

Comments posted 10/7/15

  1. [Addition to previous comments] I’ve commented before on costs and getting intractable pain added. All those will change dramatically if we get more patients certified to program and increase participation from 400-5000. We need intractable pain because right now it is a broad definition, but we already have one that’s certified, which is severe and persistent muscle spasms that could also be expanded to intractable pain. And we need legal protections for physicians, so if a specific clinical group kicks them out, the government can rectify that. I got my Ehlers Danlos Syndrome certified because of my severe and persistent muscle spasms, so intractable pain would be just as broad. And multiple sclerosis is actually two qualified medical condition because they put comma between the two, so that’s a loophole a physician can use. So intractable pain should be included because anyone can have spasms.
  2. I come to you wearing many hats tonight. I’m a father and medical marijuana patients’ advocate for 24 years. The question I had tonight: should intractable pain be added, and does the commissioner have the authority and support to add intractable pain to the list of qualifying conditions? If you talk to the doctor and some of the patients I’ve talked to, the only way for this program to be a success and to have the numbers we wanted it to have in order to bring the cost down and bring a viable, consistent product in Minnesota-- medical cannabis in Minnesota is not like any other medical cannabis program in country. The only one that comes close to New York, and that has to do partly with lobbying that manufacturers have done from Minnesota to New York. For me, to use medical cannabis, there are a lot of details involved. I have to have a driver that’s willing to take me to a patient center. If don’t have driver, I have to find another way to get there. That means I benefit from use of both patient centers. I don’t prefer one over the other. The reason I’m here tonight is to tell you how important intractable pain is to be added to list because I use medical cannabis about 10-12 times per day. My wife is in a wheelchair as well. She does not qualify for medical cannabis. Therefore if I’m using the program like I’m supposed to and giving state my money like they ask, but because my wife doesn’t qualify from medical cannabis she may get it from another avenue, which right away puts my family and myself in violation of the program. We need to figure out how quickly we can get the commissioner to act on intractable pain and how many families have people using medical cannabis in home that may not qualify and are using illegally. What do those families do? What do people in those situations do? What do caregivers do when they can’t pay the caregiver fee or don’t want to subject themselves to extensive background checks? What about the people in nursing homes? This is why I joined the program-- not because I wanted to try it. I already know it helps, and my doctor already knew it. I wanted to make sure the program was as sustainable as possible, and the only way to do that is to add more conditions. The law was written to the first for ruling is intractable pain. The commissioner will make a decision by end of year, by law. But the problem is that even if the commissioner says yes, the legislature doesn’t have to act upon everything until March 5th.  Any other condition can be added after that, but the legislature will still have final approval when it says which ones will be put on list. It will be just a formality after we get over first couple hurtles. There are doctors that are willing to certify, but the problem is how to get that list out to public. We as advocates didn’t want create a list of doctors that everyone could shop from. What we said is you must have ongoing relationship with your physician or practitioner in order to get certified. That poses challenges. We said there were going to be 5000 patients on the program, and the Office of Medical Cannabis hired 20 people to do that. And they recently decreased staff down to ten because they realized doctors were waiting for the first hurtle with the commissioner. Manufacturers are already loosening up with price and publicly saying what they can say about good and bad providers. And as more patients come out and are more comfortable in telling what they can tell you--I’m not for what’s happening I’ve heard manufacturers are charging $200 above the $200 registration fee to get certified. We’re not for those things and we’ll be watching –we’re not ok with that. [Later comment] I think Minnesota set this program so tightly regulated that it’s challenging for anyone to really benefit from it. Minnesota is not going to be like Colorado or Washington, and it’s never going to be like that ever. And that’s something I had to deal with going through whole certification and the process of 24 years of being of being a marijuana activist and advocate. I’m nationally known for medical cannabis. There’s going to be no dried or smokeable leaf. I was very adamant about it and said it’s not for me; it won’t work, and I will never agree to put my name on registry. I said I was not going to be subjected to law enforcement or teased by people I know at the public health department. The other day I was asked to give and account of what last 78 days looked like. I’m proud to say I’m a medical cannabis user; it works for me, and I don’t have to subject my daughter to the smell or illegal activity. She doesn’t have to know what it smells like or wait for my drug dealer or supplier to come over. My wife says most dealers aren’t just carrying marijuana but other stuff as well. When that person came to my house I didn’t know if that person had other drugs or not. I didn’t know if he would get caught coming or leaving my driveway. In the last 78 days I haven’t had to worry about that. All I need to do is take my medicine out when I need it. I don’t have to get my hands dirty, pack it, clean the pipe. I used to like doing that, but now my wife tells me it’s so much easier. I can take a puff and go to work and no one knows and proceed with my day. When I had to take my street meds and pipe I often had to ask my employer if I could take another 30-45 minutes for lunch. And they say “why?” And I say that I need extra time in bathroom. And I don’t have to do that anymore and it’s because medical cannabis. I’m here to tell you my quality of life is better today than it was 78 days ago.
  3. My daughter [name redacted] has Dravet syndrome—a catastrophic form of epilepsy. We were part of the group that advocated at the capitol, and what I have to say about intractable pain: after I’ve watched my kid’s seizures, after you’ve watched your loved ones suffer, you have exhausted every medical option that you have, and there is a compassionate way that they can be treated it is a no brainer to me. I want to support intractable pain. Our program needs to grow; it needs to help more people. What I want to tell you about my daughter is that she was having nearly 100 seizures a day. She failed 23 pharmaceuticals. She was absolutely having zero quality of life. She’d been silent for 5 years. She’d lost her ability speak eat and at times walk at time. We were doing currently all her care. She was wheelchair bound. She could not safely leave her wheelchair. She started [the medical cannabis program] in July and she has not had one drop seizure since her first dose of medical cannabis. She’s down from nearly 100 seizures a day to a handful a week. She is making cognitive gains. You can hear her verbalize during this presentation. She hadn’t made a sound in 5 years. She’s out of her wheelchair. She’s walking. It is the most compassionate thing we could have done for our daughter. And to still have people against it boggles our minds because if you’ve watched your loved ones suffer, and there’s something you can do to help people--so we 100% support adding intractable pain. We want more patients in Minnesota. More people deserve to be helped by this.

