I think we can all agree that during events that led to the current climate of the “opioid crisis,” mistakes were made. There are fingers being pointed in multiple directions in the name of culpability, with doctors unfairly taking much of the blame. The companies who manufacture and sell these drugs have taken some heat as well in the form of stiff financial penalties. Then there are the victims of the crisis who have lost their lives, people who have families that grieve for their loved ones and demand answers. What gets lost in this war on medicine is the poor souls who live in constant pain and suffer along with their families. Unfortunately, I fall into this category and have been fully impacted by the measures taken to remove opioid pain medicine as a tool to combat chronic pain.
I find myself qualified to speak on this topic because I’ve spent the past 18 years living with chronic pain after having sustained life-altering injuries from two different car accidents that came 12 years apart. The first accident broke my neck. But after wearing a halo for three months I made a relatively full recovery. I say relatively because after recovering I got my introduction to arthritis and what chronic pain feels like. The second accident simply made things worse: Multiple broken ribs and my spine was torn leaving me paralyzed for likely the rest of my natural life. With my disabled designation I’ve been relegated to a wheelchair and spend far too much of my life in my hospital bed saddled with such severe pain. I have lost relationships, lost the ability to work, and don’t receive the medicine or health care I require to live a normal life.
I am not alone in worrying about the future of medicine as the number of physicians who prescribe these medicines is shrinking by the day. Here in northwestern Indiana, we recently lost another prominent doctor who suddenly closed his practice, leaving numerous patients without pain management. This is not the first time a doctor has had to close their practice and it certainly won’t be the last time. Whenever a doctor still prescribes these medicines, it shows his or her compassion to patients and that shows they are willing to stand up for their patients. But when a doctor suddenly closes their practice, it causes life altering suffering. People suffer mightily and finding a replacement these days is an exercise in frustration. If you allude to wanting any medicine is instantly met with skepticism.
My question is: Are we better off now under a system that discourages doctors from prescribing these crucial medicines? Here in this country, more people have died via fentanyl overdose which has set records the past three years, instead of a system of controlled substances where people know they are taking a safe and measured dose. Sadly, many will turn to the streets for their relief, and I fear many more people will die before they stop blaming doctors and punishing pain patients: The law-abiding citizens who simply depend on pain medicine just as a diabetic depends on insulin. None of the patients are on “narcotics” because of the taboo they have become. They don’t choose to be on these medicines. I even despise the word narcotic because it has negative connotations. When I hear narcotic, I think of illegal drugs being bought on some street corners, almost a police term.
My question is: What is the alternative if we are going to remove pain medicine as a tool to combat pain? The only FDA approved medicine for chronic pain is opioid pain medicine; and if the plan is to eliminate that treatment, there has to be a viable alternative. If not, we will continue to see patients taking extreme and dangerous measures to treat their painful conditions. When the alternative to managing pain is more dangerous than using conventional pain medicine, I think we need to re-analyze this approach. I agree that the treatment of pain via opioid pain medicine is not the first option. In fact it should only be employed when other methods have failed. But once all other methods have failed, there needs to be an understanding that these medicines have a role in treating pain. Once a patient loses the quality-of-life battle, they start losing the will to live. I implore you to think about what it must be like to have untreated pain govern your entire life, and then be told your suffering does not meet the threshold to merit receiving the only means of relief.
Chronic pain affects every aspect of my life, which means it affects the lives of family members who must endure the suffering as well. I just ask you to examine what it must be like to walk a mile in my shoes, or in my case roll a mile, as I will likely never walk again in my natural life. The weight of my affliction has forever altered every aspect of my life and I fear for the future. People with a disability already shoulder a heavy burden, so why make them suffer the indignity of enduring the type of pain that makes life nearly impossible to enjoy?
As an advocate for chronic pain patients, caregivers, and their physicians, I see narratives like this one every week. I have despaired of ever seeing the US CDC and Veterans Administration admit to their errors and the harms they have done. Thus I have filed formal complaints against the authors of the CDC Guidelines, with both the Office of Civil Rights in the Department of Justice, and the Office of the Inspector General in the Department of Health an Human Services. Next week I will begin distributing copies of these complaints to Legislative Directors and Chiefs of Staff in both the US House and Senate.
Other advocates are also mounting legal challenges. We will not take “no” or silence for an answer.
WE ARE A NATION IN PAIN AND WE WILL NOT BE SILENCED!