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U.S. Pain would like to thank the 550 people in the 15 different countries that both attended or live-streamed the Take Control of Your Pain: Palm Springs event! It was an honor to be able to reach so many people! 

AbbVie Rheumatology Scholarship

The AbbVie Rheumatology Scholarship was created to honor exceptional students living with rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), psoriatic arthritis (PsA), or ankylosing spondylitis (AS), as they pursue goals of higher education. In doing so, we hope to further empower students to follow their dreams, accomplish their goals, and demonstrate excellence in all that they do. To learn more or apply, click here.
Suffer from CRPS? 
This Trial May Be For You!

You must be between the ages of 18 and 80. The Budapest Criteria is followed and you have 3 of the 4 following categories of symptoms:

o   Sensory symptoms- these include pain to light touch or pain from a pinprick

o   Vasomotor symptoms- these include temperature asymmetry (the affected area is colder or warmer than the other limb) as well as skin color changes in the affected area.

o   Sudomotor/oedema symptoms- these include swelling or any sweating changes (either the person could sweat more or less in the affected area)

o   Motor/tropic symptoms - these include decreased range of motion, or weakness, tremor or any changes in their hair/nails/skin. Again this is in the affected area
  • The treatment that is being trialed is called Neridronic Acid. The medication is now approved for use in Europe and the sponsor of this trial is trying to get it approved by the FDA here in the US.
If someone is interested in learning more or they might want to participate, please contact Kate O'Neil at  617-726-9391.

For more information, Click here!
Join U.S. Pain Foundation and partnering organizations in a New Campaign! 

In New York, the Step Therapy Coalition of which U.S. Pain is a part of, gained interest around step therapy through its Fail First February campaign. This initiative brings to light the existing legislation that has been introduced to offer patients the treatments they need as prescribed by their doctor. If you would like to contact your state representative concerning this initiative, please reach out to our Advocacy Team.

At the federal level, very important messaging was sent to our members regarding S. 483. The U.S. Senate Judiciary Committee had scheduled a vote on the bill, Ensuring Patient Access and Effective Drug Enforcement Act of 2015. Action was quickly taken by our advocates who recognized that treatments prescribed by physicians to patients play a crucial role in the lives of those living with chronic pain to alleviate some of their discomfort and improve quality of life. The bill was placed on Senate Legislative Calendar under General Orders. Calendar No. 368. 

Stay tuned as we include a social media campaign that any Advocate or member can join! Please FOLLOW the organization on Twitter today: 
@US_Pain 

Do you live in New York and want to join this campaign? Email:  shaina@uspainfoundation.org

March 1, 2016
Spring into Action!
March 2016
Dear Members and Fellow Pain Warriors,
 
U.S. Pain is so proud of everything we have accomplished so far, and it's only March! We have hosted several successful events including a Take Control of Your Pain event in Palm Springs, CA and the Points for Pain event. We have also been part of several more events, including several of our ambassadors testifying nationally and in their states, which we are extremely grateful for.

We would like to thank Tyler Cashman for starting the Points for Pain campaign to raise awareness and money pediatric pain. Tyler is the son of our Executive Director, Casey Cashman, who has lived with chronic pain since 2008. He has met many kids in pain and decided he wanted to make a difference, and empower these  individuals on their pain journey. Tyler's campaign has raised over $9,828 (so far!), which will all go to sending children in pain to a Pediatric Pain Camp this summer. We are so grateful to Tyler for his work and couldn't be more proud of his initiative and ability to make a difference in the lives of so many. 

We would also like to thank Joseph D'Angelo of New Jersey for organizing a tag day ay Oratory Preparatory School of Summit, New Jersey. The Day not only raised awareness to those living with chronic pain, but for helping raise more than $1,200. Thank you, Joe for all you did to make this happen. 

It is people like Joe and Tyler that remind us how important our mission is, and remind us we can meet our goals and truly make a difference.

U.S. Pain is busy this month, so please be on the look out for more events and opportunities to get involved, including planning ahead for our Pain Awareness Month! Read below to find out more.
 
