Most of us knew this had been coming; however, it doesn’t make it any easier to swallow. This is probably one of the most important tasks you will be asked to do as a chronic pain patient or for pain patients. We know there have been literally hundreds of ‘Calls to Action’ over the years, but this is it. Medicare is considering limiting coverage for opioid dosages over 90 MME and putting a 3, 5, or 7-day cap on new prescriptions for acute pain. There is a proposed 7-day supply to be provided while you seek an exemption to an over 90 MME prescription. Medicare is also proposing adding extra flags for Gabapentin, Lyrica and Benzos in combination with opioids. Final approval is given to your insurance carrier, not your doctor. We must ask for a legacy exemption for those already stabilized above 90 MME.
We have until Monday to badger as many people as we can to comment on the federal docket. Pain patients are now joining their State Pain Advocacy Groups, created several months ago for direct action and advocacy. These groups are a little different than your typical advocacy groups, as they discourage personal stories, memes, medical talk and surgical photos. We are focusing on the collective and not individual experiences, though they are the most important part of this. We will comment on federal dockets, attend legislative hearings, talk with reporters/policy makers and even protest at the nationwide ‘Don’t Punish Pain’ rallies on April 7, 2018.
We must bombard Capitol Hill with calls, faxes, Tweets and emails and meet with them if we can. Not only do we need to let them know how medically fragile and chronically ill we are, and that we depend on these medications for our very existence, but we have to PROVE to them we are not functioning addicts. They must see us speaking as one, with clear speech and clear eyes. We must be rational, calm, cool and collected – not an easy thing to be when you are fighting for your life along with daily fatigue, illness and disability.
Please comment on the federal docket that closes on Monday, March 5th, 2018. Use these steps as a guide, but please do not copy them verbatim, as Medicare will disregard duplicate comments. Join your state pain advocacy group – it’s your state name and ‘Pain Advocacy Group’ on Facebook – the website is under construction. We will never ask for money from chronically ill pain patients, as most don’t have any to spare. Ask how you can help in your state group, as there’s so much to be done. We are just at the beginning of what we fear will be a very long battle. It’s way past time for us to be advocating together – if we wait until our pain relief has been completely taken away, it could be nearly impossible to fight. Please know that we are all just one appointment away from losing access to pain medication – whether it’s your doctor unwilling or unable to prescribe, your insurance denying coverage or your pharmacist being out of supply or refusing to fill. It’s happening and it’s real. Come join us – we need you now!
Here are some tips on how to comment on the federal regulations:
- https://www.regulations.gov/document?D=CMS-2017-0163-0007
- Click Blue Box ‘COMMENT NOW’
- You may want to write your comment in a document and then copy/paste in case the site glitches or it’s too long and you need to attach it as a doc – ‘Choose files’ – if you need to upload it.
- Name/City/Sate/Zip/Country/email or submitting on behalf of 3rd party – we can submit your comment anon for you/CONTINUE.
- I am a Medicare/Medicaid patient or future patient – or have a private insurer which often follows Medicare policies.
- I am a pain patient diagnosed with (diagnosis) for (how many?) years. I tried( ______ ) – list all the non-opioids (n-saids, Tricyclic anti-depressants, SSRIs, SNRIs, Steroids, anti-epileptics, etc.) you tried BEFORE opioids and include all the different therapies/treatment/surgeries (i.e., PT, OT, Aqua T, Chiro, Osteo, injections, devices, procedures, CBT/mindfulness, acupuncture, acupressure, massage, biofeedback, Medical Cannabis, creams, TENs, MENS, natural remedies, etc.) but they all failed to heal/help or adequately control my pain, so I require opioid pain medications. Opioids help me by managing my pain and (_____) – talk about improved function that opioids help with – working, chores, childcare, travel, entertainment, etc.
- If Medicare/Medicaid/private insurer refuses to pay and if I do not have access to my medication over 90 MME/any dosage I will (____) – explain how your life will change – lose your job, income, home, car, entertainment, not be able to care for family/house, etc.
- Explain you have been a model, compliant patient, and if you have a pain contract – include how often you have UAs, pill counts, secure you medications and if you use one pharmacy, avoid alcohol, cannabis, etc. Mention it is unlikely your condition will improve and the effects of time and aging will make things worse. Opioids and pain management were a last resort option.
- Proposed policies are not supported by proven studies, everyone genetically metabolizes medications differently, the CDC guidelines were written outside the rules by non-pain management physicians, some who may have professionally or personally profited from the outcome.
- These policies could: create more chronic pain by not treating acute pain, scare more doctors out of pain treatment, create more demand for urgent care, increase the rate of expensive and possibly dangerous procedures, more disability claims/unemployment, and need for social services.
