Patient Organizations Should Embrace the Challenges Ahead: The First Step is Unifying Our Movement

Patient Organizations Should Embrace the Challenges Ahead: The First Step is Unifying Our Movement

by Shaina Smith

shaina-smith

Shaina Smith

U.S. Pain Foundation is a nonprofit organization created by people with pain for people with pain. What is now the nation’s leading patient-advocacy force started out as a small support group in Connecticut. With a grassroots approach toward advocacy efforts and cultivating educational and empowering programs, the organization has never taken a position on political views. And it won’t.

But one thing U.S. Pain will do is express the realities facing people with invisible illnesses and chronic pain. We know that policy makers have the authority to impose laws that may have good intentions behind it, but unfortunately limit access to life-saving treatments. We know that political climates within each state drive votes toward some legislation and away from others. We also know that affordable healthcare, quality management, and treatment options are important to the chronic pain community.

U.S. Pain has been fighting for basic patient rights since its inception. Through the flagship program of the organization, the INvisible Project, brings visibility to the invisible, internal struggles of people living with chronic pain through a photojournalistic approach.  Sharing the stories of real people not only creates hope and further understanding, but also has proven to be an effective tool to make positive change for pain warriors.

The nation’s election results will not stop our endeavors. U.S. Pain plans to enter 2017 with more vigor and enthusiasm than ever before; state and national trends have depicted that this upcoming legislation session will bring with it a wave of proposed bills and regulations that will undoubtedly disrupt the pain patient’s journey toward much needed treatment options.

As a patient-driven organization, whose board members and directors all have at least one rare, complex and/or incurable pain condition, all our initiatives are built with the chronic pain patient’s best interest in mind. With 1 in 3 Americans riddled with chronic pain, U.S. Pain acknowledges the challenges that are ahead for people with pain. Its volunteers and directors have spent years battling societal stigma and educating lawmakers, caregivers and physicians with invaluable information surrounding the complexities of pain since the organization’s inception. Yet we are undeterred.

On the morning following the election results, the U.S. Pain team agreed that to secure the progress pain warriors have made so far, the organization will use its existing capacities and new innovative tools to leverage our cause. But we can’t do it alone. U.S. Pain is once again calling on patient-driven organizations and fellow pain warriors to unite. Now is the time to put our differences aside as we look at working diligently together to protect our access to the care we need and deserve. It is unclear how recent events will have an impact on the existing governing entities relating to patients, America’s healthcare system, and the way chronic pain is diagnosed, treated and managed. It is, however, clear that there must be an organized effort to ensure the rights of pain patients.

U.S. Pain Foundation continues to remain unbiased and optimistic following the elections. We’re hopeful that its existing and future campaigns will lift up the pain community to the next level of advocacy and awareness. If you are a caregiver, person living with pain, nonprofit organization which supports the vulnerable pain population or just an advocate for patient rights, know that you are not alone in this succeeding plane to validate, empower and mobilize people living with pain. We can and will transform the way our nation views chronic pain. We hope you will join our journey.

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Authored by: Shaina Smith

There are 5 comments for this article
  1. Randy at 6:50 pm

    I agree with Pops. We talk about about our pain but nothing is getting done. We need news coverage with the truth. I am sick and tired of being cut back at the doctors office. I have been disabled for years and have taken medicine not drugs to help with pain and suffering. Will a petition signed by pain suffers do any good? Please stand up for us in Washington!

  2. Shelley Callaghan at 4:38 pm

    My pain is 40% worse than before my Rheumotologist decreased my pain medication because the FDA & CDC is scaring the [edit] out of all of the DRS. Really their MALPRACTICE INSURANCE SCARED THEM BECAUSE THE FEDERAL GOVERNMENT REQUIRED ALL DOCTORS INCLUDING DENTISTS. I HAVE HAD THIS DR. FOR MORE THAN 10 YRS. & I NOW HAVE TO GIVE A URINE FOR DRUG TESTING BEFORE HE WILL WRIGHT MY PRESCRIPTIONS. THE OFFICE DOES SOME OF THE DRUG TESTING & THEN SENDS THE REST OUT TO A LAB. THE OFFICE SHOULD BE SENDING TO the LAB MY INSURANCE COVERS BUT NO -THEY ARE SENDING THEM TO ONLY 1 LAB FOR EVERYONE. I RECEIVED A EOB THAT MY INSURANCE WAS CHARGED $4034.00. FOR A URINE DRUG TEST. I AM TAKING THE BILL WITH ME TO MY NEXT DRS. APPT. If he wants me to give him another urine sample he can pay my bill!!!!!!