Comments posted 10/25/15

  1. Had it not been for muscle spasms related to amputation of my left foot due to a careless driver hitting me on my bike, I'd be taking increasing amounts of opioids for relief of constant phantom limb pain, because the pain alone would not have qualified me for the MN MMJ program. I understand that MN doesn't want to turn into CA, where any hangnail can qualify someone as a "patient". The Star Tribune had a recent article on the number of people overdosing from pain killers and lives ruined because of their pain pill addiction. Surely, there are verifiable intractable pain conditions that can save people from a life of painkiller addiction that often leads to illicit drug addiction. This is my humble request that MN allow people suffering from legitimate intractable pain the ability to access medical cannabis.
  2. One and a half years ago I had major brain surgery. That paralyzed me on my right side then later caused pain on that side 24/7 and then seizures and then muscle spasms. It took me months to find doctor that would certify me for medical cannabis and finally found a neurologist in office next to my neurologist. I used to sleep two to three hours per night; now I sleep six to seven hours—a major difference. My bones felt like they were breaking, and now that only happens with little tweaks. I found myself fortunate to use medical cannabis for myself and wish others could use this for their needs. I’ve always been considered a health nut. My blood pressure is 60/40, I eat right and exercise. On medical cannabis there are no side effects. I gained a couple pounds, but I needed to. I just wish price would go down. I‘ve always said no to opiates and wasn’t going to go down that lines and get strung up on those. I just hope they will open up to other people.
Updated Monday, August 15, 2016 at 03:06PM