How Do I Advocate for Chronic Pain?

How Do I Advocate for Chronic Pain?

By Ed Coghlan

People individually and collectively are beginning to advocate to the federal government about the need for the government (and its health care agencies) to expand its focus from a crackdown on opioid use to a broader embrace of addressing the myriad of issues facing the chronic pain community.

The National Pain Report receives comments, emails and phone calls from people wondering how they can lend their voice.

This week, we are seeing that people are taking action into their own hands.

We heard from an old friend, a 68-year old California woman who is an Army vet who lost her leg and has been fighting the VA for her right to use marijuana to address her chronic pain. Judith Bruno’s fight has included correspondence with U.S. Senator Dianne Feinstein.

My Fight With the VA

We ran a story on a retired Michigan firefighter/paramedic whose pain medication has been reduced to a point where he thinks it’s actually hurting him. So Mike Young reached out to U.S. Senator Debbie Stabenow and his own firefighters union for help.

One Fireman’s Fight

Those are two examples of how to advocate.

Now comes another, from a Tennessee woman who is the mother of a son who has suffered from intractable chronic pain. If you read the National Pain Report, you know Terri Lewis PhD. She is a public health expert who has focused her attention on the chronic pain issue where she believes the health care “system” has failed the patient.

She and a group of Tennessee residents, all of whom are dealing with chronic pain care individually and personally, or indirectly as care partners, met with a staffer in Senator Lamar Alexander’s Nashville office. Among the illnesses experienced on a daily basis by the persons in attendance were fungal meningitis, arachnoiditis, reflex sympathetic dystrophy, fibromyalgia, CME (formerly known as chronic fatigue), and Ehlers-Danlos Syndrome.  Each of the individuals present gave voice to their personal story, its’ impact on their loss of careers and personal circumstances, and the impact on their health care access.

Each were active members of the social media sites Tennessee Pain Care for All and the Tennessee Fibromyalgia and Chronic Pain Network.

Senator Alexander currently Chairs the Health, Education, Labor, and Pensions Committee of the Senate, where all health legislation is vetted.  On the table for discussion was the impact of the delay associated with developing a unifying National Pain Strategy, the impact of the CDC guidelines on state regulations and physician access, the catastrophic consequences of Tennessee’s Chronic Pain law on patients with complex care needs, and the need for persons who are affected (consumers) to be present at the table and during any and all vetting processes.

Lewis and the Tennessee delegation asked for Senator Alexander to actively lead and to consult regularly with his Tennessee constituents.

She promises to keep us updated and we’ll pass it on when she does.

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Authored by: Ed Coghlan

There are 13 comments for this article
  1. Deb at 3:45 am

    I realize that there are a lot of chronic pain people younger than 50, but I was hoping if enough of us would contact AARP maybe they would see the other side of the story. You can contact them at aarpmagazine@aarp.org. They have been running on sided articles about the perceived opiate”epidemic” Please help, it couldn’t hurt.

  2. Judy Jaeger at 7:33 pm

    I 100% agree with Pharmacist Steve that we need to get off our butts & VOTE OUT THE INCUMBENTS…..our whole political process is not about “we the people”….it’s about the lobbyists & the big donors…….it’s time “WE THE PEOPLE” say enough is enough…..it’s time we demand term limits, so we’re not eternally stuck with a “do nothing” Congress. It’s time Congress represents “WE THE PEOPLE”…..It’s time to get involved in Local, State, and Federal elections. Don’t ever think YOUR ONE VOTE doesn’t matter …..it does. About a year ago there was a local election asking voters to agree to about 8 different road improvements where I live……I agreed with about 1/2 of them, but the other have were just plain unnecessary (imho)……so I voted NO………and guess what, it did NOT pass….by ONE VOTE……I like to think that one vote was mine 🙂
    VOTE….VOTE…VOTE…VOTE…..IT MATTERS 🙂

  3. Dave at 11:47 am

    MArk- I support you in your efforts- if i can be of assistance-let me know.