Thank you for being a part of our mission - to improve the lives of those living with pain by validating chronic medical conditions and educating others. You are all pain warriors, and U.S. Pain is here to help.
 
Wishing you all a low-pain and high-spirits day,
Paul Gileno
            Founder & President, U.S. Pain Foundation

From Patient to Advocate: A Chat with Cindy Steinberg

Cindy Steinberg is National Director of Policy and Advocacy at the U.S. Pain Foundation and Chair of the Policy Council of the Massachusetts Pain Initiative. In April, 2015, she was appointed to the Interagency Pain Research Coordinating Committee (IPRCC), the highest ranking pain policy oversight committee in the US. In addition to her federal and state pain policy work, she has lived with chronic pain for many years and runs a support group in the Boston area for others with chronic pain. Steinberg spoke recently with Neil Andrews, Executive Editor of RELIEF, to discuss her own experience with chronic pain, her advocacy efforts to advance pain care and research, and what people can do to get involved to help raise awareness of chronic pain. Below is an edited transcript of their conversation. 

What is your own personal experience with chronic pain?
I had a business career that I loved managing the development of multimedia technology-based learning systems. I was working in the office one day and there were moving men present who were dismantling cubicles, since my company was moving to a new office. I went to retrieve a file from my filing cabinet, and unbeknownst to me, the movers had been placing cubicle walls against the back of my file cabinet. The file cabinet was very large, and I couldn't see that the cubicle walls were resting on it. I went to open a drawer, and all of a sudden the file cabinet started coming at me. I turned to get away, but I wasn't quick enough. The drawer struck me in the middle of my back, and then I was crushed underneath the cabinet and the walls, which severely damaged my back. This happened more than 15 years ago, and the result is that I'm living with pretty serious pain-there hasn't been a day that's gone by since the accident without pain.

To continue reading,  click here.
Take Control of Your Pain:
 New York

When: Sunday, April 3rd
Time: 10:00 AM
Where: 80 West Red Oak Lane
Harrison, New York 

Please click here  to attend or to str eam the event live from home!
ADVOCACY UPDATES:
U.S. Pain wishes to thank those advocates who have been responding to our calls to action. We are hopeful that a number of these bills will become law for the greater good of those living with rare, chronic and complex pain conditions.

Indiana Senate Bill 41 has seen great progress as the House Insurance Committee passed the bill, which now heads to the House floor soon. U.S. Pain is asking advocates in Indiana to make phone calls, send emails and post social media content that requests the House votes YES to SB 41. You can FIND YOUR LEGISLATOR HERE.
ABOUT THE BILL: SB 41 would place limits on an insurance industry protocol known as step therapy, which can require patients to try and fail on a series of medications before being allowed to have a medication their doctor has prescribed.

Connecticut Pain Ambassador Emily Lemiska was joined by Senior State Advocate Wendy Foster and Director of State Advocacy Shaina Smith towards the end of February to testify before the Public Health Committee on SB 129, An Act Concerning Insurance Coverage for Abuse-Deterrent Opioid Analgesics. The testimony presented included the perspective of a pain patient and the need to balance access to treatment from legitimate pain patients as well as educating and making the community aware of abuse addiction.
  
Missouri has also been progressive in moving House Bill 2029. The bill passed out of the House Select Committee on Social Services on February 25th by a vote of 10-0 and we are anticipating it heading to the House floor within the next two weeks. In the meantime, we are asking our advocates to reach out to their State Representatives and ask that they support this legislation. FIND YOUR LEGISLATOR HERE
ABOUT THE BILL: HB 2029 adds five new sections relating to step therapy, provisions which would make it easier for the patient and healthcare provider to understand the process by which to follow in order to avoid step therapy.
OUR POSITION: U.S. Pain Foundation is in support of this bill as it provides transparent steps for healthcare professionals to override step therapy protocol. 

U.S. Pain Foundation submitted a letter to the Kentucky Chairman of the Senate Health and Welfare Committee as well as its members, requesting that the committee support Senate Bill 134, an Act relating to biological products. Introduced by Senator Ralph Alvarado, the legislation defines biological products, but more importantly, ensures beneficial communications to take place between the pharmacist and prescriber.

