Editor’s Note: I met Peggy through the National Pain Report Facebook page. I thought she was overstating her opposition to attempts to create a California pain policy. We spoke on the phone and I said, “if you feel that strongly about it, write a counterpoint. The California woman did. So we are publishing it.
As a chronic pain patient for the past 30 years, I was skeptical but hopeful that the National Pain Strategy (NPS) would provide relief for California’s pain patients who have suffered tremendously over the last three years due to the force-tapering or abrupt discontinuation of their pain medication initiated not as a result of abuse or lack of response but due to providers fearing license revocation and/or prosecution by the MBC* and DEA** for “overprescribing”.
As I read through the NPS, I noticed a very clear bias against the prescribing of scheduled pain medication for those with chronic pain. While they talk about their Integrative Health model and state that it includes “responsible and reasonable use of opioids for individuals who can’t be helped by other modalities”, there is nothing that defines what is “responsible and reasonable”. Moreover, there are no protections included to allow providers to prescribe at therapeutic dosages without fear of retribution.
The presentation at the Capitol on August 14th, 2019 confirmed my fears when Dr. Hameed’s presentation stated “No New Chronic Pain Opioid Starts” while legacy patients (patients treated with opioids prior to 2016) are limited to 50MME. It left me confused and wondering why the For-Grace organization would support an opioid biased policy that will not restore pain medication for those who so desperately need it to function.
There is frustration among pain patients because there still seems to be an underlying belief among policy makers that if non-pharmacological treatment is more accessible and physicians are more educated, or patients receive more education, CBT***, etc., we won’t need the pain medication. This premise is embodied into the NPS and is patently false.
There is plenty of access to all therapies except opioids. Insurance might not cover it, but doctors have no problem prescribing anything BUT opioids. Pain medication is the only medical treatment we cannot obtain legally by paying with cash.
Some people think pain patients are too focused on opioids therefore we must be addicted. People need to realize that many pain patients paid out-of-pocket and have already tried and failed all the non-pharmacologic therapy BEFORE trying opioids. This was mandated then just like it is today. We tried desperately without success to find a non-pharmacological solution that would control our pain and allow us to function. So yes, we are focused on pain medication. Not because we don’t believe in other therapies or because we’re addicted but because we have no alternatives and are literally dropping dead without them.
One must realize that severe, intractable pain can and does kill. The body cannot take severe, intractable pain 24/7. It attacks the body and results in medical collapse and often, sudden death. So if we want to live, we must have appropriate access to pain medication. Without it, we are being sentenced to a torture and likely to an early death. We absolutely are not saying that non-pharmacological therapies don’t work and shouldn’t be used. We’re saying specifically, they didn’t work for us and we have no alternatives.
So what is different in the NPS? Not much from the patient perspective. There will be an attempt to promote compassionate treatment and respect for pain patients. It seeks to provide extensive education so my guess is they will try to embody compassionate care through education. However, with a model that is biased against pain medication in a society constantly fed biased, misinformation about pain medication by policy makers and the media, I’d say the chances of successfully transforming attitudes toward pain patients are close to zero.
The NPS primary focus appears to be largely about gathering data. It’s seems to be one large clinical trial without the informed consent requirement. Much good can come from this data if patient privacy is fully respected but, unfortunately, the pain patients of today will be dead by the time the data has been collected and studied. We’re dying. We do not have time to wait for the research to help us. We need help immediately.
Pain patients cannot afford to endorse any more pain management or opioid policies until legal protections and assurances are put in place so providers can prescribe therapeutic dosages of pain medication without fear of retribution. Without these protections, nothing will change for those with severe intractable pain who are suffering and on death’s door.
I would encourage the For-Grace organization and those supporting the NPS to consider the arguments I have made and pull their support if these issues are not remediated.
*Medical Board of California
**Drug Enforcement Agency
***Cognitive Behavioral Therapy