US Pain Foundation Issues Press Release Regarding “Skinny Repeal”

US Pain Foundation Issues Press Release Regarding “Skinny Repeal”

Editor’s note: National Pain Report is happy to support our friends at US Pain Foundation as they educate, connect, inform and empower those living with pain.

Chronic Pain organization applauds rejection of ACA repeal

MIDDLETOWN, CT –July 28, 2017-In the early morning hours, the U.S. Senate narrowly rejected the most recent proposal to repeal and replace the Affordable Care Act, known as the “skinny repeal.”  McCain (R-Arizona), who was recently diagnosed with brain cancer, casted the deciding vote.

“Putting politics aside, we are pleased to learn that people with chronic pain woke up the quality and accessibility of their health care still protected ,” said president and founder of U.S. Pain Foundation, Paul Gileno. “As an organization created by people with pain for people with pain, we were concerned about the far-reaching consequences of the bill.”

Some U.S. Pain volunteers took in-person action, including senior advocate Wendy Foster, who spoke at a meeting with Sen. Richard Blumenthal earlier this month.

U.S. Pain Foundation has been tracking the progress of the repeal and replace movement, creating online engagement opportunities for its volunteers to email their members of Congress and share their pain story to help illustrate the importance of reliable, effective health insurance.

Among the concerns the organization expressed was the increased number of uninsured, given that chronic pain – which affects 100 million Americans – can strike at any time and result in enormous medical bills. U.S. Pain also said it opposed massive cuts to the Medicaid program; as individuals with severe chronic pain may have difficulty working due to their health and may rely on government assistance to afford insurance.

In addition, the organization was weary of the removal of the individual mandate, which would increase premium costs overall and the possibility of lower quality insurance if essential health benefits were eliminated. Finally, U.S. Pain staunchly disagreed with any proposals that included weakened protections for those with pre-existing conditions.

“We believe everyone deserves high-quality, affordable health insurance, especially people with chronic pain,” Gileno explained. “The ACA is not perfect, but it should be built upon, not torn apart.”

U.S. Pain was among many health care and patient organizations that opposed the proposed reform, including the American Medical Association, the American Public Health Association, the American Cancer Society Cancer Action Network, and the National Organization for Rare Disorders.

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About U.S. Pain Foundation

An organization created by people with pain for people with pain, U.S. Pain recognizes and validates the challenges 100 million American endure every day.

The mission of U.S. Pain Foundation is to educate, connect, inform and empower those living with pain while also advocating on behalf of the entire pain community. As a 501 (c)(3) nonprofit organization dedicated to serving those who live with pain conditions and their care providers, U.S. Pain Foundation helps individuals find resources and inspiration.

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Authored by: Staff

There are 14 comments for this article
  1. Tim Mason at 7:07 pm

    A somewhat historical significance to healthcare….and not so long ago…We did not have ambulances as we know them know. They were usually hearses from funeral homes. It too has become quite an expensive and lucrative business. People are now calling Uber for the ride if unable to drive themselves. Now a medivac could cost as much as a full funeral.
    107 people die every minute. That is 153,000 everyday.
    So the next time you hear the Government complain about the SS or SSD fund shrinking remember these numbers. Many of these are old but some are young. SS and SSD was set up to be self equilibrating until someone started sticking their hand in the cookie jar.

  2. BL at 8:31 pm

    Karey, a doctor does not have to treat patients that cannot pay them. They have free and sliding scale clinics for those patients. There are also public teaching hospitals that must take patients without money or insurance. If a patient presents at an ER with a possible life threatening condition. The ER must treat them and transfer them to a public teaching hospital as soon as they are stable. But a patient has to present with a life threatening condition.

  3. nana at 6:27 pm

    Steven,
    I have had my Husband’s home health nurse say (we both were on extension phones) “Oh, are you in pain again?” We both snapped: “Still!.”
    I would say it was like he wasn’t listening but I had been making sure he WAS listening for all 2 1/2 years!
    We HEAR WHAT THEY ARE THINKING. When they speak privately, without a witness, ***they are blunt.***

  4. Steven at 4:44 pm

    Karey, you wrote;

    ”As a nurse and a chronic pain sufferer I find that I have much more empathy for patients than the majority of my colleagues, both nurses and physicians. The conversations I’ve overheard by staff would amaze many not in the medical field. It’s so sad.’

    I would really like to know what the professionals say when we, our fellow pain sufferers, are not in the room.

