How the Chronic Pain Community Can Fight Back

How the Chronic Pain Community Can Fight Back

By Terri Lewis, PhD.

2017 has been a frustrating year for the chronic pain community, especially as the government crackdown on opioid prescribing has taken hold. The lack of alternatives to reducing opioid prescribing has many patients and their families struggling.  Terri Lewis, PhD, has issued a call to arms for chronic pain community to fight back.  In Step 1, which we published in November, she outlined some suggestions for how to get involved. Her series continues.

Step 2 – Understanding the System in Which Your Healthcare is Organized

Health care is organized within a system of states. In order to draw down federal dollars earmarked for public health, each state files a plan with the federal government that is essentially a working plan.  This plan is developed for the purpose of linking the commitment of each state to the plan for delivery of health services.

Terri Lewis, PhD

These plans are updated periodically. They reflect federal legislative objectives and a commitment proposed by the state as to how the state will meet the obligations associated with the drawdown of federal program funding and legislative matching dollars.

So, let’s walk through the process of becoming familiar with your state’s plan for public health. Begin with the organization of your state public health program.  Examine these links to state resources closely. Copy and paste them into your files tabs on your Facebook, Twitter groups, and blogs to make sure that your collaborators have access to the information found on these weblinks:

  • Review these state health organizations & links
Association of State and Territorial Health Officials http://www.astho.org/

 

American Public Health Association

 

https://www.apha.org/policies-and-advocacy/public-health-policy-statements/policy-database/2014/07/21/09/50/the-state-health-department
State health system performance scorecards http://www.commonwealthfund.org/interactives/2017/mar/state-scorecard/
Federation of State Medical Boards

 

(http://fsmb.org/state-medical-boards/contacts)

 

The state scorecards track 40 public health indicators. Review these indicators and see how your state shapes up.  My state scorecard is located at this link: http://datacenter.commonwealthfund.org/scorecard/state/44/tennessee/?_ga=2.262933647.2027253234.1513949097-623044024.1513949097

As you can see, we are ranked 40 out of 50 states in the overall indicators of well-being. As a nonexpanded Medicaid state, we acutely feel the influence of lack of access to care for more than 260,000 Tennesseans.

  • Review your state health department organizational chart and locate the telephone and email addresses by key personnel and program areas –
  • Now, using my state, Tennessee as an example, take a cruise through your state’s weblinks and if you want to, use my links as an example:
Tennessee State plan for public health

 

 

(https://www.tn.gov/health/health-program-areas/health-planning/state-health-plan.html)
2006 State Departmental Plan https://www.tn.gov/content/dam/tn/health/documents/DepartmentalPlan06.pdf
State plan for public health 2016 update (https://www.tn.gov/content/dam/tn/health/documents/2016_Update_to_the_State_Health_Plan.pdf)
State Boards of Medicine

 

(https://www.tn.gov/health/search-results.html?q=State+board+of+medicine)
State Boards of Pharmacy

 

(https://www.tn.gov/health/search-results.html?q=board+of+pharmacy)
State Department of Mental Health and Substance Abuse Services (https://www.tn.gov/behavioral-health.html)

 

 

  • Use the notes and information you have collected to begin to prepare to meet with your elected officials and their state office staff. Review this toolkit and begin to organize your thoughts against a future meeting. Develop a plan for your meeting that incorporates references to the information you have found at these links.
Meeting with your congressional delegation at home: 2017 Toolkit

 

http://www.astho.org/uploadedFiles/95_Home_Page/Featured_Story/2017%20ASTHO%20Advocacy%20Toolkit-Final-Web.pdf

Keep in mind that your health department meets regularly to review state pain laws, pharmacy and medical board actions, licensure and disciplinary actions. These meetings are subject to sunshine laws and in many cases are livestreamed online. I encourage you to attend these meetings as an observer, to share these links, and to review the material within your state and study groups on social media. Put them into online files, or make 3 ring binders. Use whatever method works best for you.