- Force involuntary tapers, withdrawals, risk of suicide, high blood pressure, stroke risk, and cardiac issues.
- I am disabled, NOT over 65 and pain medication helps me PREVENT falls by stabilizing my pain.
- My medical care and decision making should be left to my doctor, who understands my complicated and complex case, not CMS/Medicare.
- A 7-day supply while seeking an exemption to 90MME would cause extreme stress, paperwork burden for my doctor, extra copays at pharmacy/doctor, plus another trip to doctor/pharmacy when you are in pain.
- A 7-day limit on prescriptions for new patients would be a physical and financial hardship – doesn’t take into account injury, size, metabolizing, genetics or other factors.
- I take _____ (Benzos, Gabapentin, Lyrica) safely – I do not mix them with alcohol, other substances and use as directed. Explain what might happen if these were to be discontinued.
- Prescribing has been going down for over 5 years while ODs to illicit heroin/Fentanyl coming in from Mexico/China is skyrocketing – deaths will continue to rise, as this crisis is NOT an over prescribing issue.
Valorie Hawk lives in Washington and has experience working with Congress. She can be reached by Email: C-50painadvocacygroups@outlook.com and you can follow her on Twitter @C50painadvocacy
Filed under: General Problems
Well,today I have been on the phone 5Xeach to the 2 Florida senators and 3Xto the White House.And will keep on until they puke at the sound of my voice.PESTER YOUR STATE AND FEDERAL GOVT.every damned day!!!Dont take this BS! non stop mouth is enough to drive em batshit.Let THEM feel the stress we are enduring!!!!LIVING LIFE FROM BED TO CHAIR,CHAIR,CHAIR….MIGHT AS WELL BE ON THE PHONE AND MAKE THEIR LIVES AS ROTTEN AS OURS!!!
Chronic pain patients should not be penalized for opiad use when under the care of their physician. They are the best ones to determine what is best for them, not some bureaucrat from Medicare!
,
Exceptions for “legacy patients”. What about the patients who have been involuntarily reduced to 90 mme or below that were doing well at doses above that, before being dropped down. We need protection too.
Here is my comments on the Medicare BS
Since both those people with additive personality disorder (APD) and those with intractable chronic pain (ICP) are a protected class under the American with Disability Act (ADA) and the Civil Rights Act (CRA)… the exclusion of those with ADP from any daily limits and imposing daily limits on those with ICP. Would strongly suggest that these proposed limitations are in violation of ADA and CRA.
Likewise drawing a distinction between pain associated with cancer deserves some preferential treatment than pain associated with any other physical disorder once again suggests a violation of the protected class under the ADA and CRA for those diagnosed with ICP.
Placing daily MME limits without regards to the pt’s CYP-450 opiate metabolism is further discrimination for a subset of the protected class.
There is no known clinical trials that these conversion tables have degree of certainty making a conversion from one opiate to another.
Here are warning/advisories from one such set of conversion tables: http://www.globalrph.com/narcotic.cgi
* Published equianalgesic ratios are considered crude estimates at best and therefore it is imperative that careful consideration is given to individualizing the dose of the selected opioid. Dosage titration of the new opioid should be completed slowly and with frequent monitoring.
*Factors that must be addressed during the conversion process include: Age of the patient or presence of coexisting conditions. Use additional caution with elderly patients (65 years and older), and in patients with liver, renal, or pulmonary disease.
* Conversion ratios in many equianalgesic dosing tables do not apply to repeated doses of opioids.
* The amount of residual drug in the patient’s system must be accounted for. Example: fentanyl will continue to be released from the skin 12 to 36 hours after removal of the patch. Residual effects from discontinued long-acting formulations should also be assessed before converting a patient to a new opioid.
* The use of high but ineffective doses of a previous opioid may result in overestimation of the converted opioid.
* Ideally, methadone conversions (especially patients who were previously receiving high doses of an opioid) should only be attempted in cooperation with a pain specialist or a specialist in palliative medicine.
* Meperidine should be used for acute dosing only and not used for chronic pain management (meperidine has a short half-life and a toxic metabolite: normeperidine). Its use should also be avoided in patients with renal insufficiency, CHF, hepatic insufficiency, and the elderly because of the potential for toxicity due to accumulation of the metabolite normeperidine. Seizures, confusion, tremors, or mood alterations may be seen. In patients with normal renal function, total daily doses should not exceed 600mg/24hrs.
The practice of medicine is part art … part science and all therapy is based on a individual’s response to a particular therapy and to try and establish “cook book therapies” deviates from and violates accepted standard of care and best practice.