My friend Shelly changes her fentanyl patches every two days. It used to be a single patch every three days. Now it’s two patches every other—for a combined 62.5 mcg. Her story is written between the lines in a Washington Post article that states, “The Centers for Disease Control and Prevention warned doctors in the spring against prescribing opioids with benzodiazepines, except for patients battling diseases such as cancer.” Like Shell.
Diagnosed one year ago with a pancreatic neuroendocrine tumor, Shelly’s in a club she never asked to join. Cancer her entry ticket, she can fill her prescriptions without question. But when she uses morphine and Dilaudid and lorazepam for breakthrough pain and anxiety, “All I can do is sleep,” she says. “That’s not living.”
Her medical marijuana card used to offer an alternative. “Mentally, physically, spiritually, psychologically . . . with the pot, I am living.” Though Shell has been receiving in-home hospice care since spring, she’s been able to make memories with her family: taking road trips to Yellowstone National Park and to Colorado; going camping; canning peaches; and enjoying movie nights, family dinners, and an outing to MontanaFair.
Montana voters approved an initiative to legalize medical marijuana in 2004. In 2011, the Montana Legislature passed SB 423 to repeal the 2004 Montana Marijuana Act and replace it with new regulations. Appeals and court hearings followed, but ultimately the Montana Supreme Court ruled that the law to limit providers to only three patients would go into effect August 31, 2016—the day before Shelly’s fifty-ninth birthday.
Unable to afford to stay in business, her providers were forced to close their doors. I met them in early August when I took Shell to the pot shop. I was impressed with their professionalism, knowledge, concern for Shelly, and array of products. Her providers applauded testing, taxation, and regulations, but were frustrated with Montana’s forthcoming legislation to limit access. Since 2004, registered medical marijuana Montanans have been treated for cancer, chronic pain, multiple sclerosis, Crohn’s disease, epilepsy, and more. But when the law changed on August 31, Shell and 11, 849 other registered cardholders lost their providers.
Pharmaceutical billionaire John Kapoor described his late wife’s cancer struggles in a recent Forbes article: “I saw what she had to go through, and I can tell you, pain is such a misunderstood thing for cancer patients.” Following her death he developed Subsys, a fentanyl spray for under the tongue administration to provide rapid relief for breakthrough cancer pain.
But in 2014 the NYT described off-label Subsys use, higher sales rep commissions for selling higher doses, and company plans to seek approval for broader use. The article quoted Dr. Lewis S. Nelson, a medical toxicologist at the New York University School of Medicine: “If you’re waiting to die, you should die in comfort and dignity. It’s very different than if you’re attempting to have a functional life, because these drugs are relatively incompatible with having a functional life.”
Shell is receiving hospice care, but she is not waiting to die. She recently danced at her daughter’s wedding, and is looking forward to another family celebration in the coming days. She had stocked up on enough pot “to last through September” but now it’s October and she doesn’t have a provider.
I talked to her two days ago. She sounded rough. She asked if we could talk the following day; she had a call in to her hospice nurse to increase her fentanyl patches. She didn’t want to load up on morphine or Dilaudid—they exacerbate her opioid induced constipation (OIC), despite stool softeners and Milk of Magnesia. She’d been rationing her marijuana lozenges because she didn’t want to run out. Montanans voted in 2004 for more humane treatment.
We will get the opportunity again this November with I-182, a ballot initiative that would, among other things, repeal the three-patient limit. Eight other states will vote on marijuana initiatives this fall: three on medical marijuana; five on recreational use. Twenty-five states (including Montana), the District of Columbia, Guam, and Puerto Rico have passed marijuana legislation.
A 2015 Gallup poll found that 58% of Americans support legal marijuana. A study by economist Darin F. Ullman reported that medical-related absenteeism declined after the legalization of medical marijuana, and, according to CBS News, “it estimated that the overall impact of the legal marijuana industry on the U.S. economy for 2016 would be as much as $17.2 billion.” Cannabis remains illegal under federal law, though the DEA acknowledges, “No death from overdose of marijuana has been reported.”
Not so for opioids. In 2014, there were more than 14,000 U. S. deaths involving prescription opioids. Articles pepper the news about our nation’s opioid epidemic and its devastating societal and economic effects, and Forbes tells us that even though the FDA approves Subsys solely for cancer patients, its continued off-label use has resulted in antikickback statute violations and an accidental death.
Shell called yesterday after sending this email:
Shelly needs her fentanyl patches, but she also needs medical marijuana. If you live in a state that will be voting on a marijuana initiative this November, I urge you to please vote FOR legalization. Legalize. Regulate. Test. Tax. Enable Shelly, and others like her, to live the functional lives they deserve.
You’re a beautiful, proactive friend and human-being Karen! Here’s hoping the State of Montana and her residents are as kind hearted and look past the stigma of the name “marijuana” and recognize it’s value in healthcare!
Thank you Amy. Montanans showed their compassion and wisdom in 2004, and I am hopeful we will see a repeat victory in 2016.
I lost my step dad to this awful disease, but with the help of medical marijuana he was able to enjoy spending time with his family. My kids didn’t have to see him vomiting blood or screaming in pain. They could go fishing and have barbeques with him not having the thought of his cancer on their minds. They enjoyed time spent with him, he remains in their thoughts everyday. Without his green card we would have never had the quality time together that every family needs. I vote yes, for you Shelly and for my papa rick! I love you Auntie!
Medical marijuana’s reach extends far beyond the lives of the patients who so desperately need it. Thank you for sharing your family’s story, Beck. The memories your step dad made with you and your children are palpable. I’m sorry for your loss. May sweet memories blanket you in comfort.
The real crime about marijuana – cannabis – is its illegality. That has caused more physical harm to individuals and their families as well as financial harm and even devastation while cannabis itself is physically benign and relatively inexpensive. The reaction of the legislature was one of prohibitionists trying to make it impossible. No other retailer or provider of anything is limited to three customers and expected to survive. Their callous disregard of the harm of prohibition makes them unfit as public servants so the citizens must take up the cause and vote for common sense reforms as well as as jurors voting to acquit in cannabis cases on the basis of unjust laws.
“No other retailer or provider of anything is limited to three customers and expected to survive.” Spot-on, Graceman. I have faith that citizens will take up the cause this November.
Dear Karen, what a great teaching, informative article!! I’m certain that you helped many people to realize the straight scoop and how it helps so many people to have a much better pain-free, happy, end of life. I think you explained so well how much it helps patients. Hopefully many will read it and realize how important it is for the cancer patients. Shelly, I’m praying, is still able to continue receiving it or some med to help her pain so she can still enjoy life. God Bless her, and you. Keep up the good work!!! Catherine Ann
Thank you, Catherine Ann, for a lifetime of championing what is right and just! We need to spread the word about I-182 and the necessity of medical marijuana. Opponents are circulating a lot of misinformation.