Chronic Pain Patients Say Opioid Law Creates New Crisis
AUGUSTA, Maine (AP) — Jane Avery says the pain from her psoriatic arthritis is the worst at 2 a.m. when she can’t sleep and already has met her daily limit on painkillers. Her daily dosage of the drugs was cut in half about six months ago.
Avery, 81, says she and other chronic pain patients are suffering as Maine rolls out the nation’s strictest law targeting opioid prescriptions. By July, Maine doctors will not be allowed to prescribe more than 100 milligrams of opioid medication per day to most of their patients.
State health officials say the law has exceptions that can help the estimated 16,000 Mainers who get high daily doses of opiates for chronic and acute pain. But Avery and others with chronic pain have told lawmakers their doctors say they don’t qualify for an exception.
“It’s like we have to go on bended knee and beg, and it shouldn’t be that way,” she said.
The law comes as Maine deals with the nation’s highest rate of prescriptions for long-term opiate medication. Last year, at least one person died each day in the state from drug overdoses.
And there’s evidence the problem is improving, said Gordon Smith, executive vice president of the Maine Medical Association. Retail prescriptions of opioid painkillers in Maine declined 21.5 percent from 2013 to 2016, compared with 14.6 percent nationally, according to health information company QuintilesIMS.
Maine’s law has exceptions for “palliative care,” cancer pain patients, end-of-life care, hospice care and and medication-assisted treatment for substance use disorder. Some doctors and medical groups say the law doesn’t clearly define “palliative care.”
Several lawmakers at a Thursday hearing said doctors think of end-of-life care when they hear palliative care. Meanwhile, “the state believes that palliative care is anything they need an exemption for,” Smith said.
Doctors are simply concerned about violating the law, said Dr. Alan Ross of Augusta. He said lawmakers need to better define when an exception is OK, something legislators are is considering.
The law also is receiving pushback from the Academy of Integrative Pain Management, an association of doctors, chiropractors, acupuncturists and others who treat pain, look for Dr. Darin Haworth a great chiropractor to manage your body pain..
Protections in Maine’s law were not broad enough and left “many patients at risk of inadequate medical care,” wrote Katie Duensing, the academy’s assistant director for legislative and regulatory affairs, in recent testimony to lawmakers. She said health care providers should be able to prescribe higher doses “on a case-by-case basis.”
Brandy Stokes, a single mom from Bangor with three teenage sons, is awaiting reconstructive surgery and hoping she won’t lose her left leg and foot. She told lawmakers she’s received opioid painkillers for six years, which requires yearly contracts, urine screenings, random pill counts and counseling.
“People who suffer from daily pain are a separate issue from those who are addicted,” she said.
Filed under: General Problems
I am a 69 year old transgender male retired US Navy Officer who is 100% disabled according to the VA. My pain management is not primarily for cancer pain, but for the results of back fractures suffered in Diego Garcia in 1987 which were not properly diagnosed. These untreated fractures cause immediate and permanent pain. It NEVER goes away. In my case, the traumatic injury triggered fibromyalgia, something which was not recognized for 9 years, and which required herculean efforts to continue my military career. I am still fighting to get my fibromyalgia recognized by the military and the VA although it is clearly accepted by virtually every civilian medical agency/person to whom the issue has been raised.
The following are responses to the CDC draft guidelines
CDC Draft Guidelines for Opioid Prescribing
1. Non-pharmacological therapy and non-opioid pharmacological therapy are preferred for chronic pain. Providers should only consider adding opioid therapy if expected benefits for both pain and function are anticipated to outweigh risks.
It has been the clear preference of the head of the CDC that physical therapy (PT) be preferrable to pharmacological treatment, stated publically in many fora. I welcome the emphasis on PT. I have a wonderful PT who has been able to give me significant relief to issues relating to my pain. There is just one problem, which totally obviates the plausability of this recommendation: In order to gain long term benefits from PT which might take the place of pharmacologic treatment, I would need to get treatment at least twice a WEEK and preferrably three times a week–every week, all year long. I am allowed about 18 appointments a year. Who is going to cover the cost of the additional 86-138 treatments required to make this work?
If we can’t afford the cost of medications in this country, how in the world will we afford wholesale PT? (PS: We are woefully short of the required number of PTs)
2. Before starting long term opioid therapy, providers should establish treatment goals with all patients, including realistic goals for pain and function. Providers should continue opioid therapy only if there is clinically meaningful improvement in pain and function that outweighs risks to patient safety.
I started use of opioid pain medications in 1995. How am I supposed to go back in time to institute such treatment goals that were non-existent back then? When I first started with opioids, Percocet, and then Oxycontin, were huge gifts. After 9 years of grinding pain, I had a treatment that gave me a life back again. Not pain free–but NORMAL!
3. Before starting and periodically during opioid therapy, providers should discuss with patients risks and realistic benefits of opioid therapy and patient and provider responsibilities for managing therapy.
See answer to #2. My pain management provider and I discussed the necessity of responsible use. I was given a written contract that obligated me to single pharmacy pick up; single provider Rxs, and possible periodic drug testing. I signed the contract and have NEVER violated the terms.
4. When starting opioid therapy, providers should prescribe short-acting opioids instead of extended-release/long acting opioids.
Well, at the time, many of the risks of Oxycontin were not clear; I was first placed on the relatively short acting Percocet; only later shifted to Oxy, as it was seen as a SAFER policy. The CDC is demanding that prescribers who may have been prescribing this medication to their patients for two decades or more (as in MY case) somehow be held to a standard that is later than the time I started.
