US Pain Foundation Responds to Senator McCaskill Report on Pain Group Funding

US Pain Foundation Responds to Senator McCaskill Report on Pain Group Funding

By Ed Coghlan.

Missouri Senator Claire McCaskill released a report Monday alleging that from 2012 to 2017, leading manufacturers of opioids gave $9 million to pain treatment advocacy groups.

Here’s how her home state St. Louis Post Dispatch covered the story.

The report claims the arrangement “may have played a significant role in creating the necessary conditions for the U.S. opioids epidemic.”

The U.S. Pain Foundation, which we note is a partner of the National Pain Report, had been working with Senator McCaskill as she developed the report. U.S. Pain Foundation President Paul Gileno was very concerned that the report doesn’t tell the entire story of what the funding does.

“Sadly, Senator McCaskill’s office did not use all of the information we sent over about our funding and how we use it,” he said. “We were transparent and explained how we use all of our funding and how it helped our hands-on programs and services to help people with pain.”

Later in the day, Gileno’s organization put out the following statement:

U.S. Pain Foundation is a nonprofit dedicated to serving the 100 million Americans living with chronic pain. As an organization entirely comprised of people with pain and their caregivers, we work hard to offer effective programs to educate, empower, connect, and advocate for people with debilitating chronic illnesses.

In order to provide these programs, we receive funding from a number of sources, including pharmaceutical companies. Our donors are listed publicly on the transparency section of our website, and the funding we receive is not used to promote one type of treatment over another. We promote a balanced, multidisciplinary approach to pain care. Doctors and their patients must weigh the benefits and the risks of all pain management options and work together to decide on the right treatment plan.

A report was recently published detailing the funding that patient advocacy and physician organizations receive from manufacturers of pain medications. U.S. Pain Foundation is included in this report. It is important to clarify that $2.5 of the $2.9 million of funding received in the last five years goes toward a large copay assistance program for cancer patients dealing with pain. The program helps to cover the high costs of treatment. The program is not limited to any specific type or brand of pain medication. (If you would like to know more about this program, please contact us.)

This funding, like any funding we receive, does not influence our values. When it comes to opioids, we believe both that people with legitimate pain have a right to effective care and that systematic changes must be made to address the ongoing opioid crisis. As a patient advocacy organization, we support the discovery and development of safer, more effective pain treatments. We also support sensible reforms like prescription monitoring programs, more training for clinicians on screening for and treating chronic pain and substance use disorder, and limits on opioids for acute pain. The chronic pain and substance use disorder patient populations must work together on solutions like these.

We are very proud of the work we do on behalf of the pain community. If you are interested in learning more about our funding, click here. To learn more about our programs, click here.

If you have comments on this story that you’d like to share with Senator McCaskill, please send me a direct email (editor@nationalpainreport.com)

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Authored by: Ed Coghlan

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Holly

No you are right Bonnie….it’s pure [edit]!

This is to Terry in Michigan, I thought I was going to have to write everything I am
currently feeling, as MOST Doctors don’t even know what RSD / CRPS
is, for one, and I can relate to your pain as I was diagnosed with this crippling
disease in 2005 . From a broken leg, to broken tibba, torn meniscus surgery that
i never got over the surgery pain.
The specialist in San Diego told me I should be running out his office, I could barely
walk much less move my leg.
With your story, I went to 9 different Ortho Surgeons in San Diego all telling us ,I had
RSD, finally being that my husband is a retired Navy Chief wrote a letter to a caring’
at that time, Surgeon General pleading to be seen at the Naval Hospital San Diego
as we just thought all the Dr’s we saw were covering each others butts, I was seen
by the 2 TOP Ortho Surgeons at that time, came to a diagnosis of RCPD, again
saying What is that?? They told me I would live the rest of my life with this horrid
burning pain, I just wanted to die.
So as you can imagine, you saved me a lot of time and agonizing pain in both legs
now, am on the same ship as you!!
So after 2016 of me on my death bed, with Sepsis, my husband was told I would
not make it thru the night. But I guess it was not my time.
So after 7 long months of recovery we moved to Springfield MO as they had many Dr’s
with all the medical places.
Not once even thinking I would be turned down by many Pain Doctors, as in there eyes
I was an addict.
I ended up getting a Pain Specialist in St Louis, 211 miles one way, till i cant do the
trip anymore, and it was breaking us financially, now I am at the grace of hopfully
getting the med the wrong way. But I can blame the government for that.
Ever think to yourself, Who put me on these meds?? You got it A DOCTOR.
Now with their whiny butts going belly up, Didn’t have the brains to identify a addict
and a true pain patient. You would think with all that schooling and colleges for years
would be able to tell the difference. I know I can, I can tell you by walking in a Pain
Management clinic who is and who is not, and I only have a high school diploma.
Terry, I just wanted to let you know your not alone. And whats even worse, it travels to other
areas of your body.
I cant think straight and I hurt terribly, so I am off to the place that i will die in, couch or
bed, with a heating blanket. Turn it up to 8 to 9 and get a bit of relief. But not for long.
Im hurting too much to type. Hang in there and when your feeling lost, My email is
debilee1953@gmail.com

Marguerite L Martin

It’s a shame when you’re looking forward to invasive spine surgery just got a few days of pain relief. I’m hanging in there because I’m looking forward to the day three sadistic [edit] get there comeuppance. Thank you for the prayers as well. Stay strong!

