“Teen’s twisted ankle leaves him with ‘suicide disease'”
(Independent — February 10, 2023)
“The family of a teen who often begged to die while suffering constant pain from a minor ankle injury now have fresh hope for his recovery. Alfie Scriven, 15, is living with a condition so severe it’s been dubbed ‘suicide disease’….
“The teen first sustained what was thought to be an innocent injury whilst cross country running….Despite rapid treatment his condition quickly deteriorated….
“Doctors diagnosed him with Complex Regional Pain Syndrome (CRPS) three years ago… “Alfie quickly lost the ability to walk and eat, and even the slightest touch causes him intense pain after the condition spread around his body….”
His parents are seeking help to take him to the US for a treatment called VECTTOR which is a form of electro-stimulation based upon acupuncture, physiology, cellular physiology and anatomy designed to stimulate the nerves to produce certain neuropeptides essential for optimal functioning of the body.
“Davidson County teen fights ‘suicide disease'”
(Fox 8 — November 28, 2022)
“Salem Collins was a typical teenage girl who enjoyed music and gymnastics until a rare disease too over….
“Doctors discovered Salem had Complex Regional Pain Syndrome, after pain spread throughout her body following an ankle injury. CRPS is considered the most painful disease known today and is labeled the ‘suicide disease’….
“The disease has no cure but the family has found hope in a clinic in Arkansas that’s helped nearly 85% of its patients land in remission.
“The family plans to move to the clinic for the next four months for treatment. Insurance doesn’t cover it, and the cost can be over $100,000. Their community is stepping up with a fundraiser over the weekend…. Salem will start treatment on December 12.
“Don’t Force Patients Off Opioids Abruptly, New Guidelines Say, Warning of Severe Risks”
(NPR– October 10, 2019)
“Abrupt changes to a patient’s opioid prescription could harm them….”
“It must be done slowly and carefully,” says Adm. Brett P. Giroir, MD, assistant secretary for health for HHS. “If opioids are going to be reduced in a chronic patient it really needs to be done in a patient-centered, compassionate, guided way.”
“Good News: Opioid Prescribing Fell. The Bad? Pain Patients Suffer, Doctors Say.”
(New York Times — March 6, 2018)
[G]uidelines are harming one group of vulnerable patients: those with severe chronic pain, who have been taking high doses of opioids for years without becoming addicted….[P]atients who could benefit from medications are being thrown into withdrawal and suffering renewed pain and a diminished quality of life, even to the point of suicide.”
Three-part series on the nation’s struggle to address its crippling opioid crisis and the unintended victims left in its wake.
“As doctors taper or end opioid prescriptions, many patients driven to despair, suicide.”
(Fox News — December 10, 2018)
Untreated pain, many health experts say, can also lead to hypertension, more serious pain conditions, and other problems. Health practitioners say this is a plight that could affect anyone– all it takes is a slip, a fall, or a botched surgery that could bring on intense and perhaps long-term pain.
“Doctors caught between struggling opioid patients and crackdown on prescriptions.”
(Fox News — December 11, 2018)
Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions.
“Health experts offer solutions for unintended consequences of opioid crackdown.”
(Fox News — December 12, 2018)
The government response to the [opioid] epidemic has many medical professionals, patients and their families welcoming the long overdue debate about the risks vs. benefits of opioid use. But it has also set off alarm bells for many of the millions of Americans with chronic pain who legally take opioids, under their doctor’s supervision, and are suffering a range of unintended consequences that have left them undertreated, ignored, and desperate for alternatives.
“Oregon task force backs controversial opioid plan”
(Bend Bulletin — December 5, 2018)
An Oregon proposal to expand alternative treatments for certain chronic pain conditions while limiting the use of opioids has moved forward with minimal changes, despite outcries from chronic pain patients and sharp criticism from pain experts across the country.
“The Criminalization of Pain”
(Not Dead Yet — October 4, 2018)
Many people who depend on opioids and similar medications to manage pain are now finding that their access to them has been limited and they are being subjected by doctors to drug testing and pill counting. They feel as if they are being treated like criminals, charged with the crime of having chronic pain….
As more and more people experience poor pain management, it is easy to see that in states where doctor assisted suicide is legal, there will be an increase in requests for lethal drugs. How ironic that it may become easier in some places for get a prescription to die than one to relieve pain.
More on Disability Perspective
“U.S. Chronic Pain Practitioners and Scientists Comment on Oregon Forced Taper Proposal”
(National Pain Report — July 31, 2018)
We are a group of concerned practitioners and scientists specializing in pain, addiction, and epidemiology, and experts in public health law and policy. We recently learned of efforts by the Oregon Medicaid Pain Task Force to deny overage of opioids beyond 90 days for most chronic pain conditions and, effectively, to mandate the taper of current patients receiving opioid therapy. We believe that such efforts risk doing substantially more harm than good.
More on Oregon
“Opinion: ‘Open Season’ on the Poor and Medicaid Population in Oregon”
(National Pain Report — July 23, 2018)
Oregon is set to eliminate all opiates from being prescribed for all chronic pain and Fibromyalgia patients on Medicaid by 2019….
“They” tend to ignore and/or discount studies that have found that have found that patients were found to be functioning quite well after 10 or more years on generally stable opioid dosages, with the vast majority or patints able to care for themselves, drive their cars, etc…..
When pain is not treated, bad things can happen.