This is our government and our democracy.  It only works if we do.  I’ll be looking for evidence that you’re ready for Step 3 – The Legislative framework.  Step 4 will focus on the building of working alliances with likeminded citizens and groups.  Let me know what you’re learning by checking into twitter and sending me a message at @tal7291!

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Authored by: Terri A Lewis, PhD.

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Kevin

Jill, I don’t know if there’s Time for One step a Week!

Jill

Thank you for all this info. It seems overwhelming when fatigue is so strong, but perhaps a goal of one step a week toward making your voice heard would be doable. All of us should do the best we can. Perhaps a proxy or family member would be the answer.

Margie, Voltaren is an NSAID similar to Motrin or Aleve that can help with mild to moderate pain so curious how it helps if your pain is at a level requiring opioids and gabapentin
tin. Does it help with swelling? Took it myself for years 20 years ago. Another thought but wondering if you know gabapentin and opioids should not be taken at same time
but rather two hours apart as the former reduces effectiveness of opioids by up to 30%. At least last I knew!! That said, hope you are doing well with whatever you choose !

Kel b

Thank you Dr Lewis! Info is appreciated. The media will come to your home too. Get them over and blast these facts nationwide. I’ve had state representatives call Me after writing to them. Some of this stuff does work in getting attention. I think it just needs to be done by all to make a huge impression to others.

Me Too

Agree with moira and Donna. Our being treated like animals should not stop short of allowing a compassionate end to suffering. Might even be a money maker and stimulate the economy.

Margie Shubin

I was just denied an ablation on my lower back. They said it wouldn’t work. It worked 2 1/2 Year’s ago why wouldn’t it work now. Things like this push people to take more opioids to get by. I don’t want to do that but what else can I do?

Hi all participants
I feel that it is about time that lobbying to add people who are suffering chronic pain that is life long and a living human being is unable to live a real quality life needs a high priority substantive strong political action to have unbearable/at times feeling the need of palliative care be able to access euthanasia.
This action should be stigma free
When in chronic pain without loved ones, depending on paid workers who you may just care for (professionally) who just disappear obviously for a better job and more money and more,’You are just a thing, a number within our supposed first world country.
moira

Maureen

I sure do appreciate Dr. Lewis’ work! But, I agree with F.S.T. some of us barely get through our days of struggle with a set routine in order to survive each day, let alone to be able to focus on all of that. We do need and could use proxies for sure.

Donna

I appreciate the information Dr Lewis has gathered so we have the tools needed to fight for our right to live humanely. I wonder…could/or would being denied medicine that allows a better quality of life (humane treatment\no more torture) be considered a civil rights violation? As we are created equal and possess certain unalienable rights etc… Which brings to mind the Dr Kevorkian issues of assisted suicides. My mother became terminally ill at the height of that issue. She told me that it didn’t seem fair to her that it is legal to euthanize an animal but not a human. I have to totally agree with her. If a civil rights attorney reads this, please give me some feedback on my warped (?) way of thinking.

Feed-up
I am so feed up with it all. I go from being so mad to cutting my head off. It really really pisses me off to be told by ppl that have never looked at an ex-ray of mine, Can tell me how many pain pills I can have in one month, or what kind of pain pills I can have, Then there the counting of my pills, as if I’m a criminal and can’t be trusted! The doctor, Who Has looked at ever X-ray and performed ever surgery and diagnose everything about me cannot prescribe the pain medication that I need.

Barbara W

We just have to scream it on the media constantly like they have done with the OPIOD EPIDEMIC!! So they hear us we should not have to repeatedly explain our Pain because this is IN HUMANE PERIOD! It is all about the money special interests because masses of different agendas & players are involved & on the taking of the DRUG MONEY OPIODS BRING LOTS OF DOLLARS! Heroine included , Meth cocaine etc. The DEA ran the backyard Meth out of the US only to have the way stronger version come from Mexico 7 lbs produces $300,000 in revenue they take their cut they arrest Marijuana medical clinics & suppliers to dictate whom grows & sells it so they get their cut of that too! The CIA is the DRUG czar for heroine 90% (Afganistan) on & on it is huge all involved not to mention crooked Kolodny & Rehab industry cleaning up! Legalizing it all would finally let us have our MEDS hopefully. I think the drug addicts are just the excuse to scream epidemic. There are less opiods prescribed than ever, more from the black market which means more $$$

Can’t stand up and fight? Then lay down and fight. if you can make a comment on this site, or post to facebook, you can review these links, send emails, watch streaming videos. and make phone calls.

One thing is sure. You can’t do anything you don’t want to do or aren’t motivated to do.

If you can do this by yourself, join a social media state group.

Can’t never could.

Mark Ibsen

Thanks Dr Terri Lewis.
Great recipe for activism.
I only have to overcome the inertia set up by the beaurocracies.

Dianne Covell

I have Had RSD since 2006 along with other health issues. I am 59 years old and battle pain every day. Since my medicine has stopped, I’m suffering terribly. This is abuse to a human being. I am not an addict, and I have no desire to run to some street corner to buy heroin. All I want to do is have a halfway decent day. To go to work, grocery shop, and wash clothes has been a struggle. I never thought in all my years that I would be punished & labeled by a government with no medical license or experience.

Bob Schubring

A point that confuses many people is this: “Who is responsible for making the overall health system work?”. The answer to that is in the very first 3 words of the federal constitution, “We the People”.

The people of each of the 50 states are in charge of our health system. It’s up to us to make it work.

Those of us too ill to attend public meetings, can still write, blog, and telephone.

Denise

Thank you Dr. Lewis, and to address F.S.T concerns I have too felt how overwhelming this is all is, but it has become very apperate that the lack of support for the rights as Chronic pain individuals has taken a back seat. 29 years ago I never thought I would be battling for pain medication, and Dr. Lewis has put a lot if information for all of us to use. I sometimes can’t even move from the tumor that swells and presses against my spine. But having pain medication “Morphine” that allows me to get through that time of excusating pain, until the swelling goes down enough so I can walk. F.S.T hang in there, find people in your state that can pick up the gap if you can’t, link on to a pain site if you haven’t already. I have emailed the White House. I have been speaking with my Pharmacy, and other pharmacists, Doctors in my State. Senator Ted Cruz sent me an inivation to Town hall that was on the 19th of this month. I accepted with plans to address this issue. I asked to talk to Mr. Cruz I listen until the end but never had the chance to talk. Now whether it was not on topic or that I had made a donation which took a lot of time. Still we that live in this unrelenting Pain tend to focus on this mountain! Mainly because that which helped us to climb down has again come under attack, and Dr. Lewis is right we need to put this plan together. Remember the Government was assembled to insure our inalienable rights were not abused! see something wrong with this picture? Thank you Dr.Lewis.

Kathy C

Americans are being Gas Lighted by the Healthcare System. Engaging with people who are invested in “Alternate Facts, is an exercise in futility. In my state our Health Department Employees have side jobs. They get free services from Alternate Therapists, they promote. We are living in Post Fact America. We no longer use Science, or common sense to make decisions or craft Policy, it is all about financial Incentives. They have been broadcasting Alternative Facts about this problem for a decade now. We would expect Medical Professional to have at least a modicum of Science Background, but they Believe the Alternative nonsense too. There is just to much money involved for anyone to have access to the facts.
Look at the Infant and Maternal Death Rate, unlike the so called “Opiate Epidemic” where there has been a clear misinformation campaign by the drug companies, the same thing is going on there too. The “News” made the rates a matter of opinion. They disparaged the woman and babies that are dying. The “News’ acting as advertising and PR for the Childbirth Industry, left out the facts for years. The Dangers were censored, as they showed only the good stories. The Numbers of woman and babies affected by this, should cast some light on how dysfunctional our Healthcare System is. Instead the “News” downplayed it or attributed it to “Lifestyle Factors.” They did the same thing with the Pain Community. The people that the Medical Industry can’t fix, they just pretend we don’t exist or are “misguided.”
It should not be our places to try to Educate the people who have been brainwashed. They already believe they know the facts on this matter. They only know a narrow set of facts that have been repeated in our News Media. They are incapable of any taking in any new information. The Facts are useless anymore. The Industries came up with their own set.

Ruth Ann Dorf

Here’s my thought on all this I have been going to pain management now for at least 5 years and I had chronic pain way before that couldn’t deal with it anymore. I am still working at the age of 69 because I have to if I didn’t have my opioids I would not be able to function and it’s still difficult for me to function with those I’m a hairdresser I Stand On My Feet 10 12 hours a day and I find it difficult to keep on going sometimes I’m in tears because of the pain. I do exactly what my doctor tells me to do exactly what he gives me I understand there are a lot of people out there that are just abusing the drug but they need to figure out the people in real chronic pain and the people who are just coming in and getting it for a drug fix

Margie Shubin

Cindy Celmer There is a voltaren pill that does help. I take it along with my opioids and gabapentan. I am still in pain everyday. It’s all so draining on your mind and body. Maybe this can help a little.

David Cole

Thank you Terri so much for helping us. I find it very comforting that people are actually trying to help us right this wrong that’s been done to us. I will do everything that I can but my pain medications been cut back so far that I’m in bed 90% of the day. Half the time I can’t even think, watch TV, play with my grandkids, do the dishes, take a shower, nothing, this is like a horror story that never ends. I’ve already been cut back 260 mg of pain medication a day, I could have learned to live without some opiate pain medication but they have went too far. We’re good law-abiding citizens, we shouldn’t be tried convicted and sentence to life in bed or suicide for the sins of drug addicts.
Thank you Terri,
David W Cole

Seriously

Study groups, 3 ring binders, inviting representatives to our homes, a near admission of futility with a comment stating that it doesn’t matter how long it takes, followed up with the remark that we’ve been told what to do, “simple as that.” What a wonderful plan! How many more patients will die in the interim?

Glenda Rohan

I understand about young adults and children over dosing on opioids The concern and frightening rates going up The most difficult situation is the fact that others like me, the chronic pain sufferers that have to struggle to function any at all cause of the fact that the opioids helps to function I am not functioning or getting around as well as I did Those of us chronic pain sufferers are not given a second thought If they could feel our pain for 72 hrs and try to function maybe they would realize how much we are suffering

Eleanor Drewniak

This is great information. Thank you. I’m so very exhausted looking at what needs to be done but, as soon as I have the strength to follow the steps I WILL do my part I have had chronic pain for 15 years. So few people know what chronic pain sufferers go through to find a formula that allows them to function without being bedridden or very ill from side effects. My illness cannot be cured (yet). Prescribed opioids allow me to perform everyday functions so many people take for granted, watering my flowers and plants, washing clothes, going to the grocery store, etc. I thought I would never have a relationship again but a few years ago a high school friend looked me up and we fell in love. I am not a drug seeker. I do not want to be a “drug addict”, but I do want a life free of so much pain I lay in bed and wait to die.

Cindy Celmer

I’ve been dealing with chronic pain for years. My X-ray s have shown herniated discs in cervical thoracic lumbar. Years ago a doctor diagnosed me with fibromyalgia so the pain doctors only focus on this.Nsaids caused Gi upset hypertension. Most recent “pain expert” prescribed Voltaren gel …. I was a health care provider. Now I need relief and cannot get it

F.S.T.

Very well thought out, and descriptive step-by-step plan to fight “City Hall.” Thank you, Dr. Lewis. But here’s our reality: We are not able to stand up and fight. Inherently, a chronic pain patient is just that. If we were able to mount a pro-active response, then most of us would be leading more normal lives. I’m not being defeatist, just honest about our situation. We need proxies.