Michigan's Senate Health Policy Committee Chair and members were given a letter from the organization, noting that it opposes the Senate Substitute for House Bill 4812. U.S. Pain is urging the committee to support HB 4812 with prescriber communication language included. The bill was referred to the Committee of the Whole with a substitute.
 
House Bill 18 in Utah is legislation that the organization is tracking and opposes, as it could prove detrimental to those patients who rely on their life saving medication. U.S. Pain is concerned with HB 18 as it revokes the Medicaid Preferred Drug List (PDL) exemption for psychotropic drug classes which includes anti-anxiety, anti-depressant, anti-conversant/mood stabilizers and other remedies used to treat patients from all walks of life. The house has passed the legislation and it has been referred to the Senate.

An Act relating to Combating Opioid Abuse in Vermont saw U.S. Pain respond to the Senate Committee on Health and Welfare. Senate Bill 243 pertains to abuse-deterrent formularies, medications that cannot be abused to achieve a "high".
OUR POSITION: While ADF medications are not the only tools that should be used to stem the rising tide of prescription drug abuse, the technology should be on the front line in that fight.

Ohio saw advocates participate in a day intended to further highlight the need for step therapy legislation as a grassroots effort, spearheaded by the Ohio Step Therapy Coalition of which U.S. Pain is a member, met with legislators to discuss Senate Bill 243 and the newly introduced companion bill, House Bill 443. Senate Bill 243 does not prohibit step therapy, but sets up conditions for it's use. Such conditions include that insurers have a clear and quick process for physicians to request an override to step therapy and that step therapy decisions be based on medical guidelines developed by independent experts. Although Ohio Pain Ambassadors and Advocates have been staying updated as to these efforts, we are looking to further expand our outreach to the media and would like to gather patient stories from Ohio concerning Step therapy. If you have a step therapy story, please email: shaina@uspainfoundation.org
Light Up The Landmark

U.S. Pain is proud to announce a new addition to our Beautify in Blue campaign that takes place during September's Pain Awareness Month, we are going to  Light Up The Landmark Lets turn the night sky blue on  Friday, September 9th .  We are asking for everybody to reach out to office buildings, town halls, monuments, bridges, town squares, and any other locations you can think of, to turn their lights blue on  September 9th.  By turning their lights blue it will help unite the over 100 million Americans who live with chronic pain. If you are interested in helping turn the sky blue on September 9th, please contact Casey Cashman at:  casey@uspainfoundation.org
 
State Proclamation Program: Can YOU Bring Pain Awareness Month to your State, City or Town?

Yes! U.S. Pain Foundation has been extremely active in ensuring our communities, made up of physicians, caregivers, lawmakers and fellow pain warriors, know that September is Pain Awareness Month. How? Through awareness events, existing programs, outreach and grassroots efforts, empowering patient workshops and the like. But we have also been calling upon our local governing bodies as well as our Governor's offices to officially and publicly recognize the pain community in September.

That is why U.S. Pain is, once again, providing our Pain Ambassadors, Advocates, volunteers and members the opportunity to file an already pre-written proclamation. The proclamation designates September as Pain Awareness Month, but it does so much more. It recognizes at the state and local level the importance to continue conversations that surround the pain community. It is another opportunity to let our voices be heard to eliminate the stigmas associated with chronic pain. Will you join this program within our Pain Awareness Month Campaign?

HOW TO JOIN IN THIS EFFORT: Send an email to  shaina@uspainfoundation.org stating that you would like to take the lead in your state to file the proclamation request. U.S. Pain has steps that will be sent to you that makes the filing process easy! By following the steps, the organization can keep a clear tracking system of who is filing on behalf of the state. If someone has already been assigned the proclamation filing designee, you can STILL participate! We encourage that you file the request to your municipal government (town council, Mayor's office, Board of Selectmen). Support will be provided for you along the way to ensure you feel comfortable with the proclamation request. 
 
Amazon will donate 5% of your total purchases to the U.S. Pain Foundation. Shop Amazon Smile today! 


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