The Coalition of 50 State Pain Advocacy Groups (C-50)

The Coalition of 50 State Pain Advocacy Groups (C-50) advises that the Senate Finance Committee wants feedback on how Medicare/Medicaid program incentives can be used for beneficiaries with chronic pain that minimize the risk of becoming addicted to opioids.  YOU MUST RESPOND BY TOMORROW:  MONDAY EVENING, FEBRUARY 19, 2018.  (The deadline was extended from 2/16/18). If you would like to sign onto our C-50 response, go  Coalition of State Pain Advocacy Groups C50

Many states have passed or are about to pass legislation to restrict opioids.  Pain patients need to work together at the state and federal level to be heard.  The C-50 was created last November by chronic pain patients and their advocates to coordinate pain advocacy push back across the US.  Members from every state are finding us, and we are slowly getting up to speed.  But with Medicare/CMS and FDA docket comments due soon, we need to kick things in high gear.  Currently we are on Facebook, but we plan to expand soon.  We are also supporting Claudia Merandi and the national Don’t Punish Pain Rallies to take place across the country on April 7, 2018.  https://www.facebook.com/groups/982163208603921/

 

Many of us are just an appointment away from losing our pain medications.  Our doctors aren’t prescribing, our insurers are denying claims and coverage and pharmacies can’t or won’t fill scripts.  We are all very concerned about the DEA cuts in manufacturing and how that might affect us?  Yes, you can help.  Please ask your loved ones and your doctors and clinicians to  join us.  With many surgeons now using just nerve blocks and Tylenol for serious surgeries many are suffering.  Even cancer and Palliative Care patients often can’t obtain relief.  Are you or your loved ones going to be next?  Please join us now! 

 

Valorie Padgett Hawk/C-50 – Director: I used to work for Congress and in other political arenas, until I was hit by a truck. I created all 50 state groups in one long night and have been continually tracked, shut out and shut down by Facebook. I have been diagnosed with Syringomyelia, TOC, and a host of other conditions.

 

Claudia Merandi is a long time sufferer of Crohn’s Disease, patient advocate, author and founder and national spokesperson for the nationwide ‘Don’t Punish Pain’ rallies that will protest in 48 states (come on AK and HI!) on April 7, 2018, 12 pm EST, at your state Capitol.  

 Coalition of State Pain Advocacy Groups C50

 

Email:  C-50painadvocacygroups@outlook.com

Twitter: @C50painadvocacy

 

 

 #SenFinCmDontKillUS 

#MedicareUwillKillus 

#patientsNOTaddicts

#treatpain 

 

 

 Coalition of State Pain Advocacy Groups C50

Arizona- https://m.facebook.com/groups/135007190540246

 Arkansas-https://m.facebook.com/groups/404751416609703

 Calif-https://m.facebook.com/groups/150742585686489

 Colorado-https://m.facebook.com/groups/1744392662536582

 Connecticut-https://m.facebook.com/groups/129571544377862

 Delaware-https://m.facebook.com/groups/189488521465472

 Florida-https://m.facebook.com/groups/170756076994374

 Georgia-https://m.facebook.com/groups/305920919904406

 Hawaii- https://m.facebook.com/groups/550357018635305

 Idaho-https://m.facebook.com/groups/302079250310260

 Illinois-https://m.facebook.com/groups/2066250963607711

 Indiana-https://m.facebook.com/groups/1794893274136828

IOWA- https://www.facebook.com/groups/124605134986680/?ref=group_header

 KANSAS- https://www.facebook.com/groups/1942196802711456/?ref=group_header

 KENTUCKY- https://www.facebook.com/groups/1475682829153225/?ref=group_header

 LOUISIANA- https://www.facebook.com/groups/151120515524554/?ref=group_header

 MAINE- https://www.facebook.com/groups/2045050728855460/?ref=group_header

MARYLAND- https://www.facebook.com/groups/1937582129824953/?ref=group_header

 MASSACHUSETTS-  https://www.facebook.com/groups/323053438196967/?ref=group_header

 MICHIGAN- https://www.facebook.com/groups/1962209550768029/?ref=group_header

MINNESOTA- https://www.facebook.com/groups/162677081012763/?ref=group_header

 MISSISSIPPI- https://www.facebook.com/groups/1975897542733630/?ref=group_header

 MISSOURI- https://www.facebook.com/groups/1779963392075209/?ref=group_header

 MONTANA – https://www.facebook.com/groups/1704731446216604/?source=create_flow

NEBRASKA- https://www.facebook.com/groups/851670138327009/?ref=group_header

NEVADA- https://www.facebook.com/groups/1807165492689446/?ref=group_header

 NEW HAMPSHIRE- https://www.facebook.com/groups/188390171739572/?ref=group_header

 NEW JERSEY- https://www.facebook.com/groups/178655819388850/?ref=group_header

 NEW MEXICO- https://www.facebook.com/groups/149261292464768/?ref=group_header

 NEW YORK- https://www.facebook.com/groups/164920487575791/?ref=group_header

 NORTH CAROLINA- https://www.facebook.com/groups/146410462789765/?ref=group_header

 NORTH DAKOTA- https://www.facebook.com/groups/917520058423309/?ref=group_header

 OHIO- https://www.facebook.com/groups/2007686546178479/?ref=group_header

 OKLAHOMA- https://www.facebook.com/groups/152627342026629/?ref=group_header

 OREGON-https://www.facebook.com/groups/155007831921856/?ref=group_header

 PENNSYLVANIA- https://www.facebook.com/groups/2078120209140820/?ref=group_header

RHODE ISLAND- https://www.facebook.com/groups/151487875474613/?ref=group_header

 SOUTH CAROLINA- https://www.facebook.com/groups/301454943704688/?ref=group_header

 SOUTH DAKOTA- https://www.facebook.com/groups/874010129425126/?ref=group_header

 TENNESSEE- https://www.facebook.com/groups/146055182828803/?ref=group_header

 TEXAS- https://www.facebook.com/groups/1177435779056816/?ref=group_header

 UTAH- https://www.facebook.com/groups/1815503385413843/?ref=group_header

 VERMONT- https://www.facebook.com/groups/1497834400333103/?ref=group_header

 VIRGINIA- https://www.facebook.com/groups/1790377237702841/?ref=group_header

 WASHINGTON- https://www.facebook.com/groups/WASHPAG/?ref=group_header

 WEST VIRGINIA- https://www.facebook.com/groups/382807698842288/?ref=group_header

 WISCONSIN- https://www.facebook.com/groups/346769829125534/?ref=group_header

 WYOMING- https://www.facebook.com/groups/255679968296680/?ref=group_header

 

https://www.finance.senate.gov/chairmans-news/hatch-wyden-seek-feedback-to-improve-medicare-medicaid-responses-to-opioid-epidemic-

FEBRUARY 05,2018

Press Contact:

Katie Niederee, Julia Lawless (202)-224-4515

Hatch, Wyden Seek Feedback to Improve Medicare, Medicaid Responses to Opioid Epidemic

Finance Committee Leaders Request Stakeholder Input to Address Opioid Crisis

WASHINGTON – Senate Finance Committee Chairman Orrin Hatch (R-Utah) and Ranking Member Ron Wyden (D-Ore.) this week requested feedback on how to improve Medicare, Medicaid and human services programs responses to the opioid epidemic. 

“While the impact of the opioid epidemic on [Medicare and Medicaid] presents many challenges, it also provides the Committee the opportunity to evaluate how these programs have adapted to the changing needs of the population regarding pain management and substance use disorders,” Hatch and Wyden wrote in a letter. “We are interested in policy recommendations along the continuum that spans from addressing the root causes that lead to, or fail to prevent, opioid use disorder and other substance use disorders to improving access to and quality of treatment.” 

Responses will be posted on the Finance Committee’s website.

Opioid prescriptions made up $4 billion in Medicare Part D spending in 2016 and services and care for those with opioid use disorders amounted to $9 billion in Medicaid spending in 2015. 

The Senate Finance Committee, the committee with the largest jurisdiction in either House of Congress, oversees more than 50 percent of the federal budget and has jurisdiction over large portions of the American healthcare system, including Medicare, Medicaid and CHIP. 

The full letter can be found below: 

As Chairman and Ranking Member of the Committee on Finance (“the Committee”), we recognize the ongoing need to address the opioid epidemic that is devastating individuals, families, and communities throughout the country. Opioid-related emergencies and deaths continue with staggering frequency. The epidemic afflicts individuals regardless of age, socioeconomic status, and geography. 

Accordingly, the opioid epidemic has significant impact on a number of programs that are within the Committee’s jurisdiction. In 2016, one in three Medicare beneficiaries received at least one opioid prescription, resulting in over $4 billion in Part D program spending. In 2015 Medicaid covered three out of 10 individuals with opioid use disorder, and, in 2013, spent over $9 billion on services for individuals suffering from opioid use disorder. States across the country have also seen large spikes in foster care in recent years placing significant strains on state child welfare agencies. Approximately 92,000 children were removed from their home in FY2016 because at least one parent had a substance use issue. The opioid epidemic also has an impact beyond federal and other health and human services spending, with a 2016 academic study pegging the economic cost in terms of lost productivity at nearly $42 billion in 2013 alone. 