    As a fellow pain sufferer for much of the last thirty years, I would really like to know what the pros are really thinking. It may help me to explain some of the awful treatment given by them as soon as you tell them about your pain. I know that far too many professionals simply label us as “Having Drug Seeking Behavior” when that is not true in most cases. We want real pain relief and that doesn’t always equate to “I want drugs”, like they say is happening. We simply don’t want to live in such pain every day. Please give us recources on how to alleviate our pain. That can be anything from therapy to surgery, not just drugs.

    I hope you see my post and respond.
    Thank you for your time. Have a great day.

    Steven

  5. Tim Mason at 8:32 am

    Karey,
    Reach out to your State Medical Board via certified mail. Ask for a referral to a physician on the Pain Management Board of certified Pain Management Doctors. You can find the form on line for your state. If you have a family member that can act as a witness have them sign the form as well.
    Be sure to include a copy of your surgical notes from your accident. Be ready to give names and license numbers of those physicians that gave you the “band aid” . That # can be found on the prescription they gave you.
    I am almost 60 but was hit by a car when I was younger. (my fault). None the less, it appears you my be a victim of elder abuse by the medical profession and a victim of the new policy by physicians called “Cherry pick and lemon drop”.
    The AMA no longer considers it unethical to not treat those they feel they do not get financial compensation for. It is on the world wide web. Take a look.

  6. Linda at 2:01 pm

    Hi Karey, THANK You for sharing your personal story. It just meant a lot to me to read it. It makes me feel (selfishly) feel not alone. I will add you to my prayers at bedtime. God bless..
    .

  7. Karey at 2:59 pm

    I’m a 49 year old women who was rear ended while sitting at a stop light by an older gentleman going approximately 55mph. Witness reports stated that it didn’t look as if he had even tried to slow down before the collision and the man himself, though he couldn’t recall exactly what happened, stated that he might have fallen asleep at the wheel. I suffered a fractured cheek, required left knee surgery, multiple back procedures and am now left with, sometimes unbearable pain.

    After procedures failed, my pain has been managed with mostly medications which usually keeps my pain to a tolerable level, though I am most certainly never pain free, not even close and evenings and nights are always the worst.

    At the end of June 8 found myself unemployed and without any money. I thought I would make it to the pharmacy to fill my prescriptions one last time before my insurance was cancelled but that didn’t happen. I was amazed at how quickly the insurance coverage was dropped. To pay for my medications without insurance would have cost me from $1,500-$2,000. I finally got into a free medical clinic only to be told that they don’t prescribe opioids medications, nor would they prescribe muscle relaxer. In fact out of the five different medications to manage my pain, only one were they willing to write a prescription for, quite a joke actually as my physiatrist and I had worked since the accident to find a regimen that made the pain bearable. It didn’t seem to matter that my life over the last several weeks has primarily been spent in bed, mostly lying on my right side as any other position hurts.
    I had to make two trips to the emergency room in the last two weeks and each time I begged them to not just put a bandaid on the issue by giving me pain medications and sending me home but to admit me and give me a full work up. Hoping that this would be the one doctor that would listen to me and find a reason that could be “fixed” so I don’t have to live like this but that didn’t happen. No, they simply put the “bandaid on it” and sent me home. One ER physician had the audacity to ask me if the reason I was crying was because I was depressed. I was furious! No, I’m in you’re ER because after lying in bed most of the night sobbing and hoping that I would finally just be exhausted and fall asleep in pain, 8 simply could no longer take it!
    As a nurse and a chronic pain sufferer I find that o have much more empathy for patients than the majority of my colleagues, both nurses and physicians. The conversations I’ve overheard by staff would amaze many not in the medical field. It’s so sad. I pray that none of them ever have to experience the pain that I and many others do everyday. Or maybe that’s the only thing that will open their eyes.

    The powers that be decided many years ago that medical institutions and physicians were not treating pain adequately so physicians made sure that they didn’t get “hit” with that concern when federal/state regulators came to perform their annual surveys. Now the pendulum has swung drastically the other way and I know first hand it’s by far being undertreated! Quality of life should be the most important thing!
    While I won’t argue with the fact that there are many people/addicts who have abused the system and I suspect those are many of the people who die from overdoses by taking more than the prescribed dose or drinking alcohol or using other drugs with the opioid medications. It is now we, true, chronic pain suffers that are left to pay the price!

    On the topic of insurance, I’ve been a nurse for many years and we don’t EVER want to return to the days when you could not get insurance coverage for preexisting conditions, that was a sad time. Do I think the current insurance system needs revised, of course. Let’s be real for a minute insurance companies were always going to find a way around not being able to exclude people ( I knew that from day one) but lord help us if they return to the old system!

