TRIO National 
Member E-News  
January 2019



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TRIO member and
Heart Transplant Hiker
On A Mission to Honor His Heart Donor
certainly lives that 'daring adventure' . . . 
 
75 year old author, Ed Linz, with a heart transplant way back 25 years ago in 1994, took on yet another challenge - climbing Mt. Kilimanjaro!  
   
Hiking with Monica (donor) on Appalachian Trail
You can read Ed's many hiking and climbing endeavors in honor of his donor, Monica, on the TRIO web site at  http://trioweb.org/images/files/resources/downloads/TRIO_Kilimanjaro_info.pdf  
 
TRIO followed Ed via Twitter on-line . . .
On January 13, 2019 Linz began his quest to be the first heart transplant patient (and certainly the oldest) following the Lemosho Trail on a 8-day trek to the Mt. Kilimanjaro summit.   
 
Yesterday, Ed had to make a difficult but wise decision as you can see in these updates via twitter @edlinz65 :
 
 
TRIO salutes Ed for living life to his fullest with this inspiring challenge, wishing him a safe and healthy trip home.  Wonder how many readers will post their support on Ed's Twitter or Facebook sites (use 'edlinz65' to search for those). 
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TRIO is all about Advocacy and below you will find two opportunities for personal action in support of that mission.   
I've sent my letter, will you? 
PS: I was surprised in posting this action challenge  to my Facebook account (an easy click from that call to action site) to see that several non-transplant related friends did join the campaign and wrote using that resource.  Maybe you can multiply your efforts by doing the same?   
Certainly a lot easier way to support our cause than climbing Mt. Kilimanjaro!
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TRIO president
Celebrating my 25th year with a VERY successful heart transplant 
GleasonJim@aol.com
(609) 877-4493
Call to Action to protect your Part D
prescription drug coverage for immunosuppressant medications
Your Action needed by
January 25th


From our TRIO Public Policy committee chair, Rodger Goodacre, who participated with the lobbyist firm in personally visiting a half dozen legislative offices 'on the hill' this week: "It was a fun day, sharing the impact this issue has on so many patients, many of whom are organ transplant recipients like myself.  Having put that face of the issue before them in person, now its time for others to make their own voices heard by writing using this easy tool linked below.  Together we can continue to make a difference - write today!"
   
In the past, with the support of TRIO and our coalition p
artners, the Partnership for Plan D has helped generate thousands of public comments to Congress, CMS, and MedPAC in support of the current six protected classes policy. And now, it is more important than ever that the patient voice is heard as the latest proposed rule could do irreparable damage to this vital protection.
 
      Tell CMS: When You Limit Drug Choices, You Threaten Lives
 
One of Medicare's key patient protections is under threat by a new proposal from the Trump Administration. Feedback from the public will be critical in deciding whether or not they move forward - that's why it's essential that you let your voice be heard.
 
 
When Congress designed the Medicare Part D program, it ensured that the full range of six classes of critically important drugs - medications for patients with mental health conditions, epilepsy, Parkinson's Disease, lupus, HIV/AIDS, cancer, and organ transplants - would be guaranteed on all health plans for the patients who need them. In short, the 'Six Protected Classes' policy has long stood as a guarantee to patients that their access to all available medications for the most serious diseases would never be in doubt.
 
Today, that policy is under threat from a proposal by the Centers for Medicare and Medicaid Services (CMS). Under the proposed rule, CMS seeks to advance an extensive set of exceptions to the Six Protected Classes policy - far beyond what Congress has previously allowed. Under these changes, thousands of Medicare beneficiaries taking these vital medications could be forced onto an entirely new drug regimen and be left to deal with any complications that such a change would bring.  
 
 
Please follow the link and take just two minutes to tell CMS to keep the existing Six Protected Classes - because when you limit drug choices, you threaten lives.
  1. Additionally, the Partnership will be active in promoting the grassroots comment portal on social media. To that end, we would encourage you to send out some of the following tweets to direct your Twitter followers to our Action Center: 
  • A new proposal from CMS would undermine one of Medicare's key patient protections. Tell CMS: when you limit drug choices, you threaten lives: https://bit.ly/2CmuIN6 #ProtectMedicareRx
  • Medicare patients with with organ transplants could lose access to their medications under a dangerous new proposal from CMS. Take two minutes to tell the agency: don't change Medicare's Six Protected Classes: https://bit.ly/2CmuIN6 #ProtectMedicareRx
  • A new proposal could force thousands of Medicare beneficiaries onto an entirely new drug regimen. Tell CMS: when you limit drug choices, you threaten lives:https://bit.ly/2CmuIN6 #ProtectMedicareRx
Just click here to link to the Action Center where you can easily send a letter of support to Washington:
ACTION CENTER

UNOS Call for public comment cycle coming

The Org
an Procurement and Transplantation Network (OPTN)'s spring 2019 public comment cycle starts January 22 and runs through March 22. UNOS will send a subsequent email with links to where TRIO and our members can find public comment proposals. We invite TRIO to submit feedback on the proposals no later than March 22, 2019.
 
  • Guidance on Effective Practices for Broader Distribution
  • Modify HOPE Act Variance to Include Other Organs
  • Clarifications on Reporting Maintenance Dialysis
  • Eliminate the Use of Donor Service Areas (DSAs) in Thoracic Distribution
  • Eliminate the Use of Regions in VCA Distribution
  • Removal of DSA and Region from Kidney and Pancreas Allocation (concept paper)
  • Split Liver Variance
  • Expedited Liver Placement
  • Ethical Implications of Multi-Organ Transplants (white paper) 
Stay Connected with TRIO on-line at http://TRIOweb.org or http://TRIOwebPTC.org and: