By Valorie Hawk.

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

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