  8. BL at 4:07 pm

    Ibin, if you and/or your wife are unable to work due an impairment(s) you can file for Social Security Disability Income if you have worked and have at least 20 work credits for 5 out of the past 10 years before your Established Onset Date. The adjudicator or ALJ decides your Established Onset Date. It may or may not be the same as your Alleged Onset Date.

    If you do not have the required work credits and you have little to no income and less than $3,000 in resources if you are married, you can file for SSI. Medicare comes with SSDI. Medicaid comes with SSI.

  9. nana at 9:52 am

    Obamacare is imploding.

    Regarding the repeal of Obamacare including this skinny repeal..

    Rates are skyrocketing, insurers are jumping ship and no one can afford the rates. Sub-par service are the result.70% increases are the norm.

    The blowback against President Trump for trying to fix it will destroy our nation if it continues.

    Most things, including President Trump’s attempt to fix or start to fix healthcare, are being voted against PURELY BECAUSE PRESIDENT TRUMP is the one initiating it.

    I am appalled our (part of ) nation is doing this JUST FOR SPITE. How petty.

  10. Robert Schubring at 9:14 am

    PaIn patients need to form a Union and go on strike against the Insurance Companies.

    Obamacare, now the law of the land, imposes a tax on us for Not Being Able To Afford, what the Government defines as Affordable Care. While this is wrong, the so-called Skinny Repeal failed by one vote. We’re stuck with the tax.

    But what we could do, if we were a Union, is go on a Premium Strike.

    We would put our monthly Insurance Premium Payments, into a fund and just hold them there.

    The Insurance Companies could get the money they charge us, but only if they actually deliver the care they promise.

    And what we would demand, as a Union, is that the Insurance Companies stop labelling us as Addicts.

    They can have their sweet, precious money, which they value more than our lives, the moment they stop calling us Addicts.

    And not a day before.

    THAT’s how we win.

  11. Ibin at 1:25 pm

    As a 58 year old, along with my now disabled souse, that has placed 2 children trough college, and paid for our home by the time we were 45 years old (married at 18). My spouse and I now lice in a double wide home. A ‘repossessed” home that we barely were able to get because of paying our medical bills, health insurance premiums, and recurring bills. We could have filed bankruptcy but, our sense of “fair play”, integrity, and life long teaching and learning experiences for our chlldrens’ and other younger friends sake forced us to sell our home, that I personally built(hands on) to settle our medical debt.

    Our medical health issues startd with our youngest son diagnosed at 9 years old with a lifetime, non treatable, non “curable” kidney disease, that has melded into psoriatic arthritis. I, have underwent two spine surgeries with a third looming on the horizon. My oldest son was injured at 27 years old and had to have a knee replacement surgery that started with what should have been a minor surgery. The doctor totally was botched the surgery, and after 2 years treated at the infamous Duke hospital in central NC was abandoned as a patient (attorneys state that he was not abandoned) with a very, very serious knee infection. The knee replacement was done in Charlotte NC by year a third surgeon, four and one half years after injuring his knee. My wife was diagnosed with lyme disease and fibromyalgea which finalized the decision to sell our property.

    Three acres of beautiful land, a nice home home, double enclosed garage, a 1000 square feet storage building that housed mostly the tools for my business all in a desirable part of the county.. My personal insurance premium by this time had reached an astronomical monthly premium.I AM especially interested in health care, simply because health situations have dashed any hopes of retirement before I reach death.

    My children, 37 and 38 years old, both living in daily pain, still…..work for a living. My spouse lives in daily, continuous pain. I was still employed until the CDC mis-guided-line at legislating “how people should think” has all but ended any type life with anything other than surviving the day of pain for my wife and I.

    ALL people, employed or not, should have affordable health care and IF they can not afford decent health care then we, those who can, should aspire to help the less fortunate. Up until February, 2017, I was still able to “pull my own weight” even with two very invasive spine surgeries. The CDC mis-guided-line has taken care of that. The future is extremely cloudy. I have written, telephoned, e-mailed, and texted anyone, everyone,…… political, agency, and physician wise those that can inform or educate me just exactly ……how, the folks in my position or worse are to survive. Needless to say to the patient with pain, the immediate horizon looks bleak. Blowing through life savings at an incredible rate, I can get no positive response from any agency or any resource that may assist my spouse and I the information we need to simply survive. I am thankful for the political “leaders” in this nation that are still members of the human (humane) race. It is not difficult for the patient with pain to be pi$$ed off.

