The opioid crackdown is making life untenable for chronic pain patients like me

The opioid crackdown is making life untenable for chronic pain patients like me

President Trump recently said that he intends to declare the opioid crisis a national emergency. If he makes good on that promise, it will be the country’s first official state of emergency for a drug epidemic. That designation would make more federal funding available for curbing the crisis, and likely result in stricter limitations on new and existing opioid prescriptions.

When I hear the words “opioid” and “emergency” in the same sentence, I panic: Is my prescription running out? I have stage-3 neuroendocrine cancer. For me, not having opioids would be an emergency.

Every three weeks, for the last four years, I’ve had radiation treatment to suppress the cancer. Both the cancer and the treatment have left me in constant pain. I’ve tried everything. I drink bone broth. I slather the damaged nerves in my elbows, hands and feet with Bio-Freeze and Frankincense. I meet weekly with a massage therapist. But what seems to work best are oblong pills with a big “V” stamped on one side — Vicodin.

They make it possible for me to work. I teach creative writing and literature at UC Santa Cruz. To get from my car to the classroom, I have to walk up a large hill carrying two bags that contain my laptop, books, student papers and a cosmetic case full of medication — five bottles of pills, for nausea, digestion, headaches and pain. Together these bags weigh 32 pounds, and everything in them is necessary.

Once in the classroom, I usually stand for an hour and 50 minutes. As I write on the board, I can barely feel my fingers because of tingling neuropathies. When I sit down to hold discussions, I struggle to find a position in my hard plastic chair that doesn’t cause lightning bolts of pain to shoot through my body from the injection sites on my backside.

No one notices all this pain because of the Vicodin I take every six hours. It works so well, in fact, that last year, I was one of eight faculty members chosen out of a pool of more than 500 nominees to win the coveted UC Excellence in Teaching Award. So why do I feel like a criminal when I go to CVS?

There is no doubt that opioid misuse is a real problem. But it’s also true that less than half of all adults who misuse opioids do so through a prescription. The rate of misuse is much lower among patients who are prescribed opioid medication for chronic pain — 21% to 29%, according to the National Institute on Drug Abuse. An even smaller percentage of chronic pain patients develop a disorder — between 8% and 12%. In a 2016 poll conducted by the Washington Post and Kaiser Family Foundation, a majority of long-term opioid users said the drugs had dramatically improved their lives, relieving pain when nothing else worked. More than two-thirds said the relief was well worth the risk of addiction.

This latter category is the one I fall into. After undergoing surgery to remove my cancer tumors in 2014, I was prescribed hydrocodone. The medication was effective, but because I had heard about the dangers of using opioids, I tried to cut down and get off it several times during the first two years. Every time I tried, the pain returned. I couldn’t focus or write cogent responses to my students’ papers — the pain was too acute.

About a year ago, I went to my oncologist’s office to get my prescription renewed and found that no one there was authorized to complete this routine task. I would have to wait three days until my doctor returned, I was told. In many places an opiate prescription can be renewed only by a doctor through special triplicate prescription forms or a phone call to the pharmacy — a ridiculous thing to require of a busy oncologist.

I will never forget those three days of waiting. Without medication, I began to vomit, shake and cry. I couldn’t concentrate, grade papers or function at all. I went through the kind of deep physical withdrawal Jamie Foxx portrays in the movie “Ray” when the real-life music legend he plays, Ray Charles, finally kicks heroin. And for what? I didn’t plan to quit.

Trump has been vague about what specific measures he would adopt in a state of emergency, but it’s clear that limiting prescriptions is becoming the preferred tactic across the country. Sens. John McCain and Kirsten Gillibrand have proposed legislation to limit new opioid prescriptions to seven days. New Jersey already has a five-day limit in place. Limits of three to seven days have been imposed in Arizona, Connecticut, Delaware, Maine, Massachusetts, New York, Pennsylvania, Rhode Island and Vermont.

Not all opioid users are destined to become heroin addicts, criminals or victims of overdose. For millions of people suffering from chronic, acute pain, regular life would be impossible without this medication. Limits on opioid prescriptions will harm patients like me. The American Medical Assn. understands this; it has warned that this “blunt, one-size-fits-all approach” takes treatment decisions away from doctors and patients. People who take opioids for long-term chronic pain need easier access to prescriptions, not more hurdles.

Melissa Sanders-Self is the author of the novel “All That Lives.” She teaches literature and creative writing at UC Santa Cruz.

5 Responses

  1. Why are legitamite patients with cancer and chronic pain being hassled when trying to obtain pain medications from Doctors? If that is Congress answer to solving this country opiod epidemic, they need to do something different.

  2. I have always admired Sen McCain as both he and my dad were in the Navy around the same time and served on the same ship. My prayers for him and his family on his recent brain cancer diagnosis. My issue is we all know he is probably already receiving pain medication and will have zero problems getting his pain relief without question because of his cancer diagnosis. IMHO, one can see the DOUBLE STANDARD of the ‘everyman’ CPP struggling to get his legal pain medication vs a member of Congress who has gets his no questions asked. As we found out the other day from the news, the pharmacist who services the Congress pharmacy has dispensed many bottles of Aricept and Namenda……Be interesting to find out how many Congressmen are on chronic pain meds yet are denying ‘everyman” CPP the same rights

  3. They will change this diabolical course of action when thousands of chronic pain people start committing suicide. How many more deaths do we need to understand that the chronic pain problem is not something that can be stopped by taking away pain meds. Most people using pain medication for on going (chronic) pain do not misuse thier drugs and don’t sell thier drugs. But it is looking like we will see more deaths related to pain medication. As a chronic pain patient the future looks very frightening. I don’t have children to stay alive for, just cats. Will that be enough to live in pain, or not. It’s crazy to be in the middle of these ridiculous and dangerous times, I have been using pain meds for over 20 years and have never had problems, even been able to reduce the amounts of pain medo used. I’m not too happy about the side effects, mostly constipation. But to live without pain, or little pain, let’s me be a normal person, I have no desire to get “high” from pain meds, most people needing pain meds don’t, we just want a life.

    • They’re not going to care about suicides. They are just like the Nazis that euthanized the disabled during WW2. No, this is going to go in the same direction as the race-based violence between citizens and the Govt.. As thousands more CCP’s suffer and are killed by greed & ignorance, violence will ensue. Not everyone is gonna crawl away with tail between their legs. There’s already been family members and lived ones of CCP suicide / homicide victims that went and shot those that caused the suicide of the patient. I’ll try to find the link to the story. Husband went back and shot the Dr..
      Unfortunately, violence against others that goes unnoticed can result in ‘An eye for an eye’ vengeance. It’s already happened and will probably continue to happen until this mass murder stops.

  4. There something very very sneaky about this 1 too..Does anyone know,,if ,”declareing a Emergancy,” grants new powers to the dea or any government entity??
    Its terrible enough when us cpps can’t get medicines for painful medical conditions,,,it is also terrible that a human being w/cancer can’t get their medicine either!!!
    Klonodyn has changed definition,laws,regultion that have been on the book for over 200 years,,Yes now under klonodyn definition,,all of us addicts,,no-matter there is a medical reason for our physical pain,,,thats how inhumane our country has become!!!!!AND ITS WRONG,,KLONODYN IS WRONG,,ITS IS WRONG THAT CANCER PATIENTS CANNOT GET THEIR MEDICINE!!!!maryw

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