A National Campaign Calls for Investment in Pain Research and Access to Pain Therapies

A National Campaign Calls for Investment in Pain Research and Access to Pain Therapies

By Ed Coghlan

The nation’s largest pain patient advocacy group has launched a campaign called “People With Pain Matter”. The U.S. Pain Foundation wants to  raise public awareness of the impact of chronic pain on the lives of nearly 100 million people.

Not coincidentally, the announcement comes on the eve of Pain Awareness Month in September and as the national political campaign begins to move into its final phase.

People with Pain Matter plans to mobilize citizens to take legislative and regulatory actions, influence candidates for public office and members of the media, and leverage social media to encourage policymakers, candidates, and other healthcare stakeholders to enact policies that recognize that people with pain matter. Its website, PeoplewithPainMatter.org, provides a platform for stakeholder education and engagement.

“Just because your pain may be quiet doesn’t mean you have to be,” said Paul Gileno, CEO of the U.S. Pain Foundation. “Together, we must champion pain care improvements in America. Those with pain deserve to be heard and they deserve access to all forms of pain relief.”

One-third of US citizens experience some type of chronic pain. This includes a range of conditions including cancer, Crohn’s disease, rheumatoid arthritis, and traumatic injuries. Yet, people with chronic conditions are increasingly being denied access to pain relief. Labeled as addiction risks, many people with pain have no other options and no access to medical disciplines that reduce pain by treating the whole person.

“It is time to remove the barriers to care caused by destructive public perception and marginalization of people with pain,” Gileno concluded.

U.S. Pain Foundation-which claims 70,000 members and 100,000-plus social media followers points out only 1 percent of the National Institutes of Health’s (NIH) research funding is targeted to pain research.

The campaign will dedicate its efforts to address the urgent needs of people living with pain, combat the stigmatization of people with pain, and call for a national investment in pain research to develop new pain therapies and treatments.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

There are 11 comments for this article
  1. John S at 10:43 pm

    Have the – Addicted – taken a front seat to those of us in Chronic Pain ?

    Think about it, the average addict might spend up to a few hundred dollars a week for medication – Cash – the DEA isn’t or only casually monitors these clinics. Last week I read that Suboxone is the most under prescribed addiction medicine on the market – meaning / keep providing the drug.

    Pain patients for the most part are called Addicts. Opiates are now given their own epedemic and rehab money – over 500 million will be dispersed to states that say ” Opiates are Bad ” Gov Wolf said those words and Pa. got their money.

    Hundreds of new products – not drugs are marketed for chronic pain – raking in hundreds of millions of dollars.

    A schedule I drug – Marijuana – is now used to treat pain and has been made legal in many states.

    Heroin deaths have skyrocketed due to the new cutting agent used by the producers. The drug Fentanyl a strong pain killer has been found in the Heroin supply. Opiates have become taboo so people ( we told them ) have turned to Heroin and DEATH

    It doesn’t take a genius to see that it’s better for a Dr to treat a – Disease – than to cause one by prescribing opiates,

    The money now is in the treatment and lots of money it is.

    It was Dr Mark Isben that said “Follow the money ” and so far the money is in the drugs used to treat opiate addiction. Is this the real reason pain patients are now suffering daily just to survive ?

    There is something not right about this whole – Epedemic – issue when legal drugs like alcohol or hospital mistakes kill many more people than opiates. It’s not about caring folks it’s about old fashion greed !!