  12. nana at 10:49 am

    The “skinny” may have been repealed by one vote but how is that going to help us with this war on chronic pain patients?

    Either passed or not passed there IS A WAR ON CHRONIC PAIN PATIENTS THAT IS NOT GOING AWAY SOON.

  13. Bob Schubring at 3:44 am

    It’s a tragedy that US Pain Foundation cannot think of constructive solutions to the excessive and punishing cost of taxes and debt, that are making 99% of Americans poorer and only the 1% who can afford a full-time lobbyist, richer.

    Massive cuts in Medicare and Medicaid are inevitable, because in a US bond default, China, the owner of most of those bonds, controls how Americans share what’s left, after our debt to China is paid.

    The entire corrupt structure of Obamacare is built around creating a climate of fear among patients, to which fear we are to respond with dependency upon our politicians.

    Take, for example, the politicians’ pretended concern for people with pre-existing conditions.

    Every pre-existing condition is different.

    We pain patients, the people whom US Pain says it supports, have the pre-existing condition of pain.

    If we depend on politicians to care for us, they will continue to wage war upon us, label us as “druggies”, and shame us into committing suicide more frequently, because by these actions, they save money and delay the day of reckoning, when their debts become unpayable and China calls their bluff.

    What would happen if instead, every different group of patients with a different pre-existing condition, started a Patients’ Union?

    Think of what a Pain Patients Union could accomplish.

    1. We would bargain collectively with insurance companies, to get the best possible rate. There’s strength in numbers. Some insurer will want our premium money.
    2. We would give away seed grants of money to fund real research on pain.
    3. The researchers we fund, we would also ask to put on Continuing Medical Education (CME) classes for doctors. A doctor who wanted to treat Chronic Pain Patients, could take our classes and stay well-informed.
    4. We would certify which doctors passed our CME classes. Those who passed, we’d recommend as pain specialists. Those who didn’t, would lack our recommendation.
    5. Next time our union contract is up for re-negotiation, we’d show those insurance companies the numbers, on what it costs to treat chronic pain, when a doctor who knows how to titrate us to effect, is in charge of our care, and what happens when some goofball who never took our class, attempts to treat patients and botches the job up royally. And we’d demand that the insurers set their rates for us, based on what the real pain doctors cost…not the goofballs who screw things up.
    6. Repeat cycle.

    Bottom line here, is that everybody has the genetic basis of a pre-existing condition, already baked into their DNA. People who have a condition now, can give better advice to new people about to get it, than can outsiders who are totally clueless. It’s up to us to assert ourselves and negotiate what works for us, because nobody else has as much reason to care, as we do.

    As I said at the beginning. There will be cuts in Medicare and Medicaid. They will be gradual if they are done responsibly. Or they will be catastrophic if the Chinese Communist Party decides them for us, after our irresponsible politicians have finished wasting the last of the available money. A Patients’ Union can force those cuts to happen to the people who need that money the least: Lobbyists and other crooks in the insurance business. And we can save that money so that what’s left of it, goes to the people who need it most: Patients and our caregivers.

    Patients need to stand up for ourselves.

    The good news, Monday last, US Pain Foundation completely ignored. A group of people in New York City, the Cannabis Culture Association, filed a lawsuit in US District Court, seeking to overturn the Controlled Substances Act as unconstitutional. Their 89-page complaint to the court is very readable and very informative. They clearly demonstrate that the DEA lied to Congress and the American people, about what it actually knew about cannabis. They show that the lying has been so profound and so systematic, that the statute must be overturned.

    That’s a group of patients standing up for themselves. They deserve our encouragement. You can read their 89-page complaint here:
    https://drive.google.com/file/d/0B0sr7VzX-mO5c1dUb1A5UTJsd1U/view?usp=sharing

    Pain patients who require opioid therapy need to be represented in this lawsuit. I am actively seeking legal counsel who can intervene in the case, early, to preserve our rights and pursue discovery practice in the early stages of the lawsuit. It is historical fact that the Wilson Administration attacked pain patients in 1913, as part of a racist attack on African Americans. It needs to be shown how the racist policies of the past, have grown into a genocidal policy of harming all pain patients, by labeling all of us as an inferior race, regardless of our outward appearance and ancestry. And then this evil statute must be overturned.

    The only way we can win, is by becoming active ourselves. 102 years of persecution by politicians, is 101 years too many, to dismiss it as accidental. The persecution is clearly malicious. It’s up to us to end it.

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