Monday, January 8, 2018
Over the holidays, unfortunately I had the experience of learning more about how older consumers struggle to understand what safe and effective treatments are available. In this instance, my mother, in her 90s, was experiencing overwhelming back pain. She has a long-history of osteoporosis (and it runs in the family on the female side, so my sister and I pay particular attention to this issue!) and in the last few weeks without any known "accident," she had begun to find it almost impossible to walk without pain. She's not the complaining type, and, having been raised by parents who were Christian Scientists, she tends to follow a "mind over matter" approach to this kind of problem. But, by Sunday last week, it was no longer possible to pretend she wasn't deeply uncomfortable.
We began another health care odyssey. Some of the steps we had already learned from past "holiday" experiences with my parents, including calling the "non-emergency" 911 number to get an experienced EMT evaluation of her status in the home, and, if necessary, a transport from her home to the emergency room. Then, recognizing that New Year's Eve is probably not the best night (if such a thing even exists) to spend in the local hospital's ER, we decided to go early in the morning.
Five hours after our arrival in the ER, we left with a new "LSO" back brace, instructions on how to use it, and prescriptions for a different walker and a new pain medication. On the latter point, we informed the ER physician of the fact Mom had not done well on narcotic pain relievers in the past ("why are those ants crawling on the walls") but we were told the drug prescribed was like a very strong Ibuprofen, but in a formulation that would not interact with the blood thinner she was on or her pacemaker.
We duly stopped at the pharmacy on the way home, and I signed my life away in order to pick up her prescription as she was unable to walk in to get it herself. When we got home, there were two documents in the bag with the prescription, including what I would call a typical "product insert" that looks like a page from the Physician's Desk Reference and a second sheet entitled "Directions for Use." The top of the instructions warned, "This is a narcotic drug and not recommended for the relief of pain in...." And then the list of disqualifying conditions included at least 3 of my mother's age-related conditions. Yikes!
My sister and I are not usually intimidated by product inserts, but here the instructions seemed directly at odds with our concerns about narcotics for mom. Everything we found on the internet only made us more confused and worried.
By this time it was late on New Year's Eve, her pain was increasing, and we knew we couldn't persuade her to go back to the ER and her primary care physician wasn't on call. The bottle said "every 6 hours." The ER physician had orally told us "every 6 to 8 hours," and finally we knew we had no choice -- her pain was real and we started using it at 12 hour intervals, gradually moving down to 8 hour intervals before she seemed to have real relief. It was another 5 days before her very kind primary care physician could squeeze us in for an appointment to have a more complete conversation -- and the good news is that we are now more comfortable about a longer range plan.
So on the heels of that multi-day experience, I was very interested in an article I spotted for my airplane trip home to Pennsylvania from Arizona. Phoenix Magazine had a detailed feature story in their January 2018 issue on "Pharma Chameleon," reporting on the arrest for fraud and racketeering charges of INSYS Therapeutics founder, a "billionaire executive" in Phoenix, well-known for his work on painkiller medicines. The history of this executive has nothing to do with my mother's pain relief medicine, but it was definitely a reminder that the pharmaceutical industry is deeply involved in pursuit of the "next" generation of painkillers. And, of course, this article contrasts with the recent news that a different drug company is dropping R & D for a dementia drug. Pain-killers are still "in," and dementia drugs apparently are "out."
So, I recommend the Phoenix Magazine article! I was particularly struck by this paragraph:
In November, Kapoor [the Phoenix-based INSYS executive arrested by the feds] pleaded not guilty to all charges and is currently awaiting trial, along with the six other former executives, who pleaded not guilty last January. All have severed ties with INSYS, which continues to do business. In July, it received FDA approval for a new drug, Syndros, a synthetic form of THC, the psychoactive component found in cannabis, to treat chemotherapy-induced nausea and loss of appetite in AIDS patients. As it did with Subsys, the company is looking into ways to manufacture the drug as a sublingual spray. Under Kapoor, the company donated $500,000 to the effort to defeat the measure to legalize marijuana for recreational use on Arizona’s 2016 general election ballot, paving the way for the synthetic substitute.