,
46 tweets,
24 min read
Read on Twitter
(Thread) This is a good piece by @speakingabtpain on the plight of chronic pain patients, people whose pain can't be cured & who've had their pain meds arbitrarily tapered down or taken away: "The clampdown on opioid prescriptions is hurting pain patients" latimes.com/opinion/op-ed/…
2) This is the @hrw report, written by @lauraphylmills, which looks at untreated chronic pain in the US as a human rights issue: “‘Not Allowed to Be Compassionate’ - Chronic Pain, the Overdose Crisis, and Unintended Harms in the US” hrw.org/report/2018/12…
3) The report has been out for a month. I first saw it mentioned by @terrence_mccoy, who wrote a good article on the plight of chronic pain patients (CPPs) last year: “‘Unintended consequences’ - Inside the fallout of America’s crackdown on opioids” washingtonpost.com/graphics/2018/…
4) This CDC data on opioid overdose deaths vs opioid prescription rates, put together by @StefanKertesz, is illuminating:
5) Here's a more personal account from author Douglas MacKinnon, whose niece suffers from debilitating chronic pain and has had her life been made more miserable by the crackdown: "Suffering people need opioids: Don't throw out the baby with the bathwater" nydailynews.com/opinion/ny-ope…
6) The American Medical Association has finally begun to take notice: "AMA: Patients Being Harmed by Rx Opioid Crackdown" painnewsnetwork.org/stories/2018/1…
7) On a lighter note, I found this analysis and advice for CPPs from the stately British Medical Journal (@bmj_latest) refreshing and compelling (heh): "Prescriber’s narcophobia syndrome: physicians’ disease and patients’ misfortune" bmj.com/content/339/bm…
Finally, I posted these links and a few others on MetaFilter (hi
@indik & @maiasz) metafilter.com/178886/Untreat…
@indik & @maiasz) metafilter.com/178886/Untreat…
When You Live in a Constant State of Pain: "they ask me to rate my pain on a scale of 1 to 10 and describe it. It is almost impossible to remember the last time I had a pain-free day... This makes it impossible to rate my pain, if I have no 1 on my scale." themighty.com/2018/11/descri…
If anyone can't access the satirical British Medical Journal piece linked above on BMJ's site, here it is on Medium. I think CPPs will appreciate it. medium.com/@tamzett/presc…
The HHS Pain Management Best Practices Task Force is accepting public comments on opioid policy until April 1st. CPPs can share their thoughts there. Anne Fuqua (@PainPtFightBack) has the link:
Crosslinking related thread, since women's pain is more likely to be dismissed and left untreated than men's, especially in the current environment:
New article: 'Chronic pain is the other side of the opioid epidemic.' “Try living a day in a pain patient’s shoes. You wake up, you’re in pain; you go through the day, you deal with pain. You go to bed, you fight the pain to get some sleep...” unionleader.com/news/stigma/ch…
“Like being put on an ice floe and shoved away”: A qualitative study of the impacts of opioid-related policy changes on people who take opioids.
Great piece by @maiasz: "thousands of pain medication recipients have had their doses reduced or eliminated... this attempt to save people from addiction is leaving many patients in perpetual pain — and thus inadvertently ruining, or even ending, lives." nytimes.com/2019/02/09/opi…
Gizmodo article by @EdCara4 on the Canadian study on how the crackdown on opioids has negatively impacted chronic pain patients and others in Canada (it's the piece by @Tara_Gomes and others linked upthread.) gizmodo.com/chronic-pain-p…
Here's a great piece on @Filtermag_org (which is a great resource) by @elizabethbrico: "How Stigma Against Addiction Devastates Pain Patients." It's nicely succinct; for someone new to this issue, I'd say start here and then read @maiasz's piece upthread. filtermag.org/2019/02/11/how…
Since kratom is in the news, this piece by Christopher Moraff @cmoraff from last November is an excellent overview of how kratom is used as an alternative painkiller by chronic pain sufferers, and the effect a ban on it would have. filtermag.org/2018/11/30/how…
Here's another great piece by Maia Szalavitz @maiasz (she wrote the excellent NYTimes piece 4 tweets up this thread,) this one in the Columbia Journalism Review from last August: “What the media gets wrong about opioids.” Required reading for journalists.
Some good reporting in @LasVegasNOW's series "#OurPain: The southern Nevada opioid crisis" lasvegasnow.com/opioids
The latest piece by George Knapp @g_knapp & M. Adams: "Doctors to tell lawmakers of patients left suffering because of opioid crackdown" ..
The latest piece by George Knapp @g_knapp & M. Adams: "Doctors to tell lawmakers of patients left suffering because of opioid crackdown" ..
"Opioid prescriptions are now at their lowest point in 15 years, but overdose deaths are at their highest.. Cutting medications for legitimate pain patients has had no effect on addicts' overdosing.. millions of people.. are now expected to live the rest of their lives in pain."
"My Pain Journey" by @PainNewsNetwork columnist Rochelle Odell is good, but also depressing & infuriating. Her chronic pain had been under control for 16 stable years, but then her meds were taken away, leaving her in constant pain. This shouldn't happen. rsds.org/pain-journey-p…
The term "opiophobia" may sound hyperbolic, but it's likely what killed this patient. She probably wouldn't be dead if they had just given her the pain meds recommended for her condition. There's also more info on the plight of CPPs in this thread: ...