Maureen M.

I only wish we could all get on a mountain top and scream.
I’ve said this before…this in NOT AN OPIOID EPIDEMIC, IT IS AN ADDICT EPIDEMIC. They need to look and compare those numbers from the past.
They need to speak with us, the severely suffering CP community. We’d be more than happy to sit at their table and talk.
If I could afford it I would put billboards everywhere across this nation and make commercials on our behalf.
God help us and keep us safe from the wretchedness of the government.

@Marguerite…and others, I wish so badly I could help you. It’s a horrific shame the increased suffering we are going through due to their ignorance and refusal to view us. All I can do is keep you in my prayers and encourage you to hang in there, one hour at a time. Keep strong Warriors!

The senator and any other real truthseekers need to read this report http://painsproject.org/…/PAINS-No-Longer-Silent-Report… which tells the true story of two epidemics that have little in common other than their both being caught up in the war on the drugs that both take lives and give lives back. Please visit the PAINS Project at http://www.painsproject.org which just happens to be physically located in Kansas City, MO.

Sandra L Sullivan

Heart and diabetes foundations also receive funding from pharmaceutical companies – what’s the difference?

There is none. They simply do not understand that chronic pain is an umbrella for many illnesses they know well by name, some have their own foundations but many do not.

It is maddening. They successfully shamed the APF out of funding – when it had a great way to support, find doctors and offer help to people in immediate need of ‘venting’ about pain [back when we had meds too]

Don’t let them grind us down. We all must hold our heads high when discussing our medications. If we don’t talk openly to those who do not have pain; then we cannot expect them to understand.

Thanks for all the US Pain Foundation and National Pain Report do!!

Terry from Michigan

I sent an email to editor@nationalpainreport.com and all it does is give me an error. Here’s what I wanted to send to Senator McCaskill: Hello Senator McCaskill. I am a 60 year old man with chronic pain. I have had chronic, widespread pain for over ten years. I saw every kind of doctor imaginable, looking for answers as to why I feel so horrible 24 hrs per day. I had never requested any kind of pain medication because I never wanted to take any pills, I was anti-medication you might say. Finally it was suggested by my reumatologist to see a pain management doctor, he also told me that more than likely I have an autoimmune disorder called CRPS, complex regional pain syndrome, brought on by 18 major surgeries on my legs, a twice broken back, numerous broken arms, hands, fingers, toes, dislocations of the shoulder (multiple), dislocated elbow, lots of strained and sprained joints, a quad tendon rupture ,broken ribs, I also have degenerative disc disease, I have Raynauds disease, I have Morton’s neuromas in my feet, (look that one up, they compare the pain to child birth), trigger fingers, tendinitis in my arm, and osteoarthritis in 90 % of my joints. I take Nifedipine for the Raynauds, which eliminated all of the symptoms, I take Symbyox and Wellbutrin for depression and anxiety, which works great, I take Ritalin for ADHD, which works well, I take Flomax at night for an enlarged prostate, I also take Lunesta (sleep aid), at night because pain keeps me awake, I sleep for 5 hours so that’s good. My pain management doctor, Viji Thomas, Sterling Heights, Michigan (most uncaring person I ever met, no compassion whatsoever. I told him that my 27 year old son had an accident and died recently, he said “well you have to go sometime” and he smiled at me), tried 4 separate back procedures which did nothing. Over a period of 10 years he prescribed many different types and quantities of pain medication, approximately 5 years ago my pain medication prescribed was five 15mg of oxycodone immediate release and three 40mg oxycontin extended release, so with all of the doctors and psychiatrists, they finally got all aspects of my life very successfully managed. My moods were good and consistent, no extreme highs or lows, my widespread body pain was mostly kept at a level of 4 on a scale from one to ten, which was totally fine, I finally was a high functioning, happy person for the first time in my life. Now with all of the incorrect, skewed, one sided, paranoid statistics out there regarding the “so called” opioid epidemic, my pain management doctor has been lowering my pain medication every time I see him. He claims that the DEA is forcing him to lower everyone’s meds. So now I am not a high functioning, happy person. I feel pretty horrible 24 hours per day. It’s an absolute crime what’s going on in the chronic pain world… Read more »

Kathy C

That 9 million was a trivial amount of money for the Pharma Industry. They spent a lot more paying for our Politicians and devising schemes to misinform the public. They need to expand their investigation, to look at how the Pharma Industry really does business. This is a Mad Hatter’s Tea Party, looking everywhere, but right in front of them. They ought to look at how these Companies monitored Patient Groups on Facebook, manipulated the narrative and continued to sell massive amounts of Opiates, while even the D.E.A could only sit by and watch. Now they are looking to Scapegoat the people who they have made invisible.