  4. mark nawrot at 9:52 pm

    I know what I’m going to do to stand up for my rights as a chronic pain patient. If my Doctor refuses to reinstate the pain regimen I was on for 4 years, and stopped as of Jan of this year, I am going to file compaints at every level, the Doctor, the Clinic, City , County, and State levels, and if that doesn’t work, my next step is in contacting a lawyer, and start lawsuit proceddings. The CDC Guidelines are just that, guidelines, not rules written in stone.

  5. criminally inpain at 11:14 pm

    I want to start by thanking Steve for his tireless work in spreading awareness & educating ALL on the TRUE & HONEST facts about the nightmarish world of chronic pain! Also many thanks to Ed & all that contribute to National pain report by sharing their stories & promoting awareness!
    I also encourage all to get the free amazon app. that allows a % of all your purchases to be given to a charity of your choice & choose U.S. pain foundation as their choice as they work hard on our behalf!
    I have worked w/ cpp’s for over 20 years w/ a back round in psychology & addiction; but my greatest knowledge & understanding comes from the fact that I have suffered CP for over 40yrs. not to mention losing my mom to CP neglect. I have been working nonstop as an advocate for about 7yrs. to help in any way I can to spread awareness; but like many others, it is hard to find out how, what, where, etc..
    I have written 100’s of letters to EVERYONE, made & signed petitions, public speaking, tried to start advocacy groups, etc.. but I get so discouraged as it just seems to be getting worse!
    I have recently started sending out pleas to social & alt. news media as I truly believe that could be the biggest help for us to get our voices heard & spread awareness to our plight.
    However, they will NEVER listen to just a handful of people & while I read story after heartbreaking story, I cannot understand where are all my fellow CPP’s to help plead OUR case?
    Believe me, I understand the fear of speaking out; but if we don’t & in a huge, united way; we will continue to SUFFER OF SILENCE! (#SOS)
    I live in central Fl. on the east coast & would love to start an advocacy group as we cannot depend on just a few fighting for ALL! So PLEASE join in the fight!!! VOTE in ALL elections & BOMBARD alt. News media( the young turks, vice, RT, secular talk, david pakman, etc..) w/ our pleas until they can no longer ignore us!! You can find me at criminally inpain on facebook!

  6. Salome Cerisier at 12:34 pm

    Pharmacist Steve, this was very helpful. Now I get how “vote the bums out!” actually works.

  7. mary ann kroger at 9:45 am

    I suffer from severe neuropathy and rheumatoid arthritis I developed this from my doctor not finding my diabetes early enough I am bedridden and suffer every minute in pain. My doctor only gives me minimum narcotic pain relief sometimes I don’t want to go on and I have no quality of life. Oxycodone is the only thing that dull the pain. can you help me and to accept this and give me the medicine that I need to have an ordinary life. Thank you

  8. Williams at 8:09 am

    In most cases, Chronic pain severities are neglected. It is good if govt can initiate certain measures.