... More about this case & others in this interview by George Knapp @g_knapp: "Doctor Maurice Gregory talks... about his concerns regarding the anti-opioid movement and how it's impacted the quality of life for patients who need long-term pain management." lasvegasnow.com/news/local-new…
Carla Howard @WHoward1373 died 2 days ago of a heart attack at age 56, her 4th since her pain meds were forcibly tapered to meet the new CDC guidelines, causing a huge increase in her chronic pain. Terri Lewis @tal7291 tells her story in this thread ...
This thread by @facesofpainproj gives more details on Carla Howard's death and how it was caused by the increase in her intractable pain following the medically unnecessary forced tapering of her pain meds. This tragedy was completely avoidable. RIP Carla.
Here's @hrw's response (by @lauraphylmills, @speakingabtpain & @lindsay_baran) to @60Minutes's recent piece on the opioid crisis, which failed to report on the reality of chronic pain sufferers: "60 Minutes Fails to Represent Pain Patient Perspective" hrw.org/news/2019/03/0…
This @nytimes piece by @JanHoffmanNYT & @abbygoodnough reports on what @60Minutes didn't: "More than 300 medical experts, including three former White House drug czars, contend that the guidelines are harming one group of vulnerable patients: those with severe chronic pain, ..."
"... who may have been taking high doses of opioids for years without becoming addicted. They say the guidelines are being used as cover by insurers to deny reimbursement and by doctors to turn patients away. As a result, they say, patients who could benefit from the ..."
"... medications are being thrown into withdrawal and suffering renewed pain and a diminished quality of life, even to the point of suicide." nytimes.com/2019/03/06/hea…
31/ Here's an excellent article by Art Levine @ArtL7 on Oregon's push to forcibly taper Medicaid patients with chronic pain off their opioid meds completely: "'Gambling with Lives': Oregon Medicaid cutting off opioids to chronic pain patients" FFS! ... tarbell.org/2019/03/gambli…
32/ From @ArtL7's piece above: "In Oregon, making the case for keeping opioids away from patients like Sierra when they don’t have cancer, is the alternative medicine community. Some of them don’t seem to be much more immune from conflicts of interest than drug company shills..."
33/ "... critics say. In fact, the ad-hoc Chronic Pain Task Force, an advisory subcommittee that’s helping drive Oregon’s move to shut off opioids for pain patients, is dominated by holistic practitioners with a financial stake in ending opioids by hyping a smorgasbord of ..."
34/ "... alternative therapies that have weak or limited evidence that they work for any chronic pain patients at all — let alone with that minority of long-term chronic patients who use opioids." Here's another link to the piece:
35/ Thankfully the vote was delayed and HERC is gathering more evidence; if approved it'd have forced 60,000-80,000 pain patients to live in constant agony. But the delay was due to a conflict of interest; once that's sorted it might be back to square one. painnewsnetwork.org/stories/2019/3…
36/ From the piece above: “'HERC’s proposal is, in essence, a large-scale experiment on medically, psychologically and economically vulnerable Oregonians, at a moment when Oregon has already seen a significant reduction in opioid prescribing and prescription opioid-related ..."
37/ "... deaths,' Mackey wrote. 'The evidence supports that this proposal represents an alarming step backward in the delivery of patient-centered pain care for the state of Oregon.'” I'm very relieved I didn't move to Oregon back when I almost did. painnewsnetwork.org/stories/2019/3…
38/ Here are more examples of chronic pain patients pushed to and over the edge by having their pain meds taken away, leaving them with intractable pain. It's utter madness. Via @PainPtFightBack.
39/ Here's Human Rights Watch's @hrw response to Oregon's non-evidence-based proposal to forcibly taper Medicaid patients (60-80,000 people) off of their opioid pain meds completely: "Denying Patients Pain Medication Won’t Solve Opioid Crisis"
40/ Here's another problem chronic pain sufferers are facing: being pressured into surgeries or implants which were unnecessary before their pain meds were cut off. This thread by Ajay Manhapra @AjayManhapraand & its comments explain more:
41/ These surgeries/devices sometimes fail, and when that happens the CPPs are worse off than before and can't get new meds. And these the failures can be life-threatening. The opioid crackdown is unnecessarily putting these patients' lives at risk.
42/ Benthere And Back @benthar6 shares this thread as a cautionary tale. After 4 years of using opioids they took him off them and put him on anti-inflammatories and steroids. In less than a year those meds ate holes in his stomach, almost killing him...
43/ Senators Kirsten Gillibrand @gillibrandny & Cory Gardner @SenCoryGardner have proposed legislation that'd make the crackdown on RX's even worse. After much push back by acute & chronic pain patients, they might be listening now.
44/ The Senators seem unaware that acute pain patients are also being denied proper pain management due to the climate of fear surrounding opioids. Leah McElrath @leahmcelrath gives a clear & succinct answer to the proposed legislation: "NOOOOOOOOOOOOOOO."
45/ This tweet by Andy @AndyEyeballs is a perfect example of the horrible situation chronic pain sufferers find themselves in as a result of the RX crackdown. No one should ever be forced to chose between pain or suicide. (via @UntoNuggan):
46/ On a more uplifting note, this refreshing thread by Ana Mardoll @AnaMardoll gives an example of how doctors should respond to patients in pain (via @MortuaryReport):