“Chronic Pain Advocates in Oregon Protest New State Opioid Policy”
(National Pain Report — July 21, 2018)
The Oregon Health Evidence Review Commission (HERC) and its subcommittee Value-based Benefits Subcommittee (VbBS) will be submitting their proposed changes to Medicaid to discontinue long term opioids for chronic pain and fibromyalgia. The changes include forced taper for all chronic pain patients on opioids (within a year), no exceptions….While this policy is aimed at the Medicaid population, organizers believe that whatever policy is adopted will be adopted by every insurance company.
[Irony — Oregon was the first state to legalize doctor-prescribed suicide, permitting a doctor to prescribe a lethal overdose of drugs to certain individuals.]
More on Oregon
“Pain Doctors Face Greater Scrutiny Than Death Doctors”
(National Review — May 3, 2018)
At a time when assisted-suicide pushers fear-monger about unrelieved pain as a reason to legalize doctor-prescribed death, physicians are so afraid of the feds they leave some pain patients in the lurch, thereby unintentionally pushing them toward suicide — assisted and otherwise.
“America’s War on Pain Pills Is Killing Addicts and Leaving Patients in Agony”
(Reason — March 9, 2018)
Contrary to the impression left by most press coverage of the issue, opioid-related deaths do not usually involve drug-naive patients who accidentally get hooked while being treated for pain….[Stefan Kertesz, a University of Alabama internist who specializes in pain and addiction] says “Our focus on pill control” is driven partly by “a recognition that there was a failure to prescribe carefully” but also by “institutional and legal interests seizing on what looks like a simple answer to complex problem,” heedless of the human costs. “We’re engaged in a stampede that is trampling people to death,” he says “and those people need to be protected.”
“The Opioid Crisis the News Isn’t Talking About”
(Not Dead Yet — February 20, 2018)
What we are seeing is many disabled people who are suffering due to the lack of access to opioid medication previously available as part of comprehensive strategies and approaches to address chronic pain….For some disabled people, opioids are the only medication or treatment that can help their pain. Now, those who have chronic pain are treated with suspicion.
More on Disability Perspective
“Some People Still Need Opioids”
(Slate magazine — August 17, 2017)
The crackdown on pain medication prescribing is intended to help the addiction crisis — but it’s leaving chronic pain patients in untenable situations….
We are now experiencing the painful backlash to overzealous prescribing of opioid painkillers (that was itself a backlash to the under treatment of unremitting noncancer pain). Amid regulations, pharmacy restrictions, and intimations that doctors are the major culprits in this epidemic, doctors are increasingly sensing pressure to reduce doses, even among patients who are benefiting from the medication and using it responsibly.
“Power Over Pain: How to Get the Pain Control You Need”
“Dr. Eric Chevlen and attorney Wesley Smith have teamed up to write this fast moving and fascinating book about pain and its relief. From cancer pain to headaches, from fibromyalgia to sickle cell crisis, from shingles to multiple sclerosis, Power Over Pain covers it. For those with a life-threatening illness, the message is clear: no one needs to die in unrelieved suffering. For those with less threatening but equally painful conditions, there is also help. This is a book about the wonderful help available and how to go about getting it.”
– N. Gregory Hamilton, M.D.
President of Physicians for Compassionate Care
To obtain a copy of “Power over Pain,” contact the Patients Rights Council.
“Provide better access to palliative care”
(The Star — January 4, 2016)
Canada’s new health minister, Jane Philpott, acknowledges there is evidence that only 15 percent of Canadians have access to high quality palliative care when they need it.
More on Canada
“Aid-In-Dying Laws Only Accentuate Need for Palliative Care, Providers Say”
(KHN — December 1, 2015)
A recent report by the California HealthCare Foundation showed that residents in 22 of 58 California counties don’t have access to community-based palliative care, and those in 19 counties don’t have access to in-patient programs. Foundation researchers also found recently that specialists are in short supply and that there is no reliable way to pay for such care.
More on California
“An end to cancer pain?”
(University of Toronto — April 23, 2015)
A new study led by University of Toronto researcher Dr. David Lam has discovered the trigger behind the most severe forms of cancer pain. Released in the journal Pain this month, the study points to TMPRSS2 as the culprit: a gene that is also responsible for some of the most aggressive forms of androgen-fuelled cancers.
“Fears of addiction keep cancer patients from getting pain relief”
(Reuters — August 29, 2014
Some populations are at particularly high risk for inadequate pain control. For example, research has shown that patients in minority care settings are three times more likely to receive undertreatment than those in non-minority settings.
“I don’t feel your pain”
(Boston Globe — June 15, 2014)
Men and women appear to suffer pain differently. So do blacks and whites. Modern medicine won’t even talk about it….The evidence for undertreatment of pain in minority patients is even more striking. Black pain patients are less likely than white patients to receive pain medication; when they do receive it, they receive less.
“A Pain-Drug Champion Has Second Thoughts”
(Wall Street Journal — December 14, 2012)
It has been his life’s work. Now Russell Portenoy appears to be having second thoughts….Now, Dr. Portenoy and other pain doctors who promoted the drugs say they erred by overstating the drugs’ benefits and glossing over risks….Speaking to the Journal in September, Dr. Portenoy tempered that statement with cautions about overturning what he sees as the positive change he achieved. He cited his 82-year-old mother, who has taken hydrocodone to control arthritis for 15 years. “If you insist on regulation, then you’re consigning my mother and many millions of people like my mother to live in chronic pain,” he said.