  9. Pharmacist Steve at 3:54 pm

    The overwhelming majority of those in Congress only cares about votes and contribution to their reelection fund and probably more the latter than the former. It is reported that typically 99% of those who run for reelection.. will get reelected… If I was them.. I would consider that as a constituent mandate to keep doing what I have been doing.. All the while Congress – as a whole – has a high SINGLE DIGIT APPROVAL RATING.. The theory behind those two contradicting numbers is that individual constituents believe that their members of Congress are “good people” .. it is the rest of Congress that you can’t trust.
    I can’t count the number of letters from members of Congress that chronic pain pts have shared … and all are vague.. some don’t even address the letter that the constituent had sent them. You send a letter about chronic pain and you will typically get a response about the opiate epidemic and overdoses.
    Right now 43% of the members of Congress are attorneys.. 170/house – 60/senate.. Nov 8th 80% of Congress is up for re-election… 435/house… 34/senate. Congress functions on a seniority basis… you toss out a few and their replacement come in at the bottom of the pecking order.. and if they want to have any impact on what happens in Congress they have to agree to be “incorporated” into “the whole”… if they don’t their committee assignments are on committees that have little influence on what Congress does… their chances of getting a bill heard .. are typically between slim and none. Lobbyists spend NINE MILLION DOLLARS every day – 7 days a week… influences members of Congress. The more members of Congress that are replaced in a single election… the more disruptive it will be to their seniority system… all the money that lobbyists have expended on influencing member of Congress – goes POOF and they have to start all over again. Human Psychology suggests that if a very large majority of members of Congress don’t get re-elected… the SHOCK to the Congressional system that the new members of Congress may be more likely to listen to their constituents and their concerns.
    The last Presidential election there was 126 million votes.. with 5 million between the winner and the loser… it is also estimated that 106 million of eligible voters .. DID NOT VOTE. You can register to vote by mail and you can vote by mail… the only valid reasons that you can’t vote is that you cant make it to your mailbox and/or you can’t afford TWO STAMPS. I lot of chronic painers are “afraid” to stand up and stand out… you vote the incumbents out of office.. they will never know who did it… all they will know is that there is a very large “silent majority” that is VERY PISSED ! If you want CHANGE… you need to be part of CHANGE… you DO NOTHING…. you GET NOTHING… If Congress doesn’t get the message that they are doing things harming chronic pain pts… they will have another two years to keep reducing the opiates that chronic painers can have prescribed.

  10. Dave at 3:11 pm

    Ed- I might be the first one to respond to our article- not surprising.
    Theres no magic formula for advocating to improve pain care. One can write or call representatives, health departments, medical societies,etc. One can start or sign onto a petition. One can join a pain advocacy organization and or make a donation to one. One can see how other related organizations like breast cancer organiations or human rights organizations advocate
    The most important thing is to make a sincer and hopefully lasting committment to promote some ideals in pain care. We know all too many dont seem to be making such a committment. Big brother, in my estimation wont fix pain care and pain care will not be fixed until enough Americans advocate for positive change. In a book calleed Better, But Not Well. The author indicated that from 1950- 2000 changes in mental health care were not due to improvements in treatment per se- but due to advocates. Professionals and medical organizations- mostly focused on money and not results- heres an article by JP Ioannidis- one of the most prolific critics of medical research-http://jama.jamanetwork.com/article.aspx?articleid=2541515, Note how he talks of the very small return from big ideas in medicine- and the great cost. SO big brother is great at spending money on hyped up projects that return little to the public. And so the public must refrom government and the heatlh care industry. And each persons efforts make a difference. I hope for the sake of yourselves and society you will make a committment to improving pain care in America.

  11. Mary Dunigan at 2:04 pm

    Thank you Ed! I too want to share my story! Where should/can I send it where it will have the most impact? Could you e-mail me some suggestions/links please! God Bless you and the work you do to advocate for chronic pain warriors!!!! I am so grateful! Sincerely, M.Dunigan

  12. Ashley Reber at 9:29 am

    All groups claiming to represent chronic pain patients need to come together on Capitol Hill and lobby there congressman to help us more versus doing what they are doing now which is the opposite. Even if patients can’t attend a lobbying day they should be able to take part via http://www.gotomeeting.com

  13. Tim Mason at 4:18 am

    I am a Georgian but my pain management physician is in Tennessee. The state line is just 1 mile from my home. I too would reach out to local government and Lamar. People often reach out to him for disability when they don’t meet the requirement. i.e. never worked much, and did not have there health care documented.
    The government was able to help but they got very little. One kid got 300 dollars a month and the other got 700 dollars a month.
    So those with a solid work history, good medical documentation and proof of a pain causing organic disease should do well to contact them.