5. When opioids are started, providers should prescribe the lowest possible effective dosage. Providers should implement additional precautions when increasing dosage to 50 or greater milligrams per day in morphine equivalents and should avoid increasing dosages to 90 or greater milligrams per day in morphine equivalents.
I have never known a prescriber who did NOT start at the lowest possible dose–that is the norm in medical treatment. Part of the problem in the MED calculation is that the 12 hour “extended release” dose description is an ideal, not a reality. Many of us need to take them 3 times a day. By the time you are taking 60 mg Oxycontin (20 mg 3/day) you have hit the max level of 90 MED. It took me 11 years or so to get there. Tolerance builds up over time. That is also a reality of opioid use. It would be great if we could start at 5 mg, and never need an increased dose, but the most diligent and cooperative patient slowly experiences the need for increasing doses
6. Long-term opioid use often begins with treatment of acute pain. When opioids are used for acute pain, providers should prescribe the lowest effective dose of short-acting opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three or fewer days will usually be sufficient for non-traumatic pain not related to major surgery.
In my case, I had 9 YEARS of medical negligence in my life. By the time I finally started getting quality of care, I was desperate–so desperate that I did not fight early retirement for my medical situation. That decision has cost me over $150,000 in forfeited retirement since then. I was prescribed opioids for CHRONIC, SEVERE pain which no one had addressed.
7. Providers should evaluate patients within 1 to 4 weeks of starting long-term opioid therapy or of dose escalation to assess benefits and harms of continued opioid therapy. Providers should evaluate patients receiving long-term opioid therapy every 3 months or more frequently for benefits and harms of continued opioid therapy. If benefits do not outweigh harms of continued opioid therapy, providers should work with patients to reduce opioid dosage and to discontinue opioids when possible.
See answers to virtually all questions, above.
8. Before starting and periodically during continuation of opioid therapy, providers should evaluate risk factors for opioid-related harms. Providers should incorporate into the management plan strategies to mitigate risk, including considering offering naloxone when factors that increase risk for opioid-related harms are present.
I am acutely aware of the risks of this situation that I find myself in. I would love to not be taking this med. HOWEVER, there is no alternative that anyone has been able to give me. Given that there is no alternative, my one wish is to be able to take the medications that have let me have a life again, and not to be threatened with losing the only benefit anyone has been able to point to. I simply will NOT go back to the way things were BEFORE. I wonder how many other Oxycontin/Percocet users are facing the same reality? You have seen a huge number of deaths of people who have ABUSED Oxycontin. How many deaths will we see of people who have used Oxycontin CORRECTLY, and could not tolerate the loss of this drug which makes their lives livable. Why is a second epidemic on top of the first one some sort of step in the right direction? Go after the abusers…those of us who use it properly will support authorities on this. But PLEASE, don’t do this to us–and don’t threaten our prescribers who are helping us deal with an issue that no one who does not live with chronic pain can fully understand.
9. Providers should review the patient’s history of controlled substance prescriptions using state Prescription Drug Monitoring Program data to determine whether the patient is receiving excessive opioid dosages or dangerous combinations that put him/her at high risk for overdose. Providers should review Prescription Monitoring Program data when starting opioid therapy and periodically during long-term opioid therapy (ranging from every prescription to every 3 months).
Fine. Do it.
10. Providers should use urine drug testing before starting opioids for chronic pain and consider urine drug testing at least annually for all patients on long-term opioid therapy to assess for prescribed medications as well as other controlled substances and illicit drugs.
Go for it. This is fine with me. I’ve been tested regularly for years.
11. Providers should avoid prescribing of opioid pain medication and benzodiazepines concurrently whenever possible.
That’s probably a medically good idea. I have no opinion, as I am not up on the conflict between the two.
12. Providers should offer or arrange evidence-based treatment (usually opioid agonist treatment in combination with behavioral therapies) for patients with opioid use disorder.
I have been working with a therapist for years, in order to keep my life as worth living as possible. I simply cannot afford the treatment any longer.
The initial cdc guidelines have exemption for palliative care yet in every city and state there are many people who qualify as palliative care patients whose medication have been severely cut or even terminated! I live in Alaska and have been on a stable but high dose of fentanyl and dilauded for 8 years because of multiple pain issues and my medication has been reduced by 90%! It not an issue in just one state yet no one with the power to fix this will listen! Among other issues this has caused, which others may not see as an issue is that I can no longer let my husband of forty years hug me!
Go to cause com/dear Mr president/Suzanne stewart
This petition ends in 4 days. Plz hurry….thx
Are you aware this coming week is all about helping the public become aware of “side effects” of these harsh rules to legitimate pain patients. I don’t know much about it but ask Sherry Sherman about hiw you can share your story…and here’s a link http://www.painresistance.net and also try it with /radio day. More people need to speak up, write letters to their Congress or what have you. I recently discovered CBD and have been supplementing my medication with CBD tincture, can’t say for sure if it helps but it’s good for so many things I’m taking that 2x day and was telling my pharmacist who I didn’t know sells a pharmaceutical grade that’s too expensive for me but I did buy 8 Oz creme for $50 that is the only creme I have ever used that helps calm it down instantly when I get flare up in my lower back that happens from time to time almost daily and it doesn’t take much.