  3. Ml at 11:55 am

    What about the people that really need opiates to survive, will the DEA even with a Drs wish the patient needs then as all else has failed, You would think there is some room to compromise , How about patients that were. Permently disabled
    During surgery and caused interact able pain.
    Any one know about this? Last week in my pain Drs appointment has over 1000 patients knew nothing about what is to take place next year. I told them what I have learned on this site , they replied we will just send the insurance a letter that the patients need more, and that should take care of that, I said the insurance companies are in this also as they have said they will cut back 25 percent on there coverage. it is going to be a real mess next year and a lot of suffering for those that need it.

  4. POPS at 11:46 am

    While staying out of politics and keeping a conversation natural on both sides of the isle is a good practice in keeping the piece throughout the pain community. Advocating for awareness has fallen short from making an impact in government. Having Awareness Conferences, holding hands and singing Kumbaya is not going to change a thing. We need ACTIVISM and rally’s filled with pain sufferers and their families. We need national press coverage that everyone can see, not just those who subscribe to it. We need to stop letting our pain be an Anchor dragging us down or holding us back. Stop letting your pain be an excuse to not get involved, and start making it the reason and driving force of your activism.
    Finally, the US Pain Foundation needs to stop tiptoing around Washington DC like a whipped puppy dog. Don’t choose Democrat or Republican and continue to remain bias, but go after both sides of the isle because it’s not just one political party screwing us. It’s the entire federal government. If you want to create UNITY, you first need to create LEADERSHIP and action. The chronic pain community is and always has been looking for the leaders to show or tell them what to do. Many of us have tried to assume this responsibility and been shut down or just get frustrated. Here is US Pains chance to assume the leadership rolls and bring the pain community together. The problem is that they will never make it happen as long as they are sticking to their policies.

  5. Dave at 9:57 am

    The U.S. is to pluralistic to believe the pain community will have a united front. Whilst large numbers are important for social movements- and i dont doubt there may be large numbers united to improve pain care- much more than that is needed. Frankly, pain care organizations are lacking in vision and lacking in a dynamic energetic and ever evolving plan to tackle the issues in pain care. There views of the issues are too simplistic and uncritical of the fundamental issues in pain care. That is why splinter groups have formed and will continue to form to address issues in pain care
    Even leaders of the civil rights movement consulted with Gandhi- as they knew their plans werent enough to bring about change- and they had 750 protests across the country. I dont see evidence that pain care organizations have the humility and determination to bring transformative change. Most believe that with more biomedical research and better insurance and more freedom that pain care will become a paradise on earth They couldnt be more mistaken. And whilst they have some small accomplishments- it is only too clear that the voice of people in pain remains too muted and too distant to the powers that be. They were and are naive with regard to what they need to do to transform pain care in America. They lack the breadth and depth of knowledge to outclass those in positions in government and health care. And too many have been either coopted by our current system or disappointed and demotivated that their certain plans and beliefs didnt create the symbols of a new day for people in pain.
    If pain care organization are sincere about real change then take a god look at your cherished assumptions and practivces- they need substantial modification. It is yours truly who changed the narrattive on cures for pain and successfully called for lowering the prevalence of all pain conditions. Im the last person a pain care organization would ask to become involved-that should tell readers something about our pain care organizations.
    People in pain will need to walk the road in order to create a new path to a better destination. Pain care organizations are only too willing to walk down well trodden roads that lead to the same old familiar places- they are not trailblazers. They have forgotten the memory of freedom and they have forgotten how to dream.