  2. Tamara Johnson-Scott at 10:02 pm

    We NEED YOUR HELP!! THANK YOU! Observation– WHY is there a “HUMANE SOCIETY” for protection and treatment of ANIMALS BUT we have NOTHING for HUMAN PATIENT PROTECTION????
    Unless one can AFFORD an ADVOCATE!! Catch 22… MOST pain patients are on disability which means a “fixed income” soooooo now what?! Can’t afford $75+/hr for the advocate and STILL getting treated like “pond scum😐” and left to SUFFER until labs come back or my PCP calls in admitting orders until I get RELIEF/RELEASED from the EXCRUCIATING PAIN!! If we don’t HURRY UP and get this “ISSUE/EPIDEMIC” fixed there’s going to be another “ISSUE/EPIDEMIC that’ll arise and that’s “SUICIDES” of PAIN Patients that CAN’T TAKE THE PAIN ANY LONGER!!! You KNOW it’s coming!
    Suggest a UNIVERSAL HOSPITAL COMPUTER PROGRAM that requires a person’s picture ID as well as a FINGER PRINT for identification this will help ELIMINATE “SCAMMERS”! Being link by satellite ALL hospitals will have that patients info as well as a “Protocol” treatment plan which will HELP the patient get relief QUICKER! Which in some cases (like mine) means no hospital stays! So it’s beneficial for ALL patients! 😊😉😆 just a thought!

  3. Angel at 2:59 pm

    Pain medication for my chronic pain is no different then insulin for a diabetic. Bless you pain foundation for your hard work advocating for those of us who live daily in chronic pain. Thank you for all you do.

  4. Dave at 2:22 pm

    I like the title of the campaign- and obviously I agree that government and providers need to hear from people in pain that they matter and their pain matters, as well. Its unfortunate, how disempathic and far removed government continues to be from the needs of people in pain. The continuing escalation of failure in pain care reveals that unless people in pain ban together and fight back-government will continue to overburden people in pain and make their lives perfect misery. And who could deny now that pain care in America has violated the social contract for who would willing agree to be part of a society where government has performed so poorly toward the needs of people in pain. Its as if government believes people in pain should have no rights with respect to their pain care. Its as if the government gives new meaning to pain being a penalty- as its Latin root suggests. Their pain policies are as cruel as they are ignorant-and now the moral shock they have caused people in pain will lead to a pain rights movement that will reveal to government how unjust and lame their policies toward people in pain have become.
    I hope people in pain will seek structural changes in pain care so that the powers that be in medicine, the insurance industry, and government will be forced to listen to people in pain-as a matter of right. I hope medical consumerism will rise in pain care to counter the excesses and deficiencies of the health care industry toward people in pain. And I hope people in pain will realize they need much more say over what research is done and how it is done- if they hope research on pain will meet their needs. Failing that- government and industry may try to make minor and temporary changes to contain the “vague noise” people in pain are making about rights, injustice, suffering, and improved research, etc.
    These are the times that try the souls of people in pain. Government is dug in on the opioid issues- its time for people in pain to dig in to oppose policies that are detrimental to their freedom and well being. Failing that government will be emboldened to make life harder for people in pain by limiting access to treatment even more then it is now.

  5. Geo Sims at 12:59 pm

    We emailed US Pain Foundation. They were aware of the problem and are working on it (if it’s not already fixed).

  6. Geo Sims at 12:59 pm

    Hi Marnie,

    We emailed them also. They were swamped this morning and are working on the problem (if it’s not already fixed).

  7. Marnie at 11:46 am

    Tried to donate to the People with Pain Matters site through PayPal (to get a tee shirt), and it’s not working. Sent them an email, so hopefully will be corrected, FYI.

  8. Jasmin at 7:54 am

    Thank you very much. It is just insane that they lumped everyone together, saying we don’t need these meds for chronic pain, no matter what it is. They do not understand or even feel what we feel and if they did, they would cry like babies.

  9. HJ at 5:52 am

    I tried to use the “Become a Partner” submission on the website and it returned an error: “An Error occurred while submitting, please submit again.”

    I was hoping that was a link that pain patients could use but I wasn’t sure if that was a newsletter sign up or an option for organizations to partner with you but in any event, the submission doesn’t go through for me.

  10. HJ at 5:49 am

    Will there be a Facebook presence? It might help me stay updated. I rarely remember to check into a website regularly.