While the impact of the opioid epidemic on these mandatory spending programs presents many challenges, it also provides the Committee the opportunity to evaluate how these programs have adapted to the changing needs of the population regarding pain management and substance use disorders. We are committed to assessing available policy options to determine appropriate policy change, and we ask that your organization assist us in this endeavor. We are interested in policy recommendations along the continuum that spans from addressing the root causes that lead to, or fail to prevent, opioid use disorder and other substance use disorders to improving access to and quality of treatment. Specifically, we ask for feedback on any or all of the following questions to inform the Committee’s deliberations: 

  1. How can Medicare and Medicaid payment incentives be used to promote evidence-based care for beneficiaries with chronic pain that minimizes the risk of developing OUD or other SUDs? 
  2. What barriers to non-pharmaceutical therapies for chronic pain currently exist in Medicare and Medicaid? How can those barriers be addressed to increase utilization of those non-pharmaceutical therapies when clinically appropriate? 
  3. How can Medicare and Medicaid payment incentives be used to remove barriers or create incentives for beneficiaries to access evidence-based prevention, screening, assessment, and treatment for OUD and other SUDs to improve patient outcomes? 
  4. Are there changes to Medicare and Medicaid prescription drug program rules that can minimize the risk of developing OUD and SUDs while promoting efficient access to appropriate prescriptions? 
  5. How can Medicare or Medicaid better prevent, identify and educate health professionals who have high prescribing patterns of opioids? 
  6. What can be done to improve data sharing and coordination between Medicare, Medicaid, and state initiatives, such as Prescription Drug Monitoring Programs? 
  7. What best practices employed by states through innovative Medicaid policies or the private sector can be enhanced through federal efforts or incorporated into Medicare? 
  8. What human services efforts (including specific programs or funding design models) appear to be effective in preventing or mitigating adverse impacts from OUD or SUD on children and families? 

We ask that you focus your recommendations in the areas that increase the likelihood of Committee action, including that your ideas are within the Committee’s jurisdiction, are fiscally responsible, and can generate bipartisan support. 

We appreciate your attention to this request and thank you for assisting the Committee in its effort to provide relief from the scourge of the opioid epidemic.

6 Responses

  1. I am 66 and not proficient on the computer. If you don’t belong to Facebook, all of these advocacy groups are unavailable to you, and a lot of us who are older and have possibly more pain conditions can’t participate!

    I tried joining Facebook and didn’t know how to use it (as embarrassing as that is to admit). I just had them sending me possible “friends” I didn’t know to connect with. And then the deadlines on these things (1day) are atrocious. And the designer of the 50 state advocacy groups on Facebook, mentioned how she was shut out and shut down by them. So what are we supposed to do?

    Plus, CMS put out Proposals for modifying or restricting prescribing oipioids and/or doses with links for comments. THE LINKS WERE DEAD, AND STEVE COULDN’T EVEN GET http://www.regulations.gov to open. I couldn’t either. Then I tried on another day, and I got on that site and did a thorough search and couldn’t find the proposal. One time it came up 0, the next time 1,295 Proposals!

    So what’s the point??? Dr. Jeffrey Fudin said “where are the voices of the pain patients?” WELL, THEY HAVE BEEN SILENCED!!!!

    I have CRPS, herniated disc, and arthritis so bad in my one hip that I can’t walk, braces on both legs from a crush injury, AND HURT SO MUCH, AND THE STRESS OF TRYING TO DO THIS ALMOST DID ME IN!!!

    IT SEEMS LIKE EVERYTHING AND EVERYONE IS AGAINST US!

  2. If there is a deadline, tomorrow, where has this info been??

  3. psss,,,,EXCELLENT EXCELLENT IDEA,,, btw,,,to banned us alllll together or at least a way we can get all of us under 1 roof,,,this is a great tool to have….jmo,,maryw

  4. Can we write to these people,,ie,,Medicaid,,,,if we are NOT on Medicaid yet,,,,for I am sure,,,I will end up on Medicaid at some point,,,just asken,,,maryw

  5. Thank you Steve for helping us spread the word!! If we don’t speak up now, it’s going to be a heck of a lot harder after being tapered and/or losing pain relief completely. Please join your state pain advocacy group and get to work!!

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