It is almost as if we all have been the participants in a massive brainwashing scheme. Big Pharma spent more money on “Entertainment” for Physicians and Politicians. They need to at least agree on an objective set of Facts.

Marty

Wonder if Senator McCaskill knows of this big pharma connection???? Will she call out her fellow Democrat Patrick Kennedy??? Single Payer IMO could remove a hell of a lot greed by taking the profit out healthcare but Claire may be taking money from Big Health insurance or Big Rehab…….. in the end it’s all Benjamins not what is good for those who suffer.

Mystery solved: Addiction medicine maker is secret funder of Kennedy-Gingrich group

https://www.statnews.com/2017/03/03/kennedy-gingrich-group-funder/

Marguerite L Martin

How can this foundation help me? I need relief so bad. I have pages of problems with my spine and will have a3 level acdf on February 28th. I can not get adequate rest all i do its lay in bed or go to the bathroom or the kitchen then back to bed. I cannot get anything for pain im obviously in. Unable to even brush my damn hair i hurt so bad. How and why is this allowed to happen. I feel like a freaking victim i for being disabled. It’s not my fault i have spinal cord injuries and related disabilities yet I’m treated like I’m at fault why because I’m still alive? I won’t be much longer and i just bet my death will be attributed to this [edit] opioid war! I need help! My government is torturing me to death. Does anybody care whats it gonna [edit] take? Because when i go it won’t be pretty. My life would be all roses if i could just participate in it. I’m beyond disgusted. This is criminal. How come no one will take on the FDA for crimes against humanity and domestic terrorism section 802 of the U.S. PATRIOT ACT. Hello!

I don’t feel anyone is taking chronic pain seriously. Doctors are afraid to treat the patient. Mishandling of funds at the government level is nothing new. This is now the worse time for those of us with debilitating pain to receive the medication needed to help lead a somewhat normal life.

9 million dollars what a joke, these company’s made billions of dollars creating a epidemic and that’s what they give back while the ceos of these companies make 80 thousand dollars a day

The health care system is broken, after coming off bad withdraw from 60mgs of cymbalta I refuse to do anymore prescribed meds, the FDA and big phamacutical work hand in hand,and its all about the greed and the FDA letting big pharma letting bad drugs out into the market .

Jeffry Roush

LIBERTY V. Imperialism It is not for my servants to question the motives of my liberty. Nor is it a question of motive until, or unless, my motive is harmful to another. To protect society is a misnomer of current law and has been established through administrative doctrine, not common law, resulting in nothing more than a bureaucracy bent on revenue and the income potential of the American Bar Association. For instance the laws regarding driving a motor vehicle under the influence of some kind of drug, something that most Americans (whether they take insulin for diabetes or analgesics for pain), driving under the influence of a mind-altering substances happens every day. The percentage of the population under said influences increases with age. I dare say that well over 40% of those over the age of 60 with a driver’s license drive on a regular basis, if not daily, on some sort of medication. Our public servants included. From blood pressure medication, to anti-depressants, from beer to scotch, from marijuana to methamphetamines, our society seeks alteration of its reality on a regular basis and every damned one of us drives while doing so. Including our servants. Recognized as a problem, the solution is not for our servants to seek ways to deprive us of our liberty and property. In fact the fascist manipulating our current judicial system are so simple minded that the only solutions they can come up with is to call at least 75% of us criminals and selectively enforce laws that make them traitors to their oaths. Where is the public transit system that makes driving unnecessary? Where are the technologies that do indeed exist and would make all vehicles safe from collision with each other or static objects are such things only of value in fighter jets and choo choo trains. The solution is not persecution. Injustices can only end in revolt…again. Though the obvious statement above is almost satirical it also states the inevitable, we must not continue to hide the big family secrets that tear the soul of our nation one home at a time. Abuse is neither justifiable nor necessary to manage conformity. Our States say they are in charge of abuse and imprisons its’ employers to be abused for abusing. While institutional conformity, as an instrument for governmental authority in the most extreme case may be a certain reality or even a necessity, the over use of this “solution” is not acceptable. The greatest good will dwell and wherever it would dwell so too will seek the greatest evil. The problem is the definition of discipline and abuse and punishment is what is in the best interest of the individual their children and society. When we abuse the crime is not assault and battery it is the creation of a legacy of abuse, and all too often the birth or rebirth of a criminal (our ancestors called them demons). When adult societies generally seek conformity via cruel means the result is revolt.… Read more »

Bonnie Collins

I’d like to see McCaskill, under oath testifying to the number of family and friends she has who own, and run drug treatment facilities. There’s more than pharmaceutical companies to blame for opioid misuse. It’s not a crisis, epidemic, or pandemic in my opinion.